Hi everyone from the UK.
I previously posted in the 'introduce yourself' forum following panic about diagnosis.
Well, hubby is now half way through - he is scheduled for a total of 30 radiation treatments and weekly cisplatin.
I thought I would post on here to help anyone who chooses to read how he is coping.
The first two weeks went ok - chemo day was the most boring - hooked up for 9 hours and surrounded by squawking and compaining women on an off - watching people come and go for all diffent types of chemo. After chemo day he could not sleep, it left him wide awake all night and constipated afterwards. The radiotherapy was fine - no sickness or effects and the tumour is shrinking.
Monday of the third week was something of a wake up call. His mouth was full of sores, and he was in considerable pain. Coupled with this, the constipation had not shifted and all these things blackened his mood. He was struggling to eat, and talking was painful and by Thursday he had to ring his sister (a nurse) for advice on the elusive poo!!! She asked him if he had any surgical gloves and without going into any great detail
the inevitable was evacuated! Hurrah - some relief at last. Yesterday the Doc prescribed what he said was a softener and a pusher and enemas if required so hopefully that indignity will not recur. He also prescribed morphine patches for the pain and a liquid diet that can be put through his RIG (similar to a PEG).
While this may sound like doom and gloom, it is NOT. He is a self employed builder, and has continued to work most days before his treatments. Some days he has been better than others but the act of going to work with the lads has helped to take his mind of things.This morning the pain was greatly reduced and he managed to eat breakfast and drink a milk shake so today I am going to make some soups for him. He was much brighter in himself.
My reason for this post is to try and convey hope to others who are either carers or suffering themselves. We have taken each day at a time and remained positive throughout. We have tried not to look for the bad stuff to happen, but simply deal with each days trials as they occur. He has not lost his sense of humour - continues to take the micky out of his mother and anyone else who cannot hear, and although we sleep apart so he can lounge in the whole bed comfortably, we are fine.
I miss him obviously, there are parts of him that I cannot reach, and I can't help him with this except by unswerving love and support (and by being a taxi and absorbing his bad moods on and off), but we will come through this and so far it has not been as bad as we thought.
We both know that the coming weeks will be the hardest, but we will continue on as we have been and come through this together.
My advice to anyone would be, don't panic (too much), don't assume that is is going to be absolutely awful (all the time), and try and lead as normal a life as possible (when you can).
I wish everyone on this forum love, good luck and the strength to go on and I give a thumbs up to the PEG tubes, morphine patches and Biotene amd amitryptiline to help him sleep!
I feel truly sorry for you guys in the US - we are so incredibly fortunate in the UK to have a wonderful NHS, that I cannot praise highly enough for their care and support at this miserable time.
Good luck everyone!!
Early stage squamous cell carcinoma of the soft palate Type T1NO treatment 30 Radio weekly chemo (cisplatin) drugs currently: Morphine 25mg patches, Biotene gel and toothpaste, salt water mouth wash
