Susan's Place Transgender Resources

I was going to make a blog but I canned that I'm just going to post here. If you don't want to read it I ain't making you!

I do so to help me and to make sure that you all know what is going on.
I think that is important because this is a big site and has lots of staff and lots of work and Susan and I are real people with real everyday issues.

In many ways as Forum Admin I am the face, but the Site is Susan's and I am very proud that she has allowed me to be part of an incredible venture.

I met my Cancer support nurse today, lovely woman, very supportive. I am being fast tracked both because I am in a situation where I need to be fast tracked and I am otherwise fit and healthy, so co-morbidities are not an issue.

I start with radiotherapy on my neck which will burn my throat both internally and externally but I have been assured that as far as hair removal it is a damn sight more effective than electrolysis. I save money! I am also hit with three rounds of Chemo, I am not sure of the timing as yet.

I am having a PEG feeding tube put into my tummy over the next week or so I can get enough nutrients into me while my throat is damaged. I'm good with that.

I expressed my fear of being misgendered, insulted, ignored, whatever because I am a transexual female. I have been assured that I am and will be treated with upmost respect and if I feel I have been subject to any disrespect a very heavy hammer is available.

I get my face mould in the next two weeks, after therapy I can keep it! That will be a party piece!!
I'm feeling good.

I have been warned by everyone that this is a really hard and severe, brutal treatment.

I told them that Peter could not have done it.

I told them that Cindy is a strong woman who wants to live and I shall.
I also started 3 months sick leave, in Australia we have fully paid sick leave and I have well over a year and so far PET scans, MRI, CTs x 2 have cost me nothing.

My therapy is fully covered by my Government insurance as well.

I am going to buy a wig next week to be ready for when I lose my lovely hair

We are planning an overseas trip in 4-5 months so be careful I may visit you!!

Love you all

Cindy

Gosh Cindy, I'm really so sorry you have to go through this but it's good you can treat it and you have a great chance at full recovery by the sound of it. Lotsa love and hugs!

Quote from: Cindy on June 17, 2016, 05:13:30 AM
... face mould...

uhhhh...what the...??

VERY interested in everything you have to report. I've lost too many to cancer and I'm glad that you're brave enough to do what needs to be done. Stay brave!

Just remember, everyday, one small step, and with your virtual family cheering from the sidelines, you have heaps of support.

[big hugs]

Kia Kaha.

Sno

Quote from: Ms Grace on June 17, 2016, 05:34:48 AM
Gosh Cindy, I'm really so sorry you have to go through this but it's good you can treat it and you have a great chance at full recovery by the sound of it. Lotsa love and hugs!

Quote from: Cindy on June 17, 2016, 05:13:30 AM
... face mould...

uhhhh...what the...??

Mold/Mould depends on your country.

I need the radiotherapy directed to the tumour site only so they strap you down and place a warm polyurethane sheet across your face and torso so as it cools down and moulds itself to your features. It is then used to strap you down so that the beam goes to the same place each time.

It is said that making the mould is unpleasant.

I have to say I have had no pleasant experience in this trip so far! But Tracey my support nurse is lovely.

Thanks people I need to talk about it just to keep my head together.

If it gets too much don't read!!

I have my lawyer on Wednesday to update my will and I have a medical directive in place. That is important it says what you don't want done to you if you cannot respond.

For me if in a non retrievable coma for example to turn off the machines.

Funny thing is I feel very healthy and fit. And people comment on it. You can't have cancer you look great!

Ah yes it is in my larynx, you can't see it, but it is starting to show as a lump in my right neck.

You are approaching this with such courage and determination! 
Amazing!

That mould does sound unpleasant but that will be an awesome conversation piece to hang on the wall once you get through this.
Know that we are here for you, perhaps virtually, but definitely in spirit! 


Sent from my iPhone using Tapatalk

Thanks Amber, I will face this as I approach life post transition.

Full on.

I did't want my larynx removed as communication is important to me.

I may be a crying mess begging for euthanasia in a few months but I will deal with that then.

I was told to enjoy food and drink this week because as soon as I get hit my taste buds are killed. So I enjoyed a nice chicken dinner and I am having lovely glass of malt whiskey before bed  ^-^

I am quietly following along, I'm not the religious type and doubt there to be some sort of supreme being but I find myself crying and praying for you every day and night  :eusa_pray: 

I've lost friends and family to cancer in the past but you have been my sister and best friend for 7 years and I am having a bit of trouble coping

I just want you to be cured, get well and heal up

Love you Sis

Hugs 

Virginia,

You are my sister and we have been so close for so long.

Stop worrying Honey!

I do not have any fat female friends, and I ain't giving up until the fat lady sings.

(apologies if anyone gets offended)

Big hug! You're already on an overseas trip! You are aware that Australia is adrift, right?  :laugh:

Hugs, Devlyn

Cindy, thank you for keeping us updated. Don't worry about anything you post being too much: if you can go through it, we can damn well read about it and be there for you as best we can.

Find the joy in every day... we all need to do this, and you remind us of that. You have an amazing spirit.

Cindy, you have all my best wishes for the swiftest of recoveries. X

Quote from: Cindy on June 17, 2016, 06:22:55 AM
Thanks Amber, I will face this as I approach life post transition.

Full on.

I did't want my larynx removed as communication is important to me.

I may be a crying mess begging for euthanasia in a few months but I will deal with that then.

I was told to enjoy food and drink this week because as soon as I get hit my taste buds are killed. So I enjoyed a nice chicken dinner and I am having lovely glass of malt whiskey before bed  ^-^

Cindy,

You are showing great bravery in the face of a truly grave situation. You are planning things well it sounds like.

Many people worldwide have beaten this. I am sure you are aware there are no guarantees. However feeling realistically optimistic helps loads I feel sure dear. And it sounds to me like you are doing this.

You really hit home with me just now with your point about euthanasia. You posted some nice comments to help ME out a month or so ago about this. For me I have at this time been able to solve my emotional stresses although I myself retain the right to euthanasia for ME. But I am emotionally doing super well now. You really have hit home for me how blessed I am in my 50s to have super physical health when I read just now about your cancer condition.

Cindy, PLEASE get well. No euthanasia. Simply get well. That's it.

Jennifer xx

Cindy,

You were one of the people that helped me when I hit the wall. I have learned so much from you, such as face your fears. You are handling this as you handled everything since our paths crossed. I am wishing you the best and sending you positive thoughts,

Rachel

Best wishes and all the best of luck.. and 1 big Hug from across the big puddle..

Cindy, sorry for being late to respond. You have far more courage and strength then I have and inspiring to all of us. I hope and pray you get over things quickly. Always know we got your back.
Lova sis. Hugs
Mariah

Best wishes & good luck, stay strong & kick cancer's ass!

That sounds grueling but the sooner it is done the better, yes?

Quote from: Cindy on June 17, 2016, 06:02:19 AM

Ah yes it is in my larynx, you can't see it, but it is starting to show as a lump in my right neck.

How did you discover it?

I needed some time to process what I've just read I just couldn't believe it, I hoped I misunderstood something... I lost my grandmother, two uncles from my mother's side and almost lost my mother to cancer as well so when I saw Cindy and cancer in one sentence I was terrified.
I wish you all the best and the fastest and best recovery possible.
Cindy, you continually inspire us, even now when you face such hardships. Your attitude is amazing.
You changed so many lives for the better you deserve all the support you can get, the least we can do is read what you wish to share with us, I'm just sad that I can't do much more.
Stay strong!

Quote from: Cindy on June 17, 2016, 05:13:30 AM
I was going to make a blog but I canned that I'm just going to post here. If you don't want to read it I ain't making you!

I do so to help me and to make sure that you all know what is going on.
I think that is important because this is a big site and has lots of staff and lots of work and Susan and I are real people with real everyday issues.

In many ways as Forum Admin I am the face, but the Site is Susan's and I am very proud that she has allowed me to be part of an incredible venture.

I met my Cancer support nurse today, lovely woman, very supportive. I am being fast tracked both because I am in a situation where I need to be fast tracked and I am otherwise fit and healthy, so co-morbidities are not an issue.

I start with radiotherapy on my neck which will burn my throat both internally and externally but I have been assured that as far as hair removal it is a damn sight more effective than electrolysis. I save money! I am also hit with three rounds of Chemo, I am not sure of the timing as yet.

I am having a PEG feeding tube put into my tummy over the next week or so I can get enough nutrients into me while my throat is damaged. I'm good with that.

I expressed my fear of being misgendered, insulted, ignored, whatever because I am a transexual female. I have been assured that I am and will be treated with upmost respect and if I feel I have been subject to any disrespect a very heavy hammer is available.

I get my face mould in the next two weeks, after therapy I can keep it! That will be a party piece!!
I'm feeling good.

I have been warned by everyone that this is a really hard and severe, brutal treatment.

I told them that Peter could not have done it.

I told them that Cindy is a strong woman who wants to live and I shall.
I also started 3 months sick leave, in Australia we have fully paid sick leave and I have well over a year and so far PET scans, MRI, CTs x 2 have cost me nothing.

My therapy is fully covered by my Government insurance as well.

I am going to buy a wig next week to be ready for when I lose my lovely hair

We are planning an overseas trip in 4-5 months so be careful I may visit you!!

Love you all

Cindy

Wow! Cindy, you really are a strong woman to endure all of that. You have to be strong. A weakling could never face these type of treatments and come out with a smile on their face together with an "I can do it!" outlook on life. You amaze me, Cindy. Nothing, not even cancer, can drag you down! Hey, when you come visit us, may I have some of your charismatic charm? Lol. Cause I love it!

Cindy,
I am sorry to see that you are going through this but it is a blessing to see that you are a strong woman and are facing this with a remarkable attitude. I hope all goes well and that you come through this just fine.

I have enjoyed our conversations and cherish having you for a friend. I hope to see your next update kiddo.

Thanks everyone for your support.

The idea of this thread is a relief valve for me and to keep people informed, and maybe educated.

I certainly do not want sympathy!

T.K.G.W brought up a good point of how did I know etc. This is highly pertinent because if we had known a lot earlier things could be different, certainly in treatment options.

Just about all mouth and throat cancers are diagnosed late and that makes treatment options limited and aggressive.

In my case my voice had been hoarse for about 5 weeks and the standard medical protocol (which few follow) is to get checked by an ENT specialist at that time. The examination involves placing a very thin camera tube into your throat so it can be visualised. As soon as the lump was seen it is then surgery under a GA to take a biopsy and lots of pictures.

But it is obvious this has been around for some time - much longer than five weeks. The things I ignored, a transient sore throat for about 12 months that did not involve lymph node swelling. An on going earache that never quite went away and never quite got bad. A pain down the middle of my face along the 'nose' line.

The later two should have been realised (by me) as they both indicate pressure on the cranial nerves and that is exactly where the tumour is. The transient sore throat with no nodal insolvent was something I had checked during routine medical appointments but I never mentioned the other symptoms so it was missed. 

Most signs of cancer are quite mild and ignored. Blood in your faeces may mean nothing. or bowel cancer - and it is easily treated if got too early. Lumps in your breast we should all know about and if  we do not know how to do a breast examination please ask you doctor to show you how.

In Australia we receive free bowel screening kits and free mammograms if you are over 50. Use them.

Bruising, this is the area I am use to - my work area! easy bruising, bleeding from your gums, unexplained tiredness, night sweats, change in diet, lack of motivation.

Dizziness, lack of concentration or sudden changes in coordination and motor skills, prolonged unexplained headaches.

Many people don't go and checked because we are 'embarrassed'. I don't want to use a stool kit to send my faeces to a lab! I don't want to tell my doctor that I wake up drenched in sweat, I don't want....Cancer.

Cancer is curable if caught early enough.

Wishing you much support :) Marie


Significant other
Heterosexual woman

Excellent advice to all Cindy, and the best of luck with your treatment. I hope for you a speedy recovery.

Cindy,
  I've read through and just want to say your bravery is commendable.  I sincerely wish you the best in your recovery and future health.  Hugs

An update.

Saw my radiotherapist and he went through what side affects are going to occur and can occur. The list of the horrors.

As my cancer is advanced and I have refused surgery, I will be treated with aggressive radio and chemo therapy.

Main side effects that are expected will be destruction of my salivary glands so I will need artificial saliva and continual water available, this has issues for my ability to swallow. Damage to my teeth and circulation to them that needs constant monitoring, I need excellent oral hygiene and pre-emptive dental treatment. I see the dentist Friday, luckily I have good oral hygiene and have seen my regular dentist a few weeks back.
Possibility that my voice will be destroyed anyway or severely altered (I can only croak now), I see the speech pathologist tomorrow.
I will have issues in being able to eat as my throat will be very sore from scaring due to the radiation and my taste buds will be destroyed so I can't taste food and may not enjoy it - lack of motivation to eat. I am having a gastric feeding tube put into my stomach on the 1 July that will enable me to direct feed as need be.

Hair loss, as they are going to irradiate the entire area from about lower skull to upper chest I will lose my hair (chemo will take the rest). The hair loss to radiation will not come back.
A bonus here I told him about having electrolysis to remove the 'white hairs', he told me to save my money as the radiation would take care of those hairs no probs. Head hair is solved by buying a wig, another task for Friday.
Hey a win !!

I will be having about 35 radio sessions monday to friday.

I get my mask created on 28 June, I see my chemo-oncologist on 29 June, have my PEG insert (feeding tube) 1 July.

I saw my lawyer this morning to make sure my will is OK (it wasn't) and I am modifying it with her help. She has been lovely and helpful. A problem is created when you change your name (and gender) if you have property,  shares etc under the previous name, it needs to be clarified. I want my partner to be cared for if anything happens to me, make sure you have made your intentions clear if you are looking after loved ones.

How am I feeling?

Emotionally I am on a roller coaster, if I am busy I am OK, in the quiet moments I fall apart. Loneliness is magnified as is isolation.
For the first time in my life I worry about being alone; something I have always loved. I like to share my life and times but I also like to retreat to my personal privacy and now that has been altered.
Physically good. Guess what? No one knows you have cancer by looking at you. I just look like a normal very fit and healthy woman.

How have I been treated? With complete compassion and respect. My full name is Peta Cindy Macardle (no secret it is easily found) but I do not use Peta, I use Cindy and it is annoying me when people use that first name.

Advice, when you make your name change think about it carefully and do not take advice from others, go with your heart. In the reception room you will be announced:  Pony the Pretty Princess you can go to room 5. If you are OK with that, I probably love you even more than I do anyway.

My medical records etc state my gender as female. Every medic I have met knows that I am transgender (most I know or they know me from their friends).  They also pick it just as we all do. It has not been an issue, indeed it has been a benefit. I have told them of my fears of being mistreated or misgendered and the response has been immediate and responsive.

"You are and you will be treated as every other woman we treat. If anyone, at any level ever suggests, shows or says bias to you let us know straight away and they will be dealt with."

Australia has a universal health care policy and I realise it is an issue for some countries. I pay (I think 1.5%) of my income into the national scheme called Medicare. I also have private medical insurance that costs my partner and I about $5000 a year.

So far I have had 2 rounds of CT, one MRI, one PET scan, a initial appointment with my GP another with my ENT specialist, a day surgery procedure for the biopsy, two consults with the multidisciplinary committee, a consult with my radiotherapist. I have been assigned a cancer support nurse Traci (who is a heroine and I am going to make her a super star.) who I can call 24/7 and attends the appointments with me.

All has been covered by my national insurance.
I have not paid a penny and even on my salary I would have struggled.

I really think people need to think about what they mean about 'socialism' and linking it to 'communism' maybe we need to think about caring for our society, or people.

I'm in a good place, I am very happy and positive.

I love you all and I do appreciate your comments.

Cindy

Keeping you in my thoughts day and night and crying my eyes out  :icon_cry2:  Love you Sis

Hugs!

I'm so sorry you have to deal with this but I'm sure you will be just fine. Sure it will be hard dealing with radiation and chemo but you will just fine. I'll be cheering for you.

You're such a beautiful woman, Cindy... you truly are!

Thank you for the update Cindy, I'm thinking of you every day. Your situation reminds me that we should not waste time and we should appreciate every little thing we got and we take for granted.

As I kept reading the list of side effects I started crying, life is so unfair. I cannot even imagine how strong one needs to be to cope with these things like you do.

Very good advice about the name change, I know a few people who have some regrets about their name change.
I'm glad they treat you as the woman you are and taking good care of you. You are a strong woman with an otherwise healthy body and a very good attitude, that most count for something in your recovery.
Hugs!

It sounds like a tough road, please keep positive. You have my thoughts and love.

good luck. I'm deeply religious  so I keep you in my prayers.

Cindy, I am so sorry you are going through this.  I wish you a speedy and complete recovery.  Thank you for sharing this difficult journey with us.

You're braver then a lot of people i know
good luck cindy!  ;D

So sorry you have to do this, much love good luck& best wishes

Cindy, you're being so strong. Good for you. Thinking of you. <3

Good on you Cindy. Fight this thing and keep up the positive thoughts. We know you can beat this. Our 'Will' is with you.


Sent from my iPhone using Tapatalk

I'm very sorry to hear this, and I'm wishing you the best as you go through this. Your posts have helped me tremendously, and I'll always be grateful for your advice.

Thank you my friends.

As I have said this blog is for me to keep you informed and not for self gratification.

I met my dietician and speech pathologist today. Again lovely people.

A concern(?) they all know I'm trans, so it has been discussed openly. I have never made a secret of it but .......... not sure how I feel. I am going to have a discussion to the person who looks after medical records to see what has been leaked or altered.

My profile is high so I sort of expect invasion of privacy, but it does not mean I accept it or that I will not use the full use of the Law in this circumstance.

How am I going?

Ok-ish

The bad times are in the middle of the night when I wake in confusion and it hits me.

Everything is being advanced, I get my mask and simulation for irradiation tomorrow rather than next tuesday. This is because they want to start chemo at the same day I start radiotherapy which looks like 5 July.

I get my feeding tube on 1 July , I hate surgery but I need this as a just in case and I know full well I will need this, I have problems swallowing now; what happens when I have my throat burned out?

I'm a tiny tall girl 170cm and 56kg. Fit but no resources in extra resources. I have never been able to put on weight, that is now an issue. I have no reserves. Never needed them.

The next week is going to be a horror for me because I have to face decisions that I find either repulsive or hard. I will, of course face them. I have no choice. I make my decisions.

This whole episode has altered my perspective, as some who may have got a pm or a post may know.

Live. Do it. Transition. Accept it. Be happy. 

The alternative?

Misery.

Love

Cindy

good luck

Many, many hugs Cindy!  You are so resilient, You are so brave! My thoughts will be with you.

Hug, I have faith in you Cindy, keep being strong

I can't imagine how hard this is for you.  All the best. :)

Clearly puts things in perspective...

I remember when I got diagnosed with melanoma. I felt two emotions: Sadness and Joy. Joy, because of how beautiful life is. After diagnosis I walked in a local park, and I saw life a thousand times brighter... the Sun, the plants, the flowers, the clouds... and each tiny bug or insect that crawled on my hand while I was laying in the grass brought me to tears. A dragonfly hoovered in front of my nose. It was spectacular. Life is so precious... and yet, I forgot it as I write these words. Sometimes I forget how precious life is, we all do... it is so important to realize this. Why wait, transition, do it. Indeed, life is too short to please others.

Thank you Cindy for your post, I felt it.

Cindy, I'm so sorry you're having to go through all this. I am awed by your courage, and you are in my thoughts.

Quote from: Cindy on June 23, 2016, 05:30:14 AM
Live. Do it. Transition. Accept it. Be happy. 

So true.

I just hope that people will heed your words because the thing which has always saddened me when I have come here and read people's posts, is the number of people I see, essentially wasting their lives away under the illusion that they can always "do it tomorrow".

A couple of days ago I was part of a paediatric medical team who struggled to, and thankfully succeeded, considerably against the odds, in keeping a six day old baby alive, who had met with an unexpected medical emergency. If nothing else, that experience brought home to me again the unpredictability of our human existance.

You know, I hope, that Susan and I are thinking of you. I left a message on your machine last week which I hope you heard. I'm hoping that things will go as well as they can for you. We are certainly pulling for you at this end.

Ironically, or perhaps appropriately as you were one of my first friends on Susans, this may also be one of my last posts here, because as final year approaches we've been advised that as junior doctors we should try to limit our social media involvement. Of course you and I know each other in real life so I hope to be hearing of your progress there. Meanwhile I didn't want to sign off here, without publicaly recording the enormous admiration I have for the work you continue to do here.

Be kind to yourself Cindy. You are a very good and dear friend to all of us. I know that if anyone can win this one, it will be you.

A long day and I am tired but I need to keep this up to date.

A bad night woke up with horror dreams and paranoia. Unfounded but just disturbing. It was a freezing night here and I kept the heater on and kept warm.

Forced a boiled egg down for breakfast.

Went to the dental team - I have excellent teeth!

And now we will destroy them but we will be here to try and help.

I sat in a special care clinic with others who were obviously in distress, all of them poorly dressed, haggard and lonely. The state government has withdrawn financial support from the clinic so all have to pay. It cost me $100. No issues.

The dentist was lovely and I am booked in to see her in three weeks after I get blasted for two weeks.

I asked if I could pay for the care of some of the people who where waiting with me in an anonymous way. We found a way to do so and a few people will have had a better day than they thought, I liked that and hope they can use the spare cash on food. And possibly on soap and water.

I went into the clinic with a friend who was attending a meeting I usually attend we both finished about the same time so we walked into the city to a wig shop. Tried on wigs and found one we all liked. Me, my friend and the consultant.

I took pictures but my ability to copy and paste on my Mac seems to have failed.

In the afternoon was CT and simulation.

They lay you on the CT machine and simulate where the radiation beam will go. You have a mask made from thermo plastic, quite interesting, again I have pics I cannot upload but maybe soon.

It would be difficult to say it was a pleasant experience but I know how to meditate so I zoned into my safe area and I was fine. I was told I was by far the most cooperative person they had all day but they are also colleagues and I know they do their jobs.

I have a weekend off and to catch up on the site, comfort my partner and try to feed.

My throat is getting sore so eating is painful - wait a few weeks chick and you will know what pain is!

I start combined chemo and radio on 5 July and I get a PEG feeding tube inserted into my tummy on 1 July. So monday and tuesday next week are OK except for my lawyer and will.

Oh the radiotherapy will go from ear level to chest level and bilateral, so everything gets cooked including goose, hopefully goose gets well cooked and the rest can recover (the scientific basis of the procedure is well known to me).

A question. I am told to cover my neck area in moisturiser such as sorbelene, put it on like custard if you can from ear to chest. Any ideas of protecting clothing will be appreciated.

I am feeling sad and down but I am trying to keep my spirits up. I am no where as brave as you think!

But I do not have a choice. I want a cure that will not be surgical removal of my larynx and pharynx so I do what I do.

I may lose them anyway as they are bumping up the radiation level as high as they can.

I am happy. I am confident.

I would like some radiation jokes!!

Love to me and to all of you

Cindy

Quote from: Cindy on June 24, 2016, 06:19:48 AM
I would like some radiation jokes!!

You may be tough enough to take them, but I'm not tough enough to give them.

Quote from: AnonyMs on June 24, 2016, 06:24:08 AM

Quote from: Cindy on June 24, 2016, 06:19:48 AM
I would like some radiation jokes!!

You may be tough enough to take them, but I'm not tough enough to give them.

Hair today gone tomorrow!

Hey Hon. You know me better than many. I need to live this rather than just lie down. I fight on my feet and as you know I have faced interesting times before.

Please don't be sad. :-*

Well, at least I know my HRT is working.

I'm sorry your experiencing nightmares from the disease . I have them too because of my Rheumatoid arthritis and the fact that I damaged my eyes 40 years ago due to what I believe is my Borderline Personality Disorder and self harm. The nightmares are definitely not fun.

Here's an old one, Cindy. What's 2 meters tall, glows in the dark and clucks?

Chicken Kiev.

What do radiation oncologists like to do for fun?

X-ray-ted activites!  :laugh:

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi1262.photobucket.com%2Falbums%2Fii610%2FTysilio%2Fcancer%2520nerf%2520ball_zpsklnf9vxr.jpg&hash=3e9fdb2daf592a35e090a65f7c931176e9001bb6)

Two atoms are sitting in a field of ionizing radiation.
One atom says, "I think I lost an electron."
The other says, "Are you sure?"
The first atom says, "I'm positive!"

Hard Beam+Tight Collimation = Adequate Penetration

I'm speechless, I really don't know what t say, but still praying and hoping for you to beat this. Hugs
Mariah

Well now Cindy what kinda trouble have you gotten in to?  Tough stuff but, that is what we sissies are made of eh?  We have had just enough practice at survival, endurance and resilience to last a lifetime.  I trust yours/ours will continue as this rough patch in the passage of time goes by.

Please know you are held in high esteem and completely loved by your family here.

Hello Cindy, sorry to hear this. You have been through much more, and survived it, this is just another challenge. Stay strong. Stay positive.

loads of hugs

The mask


(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi.imgur.com%2F3OObhoG.jpg&hash=ee88a2fc0fe1e75e573318e029cf495921d9b86f)

Wow, that's not scary at all...  :-\

As long as it does its job though that's all that matters, right?? :)

Quote from: Ms Grace on June 25, 2016, 02:42:53 AM
Wow, that's not scary at all...  :-\

As long as it does its job though that's all that matters, right?? :)

It was sort of claustrophobic having it made as the plastic melts to your figure as the technicians mould it to you. You can see through it and breathe of course.

And yes as long as it does the job!

Oh I get to keep it after therapy. I'm thinking of hanging it in the lounge with a light globe behind the eyes that flash!!

Quote from: Cindy on June 25, 2016, 02:48:32 AM
Oh I get to keep it after therapy. I'm thinking of hanging it in the lounge with a light globe behind the eyes that flash!!

That would be awesome!

I hope that all of this turns out the best way possible (whatever that is). You are one tough woman, that's all I can say.

Many hugs.

Oh Cindy, if you do the lights idea, you could use different colors for the seasons and other holidays and such.
That would be a great idea!

Kate <3
Always remember to smile your face

As my hair will probably go I tried a wig on.

Thoughts?

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi.imgur.com%2FJQ6zE6n.jpg&hash=00e2db6ea038b851b89546ea7db4c4508d240ebb)

I like it a lot. Suits you nicely. :)

Looks great, very natural looking

Quote from: Cindy on June 25, 2016, 03:00:44 AM
As my hair will probably go I tried a wig on.

Thoughts?

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi.imgur.com%2FJQ6zE6n.jpg&hash=00e2db6ea038b851b89546ea7db4c4508d240ebb)

looks like my hair

Quote from: Ms Grace on June 25, 2016, 03:08:25 AM
I like it a lot. Suits you nicely. :)

+1

I know a strong woman like you will overcome and be even stronger. I expect you to visit me still in Bangkok . My thoughts are with you..xo

Cindy, It looks beautiful on you. It really does suit you. Hugs
Mariah

Quote from: Cindy on June 25, 2016, 03:00:44 AM
As my hair will probably go I tried a wig on.

Thoughts?

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi.imgur.com%2FJQ6zE6n.jpg&hash=00e2db6ea038b851b89546ea7db4c4508d240ebb)

Couldn't tell that it was a wig. It looks perfect :)

I like the new hair, it looks great. I also noticed your bracelet you had made, it looks beautiful.

What wig? What  bracelet? All I see is a beautiful woman with a fabulous smile.  :)

Hugs, Devlyn

Very nice wig! And a great smile.

Quote from: Cindy on June 25, 2016, 03:00:44 AM
As my hair will probably go I tried a wig on.

Thoughts?

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi.imgur.com%2FJQ6zE6n.jpg&hash=00e2db6ea038b851b89546ea7db4c4508d240ebb)

Looks good cindy :)

An update. 5 july 2016.

It has been a busy time. Friday I went into hospital for surgery to place a PEG tube into my stomach, stayed overnight and shared a ward with three other women. We got on really well and helped each other out.

It was quite confronting to see this tube sticking out of my tummy and I got upset. I have dealt with it but it certainly has been confronting. I have now learned how to use it. I need to flush it each day, so far I do not need to use it to feed, but my liquid food has arrived for when I do. A home nurse has been around to show me how to feed myself and take care of myself.
If you want a pic just ask and I shall post one.

Just an aside, hospital stay, surgery, chemoradiotherapy, all the liquid food is supplied by the government from my compulsory national health insurance.

Today I had my first chemotherapy and radiotherapy session.

I have 35 days of radiotherapy, every Mon-Friday. I have three chemo sessions, beginning, middle, end.

I'm on Cisplatin. The infusion suite is modern (about 3 years old) 12 treatment chairs the you lie in and can adjust. The infusions of saline, mannitol, cisplatin, saline took about 5 hours. Tea, coffee etc was freely available,  sandwiches for lunch (I brought my own). Nurses were lovely. (V M can vouch for that! We had a Skype session going).

I have several drugs to prevent vomiting and nausea, and diarrhoea.

After chemo I went to the radiotherapy suite. Strapped down into my mask (see above) then zapped. It only took 10 mins.

I then got a lift home by my friend who had taken me in the morning. My support group is critical to me getting through this - and you are all part of my support group.

Back home I had some dinner and I am drinking lots of water, I need to wash the cisplatin out of my body as it is toxic and very toxic to my kidneys.

I'm in bed now at 8.15pm. I'll look over the forum for a while before sleep and tomorrow?

Radiotherapy appointment at 9.06am. 

Cindy

Oh, Cindy! I'm not big on unnecessary praying, but praying so hard for you!

You are a strong woman, Cindy.  Sending you lots of good vibes.

My grandson has a PEG, so let me know if you need any advice on the care and maintenance.

Hi Cindy,

I wish there was something we could do.  You've been so good to all of us.  This is so terribly unfair but if anyone can beat this, I'm betting you're the one.

Take care,
Paige :)

Quote from: Cindy on June 25, 2016, 02:41:11 AM
The mask


(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi.imgur.com%2F3OObhoG.jpg&hash=ee88a2fc0fe1e75e573318e029cf495921d9b86f)

That's changed since my father went through the same thing many years ago.  They didn't do a mask that I know of. 

I agree with others the wig looks great on you and it looks natural. 

Cindy, you are in my prayers for comfort and healing.

7th July.

Only three radiotherapy sessions down and my sense of taste is profoundly affected. I can see eating will be an issue when everything tastes like ..... cardboard?

I tolerated the first chemo well so far, no vomiting.  Hearing is depressed and I'm feeling tired, I have a nap in the afternoon and no problems falling asleep.

Still managing my walk each afternoon as long as the rain keeps off me; rain is one thing the downpour we seem to be getting is just like being in a cold shower.

My days are getting into a routine of self care, food preparation and forcing myself to eat. Keeping positive and talking to my staff at work, I'm on sick leave but since my therapy is at the hospital I work at, I call in and sit in my office while waiting for my sessions. The company is also good to have.

Starting some photography projects in between the rest of my routine. And of course being here for the Forum.

3 radio sessions down. 42 to go.

Sending hugs and quiet sympathy.
I wish I could be there just to sit with you.

Many Hugs Cindy! Having others around you, work site, is a very positive thing, I believe. Continuing with interests is also very positive. My thoughts are with you.

Hi Cindy...in many countries they offer medical marajuana ...they select the type that makes you feel hungry and food taste good. Do they offer that in Australia? If so go for it ....

That mask looks like some kind of weird android torso in a science fiction movie, or maybe a James Bond villain. I wonder what it would look like with the wig on. And laser eyes; I like that idea.

I was trying to come up with some tasteless radiation jokes and then realized that I had made one before I'd even started.

My sense of taste is so ingrained that I cannot imagine not having it. Even when I've been sick as a dog, I've been able to taste SOMEthing. I've been scrolling through your posts and haven't been able to figure out whether your taste buds will be temporarily out of service or permanently and irrevocably killed. If the latter, all I can say is that it sucks, sucks, sucks and that you rock, rock, rock for being such a good sport about it.

I've been kinda freaking out today because I can't figure out how to hook up my new DVD player--the ports are all different from what my old one has--and catching up on your thread has certainly granted me a bit of perspective.

11 July.

Another week starts.

The weekend was OK, very tired but coped. Visited my wife who of course is very worried and tries to keep positive as do her carers. They all reach out to me, people have been lovely.

I am developing Thrush in my mouth and now using anti-fungals to try and keep it clear, I will develop ulcers etc that will make eating more difficult again. Just something to get over.

My voice is down to a very deep croak.

I had an interesting session with my cancer support nurse and the radiation oncology nurse. Both are there to help me in any way but we seem to have established a special relationship. They know I am a medical colleague and they know that I am a transgender woman.
They asked if they could talk about being transgender and what it is, what it means, just 'what'?

As we have seen on the Forum there is a deep ignorance about transgender people and an absolute incomprehension of how someone's gender identity cannot match their body.
I told them about my life, my identity as female at 5 years old, my rejections, my fight to be me, forced into an all boy school, bullied, raped, molested. And never giving in.

I told them how I left home because I had to live and be me, how I fell in love with another woman who accepted me. How she is now paralysed and in care. How we support each other every day. And never give in.

It was funny, an hour went and a box of kleenex was well used! I ended up taking them both for a coffee so they could recover.

One thing is for for sure, the next transgender patient will be received like royalty!

Keep hanging in there. How is the photography coming? Anything we could see?

Keep hanging in there, Cindy!  :)  How is Rebecca? We've been talking much about you, but I know that she is your world.

Hugs, Devlyn

Cindy, you're amazing. To be going through what you are and still to have the strength to educate people in such an emotionally intense way...  I'm speechless.

As above ^^ I continue to be impressed by your resolve, determination and resilience.  You GO GIRL!

I have as much admiration for Cindy as anybody, but let's not stress that so much that she feels she's letting us down if she ever feels the need to cry about her situation. It's certainly worth crying over.

Cindy -

You are an example of what grace under pressure looks like.

Please stay strong, get rest, and take care of yourself.

Cindy,

I'd like to add my best wishes to the chorus. You are a rock around here. I hope you weather this storm. I can't think of Susan's without thinking of you and hoping you will be OK.

Hugs

B

Quote from: Dee MarshallI have as much admiration for Cindy as anybody, but let's not stress that so much that she feels she's letting us down if she ever feels the need to cry about her situation. It's certainly worth crying over.

Dee, this is very well said. I think we are also strong enough to be there for Cindy when she needs us to be. Even the strongest people need to lean on others sometimes, and recognizing that, acting on it, is a vital part of self-care.

Some of us have shoulders that aren't as broad we'd like, and some of us think our shoulders are too broad, but they're pretty much all a good size for leaning and crying, Cindy, any time!

You are always on my mind Sis, I often find myself having a bit of a cry

I try to keep a cap on it when I'm out in public but I guess people can tell that I'm upset and some ask me about it

Glad to hear that you have a great support team with you

Make sure to keep after that thrush it can turn really nasty and quick

When I hit my Advair inhaler disk for the COPD I have to be sure to rinse my mouth really well so I don't develop a thrush infection

Then of course I make like a cat with furballs for about an hour

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fwww.farmaciapvr.com%2Fwp-content%2Fuploads%2F2014%2F09%2FFarmacia-Puerto-Vallarta-Mexico-Pharmacy-Products-advair-diskus-482x475.jpg&hash=faca9f63a2a3576972225a7ad02db22eb5ad6315)



Just want you to get well and soon

Hugs

Oh - Thank you my friends!

I know I am well supported and cared for by my brothers and sisters here.

I write my blog for me but also to explain what I am going through in case it helps someone else. I am a very lucky girl having you all with me and close friends living near by, but not everyone is so fortunate.

(I'm lucky to have  V M most nights on Skype and she has my back as always :-*)

I can assure you all, when I'm not coping I will reach out to you all and knowing you are here for me gives me great strength.

Love you all
Cindy

Wishing you a successful and (relatively) painless cancer therapy and a quick recovery.  We'll try to be there for you as you have been there for us.

Almost forgot to mention, these Ricola drops with the honey lemon and echinacea work really well for soothing the throat

(https://tse3.mm.bing.net/th?id=OIP.M6637183f247c3eb0136dddd801c95f87o0&pid=15.1&P=0&w=300&h=300)

And it's got a cute pink package  :icon_chick:

My thoughts are with you and I hope the treatments go better for you.

You're very strong, and very, very brave, Cindy. Keep your head up in this time and don't let anything get to you; you've made it this far for a reason and will come further afterwards. Don't let the wind shake you.

OMG, I haven't been on the site for a few months as I try to wrap my head around some things and come back to this sad news.  Cindy, I know you and I have never spoken but I often read posts where you replied with sound advice.  And I was always thankful for you and the other staff here for all the time they take to give advice to thembers of this site.  And as a health care professional, your kindness and care for others shows no bounds.  I think it's fitting for me to say that I will keep you in my prayers and hope you have a speedy recovery as the world NEEDS more people like you.

God Bless you Cindy.

Cindy,

I just started writing describing how you have touch our lives, but it was becoming a book and I decided just to say that we are all pulling for you and I personally cannot wait to have a few good spirits, as I just found out that you like, or dinner together in Miami Beach. Meeting you face to face would make me a very happy person.

Take care and keep up you spirit, not the drinking kind!!

Emily

Quote from: Cindy on July 12, 2016, 03:12:09 PM
(I'm lucky to have  V M most nights on Skype and she has my back as always :-*)

Not to derail, but I think that anyone who has her as a genuine friend is indeed fortunate in that respect.

Funny day. I had a 'feeling sorry for myself moment' and started to worry about feeding. How can I get enough food into me, how can I overcome my distaste for food.
'Oh poor little me crap'.

Grow up chick.

I made Toad in the Hole for dinner, soaked in rich gravy, followed by ice cream and snickers.
Breakfast; pancake, bacon, egg, soaked in Maple syrup. I couldn't taste a thing except maple syrup - that will do.
Fruit to graze on.
Last day of Radio for this week, my neck is getting burnt. My tumour is now obvious sticking out of the side of my neck, inflamed no doubt from the burning.

The schedule for radio is amazingly precise. If I am 9.06am that is when I go in and I am out 15 minutes later. I kept my eyes open today and watched the machine fly around me, a green line across my face and neck and this massive series of machines rotate around me. Very impressive.

I woke up in pain on Wednesday night, the PEG hurting and weeping. I saw the endoscope Drs who were again great, 'call in any time that is why we are here.' Looks as if I just have a skin tear, I'm frightened of developing an ulcer on Chemo, it could go through my stomach wall. Paranoia!

But all OK.

I kept my walk up today, managed an hour and took my camera and enjoyed myself taking some pics. Funny how a woman with a camera is a person to approach and talk too. If I was a man with a camera I would be looked at with suspicion.
My voice doesn't raise comment, as a friend said, 'You have a voice of a person with a serious throat issue', it is so croaky and so weak that people now just stop and listen and talk slowly back to me. People are using sign language as well. I need to keep using my throat though otherwise I will have a hard time recovering speech.

My personal life is interesting, it has always been complicated and not one I can discuss. Wish I could but that is a no no :laugh:

One week to go of Radio and then my second dose of Chemo. I am told that that one will hurt.

Oh well a week to go and bugga the consequences; Bring it on.

an excellent and tasty way to get enough nutrients in your body is to make shakes out of those nutritional drinks like ensure or the generic one. Mix with ice cream and fruit or whatever, yummy . I use that all the time when I get sick and can't eat.

Cindy, hang in there always know I and everyone else is here for you. If it helps think back to those times growing up, or even later, when you had to eat food that you know you don't like but it is good for you. I know it reminds me back to those moments. I hope your able to get your taste buds back ASAP. In the meantime, if it helps, indulge in something you know you shouldn't eat but is worth eating anyway and use the memories of how it use to taste at while eating it help make things more comforting.

If in doubt, never fear calling them and asking them to check. It is what they are there for. Time and time again when I have had an issue with my health and if nothing but to make sure things are okay had things checked. You have every reason to be concerned and good that you are because after all the only way to ensure that you get the care you need and the best care you can is with you advocating to get the right things done and checked on. Hugs
Mariah

Cindy,

You rock our world here. Some quick levity(hope nothing offends you).

Q: Does a radioactive cat have 18 half-lives?


"Knock, knock."

"Who's there?"

"Not your white blood cells, that's fer damn sure."


Call him ChemoSabe.


A truck driver who had been delivering radioactive waste for the local reactor begins to feel sick after a few years on the job. He decided to seek compensation for his ailment. Upon his arrival at the workers' compensation department, he is interviewed by an assessor.Assessor: I see you work with radio-active materials and wish to claim compensation. Trucker: Yeah, I feel really sick. Assessor: Alright then, Does your employer take measures to protect you from radiation poisoning? Trucker: Yeah, he gives me a lead suit to wear on the job. Assessor: And what about the cabin in which you drive? Trucker: Oh yeah. That's lead lined, all lead lined. Assessor: What about the waste itself? Where is that kept? Trucker: Oh, the stuff is held in a lead container, all lead. Assessor: Let me see if I get this straight. You wear a lead suit, sit in a lead-lined cabin and the radio-active waste is kept in a lead container. Trucker: Yeah, that? s right. All lead. Assessor: Then I can't see how you could claim against him for radiation poisoning. Trucker: I'm not. I claiming for lead poisoning.



From one of my favorite online comics.
(https://www.susans.org/proxy.php?request=http%3A%2F%2Fimgs.xkcd.com%2Fcomics%2Ftattoo.png&hash=7084e38b5b04fe34cc929012ec0401e86c33bc04)


(https://s-media-cache-ak0.pinimg.com/236x/5d/19/31/5d193108d06a9ff5a73ec75e6221c3a1.jpg)


(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi3.cpcache.com%2Fproduct_zoom%2F1737532962%2Fwomens_dark_tshirt.jpg%3Fcolor%3DBlack%26amp%3Bheight%3D460%26amp%3Bwidth%3D460%26amp%3BpadToSquare%3Dtrue&hash=116ce9b087f24035040dfd1fd6d10dc8642e7237)


(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi3.cpcache.com%2Fproduct%2F289678371%2Fbeen_there_fried_that_stainless_steel_travel_mug.jpg%3Fheight%3D460%26amp%3Bwidth%3D460%26amp%3Bqv%3D90&hash=c53199d44eba47ff88c58887e9f7be7af9b4ce08)

Hope your day looks up.

Warmly,

Joanna

I am sending good thoughts your way. I can not imaging how difficult this is to endure. We are all here for you.

17 July Sunday evening.

The weekend has been interesting, I'm mobile and OK, found a way to eat and store calories. That sounds so dumb, I happened on a picture of four USA collage students playing the Pokeman Go App, the were all morbidly obese, unaware but so sad. They need to get out and exercise and walk, run, enjoy.

I have gone into a serendipitous mode. Content but bitchy. I need to restrain that.

I'm enjoying my photography and the exercise it gives me and the joy of meeting people. Funny how Peter was never a person who could communicate and I am sort approach by random strangers to talk too. My deep gravel rasp weak voice doesn't put people off - maybe it is a 'cancer voice' and people compensate. (It seems so odd to see that name :laugh: who the hell was he?).

Funniest today was a woman who asked what I was looking at, I was looking at a flower head and showed her through the view finder; she was captivated (not sure why).

Me; "You having a nice day? It is lovely here after a week of rain and cold"

She; 'My partner is looking through the bins (public garbage thingies) to see if there is anything interesting to collect.'

No real answer to that, but she was lovely and we talked for 20 minutes or so. It takes time to go through bins!!

I had a lovely time yesterday, I am looking for a piece of furniture - an antique hall stand. I found an antique shop full of gorgeous 1800 furniture run by a lovely couple. The furniture was amazing - quality seeping through with care and love - nice.

As I was leaving I left my business card in case a hall stand came in. The atmosphere changed, I was no longer a client,  I was an interested person who loves fine things (I make no apology for that).
We chatted and I mentioned a water colour on the wall by John Gould, I said I liked it and the owner said she had another and that they had just had them framed.

Lovely Gould bird water colours and one marked with the serial number. Ahh did they know what they are worth?

No.

I asked what would they do me for both. Yep I paid it.

I just made a large profit. Now I have to find some one to give it too!

As a friend says, if it is going to look nice buy it, if it appreciates in value buy it and then sell it when you are bored with it.

Funny how my perspective on life has changed.

I am so glad I transitioned before this.

I am Cindy and I am alive. And that is wonderful - at least for me.

I wanted to ask something about the treatment process - I know very little about cancer treatment, and given how many people seem to suffer it in today's society, I think I probably should look into it more. Is the treatment spaced out to allow cancer cells to die and for you to heal in between? What actually happens to the cancer mass during the treatment, does the body reabsorb the destroyed areas? Or do they remove anything during or after the treatment...?

I also wanted to make a suggestion which may be helpful if people are not aware. There's a compound you can get fairly cheaply from most health food stores called IP6 - inositol hexaphosphate. If you go look into this compound and at the abstracts of scientific studies, this compound has a strong link with anti-cancer properties. I've even seen a study at one point in which this compound reversed advanced tumor growth in rats. Apparently it works by differentiating cells - the problem cancer cells have, and it works on cancer cells. I called B.S. myself at first because this would equate to being an actual cancer-prevention drug that isn't really talked about anywhere... but apparently that is what it is. And what's more it's cheap to get. For those wanting to prevent cancer or to control its growth, it might be worth looking into. A cancer specialist I'm aware of has recommended a 500mg dose each day alongside calcium supplements to keep cancer at bay.

What a strong woman you are, Cindy. That is the attitude and perspective on life that is important to meet such a challenge. I just think of what you are dealing with and how bravely you walk along your path.  I look at what I am dealing with, all my 'challenges', and they  seem so minor in comparison. Thank you for continuing to write. Many Hugs!

Hugs!

Jen

Monday July 25. Resting in bed.

It has been a hard week. Radiotherapy really started to bite 4 sessions ago, my voice went from gravel to a whisper and my throat began to burn all after one session. After today's session my voice has just about gone.

I wonder if it will ever come back?

I saw the radio-oncologist and pain management is becoming an issue. I need to be able to swallow to eat, and at the moment I can't swallow to clear saliva without pain. It is like the worst sore throat I have ever had and then someone poured acid over it.

I have used Amethocaine washes which is an interesting experience, your mouth is totally numb and you begin to realise that you are choking because you have lost the swallow reflex, great - stuck between a rock and hard place.

I have been offered morphine syrup but I will delay that and have opted for an oldie but a goody of xylocaine syrup. My hope it will kill my pain but allow me windows to eat and swallow. Oh well give it a go. I'm realising that eating is going to not work and I need to get mentally prepared for tube feeding.

I start my second round of chemo tomorrow, I am now lymphopenic and neutropenic so I will need to hide away from people as I am very vulnerable to infection.

I'm starting to lose some hair from the back of my head, damn.

My neck is red and starting to look angry. I have to admit though this is a great way to loose facial hair! I don't have to worry about finishing off the white hairs with electrolysis! I think the side effects may make it unattractive to most though.

My determination is as high as ever and I am happy and living every day to the fullest that I can, in between naps I'm starting to organise another conference, taking some pics, learning photoshop, doing an hour walk if the weather isn't too bad, marking a PhD thesis and trying to perform my Admin duties. Dd I mention taking a nap?

Time for sleep for this chick, a big day tomorrow, radio first then a 4 hour infusion of Cisplatin.

Take care.

Love,

barbie~~

Cindy, I admire your courage and determination. Hang in there and take care. Hugs
Mariah

Cindy-

I lost my swallow reflex when I had a stroke in 2010 so you have my sympathy on that (and everything else too). I still don't have it 100% back.

I admire your spirit - please stay strong and never give up. There will eventually be an end to these treatments.

~Eva

You are keeping busy, you have a great attitude, and you are strong; a perfect recipe for success!!!

Hugs,
Karen 😊

Tuesday 26 July.

What a strange day, I'm in bed and it is getting close to midnight, I have had radio and 5 hours of chemo.

Chemo ended up being a Monty Python session. My blood picture looked bad as my neutrophils and lymphocytes were low (both needed to fight infection) and there was discussion among the nursing staff in the Infusion suite about what to do. The oncology registrar was AWOL (maybe it was the guy I had a go at?) in the end I was asked what to do, so we had another blood test and this time neuts and lymphs were going back up, so I said I was happy to go on Chemo. Oncology Registrar still AWOL so we went for it. I was happy with that (so were the staff). Tolerated the infusion really well.

I was talking to one of the nursing team about a difficulty getting xylocaine syrup and she said, 'Oh we use to use that but it went out of favour, we have a few bottles, I'll give you one.'  (I have some on order but it was great just finding out it works.)

Oh relief!!!!!!! Within minutes my poor throat was pain free. I could swallow without gripping my stress ball, my high energy fruit drink went down like elixir. No need for PEG feeding until the pain ramps up again.

Guess who is going to try sausage and eggs for breakfast? I may not be able to taste them but I can sure swallow them; anyone else eat sausage and egg with maple syrup and tomato sauce? I can just about taste something :laugh:

I know this will be temporary but I'll take what I can get.

I left in the dark with foul weather moving in, Adelaide has been hit by a series of cold fronts and it is a lot colder than usual. We have had our yearly rainfall several times over already. I contemplated if this would be an easier journey in the heat or in the cold? I decided that curling up in my bed in the cold with a hot water bottle and if available a hot man was far preferable to being flaked out on a sweaty bed under the air conditioner and if available a sweaty man.

Nice part of the day feeling (with TMI). I know many of us carry a tampon or a sanitary pad in case someone needs one. On chemo it is suggested that we may decide to wear pull up disposable diapers as sudden and severe bowel issues can occur. I went to the loo and a woman (in a stall) was in obvious distress (sobbing). Remember it is a cancer unit; people cry. I asked if she was OK and she said she had had an accident and had no clean underwear. I of course (following Dena's wonderful advice) had packed a few spares in my Chemo support bag!!

I made her day in giving her a few pair to see her through.

To be honest, pain relief, tolerating the infusion (so far), and helping someone literally putting up with the ->-bleeped-<- in life, has lifted my spirits even more.

So far so good.
Cindy

Quote from: Joanna50 on July 15, 2016, 11:00:42 AM
Cindy,

You rock our world here. Some quick levity(hope nothing offends you).

Q: Does a radioactive cat have 18 half-lives?


"Knock, knock."

"Who's there?"

"Not your white blood cells, that's fer damn sure."


Call him ChemoSabe.


A truck driver who had been delivering radioactive waste for the local reactor begins to feel sick after a few years on the job. He decided to seek compensation for his ailment. Upon his arrival at the workers' compensation department, he is interviewed by an assessor.Assessor: I see you work with radio-active materials and wish to claim compensation. Trucker: Yeah, I feel really sick. Assessor: Alright then, Does your employer take measures to protect you from radiation poisoning? Trucker: Yeah, he gives me a lead suit to wear on the job. Assessor: And what about the cabin in which you drive? Trucker: Oh yeah. That's lead lined, all lead lined. Assessor: What about the waste itself? Where is that kept? Trucker: Oh, the stuff is held in a lead container, all lead. Assessor: Let me see if I get this straight. You wear a lead suit, sit in a lead-lined cabin and the radio-active waste is kept in a lead container. Trucker: Yeah, that? s right. All lead. Assessor: Then I can't see how you could claim against him for radiation poisoning. Trucker: I'm not. I claiming for lead poisoning.



From one of my favorite online comics.
(https://www.susans.org/proxy.php?request=http%3A%2F%2Fimgs.xkcd.com%2Fcomics%2Ftattoo.png&hash=7084e38b5b04fe34cc929012ec0401e86c33bc04)


(https://s-media-cache-ak0.pinimg.com/236x/5d/19/31/5d193108d06a9ff5a73ec75e6221c3a1.jpg)


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Hope your day looks up.

Warmly,

Joanna

Is that comic from XKCD? If so, do you have the link?

TechGirl,

Yes, I will PM you the link.

Joanna

You continue to inspire with your positivity and courage.

Any more word on how Cindy is doing?

Cindy, the way you handle this is really something to admire. I hope the bad weather did not cause any additional health issues and you are all right.

Quote from: Asche on August 01, 2016, 02:07:50 PM
Any more word on how Cindy is doing?

Hot from the press! I'm an inpatient at the moment after a bad weekend. I had bad mucosistis from radio and swallowing was not good.
I had bad shortage of breath and a PE was a concern but I'm clear thankfully. I have gout in a toe from chemo which hurts like bejeeysus!
My dehydration has been resolved, kidneys are back working, but I'll get more tests this morning.

Looks as if I dodged one so everything is pretty good.  I have a radiation rash that looks like lava more than spots!

But I'm good. Care has been great.

I should be fighting fit for my next round of chemo!

After me now.......

Always Look on the bright side of Life, Ta de Ta da

Oh my, you are one tough cookie and aren't we glad of that!  Keeping a light burning for you and knowing you will win this fight!

We're all whistling the chorus along with you!

Sounds like good news after going through heck.  Thanks so much for the update!  Go for the win!

- Michelle

I am sending good thoughts your way.

Well the good outcome of the CT P was I do not have blood clots in my lungs. A very good thing, I do have the beginnings of a chest infection, which since I am immunosupressed is not a good thing, so more tablets.
Kidneys have decided they want to think about things and have opted for having a bit of a rest, they are being spoken to in stern terms.
I have developed a quite impressive radiation burn down the right side of my neck, it is inflamed and the skin is torn and sort of itchy. I'm using sorbelene in layers and an interesting South African conditioner based on Calendula plant. I think this will stay with me as the smell of radiotherapy.
Even though I'm in hospital radiation continues, the girls have got placing me, fitting the mask, running to the door, hitting zap and getting me out before I throw up down to an Art form. They can get me set and out in about 8 minutes, 5 of which are radiation. Amazing the damage 5 mins of radiation can do to you! I reckon I could have two slices of bread either side of my neck and make toast for breakfast.

The care has been great and the respect and vibes from all the staff has been wonderful. Some know I am TG, it hasn't been brought up by anyone. Certainly I have been treated as I would expect any female patient to be treated.

Where from here? I may be released tomorrow if my kidneys decide to cooperate and then I have another 8 days of radio before my next chemotherapy session. That could be a doozy! I might sell tickets 😄

I'm due to go to my hairdresser on Thursday, I've lost some hair but it is more damaged from radiation than anything else. Considering how sensitive my skin is I'm not sure what we will do, I'm not sure if I could tolerate colouring to hide my roots. Oh well that is a big issue item that can wait.

Final thought for the evening, even when your sense of taste has been destroyed, hospital food still tastes like crap! Just in case you where wondering.

Many Hugs, Cindy! I am amazed and encouraged by you strength and sense of humour that you demonstrate on this particular journey!

Yes, sternly keeping those kidneys in line I think is a wise course of action.

Thanks for the update on the hospital food, I am often accused of being tasteless so...

Hang in there.

Joanna

It's funny how as we age, our scars tell the story of where our lives took us. Sending positive thoughts to you. :)

Hugs, Devlyn

It seems to me that your radiation treatment is going well. I hope you will be released soon to be recovered within a few months. Yes. We have all kinds of scar in our life time.

barbie~~

Quote from: Cindy on August 02, 2016, 06:25:56 AMFinal thought for the evening, even when your sense of taste has been destroyed, hospital food still tastes like crap! Just in case you where wondering.

My hospital food during hysto was not bad at all, but I still have vivid memories of horrible food during a hospital stay when I was five. But honestly, the cafeteria food at my elementary school a year or two later was much worse. I would refuse to eat it--it really was wretched--so the monitors forced me to sit there in front of my tray in an empty cafeteria for the entire hour when everyone else had been excused to the playground. Bastards.

Maybe it's good that you can't taste anything at the moment . . .

Your a fighter and it shows. I hope everything clears soon and your feeling better again. Hugs
Mariah

8 August.

25 Days of Radiotherapy gone with 20 days left. Two rounds of chemo done and one to go.

Last week was rough and as posted I ended up as an inpatient. Funny how it can be brought home with stunning clarity. My kidneys had started to close down and the side effects were quite immediate. The most painful being gout in a toe. Agony. This was due the deposition of salt crystals in the joint of the toe that the kidneys had not removed following on from the chemo. The concern was, is it gout or is it an infection? If an infection in my condition with ongoing chemo planned there was a possibility of profound illness and at the extreme, losing my leg.

Cindy gulped a few times and realised she had better take this seriously.

One reason stuff happened was inadequate monitoring by one part of the medical team and I have put in a formal complaint. There is now a plan in for my next round of chemo and how to deal with the side effects, that starts next week.

Good comments are that I can still use my throat and can swallow and sort of talk - if whispering counts. The thoughts being that I'm close to the maximum amount of damage and if I can get through the next week or so then I may have something left to work on to repair - sounds a plan to me!

I have a very interesting radiation scar on my neck that I'm covering with Bepanthen and wrapping in a combine. I look like a character for the "Mummy". If it looks this bad from the outside then I am pretty sure that 'goose' is well and truely burnt on the inside.

I'm feeling very positive, my support group, including here, have been wonderful and I am very determined.

Now to get through this week.

Cindy,
In some ways your saga brought back painful memories to me at the start. I lost my father to cancer at age 11, my mother in my mid 30's and my mother-in-law shortly after. When you started this all that made me greatly fearful for you. But you're getting through this like a champ and I'm beginning to breathe easier. So much so that I can now admit this you. You, and all the others here have become an important part of my life and losing, or risking losing, any of you is unbearable to me. You're all like my family and it's much to soon to have to bear the loss of anyone here. I'm so very glad that you feel you're over the hump and I will continue to sacrifice chickens to keep that going.

Be Well!

P.S.: No, I don't actually sacrifice chickens.

Quote
P.S.: No, I don't actually sacrifice chickens.

Geese on the other hand... ;)

Keep up the positive attitude. You are doing great.

Warmly,

Joanna

It's wonderful to hear they are getting things sorted out and taken care of. I know when my medical team isn't all working well together to ensure nothing gets over looked that is when I end up having issues occur. I hope everything improves from here in. Hugs
Mariah

Cindy, you have a wonderfully positive attitude. I am sending good thoughts your way.

If it's looking that bad on the outside, then hopefully the little miscreant that's causing all of this is taking a severe pounding.

Best of luck - we're all rooting for you.

OH Gosh Cindy, :o
I hope your doing okay
Keep strong
your a fighter  :)

16-17 August

It is ten pm at night and I'm I'm my hospital bed. I've been here since last Thursday. First my foot went with cellulitis and when that was being looked at I was found to be anaemic.

Oh no I've joined the bloodless horde! Or maybe some of the more insulting emails I get as Admin were correct; I am a soulless ghoul!

Not to worry, I had two packs of red cells and felt a new woman. The foot was an indication of infection and with no immune response I've been filled with costly antibiotics to fight off anything. My nurses dress in gowns and masks and we tell dirty jokes to each other. They have been wonderful, not only looking after me medically but also joking in with my weird humour. Then again we may as well keep laughing as there is very little dignity when you are bent over a bucket heaving up mucus that has the consistency of treacle.

So, radiation has burnt my throat to a point where I cannot swallow, I try to keep swallowing so the muscles don't atrophy, today I managed some weetbix and some ice cream. Feeding is through my PEG. My neck is raw from front to back and continually oozes blood and lymph fluid.

My pain is managed on endone at the moment and I'm coping with that.

Good news: I got my calculations wrong, I have four more radio sessions left! One more chemo that may start tomorrow if my haematology and renal function can cope. It will be done as an in patient.  I'm told my throat damage should not get much worse and I can still talk, or rather whisper. So on my calculations I'm winning.

Best of all, I'm happy, I'm determined and I shall win.

Cindy

I hope you are getting some good sleep at this point(hour and a half later or so).

Must have really big mosquitos in Australia.  ;) I mean I know they each take a lot of blood, but really? To be tested as anemic...

Keep up the good fight.

Joanna

Hugs!

You can do it, and we're all cheering for you 😊

A great big Hug! I find myself thinking of you each day, knowing that with your strength, that you will meet each of the challenges the cancer throws at you. Laughter is a true support! It is so nice that the staff are wonderful!

 :)
Glad to hear you don't have many sessions left
it'll probably be nice for you to get home and relax!

You are an amazing woman, Cindy!  Hang in there.  Hugs.

Cindy,

   You're looking Good! Keep at it! Cellulitis, I had that. That only kept me off of the grinder for a few days at boot camp.

Joe

Cindy, you are an inspiration. I have some things coming up and I will think of your courage and whit when I am down. Even in your condition you teach the meaning of spirit. Get well soon.

Cindy, your ability to keep your head held high and remain positive through this is a credit to you. You have shown and continue to show strength during all of this hammering that you are copping.

With all best wishes for coming through this and making a strong recovery!

Cindy will win!

barbie~~

19 August

8am in bed facing another day. 2 days post chemo and facing my next radio session in an hour. My throat is very sore but I need to keep using it  - or as they say lose it!

I obviously don't know what it looks like from the inside, but a glimpse from what the radiation burn looks like from the outside. This is all around my neck:

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It isn't really all that sore!

Good things - I will not need to continue with electrolysis! Radiation has taken care of that for me.

I'm in good spirits but we are all waiting for my predicted haematology collapse from chemo which is sort of variable in time.

I'm designing my gift to myself for finishing my chemoradiotherapy. I am designing a pair of earrings based on the ones I'm wearing the pic but personalised, ideas are welcome and I'll have them made by the people who made my bracelet.

Any way, time to try and swallow some weet-bix, my morning challenge to the throat!!!!!!!!

Wow, it sure looks like it would be sore. Keep on hanging in there!

Hugs, Devlyn

That was my thinking. I really don't know how that doesn't hurt. Hang in there Cindy. Rooting for you sis. You can do it.  Hugs
Mariah

Quote from: Devlyn Marie on August 18, 2016, 05:59:40 PM
Wow, it sure looks like it would be sore. Keep on hanging in there!

Hugs, Devlyn

Quote from: Mariah on August 18, 2016, 06:01:55 PM
That was my thinking. I really don't know how that doesn't hurt. Hang in there Cindy. Rooting for you sis. You can do it.  Hugs
Mariah

Quote from: Devlyn Marie on August 18, 2016, 05:59:40 PM
Wow, it sure looks like it would be sore. Keep on hanging in there!

Hugs, Devlyn

I may have been a little sarcastic, it is an absolute - fill in any thing you wish to use but can't on this site or probably anywhere in public.  :icon_ihearu:

Quote from: Cindy on August 18, 2016, 06:14:46 PM
I may have been a little sarcastic, it is an absolute - fill in any thing you wish to use but can't on this site or probably anywhere in public.  :icon_ihearu:

A real furshlugginer.  ;D

Hugs, Devlyn

Cindy,

Your attitude towards your illness will help you defeat it.  We are all rooting for you and your quick recovery!!

I am waiting for a date and place of when to meet you in South Beach!   Just let me know the date

Your admirer and friend

Emily

My thoughts are with you Cindy. Your throat looks very sore, you must have a high pain tolerance.

WHAT? NO MORE ELECTROLYSIS? HMMMMM...

I don't think you planned this all along but... Careful or all the girls are gonna want it.

Seriously though. Good luck with the throat training. Good thoughts continuing for the blood levels too.

Warmly,

Joanna

26 August.

Well that was tough.

I've finished my radio and chemotherapy. The third round of chemo knocked me flat combined with the radio and I crashed. I was taken into hospital and I didn't leave for three weeks and no one expected me to. I needed a few transfusions as my red cells went, lots of antibiotics as my immune system went, lots of rest as I was exhausted. A wide variety of pain killers for virtually every part of my body. Feeding, drips, magnesium, potassium, calcium, glucose, more pain killers, more drips, more ultrasound, more X-Rays and wonderful medical and nursing staff who just stood over me and told me not to try and do this by myself as I can't.

They were right.

So I'm out of hospital and face my future, has the cancer gone? What will my life be? Will it come back?

Who cares, been there done that time to move on.

OK I'm very weak, I sleep a lot, my throat is a hell hole of pain that I try to force food down and I cry as I try to swallow but I keep doing it and I shall keep doing it until it does what I want it to do.

I tried to keep a look over the Forum but I really couldn't do much. Thanks as ever to the GM's for everything.

Behind the scenes I am not the only one having a fight with life. Let us remember that the site keeps going thanks to the work of volunteers and many of them work way too hard and struggle with their own issues unseen and unheralded.

It will take me a while to get back on top of things.

But I'm back.

Cindy

Glad you are back and hoping for the best for you to continue to fully recover and enjoy a fulfilling life again

Hugs  :icon_bunch:


Virginia

hoping for the best

So happy you're on your way back to us! We've missed you.

Quote from: Cindy on August 26, 2016, 01:33:54 AM
But I'm back.
Cindy

Good to hear Cindy, I'm glad you got through this ordeal.  Hope your throat and swallowing gets better.
Take care,
Paige :)

Cindy, we're so glad your are back!  Your inner strength in this ordeal has been remarkable.  You are truly an example for us to follow in coping with such adversity.

Thank you for posting through all of this, and sharing your journey.

I wish you a smooth and speedy recovery.
- Michelle

It's so wonderful that the radiation and chemo are finished!!! Stay strong, and welcome back 😊

So glad you've made it through. Focus now on making a strong recovery. X

So good to hear your news! Rest and relaxation is the right track. Having said that, keeping moving when possible is very important. Activity, carrying body weight is so important.

'Hearing your voice' on this site is very important to me. Hugs

Kelly

So happy you are through it and get on with life :)

Kind of a warning, maybe, to watch your cupcakes cause "She's Baaaack!" >:-)

With the warmest of welcomes ;D

I am really happy you made it through the treatments. You really are a fighter :) Good luck with a speedy recovery.

Look after yourself, and all the best for a strong recovery!

 ....sorry to hear of your situation ,i wish you all the best in a speedy recovery

I felt kind of pity for that Cancer, it had the bad luck to come up against you  :D

Wish you a real fast recovery! <3

You got through it! And with your sense of humor intact. I hope that the rest of your recovery is smooth and uneventful.

Hi Cindy;
So glad you are through it. I have been very worried with no news from you.
Best wishes for a strong recovery
JudithLynn

I'm am so sorry to hear about this Cindy. You are a strong lady, if anyone can fight this it is you!

I have only recently started back up on this forum because of my upcoming surgery. I guess one could say I have done so for selfish reasons. In reading about your cancer though, I feel there were other purposes that brought me here. I am so sad in reading about your experiance, yet it brings me great strength in what I'm about to do! If only your condition was not an option 😕 Like mine.

You are so right about the healthcare systems around the world. Here in the US we supposedly have the best healthcare. That's a bunch of malarkey! If you were living here you most likely would of been denied by most insurance companies for many of the tests needed to diagnose your cancer. This is just what happened to me, one reason my surgery has been moved. I needed further test to determine if heart was ok. Tests that were denied me in the US.

For my BS in healthcare I have done very much research on Australia's healthcare system. All of what you say is true. Many like you are also able to supplement their Medicaid with private insurance. Australia's healthcare is rated as one of the top 10 in the world. All of the top ones are universal health care systems. 

I pray that you have the strength to get through your treatment and recovery. I already know you have the determination. God bless you!

Stay strong Cindy  you'll  get through it

Quote from: Cindy on August 26, 2016, 01:33:54 AM
26 August.

Well that was tough.

I've finished my radio and chemotherapy. The third round of chemo knocked me flat combined with the radio and I crashed. I was taken into hospital and I didn't leave for three weeks and no one expected me to. I needed a few transfusions as my red cells went, lots of antibiotics as my immune system went, lots of rest as I was exhausted. A wide variety of pain killers for virtually every part of my body. Feeding, drips, magnesium, potassium, calcium, glucose, more pain killers, more drips, more ultrasound, more X-Rays and wonderful medical and nursing staff who just stood over me and told me not to try and do this by myself as I can't.

They were right.

So I'm out of hospital and face my future, has the cancer gone? What will my life be? Will it come back?

Who cares, been there done that time to move on.

OK I'm very weak, I sleep a lot, my throat is a hell hole of pain that I try to force food down and I cry as I try to swallow but I keep doing it and I shall keep doing it until it does what I want it to do.

I tried to keep a look over the Forum but I really couldn't do much. Thanks as ever to the GM's for everything.

Behind the scenes I am not the only one having a fight with life. Let us remember that the site keeps going thanks to the work of volunteers and many of them work way too hard and struggle with their own issues unseen and unheralded.

It will take me a while to get back on top of things.

But I'm back.

Cindy

Next trip hawaii?
Hey it'd be a nice brake
^_^'' i know i'd love to go there hope you're getting better

7 September

Unfortunately my return was temporarily interrupted. I saw my chemo-oncologist who had a few concerns about how I was going (I couldn't stand up at the time as my feet were so swollen) but I lied and said I was OK. He let me return home, my friend decided to drop in that evening to see if I was OK and called an ambulance straight away, not that I noticed!

I was admitted back into the chemo-ward and everyone decided it was a great place for me to stay and I would have no say in the matter. My throat was so damaged I couldn't swallow and my legs had blown up like balloons, I had a few days of really good tripping out on morphine, well I think it was the morphine - maybe it was reality!

But I'm now back home again. Hopefully I am back for good!!

The Good: My surgeon stuck a camera probe down my throat and declared the area 'a total bloody mess' this is a good thing!

The Bad: My feet are damaged and walking is difficult, this may be due to cellulitis, reactive arthritis or something else. Ballroom dancing is restricted at the moment but I can do a pretty mean shuffle. I am learning to swallow again, but I have no sense of taste so eating is a chore.  I don't produce saliva, so my mouth is dry and I choke continually. I have no voice above a whisper.

The Ugly: I have an interesting radiation burn scar down my throat which will heal in time but sure stops people asking silly questions such as 'Why are you whispering?' I have hair loss at the back of my head so will have to think about how to deal with that as it may be permanent from the radiation.

The After effects: I'm in quite a lot of pain but I have stopped the narcotic painkillers. Concentration is down and yes Chemo-brain is a real thing at least for me. It will take me a while to recover and get back fully.

I am happy and I am as determined as ever.

Cindy

Thank you for posting, been thinking about you quite a bit and sorry you are having to deal with being in so much pain

I understand it takes time but still holding out hope for a swift healing  :eusa_pray:

Hugs

So glad you are well enough to be home.

You have been on many of our minds for several weeks.

Great to hear you are working on swallowing again. Sorry about the taste thing. My Dad thought that was the worst part of his treatment at the time(as I have said before, if I could take that on it would be okay. I have been accused of having none anyway).

Continue to heal.

Concerned,

Joanna

hope things keep getting better. I've got somewhat of the same problem with my feet and legs. I just got out of the hospital last week with congestive heart failure and the excess fluid build up went straight for my legs and feet . Very difficult to get guys look at your legs when your legs turn into tree trunks.

Quote
I am happy and I am as determined as ever.

Cindy

The cancer never had a chance, you are really hard core tough :)  Wishing you well in your recovery.

Glad to see you still in the fight Cindy!
I hope your safety and health will overcome all of this and you will be back again to be awesome, well not saying that you aren't awesome at the moment, but well to be more awesome and amazing!

Kate <3
Always remember to smile your face

Think of your battle everyday
And wish you well

• 
  
  

  it'd it

  [/tt]

Quote from: Cindy on September 07, 2016, 07:30:07 AM
7 September

Unfortunately my return was temporarily interrupted. I saw my chemo-oncologist who had a few concerns about how I was going (I couldn't stand up at the time as my feet were so swollen) but I lied and said I was OK. He let me return home, my friend decided to drop in that evening to see if I was OK and called an ambulance straight away, not that I noticed!

I was admitted back into the chemo-ward and everyone decided it was a great place for me to stay and I would have no say in the matter. My throat was so damaged I couldn't swallow and my legs had blown up like balloons, I had a few days of really good tripping out on morphine, well I think it was the morphine - maybe it was reality!

But I'm now back home again. Hopefully I am back for good!!

The Good: My surgeon stuck a camera probe down my throat and declared the area 'a total bloody mess' this is a good thing!

The Bad: My feet are damaged and walking is difficult, this may be due to cellulitis, reactive arthritis or something else. Ballroom dancing is restricted at the moment but I can do a pretty mean shuffle. I am learning to swallow again, but I have no sense of taste so eating is a chore.  I don't produce saliva, so my mouth is dry and I choke continually. I have no voice above a whisper.

The Ugly: I have an interesting radiation burn scar down my throat which will heal in time but sure stops people asking silly questions such as 'Why are you whispering?' I have hair loss at the back of my head so will have to think about how to deal with that as it may be permanent from the radiation.

The After effects: I'm in quite a lot of pain but I have stopped the narcotic painkillers. Concentration is down and yes Chemo-brain is a real thing at least for me. It will take me a while to recover and get back fully.

I am happy and I am as determined as ever.

Cindy

Keep it up Cindy and glad to hear things are in the mits of healing. Yes people may ask questions but hey you got a strong inspiring story to share! And a real good heart along with it.

Hi Cindy,

You don't know me but I have been sending you positive thoughts since first learning about your illness. It's great to hear you're back home recovering. I read all of your blog posts... it's an understatement to say you're really amazingly brave.

As with many others your posts have been encouraging for me. An example which struck me earlier this year was some post on before/after transitional matter which resonated with me and planted a seed that led to my finally using a real profile picture. That was a huge step for me... it's so funny because I don't think anything of it now... but your demeanor and attitude in that post was so relaxed about who you were as someone who had gone through transition... your confidence in sharing your life and experience was so meaningful.

I processed it over weeks and eventually posted a profile photo... never thought I'd reach that step. Anyway, perhaps that one example is silly sounding but it wasn't and isn't for me and I've thinking of that and sending you positive wishes. Thank you for being you, for sharing yourself with this forum, helping 'lurkers' like I was become a 'members with an avatar' who may perhaps eventually get to the 'picture' level.  ;D  (And to be clear for anyone who is either a lurker or avatar... everyone is different, so my humor here is not to deride staying at the avatar stage... for some that is necessary... in my case, being more out with a photo was The healthier step which Cindy's contribution to that thread eventually helped me see.)

I am continuing to send you wishes for a speedy recovery... thank you again for your time and generosity which makes this a place to safely learn and grow...

Sincerely,
Ashley

Jeeeessshhh! You are one ridiculously tough Woman. I hope all good things for you and will keep you in my thoughts and prayers. If guts and fortitude win the race, you're almost done with all this nonsense. I hope that's true and that this was just a bad dream behind you by Christmas.

Dear Cindy, I only just came upon this thread and on reading it through, feel profoundly moved by your courage, resolve and strength of spirit. I imagine it's going to take a a little while to recover your full physical strength after such an onslaught of radiation, chemo and other meds (taken for the secondary issues you reference). However, I hope and trust you're making definite positive progress each day, even if sometimes, the progress only seems like small 'stepping stones' at a time.

Sending my very best wishes for your full and complete healing,
Louisa xx

16 September

Well this chick better update her blog!

Thank you for such lovely messages of support! I really do appreciate them and they really helped.

When I was in the dark place and the pain was too much and I kept my eyes clenched shut so no one can see the tears, I whispered to myself that everyone thought I was brave, so I'd better pretend to be.   I don't think I always fooled my nurses; they would look at me and bring another syringe of pain relief give me a hug and walk away.

So where am I know?

I'm post radiochemo, I see my surgeon every month for assessment, my first PET scan in in late November to see how successful the treatment has been. I play my cards from there.

I started off at 56.5Kg, fit and healthy, I ended up at 47Kg, with low BP, cellulitis in both feet that is/was agony, a radiation burn scar on my neck from my right chin to my chest that was an open sore that bled continuously, unable to swallow (I could suck on an ice chip), I was fed through my PEG tube (50mls an hour on a pump non-stop 2000Kcals a day), I could talk in a whisper but it was painful, I communicated with a sketch pad.

I hated it.

Those of you that know me, and those who are getting to know me, realise that I am extremely independent to a point of intolerable pigheadedness, I do not suffer fools lightly, I despise any weakness in myself, yet I am deeply compassionate to others; or I hope I am. This makes for a lousy patient.

So my first post assessment with my dieticians went badly. They wanted me to continue tube feeding for at least a month and slowly introduce swallowing to allow my throat to recover. I wanted the PEG tube removed immediately and I would find a way to cope. This reached an impasse.

It was resolved by my refusing to use the PEG and forcing myself to swallow, as I keep telling my medical team, 'it is my throat, it will do what I tell it to do'. It does. I am now eating three cooked meals a day prepared by me, covering a minimum 2000KCals, my weight is now 51.9kg. Eating is not a trivial exercise. I have no taste buds left, they were destroyed by the radiation and may come back, but all food tastes like cardboard. My salivary glands are destroyed so my mouth is always dry, so I need to keep drinking water. I cough a lot. Eating is mechanical; being pigheaded has its uses.

My voice is still a whisper but a crackly one. In Adelaide winter cold season is rife and many people have lost their voices so I fit in well! My ENT surgeon (Theo) specialises in vocal cord issues and is happy to work with me to see if he (and his speech pathologists) and can create a feminine voice for me. I may have had a unique voice modification surgery (not recommended!). He obviously knows I'm transsexual and he has expressed a wish to work with the community to help with voice issues, so I'm the guinea pig! (Silver linings are leapt at).

My radiation scar has healed nicely. I have a nice sunburn around my neck that blends in with a little makeup.  I have lost hair at the back of my head but I'm hoping the rest of my hair will gradually cover. I did go to my hairdresser yesterday and I'm now auburn with copper streaks and my fringe is copper coloured, looks very cute and feminine.

The radiation therapy was concentrated on the righthand side of my neck but was given at 360degrees from the level of my ears to the top of my chest. I was told that I would have no reason to continue with electrolysis, they were right! Lovely hairless skin, I don't even need a little touch up! Again this is not recommended as a facial hair removal method!

Life. I have managed to accumulate a lot of sick leave after 40 years of working and I am taking it. I will not be returning to full time employment. This was brought home to me when my replacement had a breakdown after two weeks doing my job. She is now on stress leave. I knew it was a tough job! I live, as many do, with the knowledge that the cancer may not be gone or that it can return at any time.

For so much of my life I lived hoping that each day would be my last so that my gender dysphoria would end. I transitioned, I found what life could be. I got cancer and I fought it. For the rest of my life I hope to to keep enjoying the wonderful life that I have as the woman I was always meant to be.

I hope all of you reach that state - without the big C.

Love
Cindy




Cindy

Good morning Cindy,

When I read your post I was both saddened and happy. Sad that someone I respect and admire had to go through what you endured and happy you are hear and sharing with us. You are and always will be an inspiration to me, a strong and compassionate woman. I think about you and your struggle often and am glad you are on this side of the struggle.

Best,
Rachel

Happy to hear you are getting through it..my god what an ordeal you are one tough soul I admire your courage and determination

Cindy, I may have mentioned this before. If so, forgive me. Also, know that I mean this as a message of hope....

My mother had her first bout of cancer in 1958. She survived it. She had her second in the mid eighties. She survived that one too. The last one, in the mid nineties, took her, to my great dismay, but by that time she was in her early eighties. Almost forty years between the first and the last. One CAN live with cancer. This is your first bout (of which I am aware) and I wish and hope that you can do as well.

Much love,
Dee

Gentle hugs and continued prayers.  : )

Quote from: Cindy on September 16, 2016, 01:41:13 AM
For so much of my life I lived hoping that each day would be my last so that my gender dysphoria would end. I transitioned, I found what life could be. I got cancer and I fought it. For the rest of my life I hope to to keep enjoying the wonderful life that I have as the woman I was always meant to be.

Cindy you are amazing and truly an inspiration.  I hope it gets better from here on.

All the best,
Paige :)

Cindy,

You are a BEAST(I mean that in the best possible way) and a force to be reckoned with. Well done and keep it up.

With warmth,
Joanna

Be strong!
We always have a hope.
I wish you will recover soon, Cindy.

barbie~

Quote from: Cindy on September 16, 2016, 01:41:13 AMI will not be returning to full time employment. This was brought home to me when my replacement had a breakdown after two weeks doing my job. She is now on stress leave. I knew it was a tough job!

Um, yeahhh, I was kinda wondering about that. Everything you've said about what you do (both at work and in your spare time) led me to believe that even Wonder Woman would not be able to keep up if she took your place.

It's nice to be right occasionally. ;D

An update.

Well I have been convalescing and recovering for about 2 months. I was warned I would be very tired. What a joke! I'm, a wreck! I sleep, eat and nap. Not a bad life.

The screens so far look good, my major PET scans are at the end of this month so I look forward to them with hope. In the mean time I am trying to build up my body but finding it very hard. I get very tired very quickly, but I am in very good spirits.

Life has changed. Nothing matters anymore, peoples opinions are just that and irrelevant, I awake everyday with the joy of a new day and new adventures to be had (then I have a nap :laugh:).

What is relevant and maybe confronting is the discussion about mortality. I'm going to die. It may well be this cancer that kills me. But I will die.

So will you.

How do we deal with that?

I went into a depression when I realised I was living on waiting for the next screen, "is it back?" I was living waiting for three words. But why?  What I realised is that I have to live every second with joy, and find joy in every second. So do you - being transgender is a hard road but one that seems pretty easy to be honest when looking back.

It is easy to give in. It is always easy to give in, but it does not accomplish anything.

Walking proud defines your character, what I love to see on the site is so many men and women walking proudly.

Now I need another nap!

Quote from: Cindy on November 05, 2016, 03:22:02 AM
Now I need another nap!

Yes. Sleeping well is the best medicine for any illness. I am sure you will get enough weight in the next few years.

Yes. We are all mortal and I also think about it everyday as I am getting old. As long as I have 3 kids, I have completed my biological duty during my life.

Take care,

barbie~~

Cindy, very glad to hear you keep powering on. It's inspirational how you've managed to take so many positives from your experiences. X

Cindy, you are an inspiration. You are an inspiration to all of us. Please know we care about you and wish you all the best.

Quote from: Cindy on November 05, 2016, 03:22:02 AM

What is relevant and maybe confronting is the discussion about mortality. I'm going to die. It may well be this cancer that kills me. But I will die.

So will you.

How do we deal with that?

Personally I think if a person has done the important things in life they wanted to do it is easier to be satisfied and accept. If someone hasn't done those things, and is told they probably never will, it's a horrifying revelation.

I think that's more the immediate issue many people have, not so much the fact we all die. We all know we all die but try to put off thinking about it because ultimately we know it's pointless to worry about.

I just try to enjoy the experience of living even when it sucks. There's many things I haven't done in life yet, but because I pay attention to each small moment, I don't feel quite so bad about death. I know I've paid close attention to "life" and I know I've at least tried to do things I wanted to do and lived how I believed I should. I don't have too many regrets at all that are truly my fault.

So... no matter what point a person is at in life it's never too late to sit up and pay attention to the experience, start doing the things you wanted.

QuoteI went into a depression when I realised I was living on waiting for the next screen, "is it back?" I was living waiting for three words. But why?  What I realised is that I have to live every second with joy, and find joy in every second. So do you - being transgender is a hard road but one that seems pretty easy to be honest when looking back.

Why is it so damned hard to trigger the epiphanies? We suffer and suffer only to make our resolve after we've given ourselves a beating. You are a tough woman with a wise perspective, we can all learn from your experiences and introspection. Thanks for taking the time to share with all of us. I suspect it's more valuable than you can know.

Yes thanks for continuing to share your progress.

I had a friend who died last spring. He gave me advice years ago. He is much older than I and worked in mechanical engineering. When he was in his 30s he and a partner created a new company to create the best diamond based abrasive wheel for cutting asphalt and cement. Their product failed miserably. However, they discovered it was fantastic at cutting silicon chips. It was about 1976. He was too nice  a guy to make a killing but lived pretty comfortably.

So, getting to his advice. It is old and seems trite. "Plan like you will never die but live like you will die tomorrow." I have been working on that for over 10 years. He never knew the realizations I made about a year and a half ago. He might not have approved. However, that advice has been more clear every few months.

It sounds like you and he agree. You stay in my thoughts(prayers, meditations whatever you want to call it that is most comfortable for you).

With warmth,

Joanna

A 3 month post therapy update.

So after a 3 month from recovery I went back in for a PET and a diagnostic CT, I am checked every 4 weeks with a nasopharyngealscope ( a camera down your nose into your throat).

A PET for those who don't know is an injection of a radioactive analogue of glucose that is taken up by metabolically active cells, malignant cells and inflammatory cells are very active, as are brain cells and muscle etc after exercise. So you have a quiet day before it and fast from eating and then have an injection and a quiet hour while it is taken up.

The staff where lovely (as usual) a student radiographer was doing her first session on a semester work experience and she asked questions and suddenly got blown away when I told her exactly what I had and how I was treated. She looked a bit taken back until I explained my professional oncology background and then she got more upset so I had to explain that I was very comfortable in knowing what was happening to me and gave her a bit of background to the treatments.

The PET took about 30 minutes of scanning then the CT, another dye and other wait. I love the explanation, "Now this dye makes most women feel as if they have peed themselves, you haven't, it is just a warm feeling in your groin". Mmm validation from a radio contrast dye :laugh:

An anxious wait for the results; I have some PET uptake in the area where the tumour was, this correlates with inflammation from the camera scans, we talked about doing a biopsy but my lead surgeon, who does the camera scans, reckons it is a waste of time and we will wait 3 months and repeat it all. The discussion was robust and I felt a little odd in being at a multi disciplinary meeting and joining in the discussion when I was the patient. I think people had forgotten I was there :laugh:

In some ways it also helped, I worked with these people; they knew me before I transitioned and certainly knew me after. Sometimes we feel as a patient we are a piece of meat but I can assure you that patients are never that in good medical practice. They knew me and knew my concerns and that came through.

So if you liked spaghetti westerns and my favourite is----The Good the Bad and the Ugly

The Good: (Hopefully) post chemoradiation damage that will resolve over the next 3 months. The rest of my throat has grown back and I can swallow and speak.

The Bad: Severe fatigue and loss of body weight. I went from 59 kilo (130pounds) to 49 kilo (108pounds) during my last few weeks of hospital stay, I'm now about 115 pounds. I've lost my right vocal cord, it is paralysed and recovery is not expected. My salivary glands are destroyed so I have to keep my mouth wet continually with water, this makes swallowing some foods very difficult. I have limited sense of taste and smell. So now I only wash every two years and eat carrion; this saves a fortune.

The Ugly: The radiation therapy of course goes through your skull, so I've lost the ability to grow hair on the back of my head (hopefully that will return), the chemo drug promoted facial hair growth so I've had some laser, seems to have worked straight away! I've lost high frequency hearing (average for a woman my age) but also middle frequency has been affected, so common language hearing is hard. I've overcome this with the age-old art of ignoring people, this works well with loved ones, police and other people you are supposed to listen too but need a rest from :laugh:
My voice is a raspy loud whisper, sounds as if I have a very bad cold. I have to admit no one has misgendered me, well I have to admit I am obviously female and the voice doesn't grab anyone as unusual.  My radiation burns are extensive, I have a deep 'tan' from my boobs to just below my ears. My neck on the right side was burnt open, but has healed over and I have new skin growing in the background of the burnt skin, looks sort of cute.

Mentally: The Movie was all about how three gunfighters with similar skills could survive when they where going to fight for the same thing. The story was about their mental strength.
This journey with Cancer is hard. I feel every pulse and pain in my neck, I await that distinct little pain that I know and can recall. I dream of people ripping my throat out against my will. I wonder about death. I wonder about life. I read about people going through rough times and I think how lucky I am.

I'm good.

Cindy

Thank you for the update Sis. Love the references to the movie, very classic references to a classic western

I understand there is a degree of permanent damage from the radio and chemo but hoping you will continue to heal as much as possible

I applaud your mental strength and brave handling of this devastating illness

Sending you Love and Hugs

V M

Thank you for the update Cindy. You have shown amazing strength and courage to make it through all of that. Hugs
Mariah

You are good. I can tell because you haven't lost your sense of humor. Lots of damage to your throat! Such draconian stuff to kill cancer. Someday  it wont be like this....in the meantime, you've kicked cancers ass and are here to regale us with your wit and wisdom. Congrats on being so damned tough and doing it with such feminine flair. If attitude is rehabilitative,  you're well on your way to being 100 percent healed. Thanks for the update. It is good to hear you're well.

Cindy, you are so strong. Reading about your struggles has inspired me over the years. This struggle is no exception.

Quote from: Cindy on December 03, 2016, 02:50:41 AM
So if you liked spaghetti westerns

  always have! i pray the worst is behind you and be well.

Wow.  Thanks for the update.  You've got so many folks out here cheering for you, and frankly, we're all in awe of your endurance and persistence, not to mention keeping your sense of humor through all this.

Carrion, eh?  There's an old WW1 poem about fine dining in the trenches I thought you might enjoy.  Yeah, more folks with THAT sense of humor...

Quote
WILLIE

O compound of wrecked flesh, rent and torn asunder,
How do we e'er digest thy potency, I wonder --
Cold, killed cattle pounded into paste,
Pressed into tins and shipped to us in haste.

Greedily we eat thee, hot or cold or clammish,
How welcomely thou thuddest in the mess tins of
  the famished.
O leavings of a jackal's feast, O carrion sublime,
No matter how we scoff at thee, we eat thee
  every time.

Ah, CORNED WILLIE.

Sgt. H.W. White
Stars and Stripes, 1919

yes, we are here and we continue to hold you in the highest esteem.  Thinking of you and cheering you on as you cheered us on as newbies once upon a time.

Gentle hugs and continued prayers.

Georgie

Cindy, Was glad to see your latest update. Although I've never met you I feel I know you well from your posts on this forum. I think your one of the most amazing and one of the strongest woman it's been my pleasure to get to know. My most heartfelt wishes for your continued recovery and a very long and happy life. Jessica.

Cindy,

Humor, compassion and grace in the face of a terrible ordeal.  Yep, that sounds like you. 

Hugs

Jen

Glad you're on the mend. God bless you.

Quote
I feel every pulse and pain in my neck, I await that distinct little pain that I know and can recall.

*hugs* oh how I know that feeling - I developed septacemia following a catastrophic break down of some old dentistry, and I still wait anxiously for any little twinge and ache to fade, hints that it may be happening again (hopefully not!).
Savour every moment, your recovery will sneak up quietly, and mainly be able to be viewed in retrospect, and in the meantime be gentle with yourself. You are strong.

Holding you in the light of our thoughts.

Rowan.

Quote from: Cindy on December 03, 2016, 02:50:41 AM

'''The staff where lovely (as usual) a student radiographer was doing her first session on a semester work experience and she asked questions and suddenly got blown away when I told her exactly what I had and how I was treated. She looked a bit taken back until I explained my professional oncology background and then she got more upset so I had to explain that I was very comfortable in knowing what was happening to me and gave her a bit of background to the treatments.

This whole passage just blows my mind...here you are at this appointment about your life threatening cancer, about your future and yet you still take the time to be concerned about your fellow human being.

Amazing

Stay strong

Liz

How has life moved!

I have seen sunrises and sunsets - haven't seen the green flash - yet, maybe one day?

I'm approaching my 6 month with terror, I feel that little pain from the ulcer. Mmmmmm it is the ulcer?

Seeing and hearing Sue in Bangkok. Lovely.


Mmmm trying to be strong.


I live in fear.


Cindy

Fear not Sis

Keep looking forward knowing many here love you and you are held close in our thoughts

I am sending positive thought your way.

Gosh cindy I can't imagine what you're going through, it must be so hard!
I wish you all the best and you're right you're a very strong woman.


Sent from my iPhone using Tapatalk

Being as positive as I can be for you...Sue is not that far away and you two will have a great time.

Hugs
Liz

Sis, it wouldn't dare come back.

Yes, I want to believe you are fierce enough to scare the pants off of any errant cells who might go against the grain.  Kicking cancer's ass is full on work regardless of our love and desire to support you.  I will still wish for the best stars to align your way.

27 Jan 2017

I want to update this blog even though I made a short post elsewhere.

My latest nasopharyngeal endoscope was all clear and my surgeon was very happy and not a little amazed. I asked him why and he did say that I had a highly aggressive cancer and that the therapy was hard on me. I made the comment that I didn't think the therapy was that hard -(and then I read my blog; Mmmm)- the brain plays tricks.

I asked why he and the team had been pushing surgery, a laryngectomy and tracheal reconstruction, he replied that most people do not complete the radiochemotherapy due to co-morbidities. Seemingly less than 30% of patients get through 2 cycles and six weeks, I'm in the 10% who managed 3 cycles and 9 weeks.

I went for my routine dental check today. As the radiotherapy went through the blood supply to my teeth it is expected I could have ongoing damage. So far so good, a recommendation about a mouth wash was about all.

I was getting into the lift (elevator in some countries?) at the Adelaide Dental School and a very frail man joined me accompanied by one of the reception staff. He was going to the special care clinic as well but it was his first visit and he was obviously nervous.

He checked in before me and it was obvious that he was confused why he was present here "Why am I here?" 'For a check up before radiotherapy'.

I checked in and sat with my usual game of Sudoko to while away time.
"Excuse me Miss, do you know what is going to happen to me?"

He had moved to sit by me.

So I got the life story :-*

He is 78 alone, his wife has gone and the kids are, well, they are gone bush or feral or something. He fell off a ladder the other week changing a light globe. The X-Ray obviously showed something and he has no idea what it means but he is going to radiotherapy to cure it. He has no idea what radiotherapy is, what it means, what it does.

His loneliness and fear was palpable.

What do you do ?
Think: Not my problem and keep playing Sudoko?
Listen and be polite (not sure how).

I realised I can't do that. I wish I could.

All the appointments were running late as the day after Australia Day was a Friday so lots of workers took a sickie.

So we talked.

I didn't tell him that he had Buckley's Chance of surviving radiotherapy.
I didn't ask why his children had forsaken him.
I didn't ask what tumour or disease he had - he wouldn't know.

I heard a lot about Ethel. I heard a lot about happy times that were disjointed and confused. I listened to an old man talking out his life. I did not feel sad, I was so happy I could be there and listen.

Today was a good day.

He was called in before me.

I wish him well but I doubt that he will get through cycle 1.


I think I'm beginning to understand what my medics meant about me.

Cindy

A big but gentle hug!

You were in the right place at the right time for you both.  Much love.

Georgie

Cindy 

I think your recovery has been nothing less than brilliant. Very few people have the ability to weather the nastiness that comes with cancer treatments. Sometimes it is as simple as the Older man you met today. Your simple actions of taking the time to listen most likely gave that gentleman a great deal of pleasure. I can't imagine too many would have paid him any attention, that was a really kind thing to do.

Hugs

Liz

Cindy, you are one classy lady.

Hi Cindy,

I'm glad you made it through all your treatments and the prognosis is looking good.  You are one tough bird :) 

I'm not the least surprised you took the time to listen to the old man, everyone on this site knows what a kind person you are, you probably made his week. :)

Lots of love,
Paige :)

Well done. That is what we do.

You lead by example.

On behalf of a scared, confused, old man and all the scared and confused people in pain here, thanks Cindy.

You rock with courage and flexibility.

Warmly,

Joanna

Cindy,

You reacted to him with the same kindness and compassion that you have shown here for years!

Nothing too surprising as you are a SPECIAL LADY!

Continue on your road to recovery.

Emily

Cindy,
   Thanks for the updates. I see you are in the hearts and mind of many here. As a cancer survivor myself (so far) I can empathize with you and I can understand the fight. Keep fighting and keep your spirits high. I congratulate you on your victories and send my wishes for you to win this war you wage.
   Though our cancers are different, we are kindred spirits in battling this thing. That advanced directive is depressing but I rather make that decision for myself then burden a loved one with it. I know the happiness of being told that  the surgery went well and all looks good. I've had 2 of them so far. I know the fear and sense of doom from hearing I have cancer and again when they've said it's back. (twice) this last time with the caveat of it being inoperable. I'm right there with you having had what they said was a "harsh" treatment having been hospitalized for 5 weeks while they tried to poison me to death every 8 hours (if I was about to withstand another dose) I managed to receive 22 of the 28 possible doses before I could not take any more and called it off.
   That was over 2 years ago. So far it looks like I am one of the few that the treatment helps a lot. It helps only about a quarter of those getting it and less than 10% have a greater benefit. Still fewer have a 5+ year survival rate. A very very few have even been considered cured from it. I want to be in that group. I go throw the dread of hearing my oncologist telling me it's back every 3-4 months after the  CT scan and lab results are in. That happens again February 8th.

  So hang in there Cindy. Fight the good fight and survive this nasty disease.

We are with you.

   Jeanette

You are a strong compassionate woman and a role model :) .

Cindy,
Thank you for sharing. It is an amazing moment you shared. It's inspirational. As you are.
Can't wait to catch up soon!
Xx
Ev

Sent from my SM-N915G using Tapatalk

Cindy ..  I hope all the best for you in your battle against the cancer.
It looks like such a difficult thing to endure. I know my family members
who have gone through it and how hard it is. I appreciate seeing the
updates on what is happening for you. You give us all strength
Kath

Dear wonderful Cindy... I find myself greatly encouraged by your journey and its many victories... I sense my life influenced positively... realizing how big I can make the "small stuff." You help me in my journey to learn to "seize the day." Thank you for sharing your life with us all... you not only share your life here personally, but spend countless hours with others in fostering this safe environment for all of us to communicate and grow. Buckets and buckets of "Thanks you"s with some very gentle hugs for all that! Positive wishes and vibes and prayers— take your pick of any or all! :)  — sent in your direction each day.

I've been sitting on the 6 month PET scan results for a week while the Head & Neck Multi-disciplinary team made comment. Unfortunately instead of the PET uptake decreasing from the 3 month scan it increased.

Optimism suggests that I received so much radiation to the target area that there is ongoing inflammation.

The alternative view is that the cancer has returned, in which case it is even more aggressive than we all thought (well I thought).

So I'm going in for more biopsies as that is the only way to make a decision.

If it is cancer then the only treatment alternative I now have is a total laryngectomy.

The next few weeks are going to be interesting.

Cindy

Any optimism you can rustle up and maintain is just freaking awesome!  And then there is that ancient curse; May you live in interesting times.  Might be nice if those damnable mutant cells could learn to behave!

I know no words, emoticons or jokes can convey the depth of respect I feel for you or alleviate your concern.  Thank you for being strong and being here with dignity and self determination.

hoping for the best

Fingers crossed!

Pulling for you!

Best wishes

Sending love,  keep keeping strong.  X

Sent from my MI 5s using Tapatalk

Nothing I can add really - I just hope the outcome is as good as it can be.

Sorry you have to go through this; stay strong Cindy!

   My heart and prayers go out to you Cindy, I wonder at your strength to be able to share these trying episodes with us. For some it's easy to fall into the self pity upon getting such news. But not you, you share. And no matter what the results may be, you'll fight. In the end that is all us cancer victims can do. We fight or we die.

  Fight on Cindy, fight on.

  Hugs and prayers,
   Jeanette

Good luck & best wishes, hope it goes well for you

I don't write in this thread often because I just don't feel adequate to express myself in a way that it conveys my feelings and how much I look up to you and the way you are handling the difficulties in your life while still helping out others. You are still in my thoughts every day and I wish all the best and hope for less interesting times with improvements in your health.

Dear Cindy,

I want you to know that you have all my thoughts and prayers.  I wish I had more to offer.  Stay strong, and continue to fight.  You are such a wonderful person, so please know that you are thought of very highly. :)

<3
-Sarah

Quote from: Cindy on February 23, 2017, 12:51:19 AM
I've been sitting on the 6 month PET scan results for a week while the Head & Neck Multi-disciplinary team made comment. Unfortunately instead of the PET uptake decreasing from the 3 month scan it increased.

Optimism suggests that I received so much radiation to the target area that there is ongoing inflammation.

The alternative view is that the cancer has returned, in which case it is even more aggressive than we all thought (well I thought).

So I'm going in for more biopsies as that is the only way to make a decision.

If it is cancer then the only treatment alternative I now have is a total laryngectomy.

The next few weeks are going to be interesting.

Cindy

Hi Cindy, I'm thinking about you, literally sending you positive thoughts. Lots of love, the right hug, and light positive besos on each cheek, all sending peaceful well-wishes to you, Ashley XXOO

Hi Cindy, my most positive thoughts are with you. Luv Sue.


Sent from my iPhone using Tapatalk

Thank you for everyone for your lovely comments. I write this blog to keep me sane but to also to be open as the Admin of the Forum. It is your Forum, I'm just the Admin and I hope you have faith in me and my incredible staff.

My original PET scans came out with a reading of close to 12 SUV, the scale for PET scan is hard to follow and if anyone can explain them please do so. My post therapy scan was 4, my 6 month was 8. I see the problem :laugh:

After a meeting on Monday with my principle medic, a lovely man, he suggested there where 3 outcomes. The QC on the machine was out, and after going into such things it is possible. Or I have severe inflammation from carry over, this may not be as dumb as first thought. My Ferritin level is 390pm/l which is high and my CRP is 64 which is high so I do have an inflammatory process going on. Or the cancer is back.

I have to weigh my options and I wish to do this with clarity and not with fear. Thinking about the options becomes interesting. As I insisted on radiochemotherapy initially that is no longer an option, I am too damaged from it and it is doubtful that it would accomplish anything.

So it is surgery (IF) that would be a total laryngectomy. My voice box is removed as that is where the cancer is, so I cannot breathe or swallow. So my lungs are connected to a 'stoma' a hole in my throat that I would breathe through.

My mouth is connected to my stomach by another tube and I would have to learn to eat and drink again.

I would have no vocal cords so speech would not be the same. I would need to learn to talk again.

All of this is overwhelming and against my desire to live as I would wish.....But.....

The equation is more complicated or is it solved?

My wife Rebecca has lived in high dependency care since 2008, paralysed, except for her right hand, and she maintains her love of life and support me as much as she can.

We are in love.

This year is our 35th wedding anniversary.

I made Vows. She made Vows.

I was laying on my bed worrying about Rebecca and I was visited by my last conversation to my Dad. We had not spoken for some years and he was dying from bowel cancer. He was a lovely man who had principles, morals and compassion. I learnt the principles of Charity from him when he came home one night and telling us that he had remortgaged the family home because 'Mrs ***' husband had died and she could not keep her kids, school and home together and we would pay her way so she could keep her family together. I understood my pocket money was gone. I understood that
what he was doing was right. I accepted the right way to do things -at least for me.

Oh waffle!

How do we reconcile the unreconcilable ?

How can I give up my throat?
How can I give up speech, swallowing?

How can I deal with being in such a difficult situation of being a TG woman in major surgery?


The only answer I have is that I made a Vow 35 years ago. My Dad's final conversation came to me "The only regret Son is that I'll die before your Mum, she is dependent upon me'

Dad, your daughter refuses to die before her wife.

I shall, if need be, have a laryngectomy and deal with it.

I'm Cindy and I do not give up.

This blog episode has been a very personal reflection.

I want to get on a plane just to come and give you a big hug! Your strength,  insight,  heart and resolve only continue to astound me. X

Sent from my MI 5s using Tapatalk

Aw, Cindy!  What a terrible uncertainty, and what a terrible choice to have to make.  (((((Hugs)))))  You will get through this because ... you are Cindy.

Quote from: Cindy on March 02, 2017, 02:13:59 AM
We are in love.

This year is our 35th wedding anniversary.

I made Vows. She made Vows.

I was laying on my bed worrying about Rebecca and I was visited by my last conversation to my Dad. We had not spoken fo

How do we reconcile the unreconcilable ?

How can I give up my throat?
How can I give up speech, swallowing?

How can I deal with being in such a difficult situation of being a TG woman in major surgery?


The only answer I have is that I made a Vow 35 years ago. My Dad's final conversation came to me "The only regret Son is that I'll die before your Mum, she is dependent upon me'

Dad, your daughter refuses to die before her wife.

I shall, if need be, have a laryngectomy and deal with it.

I'm Cindy and I do not give up.

This blog episode has been a very personal reflection.

  Fight on Cindy, Fight on!!

  I applaud your decision. Cancer survivors DO NOT GIVE UP!  That was the decision I was rooting for. You can relearn to eat and drink and many  have learned to talk again with a stoma.  Those are but small challenges many have overcome before you. With all the gadgets these days you have lots of ways to communicate.
  The important thing it you will still be here to live live with the love of your life. Congratulations on your 35 years together. The circumstance that you both have survived these medical challenges and your love still thrives is a testament to love itself. And we still get to benefit from your courage and wisdom too. Purely selfishly many here love you too. Stick around for us too, please.

  I'll say it again, Fight on Cindy, Fight on.

  Hugs,
    Jeanette

Hello Cindy,
I have just joined here at Susan's and yours is one of the first blogs I have read. Cancer has stricken my family as well. I know that you don't know me, but please be assured that I have already and will continue to pray for you and send you whatever good thoughts and strength I can!
Allison

Cindy,
Even if cancer takes your audible voice, your strongest voice is right here. If it costs that audible voice to defend that larger voice then I selfishly say that I want you to make that sacrifice. Dr. Steven Hawking has spoken only through a voder for decades and has had a major impact upon the world. I find your impact, taking into account only the parts I'm aware of, no less great. I'm vaguely aware of what you have done outside this place and believe that it is no less than your impact here.

Please take care of yourself.

I had problems seeing the monitor after I saw your post Cindy. It's incredible how strong is the bond between you and your wife, love conquers all.

I am sorry you are going through this. My thoughts are with you.

Unfortunately my feelings were correct and the cancer has returned or rather probably never went away.

I have been given a choice of palliative care with chemotherapy support or a laryngectomy that may be curative.

Bugger palliative care, this chick has shoes to buy!!!

I'm going to have a laryngectomy over the next couple of weeks and will recover from this temporary set back.

I had a chat with my support nurse and we have decided to make this into a training and support exercise for the medical staff in how to care for a transgender patient. Much too good an opportunity to miss!!

You know how I feel Cindy

Sent from my Vivo V5 using Tapatalk

    I am so damn sorry to hear your cancer is there Cindy. I know what devastating news that is to get. I have tears in my eyes for you just from reading it.

   I am glad you chose to continue fighting, Damn right fight it all you can. It is what us cancer people do. If you aren't going to fight to live ,you might as well just roll over and die. I know you won't be doing that! Not you! You're going to say screw it, throw the dice once again and have that operation. By doing so you stand another chance of winning against this insidious disease. I'll be rooting for you Cindy You betcha I will!

  Lots of Hugs, Cindy
    Jeanette

I know Susan's not a fan of strong language here, but suffice it to say a lot of four-letter words are coming to mind right now.

I'm so sorry to hear that the treatment didn't eradicate it, and I wish you the very best for your upcoming surgery & recovery.

*Sigh*  :'(   Love you

I want to say something and very clearly. This is not the end of the fight, it is not the middle of the fight, it is the beginning of the fight.

My surgeon just phoned me, in his opinion I'm one of the most determined and strongest people he has met. He must not get out much.

He thinks surgery will be possibly curative and my radiochemotherapy has helped by reducing my risk drastically.

Where is my mind?

Good and strong.

I so love you all for being here for me.

Can you take a time out for thinking about my staff, the GM's. We work closely and over the last few months it has been hard on them to put up with me.

Maybe we should have a support a GM session?


Mmm I like that!

"The beginning of the fight"



Those are great words, spoken by a warrior.  :)  I'm right here, with you and for ypu.

Hugs, Devlyn

I'm thinking of you.

Light hugs and prayers as needed.

G

Sending good vibes your way.  Get well and enjoy those shoes!

You're inspiring, Cindy! You bring me to tears. To take your own struggle and and turn it into a learning session for staff, I have no words!

Hoping all goes well.  You're one hell of a gal Cindy. 
Paige :)

You may be quiet in person, but you will be NOISEY on the keyboard. Cindy, if anyone can, it's you.

Take the fight on, and succeed!

Rowan

Hi Cindy,

Not a Dr...  but I  know PET scans: any increase in metabolic activity will result in a high reading and instrument calibration can be an issue.  A PET is indicative but not definitive.  A biopsy is definitive only for that sample but is still the best.... 

I admire your strength but even more than that, you know and understand LOVE. That is special and a big part of what makes you, you.

You are wonderful.

Hugs

Jen

I agree with Jen, you are wonderful and strong.

I'm booked in for a total laryngectomy starting at 7 am 21 March. The Surgeons are Eng Ooi who will do the laryngectomy and search for residual cancer. Nick Marshall will be doing the repair job using a flap from my left thigh.

I will lose speech and be a 'neck breather' (sort of weird expression). The surgery will take about 12 hours and I will be in ICU for a number of days. Nick wants me to come out of the anaesthesia after about 24 hours. I will be fed by a nasal-gastro tube and obviously covered in drains and monitors.

Complications are failure for repair to occur as I have been heavily irradiated and that reduces healing. Obvious complications from major surgery are clear.

I have been give a 40% chance to survive 5 years and beyond, I have 0% chance without the surgery.

I will be away from the site for a while until I'm aware again. Susan, Devlyn, FTMax and Wynternight will take over Admin duties in my absence, it would be lovely if they don't have anything to do and some pressure is taken off my Moderators.

I do love you all and thank you so much for the lovely messages you have been posting.

Cindy

Cindy, hoping to hear from you soon!

barbie~~

Cindy, go grab that 40% with both hands. We're all rooting for you.

Cindy,

   My prayers and thoughts will be with you. Have faith in the doctors that will be doing all they can to have the best outcome for you possible. Losing your larynx certainly will not keep you from giving voice to everything you have to say. It will just take a different form. Stay strong Cindy.

  Hugs,
   Jeanette

Cindy, a close friend had that surgery years ago, and is going strong today.  She misses singing (took up the guitar instead) and is delightful. You will do well.
Love Randy

I will keep you in my thoughts, praying for the best possible outcome and a very quick recovery.  Be well sister.

Hugs,
Karen 😊

I'm so sorry to hear that you have to go through this Cindy.
I don't how you have been so brave thorough it all.
I will keep you in my prayers.

All my love is with you.  X

Sent from my MI 5s using Tapatalk

Cindy,
You are in my thoughts and prayers. I'm looking forward to seeing you back on the site soon.
Love
Ciara
xx

Keeping you in my thoughts, Cindy! You are such a wonderful person.

Hugs....

Jennifer

Haven't noticed this thread before!

I'm sorry what you're going though Cindy, I am new around here but can tell you're a lovely person, stay strong and I am sure we're all looking forward to your update after your surgery!

(I wrote part of this as a reply to a PM  fro my friend and colleague ElizabethK)


It has been an interesting week and I've gone from grief, horror, worry and to acceptance.

I've mourned the loss of my voice and I have visualised the operation with many outcomes and I am now visualising recovery and life outcomes.

I'm getting very close to being at peace with the process.

I have been overwhelmed with the love and support of the community and their friends, and from my none Susie Place friends. Obviously in Adelaide they are the ones dealing with my emotional earthquakes, they do so with calmness and respect and a ->-bleeped-<- load of bad jokes.

I never ever expected the out pouring of love and support, contacts with other laryngectomees and prayers from so many people. I feel so utterly inadequate to thank people.

Life could have been a little easier if I hadn't stubbed my little toe and the next one on the wooden leg of the bed. I think I broke the toe and I cannot walk too well!

So I was feeling very sorry for myself and then started laughing.

I recalled the advert for "Aliens" - In space no one can hear you scream!

So next time I stub my toe, I'm a movie star - no one can hear a laryngectomee scream!

I have to admit it has taken a week of hard meditation, thinking and working through my life goals to get to where I am in my brain.

Peter would have curled up in a foetal ball and wept. Cindy has not shed a tear; she has found a way to cope.

When you are feeling low and there is no hope, you can give up just decide to die. I now disagree with that attitude and I do so from experience. I have been there not only as a trans woman but as a woman who has dealt with losing her partner to paralysis and now dealing with hypolaryngeal cancer.

You can overcome anything and it is YOUR attitude that allows it.

It is not the life I have chosen but it is what it is.

I have arranged for my two life contacts to inform Virginia and Susan after my surgeons finish with me on 21 March. Remember I will be starting my operation at about 7 am 21 March in Australia. This will be about 3.30pm 20 March Tennessee time. The operation is expected to take about 12 hours.

I will be in ICU for about 4 days and I have been told I will come out from sedation after 20 hours.


Writing this helps me control my mind. My apologies if it is repetitive.

I'm feeling OK but may not be doing my Admin duties until I regain my balance.

So be good!!!!!!!!

Good luck, prayers sent & a seat waiting for you on my Sportster. Bring yer leathers!

Quote from: big kim on March 18, 2017, 07:58:08 AM
Good luck, prayers sent & a seat waiting for you on my Sportster. Bring yer leathers!

You now what? I'd love it. I'll wear Roo skins.

Thank you

I will pray for you also Cindy. You've got this lady. You've dealt with the sorrow and fear already so all that's left is for the doctors to do their thing. Recovery will be a breeze now that you have finished with all the other crap.
  We all will be waiting for the good news that it's done and you are doing well.
Enjoy your vacation from Susan's and return rested and better.
   Hugs,
    Jeanette

I can imagine how hard it is to accept the loss of your voice and I'm really sorry that this is the only choice you are left with but 40% sounds a hell of a lot better than 0. A lot of people could learn from you when it comes to dealing with hardships. I just quickly checked the time difference to make sure that I'll send the most positive thoughts your way at the right time :)
Wishing you a quick recovery and a lot of strength!

I agree 40% is better than 0%.

My thoughts are with you and wishing you a speedy recovery.

Well, you're 100% alive now. That's ultimately all any of us has. As has been said,  "yesterday is a mystery, tomorrow is a mystery, but we have today."  With your tenacity and optimism,  I suspect you'll win this battle. I'm certainly sending all the positive love I can your way. Too many people depend on you and I feel like you still have much to do. It just doesn't feel like your story is anywhere near finished.

We have Your back Cindy!! We will be here to say Hi Girl and Welcome back!! :)

You go, girl!  I'll send some extra good vibes your way.  Wishing you a complication-free surgery and a full recovery.

Wishing you well: a successful surgery and a quick recovery.

I see that your op is due in just a couple of hours' time; I'd say 'break a leg' but it sounds like you've already made a head-start on that - so instead I'll just wish you the very best of luck.

Go get that 40%!

I'm thinking of you Cindy, and praying for the very best outcome! 

  I'm doing something I seldom do Cindy. I'm getting on my knees and saying a prayer for you. Be well and return to us soon. God Bless you, your doctors and your surgery.

  Hugs,
     Jeanette

Thank you everyone. I'm just waiting for the car to take me to hospital. I'm in surgery at 8 am Adelaide Australia time.

My Love and Best Wishes to you all.

Cindy

thinking of you Sis

Back atcha hun. You've got this!

Rowan

Sending all the positive thoughts I can muster! Hugs, Kelly

Thinking about you, Cindy!

Love you Cindy.  All the best :) :) :)

I am a little late coming here. You should be well into your surgery by now. I hope everything is going well for you and wish you a quick recovery. We all need you here so make sure you get yourself well soon. Thinking of you.

Jessie

Hoping for the best

Cindy, by now your surgery should be over or at least drawing to a close.  My prayers are with you and, even though it's not an area I have strong beliefs in, I did lay hands on your photo and pray.  I know there's not a lot most of us can do from across the pond but if you need something, please ask.

Love, hugs, and prayers, Cindy
Bev

Hoping the operation was a success and you have a full and speedy recovery.

Thing about you and pensively awaiting any news

Love you Sis

Hugs

You are in our hearts and minds.

Nothing but love.

Georgie

No update yet from the person who's supposed to be keeping me informed

Quote from: Susan on March 21, 2017, 07:47:13 AM
No update yet from the person who's supposed to be keeping me informed

Lets take that as a positive sign...no news is good news....I am going to try and ring the hospital today and see if I can't get an update...will let you know when I know...its just about 7am so will wait till normal hours then call...I will only get a status but it is better than nothing.

Liz

Just received this from a contact:

QuoteCindy's ENT surgeon phoned last night at about 7 pm Aus time. He sounded very positive and the surgery went well. They were just finishing off in the theatres when he phoned. The samples they sent to histology during the operation suggest that they have removed all of the cancer.

I will be visiting Cindy today in ICU and I will send you another update later today.

Cheers,

Hugs

come on sunshine, here's to a speedy recovery XXX D

Please give her our love.

Thanks for the update V M 😊

*whaps* that was my good news to post :P

Fantastic News!

I'm glad the surgery went well. Wishing good you a speedy recovery.

A update!

QuoteCindy is very well. I missed your call as I was in the ICU waiting room. She is communicating with a mega sketcher. I sent you an email earlier. I hope you have received it. The doctor came by today to let her know that they removed all the cancer and the rest of the tissue was benign.

Yay, and now let's hope the recovery and adjustment go well.

 :angel: more wonderful news! :angel:

Cindy's online! Whoot!

In  Icu very sore. Contacts will let u know.

I'm winning.

Cindy 10
Cancer 0

Quote from: Cindy on March 21, 2017, 10:45:12 PM
In  Icu very sore. Contacts will let u know.

I'm winning.

Cindy 10
Cancer 0

Love you sis!

That is great news Cindy. I'm glad the surgery went well for you.

Quote from: Cindy on March 21, 2017, 10:45:12 PM
In  Icu very sore. Contacts will let u know.

I'm winning.

Cindy 10
Cancer 0

Oh, this is wonderful to see!  Now get some sleep! 

(And THANK YOU for letting us know, but please go get some rest and heal.)

Quote from: Cindy on March 21, 2017, 10:45:12 PM
In  Icu very sore. Contacts will let u know.

I'm winning.

Cindy 10
Cancer 0

Go girl you got this

Liz

Quote from: Cindy on March 21, 2017, 10:45:12 PM
In  Icu very sore. Contacts will let u know.

I'm winning.

Cindy 10
Cancer 0

Wonderful news! Wishing you the best and speediest recovery possible and a lot of rest, you deserve it.

Quote from: Cindy on March 21, 2017, 10:45:12 PM
In  Icu very sore. Contacts will let u know.

I'm winning.

Cindy 10
Cancer 0

Hurrah! That's great news, especially as they believe they were able to eradicate the cancer. Hope you feel better soon.

And Cindy, you've been winning for years. :)

Quote from: Cindy on March 21, 2017, 10:45:12 PM
In  Icu very sore. Contacts will let u know.

I'm winning.

Cindy 10
Cancer 0

Hugs, Cindy!  Wishing you a speedy recovery.

Quote from: Cindy on March 21, 2017, 10:45:12 PM
In  Icu very sore. Contacts will let u know.

I'm winning.

Cindy 10
Cancer 0

Glad you are doing well Sis, love you

Hugs

Quote from: V M on March 22, 2017, 05:35:29 AM
Glad you are doing well Sis, love you

Hugs

+1

Cindy,

Two thumbs up from me for the good news.

We are all cheering you on.

Stephanie

Cindy, way to go! We're so glad to see you back. Now rest and recover.
Love
Randy

Keep up that winning thing. Go you.(I'm not really good at the sport thing.) As I have mentioned, you rock and you are a rock. Congratulations.

This is wonderful news!

Quote from: Cindy on March 21, 2017, 10:45:12 PM
In  Icu very sore. Contacts will let u know.

I'm winning.

Cindy 10
Cancer 0

Wonderful news Cindy.  I've been saying prayers for you and your doctors skills.  Now the prayers will be for healing.

Quote from: Cindy on March 21, 2017, 10:45:12 PM
In  Icu very sore. Contacts will let u know.

I'm winning.

Cindy 10
Cancer 0

I'm so happy for you! You have incredible strength and resolve; that cancer didn't stand a chance 😊

Yay! Cindy,  you kick serious bottom. Hope you're feeling better real soon.  X

Sent from my MI 5s using Tapatalk

Cindy
  I am so glad you are on this side of the operation and still with us. That in and of itself is good news. The news that the operation wet well and they believe they removed all the cancer is just plain great news. Now your chore is to rest and recover, you have many many of us eagerly awaiting your healthy return.

  I was out of town with no real access to the forum but the one thing I did get was the news about you. Finding out that much helped to cheer me up. Rest and recover!  That is all you need to do.

  Hugs,
    Jeanette

Cindy,
Best wishes for recovery.  Glad you are winning the battle.

Steph

good news, get well soon luv back to your self. XXXX D

I'm so very pleased!

Night was hard. Bad BP episode. Trying hard

Hang in there woman you are winning this.

  Hugs,
   Jeanette

Quote from: Cindy on March 22, 2017, 09:54:24 PM
Night was hard. Bad BP episode. Trying hard

You got this Cindy, was very glad to see that your surgery went well!

Cancer messed with the wrong women.

I'm coming back to this thread rather late, having been dealing with some of my own issues--nothing like yours. I'm sorry that you are struggling at the moment, but I'm SO SO SO glad that the surgeon is optimistic and the labs were good.

I would say "One day at a time," but I suspect that every fifteen minutes is still a challenge. Just get through the next one, and the next, and the next...

Hugs and prayers  : )

Quote from: Cindy on March 22, 2017, 09:54:24 PM
Night was hard. Bad BP episode. Trying hard

We are with you....thinking about you

Liz

Hey Cindy, Kick that ->-bleeped-<- in the ass.

My thoughts and heart are with you hon, Sending good vibes.

Hope you can feel my Huggs.

Niki Marie

Had a quick note from Cindy this morning...Seems she is out of ICU and now in the High Dependency ward...real progress towards her recovery... ;D ;D ;D ;D ;D

Liz

More good news. Thank you for passing it along Liz

Hugs,
   Jeanette

Good news Cindy! xx
❤️❤️❤️

Sent from my SM-G930F using Tapatalk

I'm glad she's safe. I hope it's not too hellish,Cindy.
Please hang in there!!


Sent from my iPhone using Tapatalk

I got a quick note from Cindy that she had been moved to another ward and that she was able to have Visitors. I wasn't thinking she would be out of ICU for a couple of days so it took me by surprise. I managed to make 15 minutes or so spare to go and see her yesterday afternoon.

She has a couple of tubes running from various places, she has a couple of different pumps, machines, drips and of course "the machine that goes Ping".

She is swollen and bruised...but she greeted me with a huge smile, I had to settle for a hand squeeze as I didn't want to risk hurting her by hugging. Cindy was really animated and sitting up in bed busy on her phone. She looks remarkable for someone who has just completed 8 hours of surgery a few days ago. We communicated via a neat little app she has on her phone along with good old pen and paper.

Unfortunately I couldn't stay very long but will be able to see her again on Monday for a short visit             . 

All in all she is really happy with the outcome of the surgery as indications seem to be that they got it...I am sure Cindy can elaborate on all that if she chooses
         
All in all she looks amazing and seems really up beat...

Liz

That's great news Elizabeth, sounds like she's one tough cookie!

Liz,

Thanks so much for the update. Pass along our love to her.

Warmly,

Joanna

From Cindy...

QuoteHi, I'm sitting up with no catheter finally. Breathing ok and starting to learn some care. Having no breath at all is quite odd. My left thigh is very weak as they took the graft from there. I've sacrificed a chunk of muscle and some nerves. I'll have to do physio to regain walking. I'm progressing quite quickly and I'm pleased with myself.
Bad times are when my head drops as I've no larynx to support it. Doing physio for that as well

I sent her a response, but didn't get one back so assume she fell asleep.

I know one thing. Cindy, you aren't invited to my house for Thanksgiving, because damn you are a tough old bird!  :-*
Speedy healing!

Hugs, Devlyn

Cindy's Ikea story just came into mind. I smiled and can not wait for her full recovery.

I Hope You have a fast recovery Cindy!  :)

Quote from: ElizabethK on March 24, 2017, 04:01:44 PM
I got a quick note from Cindy that she had been moved to another ward and that she was able to have Visitors. I wasn't thinking she would be out of ICU for a couple of days so it took me by surprise. I managed to make 15 minutes or so spare to go and see her yesterday afternoon.

She has a couple of tubes running from various places, she has a couple of different pumps, machines, drips and of course "the machine that goes Ping".

She is swollen and bruised...but she greeted me with a huge smile, I had to settle for a hand squeeze as I didn't want to risk hurting her by hugging. Cindy was really animated and sitting up in bed busy on her phone. She looks remarkable for someone who has just completed 8 hours of surgery a few days ago. We communicated via a neat little app she has on her phone along with good old pen and paper.

Unfortunately I couldn't stay very long but will be able to see her again on Monday for a short visit             . 

All in all she is really happy with the outcome of the surgery as indications seem to be that they got it...I am sure Cindy can elaborate on all that if she chooses
         
All in all she looks amazing and seems really up beat...

Liz

Liz please send me a personal message if Cindy is ok for me to visit her. Thanks!

Sent from my SM-G930F using Tapatalk

Hello Everyone,

Well this might be my last entry for a while.......

It is now 10 days after surgery and I'm in a normal post surgery hospital room. I had my final drains removed today so I can sneak around at will rather than being a poor imitation of Marley's Ghost draped in plastic rather than in chains!

I had my barium swallow yesterday, this a X-Ray where you swallow Barium fluid which shows up on the image and lets the techs know if any of the joins in my new throat are leaking or not. It was the usual comedy; I of course cannot speak, I communicate with pen/paper or a drawing board.  So they stand me up and strap me between the plates of the machine and the put a glass in my hand to drink from. Cindy stands there like a mannequin letting off steam and eventually someone gets the idea. "Oh, there is no room for her to get the glass to her mouth!!" (well done Noddy thinks Cindy).
So they unstrap me and repeat the procedure. Eventually it all gets done and I'm cleared - no leaks! Way to go.

The histology came back and my surgeon sits with me. The cancer was confined to a 1 x 4 cm ulcerated area and was of a high aggressive grade (as we already knew). The lymph nodes around the area were all clear. The tissue underlaying the larynx etc was all clear. I have no histological evidence for cancer.

There is no further treatment that I need following the surgery. However there is no further treatment available if it returns.

So today I got rid of my last neck drain, I cleaned my stoma and more dressings were removed. My nasal-gastro tube was removed (it fell out) and I started to eat and drink using Throat vMkII.

It is an unusual experience. I swallow at the back of my mouth but there is no secondary 'gulp'. Food and drink just go to my tummy. Even without a sense of taste and smell hospital food was still not very appetising but I will eat to get out of here.

Again my experience has been nothing but wonderful. The medical staff and the nursing staff have been wonderful. Although the interns did have to do a duck this morning when I had a lung cough in front of them.
A lung cough? I can no longer cough but I get mucus and muck build up on my airway so I have a reflex cough to clear it. The mucus comes out of the stoma with great force and if you are in the way you wear it. For some reason no one warns the interns of this happening :laugh:

So I'm in excellent spirits. I get tired quickly and require a heap of pain killers to keep going. I am looking forward to the rest of my life and I am going to get off my arse and do more things.

Oh and tomorrow is 1st April, so I shall return to work as Forum Admin tomorrow, what better day could there be.

My Love to All of You

Cindy.

Glad to hear the histology's looking good. Onwards & upwards! :)

That's great news Cindy. Happy to see you in good spirits and no signs of the cancer.

Jessie

best wishes 

Yay! Happy April No-Fooling!

Sent from my SM-N910V using Tapatalk

I'm so glad you progressing so well; thanks for the update and it will be great to see you back on the forum more often 😊

Just hugs and smiles!

I'd tell you to stay positive but you're the poster child for positivity. Just not a whole lot to say to someone as actualized as yourself other than congrats and to "be" and for crying out loud, "stay well". We need you round' here!

Hi Cindy,

Glad to hear you're getting better.  You truly inspire me with your positive attitude.

Take care of yourself.
Paige :)

So glad to hear that you are recovering well, Cindy! We have missed you here!!!

So great to see good news, you made my day Cindy! I just can't stop smiling since I've read your post. I hope you can lose the painkillers soon. Hugs!

Cindy,

that is wonderful news. I am so happy for you.

Glad your on the mend

I am glad to hear that you are doing well.  Wishing you a speedy recovery.

❤️

Sent from my SM-G930F using Tapatalk

Gee Cindy What an attitude!! Oh my gosh you are so positive and upbeat for someone that just had he throat cut out. I wonder at how you can do it. I am so glad that you've come through this with good, no great results.

  Should I give you a reason to admonish me about to get you back in the swing of things. Oh wait a minute I don't need to improvise anything. I can do that w/o even trying.

Anyway Cindy we are all glad you are doing well and at returning for duty.

  Hugs,
    Jeanette

Hi Cindy;
I m so glad you are getting better
Lots of love
JudithLynn

I hope for the best for you.

This will be my final entry into this Blog.
I will give people a chance to respond if they wish and then I will lock it and start a new Blog and Chapter in my life.

I'm doing this because I have moved on. I was diagnosed with Cancer in June 2016 and this Blog has served me well to express my thoughts and fears but also, and so importantly, to keep in contact with all of you - people who are important to me in my life.

Thank You. You have sustained me during some very dark times.

After my chemoradation was over I felt as if I was in remission, it was short lived. After my surgery I now feel that my cancer has gone. Effectively it has - there is no evidence of it and even if there were, there is no treatment option for me. So this Chapter is closed.

Looking back over the last 10 months is interesting in how I have grown as a person. I do feel that I have discovered aspects of me that I cherish and that I am proud of. I have no regrets.

I have faced deep rooted fears and I have overcome them. Fear hates the light, as in the light it changes to courage.

Recently I was reading a Blog by Roberta Gately in Huffington Post about her fight. Her final paragraph touched me as it so reflects my feelings.

I reproduce it here:

"Cancer may have stolen a year of my life, but it gave me so much more, a life sentence rather than a death sentence, and an appreciation of all that is beautiful in life. I've learned the hardest lesson there is - how to live like I'm dying. And while I'm now in remission, the lessons I've learned will stay with me forever, and I wish for all of you - a life filled with endless beauty and endless possibilities. Without the diagnosis of course."
Roberta Gately

Cindy Macardle
11 April 2017

That is beautiful, Cindy. You are an inspiration in positive thinking, and I salute you as you move FORWARD into your next chapter. We all should value the lives that we have, and those of our friends and relatives. Every person is precious and we are lucky to have them.
Love Randy

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You are an amazing person Cindy. A true inspiration. Thank you for sharing your blog with us. I am so happy for you that you you are willing to keep fighting and moving forward with your life no matter the obstacles thrown in your way.

I wish you well.

Jessie

Cindy,

  I think your closing this chapter in your life is a wonderful idea.  Looking forward to keeping in touch in the new chapter. You're right it's time to move on.

  Hugs,
   Jeanette

Well done Cindy. I learn from you and am inspired from your openness and courage.

Cindy, your a remarkable woman whose courage and strength I admire. It is wonderful to see you over come everything that has been put in your way to achieve finally getting rid of your cancer once and for all. Hugs
Mariah

I wish you well in your continued recovery.

Thank you for your sharing of your journey. You insights into the human character have always caused me thought. Your courage and determination are a real inspiration me. I look forward to hearing form you in the future!

❤️❤️❤️

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Frederick Douglass wrote, "Without struggle, there can be no progress." I would revise that to say that the biggest challenges can make us grow the most. 

Peace be with you.

Quote from: Cindy on April 10, 2017, 05:25:17 PM
This will be my final entry into this Blog.
...
I now feel that my cancer has gone. Effectively it has - there is no evidence of it and even if there were, there is no treatment option for me. So this Chapter is closed.
...
I have faced deep rooted fears and I have overcome them. Fear hates the light, as in the light it changes to courage.
...
Cindy Macardle
11 April 2017

Dear Cindy,

Thank you for helping all of us by having the courage and the strength to share your life with us through this crazy daunting time. In a very real sense you allowed me to witness your life through this trying time in a way which has conveyed something to me which has invaluable weight... that Life is truly Life, nothing less... it is fragile each and every day even if we can't see that... so, I say to myself, do try to remember that!

Okay, we've all likely picked up hints of that notion from time to time throughout life... but you know how there can be a new interaction in life which conveys something one knew a little of in the past, yet this new conveyance is somehow a little more galvanizing for whatever reasons, or perhaps just a good reminder... that sort of thing.

Your moderation gives great character and integrity to this place, a good thing for all of us to be around. It's a safe zone for so many because of your efforts. This is all to say we... this world... really needs you and your insight... so please stay very healthy... sending you best wishes as you enter into this new chapter of your life.

We are blessed to be reminded of life's value and fragility through your positive handling and sharing of your experience with us. Thank you dear sweet lady.

With the right hugs and kisses,
Ashley