I could kill for some simple food

Well the last few days have been hard since the transplant. The only real issue is that Roz has had nausea, and has therefore eaten hardly anything. This is a problem as the body needs energy to rebuild itself.

When Roz was in for the first bout of chemo – different chemicals – she found the food not great, but OK. However, a big problem when you have no immunity – neutropenia – is that you are not allowed to eat salads, nuts, most types of cheeses, bio-active yoghurts, … There is a book of restrictions. Another part of the problem is that Roz is predominantly vegetarian – only eating occasional chicken and white fish. So these reduce the available menu to a small part. And of course your whole taste buds change – so Roz could not drink tea for about 4 days.  The next related problem, which probably affects lots of people going through this, is that the smell, sight or even thought of cheese, butter, rich sauces, chocolate, … and even large portions can make you physically vomit – which happened several times, thereby losing the small amount of benefit that might have come from the food. So you look for other things on the menu.

Some of the items from the menu do not live up to their advertising.

• Pasta with cheese based sauce made her throw-up
• Jacket potatoes came very large and uncooked in the middle
• Allowed yoghurts tasted revolting, and seem to have no yoghurt in them anyway
• Fancy a nice bowl of soup? Well they serve cuppa soup
• Fancy some spaghetti with delicious tomato sauce? Well it’s not what you might make at home with fresh spaghetti – how about a can of cheap tinned spaghetti?

This ward does have special meals available which helps – but even these ‘light’ meals tend to have things like cheese sauce on them.  They also have ‘power drinks’ which do not taste very pleasant. She has craved some simple things like – boiled potatoes, steamed fresh carrots, pasta with nothing on it, … But the very helpful and nice dietician even had to state that ‘we can only offer what is on this pre-set menu’ and you cannot have a meal ‘minus’ one or more items to make it palatable to a poorly patient. It is strange that there is a large fully fitted kitchen actually in the ward. This only seems to be there to microwave pre-produced meals and produce toast and hot drinks.

Unfortunately where we are staying is too far away to bring in freshly cooked food (which some friends and families do) – as it would not be fit for a neutropenic patient to eat after a 50 minute journey. The main hospital canteen cannot be used, as food is left exposed for too long, and you cannot trust local cafés. And we are not allowed to use the kitchen in the ward – probably quite rightly, why should they trust us to leave it OK for other patients?

So what looks like a ‘reasonable menu’ might well be OK for patients who are not too ill, but for those feeling very poorly it can still fall far short of the mark. (As mentioned, Roz actually found the menu OK when in for her first bout of chemo.)

 So for days she has been living on water, peeled apples, toast with margarine (she was too nauseous to face butter). After a couple of days she also managed weak Ribena, a small amount of the power drinks, plain biscuits. And yesterday she managed a ‘snack’ plain cheese dip – her first protein in days. So we are getting there as far as food is concerned – but it’s slow.

In other respects she is doing OK and by yesterday the consultant was reasonably pleased with her progress. We had days of desperation, feeling very ill, agitation, depression, sickness and other normal problems people experience after this form of chemotherapy. She could not hold a conversation, no TV, no phone calls, Skype with her children down to 3 or 4 minutes, no radio, no books, no games, … Just a bit of comfort whenever she was up to it from her carers. Her body has also needed antibiotics, various minerals, anti-rejection drugs, anti-viral drugs, anti-nausea drugs, blood transfusions, etc., etc. In one day she was on drips for about 20 hours of the day, often with three or even four at a time. And pills to take on top.

She seems to be over the worst of that now. She is off antibiotics. Her body has stabilised, so she is needing far fewer drugs and yesterday she was only on drips for a few hours and felt a lot brighter. In the last couple of days she has been up a lot more, doing exercises, long chats and discussions with carers, long chats and jokes with the nurses, councillors, physiotherapists, doctors, (all of whom are absolutely fantastic). Skype went back up to 35 minutes, the TV came back on, etc.
  
She is on the mend, but it is still early days.

The doctor said that after 7 days the stem cells should have all migrated from her blood, where they were put, into her bone marrow. Then they can be stimulated and she should start accelerating her recovery.

So all in all fantastic hospital staff and treatment and recovery starting to gain pace, which could have been better with a bit of very simple freshly cooked food.

Regards
Richard