Cindy's Cancer Blog

[Cindy]

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

[stephaniec]

good luck

[islandgirl]

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

[Serenation]

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

[Paige]

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

[2cherry]

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.

[Tysilio]

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.

[Rejennyrated]

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.

[Cindy]

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

[AnonyMs]

I would like some radiation jokes!!

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

[Cindy]

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.

[AnonyMs]

Well, at least I know my HRT is working.

[stephaniec]

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.

[Dee Marshall]

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

Chicken Kiev.

[Devlyn]

What do radiation oncologists like to do for fun?

X-ray-ted activites! 

[Tysilio]

[kelly_aus]

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

[Mariah]

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

[Tessa James]

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.

[hibiki]

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