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
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
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
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
