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
