Even when there is a window of opportunity to write, an hour without too much nausea and a reasonable state of awakeness, there is a disconcerting tendency to keel over.
Mid-speech, mid-thought, mid-spoonful, you may think things are looking up but then find me horizontal again, eyes closed, dozing off.
I'm a rather anti-social table companion, my head prone to falling onto my arms apropos of nothing. So I've had to put this blog post together from hand-written diary entries, as sitting at a keyboard has been too demanding and could easily result in dkjfsdkfjjjjjjjjjjjjjjkhfkllflldddddddd, courtesy of the drooping head.
This is not helped by the alarming way my brain collapses halfway through a sentence (mine, or anybody else's).
I am not sure what I can say that doesn't sound whingey or self-pitying. Is it worse or better than I expected?
It's both. I have survived the first week without the need to rush back into hospital, without vomiting (despite clutching the sick bowl frequently), so that is good. There are some good moments. I am forcing myself to go for daily walks, as that does seem to help with the side effects and general feeling of malaise. But it has not been the best week of my summer holidays so far.
One thing I am learning fast is that I must go forward without the slightest expectation of relief, because then things can only get better.
"You'll feel nauseous and a bit flu-like for three or four days," I was told several times by people who should know (hospital consultants and such like), "and then you'll feel fine for a few days before you get more tired and prone to infections in week two."
I've been waiting for those "fine few days" in keen anticipation.
Well, I am not sure how to describe my current situation, but fine doesn't quite cover it. Only now, on day 7, does the nausea begin to wane.
Oh, the nausea.
In all fairness, it could have been much worse, but nausea is such a debilitating symptom, it overwhelms everything.
I remember how I wept when I went into labour with my third baby. It would be nice to think that I shed tears of happiness at the anticipated joy of finally meeting this new arrival, but I'm afraid that they were simply tears of relief that I would never, ever have to go through the nausea business again. I hadn't counted on breast cancer.
I have gone from Medication Novice to Happy Pill Popper, three kinds of anti-sickness tablets, taken religiously as it says on the box: this one once a day, that one three times a day, this one before food, that one after food. I'll do anything. When the pills ran out on day 4, I felt bereft.
Now, finally, the nausea has eased off. But then the next symptom muscles its way to the forefront, and it is a nuisance, to say the least. It's there in the Side Effects Booklet, tucked away unobtrusively between Constipation and Tiredness. It warranted only a few bullet-points but it has been my most vocal complaint.
I've made that term up, because the booklet's polite definition of "Taste changes" doesn't do justice to the vile chemical flavour that permeates my mouth. A nasty metallic taste that obscures everything (particularly the joy of life) and causes fresh bouts of nausea all by itself.
"Everything tastes different," my cancer patients used to complain. "I don't like the things I used to like."
"I know," I used to respond, in an I know sort of voice full of understanding. "That happens."
But of course I didn't know. How could I?
("A lot of people say that," I should have said. "They tell me that they find it really difficult. How is it for you?" And then I should have asked them for their hints and tips, so I could have passed them on to other patients.)
Now, I know.
Chemo Tongue doesn't easily surrender. It needs strong artillery, outspoken flavours, sour, salt and spicy. Sweetness or blandness accentuate it, so biscuits and cakes and plain tea and the sweetened yoghurts I had been recommended to stock up on (easy calories, you see) are off the menu. Caffeine addiction: gone. Please, please, no coffee.
Chemo Tongue recognises its allies. Anything artificial, and it thinks it's a delightful match. Craving something sour, I tried some strong lemon cordial, only to gag on the chemical flavours. It had to be plain lemon juice in water.
So whilst my husband has his morning tea, I have my morning broth of salty stock. Being kept awake by Chemo Tongue, I have eaten crackers overloaded with marmite at 3am. In-between the bouts of nausea, I've enjoyed spoonfuls of Indian curry sauces that would normally make my eyes water.
I am craving the simple, distinctive flavours of Japan that I learned to appreciate during my many stays in Japanese buddhist temples. (Talking of which, let me just go and have another cup of miso soup). My favourite meal has been a simple piece of uncooked tofu with a generous dollop of soy sauce and a topping of raw grated ginger, attacking Chemo Tongue from various angles. I've eaten it every day. Sometimes three times a day. Even for breakfast. Maybe I should move to Japan? Or to Holland. Where is the karnemelk (sour milk) when you need it?
|All the ingredients I need for a Happy Meal|
My sudden cravings are somewhat unpredictable.
Once, I was so desperate that I went to the late night shop to satisfy my desire for gherkins. I sat at the kitchen table at midnight, feeling nauseous and eating gherkins straight out of the pot with my bare fingers. Blimey, anyone would think I've forgotten that weep at Third Baby's labour and am having a final shot at pregnancy.
It really is a case of Flavour Of The Day, or even of the Hour. So before you all start sending round bottles of soy sauce and cancelling standing orders for ginger biscuits (too sweet), let me just record a sudden desire for Victoria Sponge and a cup of alskdjlfkhkkkkkkkkkkkkkkkkakddf