Sunday 15 June 2008

The forthcoming week is going to be a busy one for Peter and I as he is starting radiotherapy and will have treatments on all days except Wednesday. This will last until 2 July.

He is also scheduled for the peg tube to be inserted to allow him to have supplemental feeding through the tube at 11.45am on Monday. As he is not an inpatient we have to organise an urgent dietitian appointment in order to have the appropriate supplements available and organised so the community/palliative care nurses can show me how to do all of that. At least then the pressure will be reduced for me to try to cajole Peter into having things to eat. I am presuming, until told otherwise, that he will still be allowed to eat but that this will bring his base-line nutrition back to normal and allow him to re-gain some or all of the weight he has lost, without the pressure to try to swallow things.

I also understand his medication can be put through the tube which will also take the pressure off him trying to get oral medication down - it's amazing how many medications and supplements presume everyone has a throat the size of a horse and can swallow large tablets or capsules. When things are available in soluble form (such as the calcium supplements he has needed since the seizures) they often come in bijou sized containers with 10 soluble tablets and priced at a higher level, compared to 60 horse tablets at a lower level. (I presume the medications will need to be crushed and mixed with the mixture - no doubt these and other mysteries will be made clear to me in due course)

As well over this next few weeks, we have the daily visits from the nurses to try to work around as the appointments for the radiotherapy are varied each day.

The chemotherapy I suspect will now commence the following week as the peg tube can't be done while the chemo is underway due to lowered levels of infection fighting cells and risk of infection at the site. However, it was at our insistence that the peg tube be inserted as Peter is just not able to take in an average amount of daily calories and nutrition to allow him to claw back some of the weight loss. I was worried that a further 3 - 4 weeks, or more, of not eating whatsoever would see him deteriorate even more as on Friday he weighed in at 65 kilos - a very low weight for him and a loss of 10 kilos in 4 weeks.

In his quite overweight days immediately prior to the original diagnosis in 2004 he was about 110 kilos - far too much for his frame and the result of a sedentary lifestyle, love of food and grazing at night. When I could get him to agree to go on a diet with me in the past he would complain like crazy but would then successfully lose 15 kilos or more. Usually in the lead up to a trip overseas we would diet from Boxing Day to the day we stepped on the plane to go o/s in the April of the following year - this combined with extra exercise meant we were well placed for the rigours of travel with me (walking lots and seeing lots) and Peter (sitting in cafes lots and sampling local foods lots). Anyway, now it all seems so odd that he once had to be encouraged to lose weight and now I have to encourage him to eat.

So we are having a quiet weekend ahead of the flurry of activity over the next couple of weeks.

Last night Peter told me he felt like he was living in some surreal dream and that things were out of control and he wanted to wake up (presumably back into his old like where he was healthy and in control). That must be a truly terrifying feeling - no wonder he battles every single thing, no doubt in an effort to re-assert himself. Naturally, I try to get him involved in all decisions, from food, his daily routine to the medical issues - which I know, in good times, he always wants but at others he has recently said "I don't know, I can't think, I'm not able to decide". How difficult that must be to progress from a seriously rational, logical and information-hungry state to one where it is all too much to contemplate. I understand from Dr Pacl that the Hydro-morphine may affect cognitive abilities and so the medium to long term plan is to move away from the syringe driver to something else. However, hopefully that something else will also be good at controlling the pain - which this certainly has been.

Thanks to everyone following the blog and those of you who have emailed or phoned - it's good to know you are thinking of Peter and us. Will write again in a few days.