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    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! 

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.


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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.