Tuesday 10 June 2008

Apologies for the delay in the updates.

Peter has been home for 3 and 1/2 days now and each day has been a real challenge in terms of trying to increase his calorie content from almost nothing (300 calories on Friday) and also fluid intake of at least 1.2 litres a day. So far we have been able to increase it by about 100 calories a day from Saturday when he was more settled( around 750 calories) to yesterday which was just a touch over 1000 calories. As someone who has had to watch all those "empty" calories since my teens, it is, once again, a creative challenge to get something inside Peter. So apple juice and home made chicken broth constitute the primary fluids with the broth having the addition of a few tablespoons of a product called Carb + which is a carbohydrate powder which dissolves in fluids but for each 10 grams (about a tablespoon) there is 38 calories and it makes Peter feel like he has eaten a scoop of mashed potato.

The food is a challenge. It is somewhat different from 2004 when he was having chemo and also had pneumonia. This time it is the chemotherapy and a right lung infection. Back in 2004 everything he ate tasted terrible due to the effect on the taste buds and severe nausea. This time it has been the same but with the addition of the stricture in the oesophagus meaning that everything has to be of the right texture and consistency, with a little taste but not too much and with meaningful calories but not too rich. He can't taste salt properly at the moment and while we have held the mouth ulcers at bay at the moment, the food has to take into account sensitive oral issues.

So on Sunday I baked some honey glazed pears and an egg custard - both pronounced not to his taste (the lemon juice in the pears was too astringent and the custard too eggy). Yesterday was not a bad day though as he ate some commercial chocolate custard which is something he calls "Vlah" - apparently this kind of dessert was often served on the ship when he was emigrating in 1957 and it is something he will eat - with a total of 154 calories per small container I am embracing anything. So along with the custard, he also had a creme caramel, a cup of chicken broth with Carb + and I used some veal tortellini and made a mild carbonara sauce of which he ate 10 pieces. That with a glass of milk and the apple juice was it for the day - around 1000 calories at the very most but absolutely better than he was eating in the hospital.

I wake each morning wondering what I will be able to make to tempt him to try something. The problem being any rejected items end up being what I eat and I certainly do not need any carbohydrate or other calorific enhancements!

Peter spends most of his day asleep in bed with the electric blanket on 3. He is so painfully thin he has no insulation and wants to have the house heated to a point where I am almost expiring when I undertake normal activity. Luckily we have the rumpus room which is not heated to which I can escape for some coolness and work on the computer (tax return being uppermost in my mind at the moment). On Sunday and Monday he took the roller-walker for a walk to the end of the cul de sac (about 50 metres) and that exhausted him, but was good to get internal organs working etc. On Sunday night he also decided to shave as he hadn't done so for a while and to my surprise he shaved off his moustache and left just a goatee - I was so shocked as I have never seen him without his moustache and with the much thinner face I didn't recognise him. I am not sure who this thin, clean shaven man with large brown eyes is now!

While the pain is now controlled really well with the hydro morphine in the syringe driver, the side effects of that is constipation so that is a battle as well and can cause a great deal of agony when there has been no movement for over a week.

Peter has spent a couple of minutes on the computer today but his interest is limited. His right arm is now without a lot of power and fine movements are difficult. The oncologist, Dr Yip, thinks this could be because of the tumour affecting the right arm.

He remains very frustrated about not being able to get better, depressed about the re-occurrence of the cancer and its move to the bone (I think it is T11 near the right collar bone) and has said that he doesn't think he will survive this bout. On the other hand he is hopeful that if he can stand the treatment he might be able to regain 50 or 60% of his previous functionality. It depends on the day and what has happened.

In the meantime thank goodness we live in the ACT with the daily palliative and community care nurse visits and the opportunity for24 hour phone support as well as being so close to everything here. I often wonder how we would have gone if we had stayed in the apartment at Bondi Beach.There everything is difficult to get to, there were the stairs and while the weather is much milder, the flat faced south and was, in the end, quite noisy, compared to the house here which is north and east facing. So the main bedroom gets good sun from about 11am to 4.30pm in winter and apart from cracker nights, it's very tranquil.

This week, we will be taking collection of a more comfortable recliner chair and a wheelchair. Again courtesy of the equipment loans scheme. I am unsure whether we will use the wheelchair but perhaps it might be useful if he wants me to take him out for an outing or a walk around the little lake near the house. I doubt whether either of those will happen this week.

Next week he is meant to commence radiotherapy (10 days over 2 weeks) and chemotherapy. I don't know how I am going to encourage him to go especially when he is feeling so bad. Still I am a great believer in the power of lightly poached eggs and chicken broth, so I live in hope he will agree to go.

Salut until next time.