Update Monday 15 June 2009

This week has been the best week Peter has had since he started the chemotherapy - which is unsurprising given that he has had 1 week off before he starts Cycle 2 tomorrow. I could tell he was improving by his ability to speak more than a word or two and his desire to be up and about in the house. A true benchmark was that he spent half an hour each on two successive days at the computer - something he hasn't done for about 6 weeks or more. He was also quite fiesty with visiting community nurses and engaged in quite a bit of banter, which is always a good sign for him.

In the past 2 days, I have abandoned trying to get on top of all the household tasks and have spent slabs of time having a thorough thrashing at Scrabble. Peter is excellent at it and managed to get 105 points out of a very stingy assortment of letters yesterday, while of course I like to concentrate on interesting words, which is not the way to win a game. Some years ago I banned myself from playing with him because I was sick of being beaten ALL the time. But I realise that he needs to have mental stimulation and daytime television or reading is not the way to do it and he needs that kind of interaction. So I have called a truce and he has responded really well. He has also asked whether there might be a volunteer at the Palliative Care service who might like to come to play board games and cards with him during the day. But we have yet to hear if that's a possibility.

I have also "lambasted" him into doing some exercises occasionally for his legs and he walked about 75 metres down the cul-de-sac this week as well which was also a major effort.

Last week we went to see 3 Occupational Therapists who considered the issues for his right elbow, and how to alleviate recurrence of pressure sores. They gave us some good advice and we are waiting to see if there are any special aids that we can use for removing pressure. Given that Peter's right arm and hand is now entirely paralysed, we have to be very careful to avoid any consistent pressure that could result in another pressure sore opening up. Apparently skin and tissue that has been prone to a pressure sore will only ever be about 80% as strong for a year or more after it heals.

Tomorrow, Peter is due to commence the 2nd cycle of chemotherapy and he is also seeing his medical oncologist to see if he is up to undertaking the 2nd cycle. His bloods seem okay according to our GP who visited this evening. Peter didn't wish to be exposed to ill children at the surgery so he kindly did a home visit tonight.

One thing which has seemed to deteriorate is Peter's voice. It is higher and squeakier and he is more "breathy". I'm not sure what's happening there....

Anyway, if chemo goes ahead tomorrow then if things follow the same pattern as cycle 1, we expect that he will have a pretty rough 2 weeks ahead from Wednesday. So we are bracing ourselves for that. Well, that's about it for now. So much to do and so little energy to do it!!

Best wishes to everyone. Leanne