Thirty Three

Saturday, 24 November 2012

Found by my Father in Law.

This week has been tough. I have been so frustrated by the feeling terrible and so desperate to feel better. Every day I've been comparing my state with the previous cycle and being utterly disappointed by my own progress. Last time I was so thrilled by day four that I was able to get up and pretend to feel normal that the thrill itself spurred me on and carried me though. This time I just felt lower and lower as day four and then five passed me by. Still in my dressing gown and still feeling sick.

I have read a number of people's descriptions of what it feels like to have chemotherapy. I guess that with various combinations of the 50 or so different chemotherapy drugs, given over varying cycles, for various amounts of time and to people of varying levels of age, health etc There's never going to be a controlled outcome of the side effects. There are the obvious ones that we all know about. I would like to try to describe it but when I do (to someone who asks or when trying to write in here) I can't find the right combinations of words.

With all the different descriptions I have read I haven't seen anything describe precisely the level of overall exhaustion or how it manifests itself. I'm writing this so slowly to try and avoid using the well trodden cliches and phrases often repeated in the 'chemotherapy journey story' - remembering how I had expected to feel based on my readings compared to how I actually feel.

I feel like someone has opened me up, taken at least half of my centre and scraped it out. Taking with it my energy - physical, emotional, cerebral, sexual and spiritual. Also taking my actual centre and leaving me with a digestive system that has been burned from the inside. I have perpetual morning sickness but without the end result - worse still, the knowledge that I will never again suffer morning sickness proper with any chance of a baby at the end to make up for it. I am either constipated or suffering from diarrhea causing haemorrhoids that take ages to heal. I have, for the first time in my life, and only for the couple of days after the chemo, actually lost my appetite. When it returns after those first few days it is with such gusto that all I can do is think about eating. Whilst eating I don't feel sick but as soon as I stop, I suffer painful indigestion and nausea. Phew, that's a start.

The tiredness has made me realise something about myself which I never stopped for long enough to consider before. I am a high achiever. Not in education, not in career, not in finance but in general every-day domestic life. I run my house and family as a tight ship. I keep the house clean and well organised. I cook every meal from scratch. I manage all the money, bills, insurances, bank accounts, mortgages. I take care of the car and everything about it. I organise the holidays, garden, pets, kids school stuff, correspondence - everything. And I do it well. I have high standards. When I work I work hard, whatever the job. I am proud to have realised this about myself. I am also learning that there is a small chance I may have done all this at the expense of a little bit more fun - of the good, clean family variety.

Anyway my point is that I enjoyed all that and I can't do it now and it's driving me potty.  On day four I was brought literally to my knees by half an hour's homework with daughter 1. Day five I tried to help bath them and was sent to bed by my Mum who could see that I was on the verge of passing out.  In those first few days I have to stop halfway up the stairs for a rest. I can shuffle, hunched and bald like a little old man, around the kitchen for about half an hour but if I sit down I can't get back up again. I fall asleep on the loo in the middle of the night and have to wake myself up and shuffle back to bed. I can't have a bath as it takes too much energy, instead I work myself up to a 2 minute daily shower by resting for a couple of hours in bed first. I shake, my head spins, my eyesight is blurry, sometimes I can't even talk in full long sentences. It's boring and annoying and frustrating and really scary.

I know that chemotherapy is cumulative, I know it's going to take me a bit longer every time to bounce back and I'm genuinely terrified. I am going to have to try really hard to be as well rested and prepared as possible for the next bout. Next time I'm going to try and go a bit easier on myself and stop counting the days and comparing my progress. For now I'm just reminding myself on a daily basis that I'm already a third of the way through. After the next cycle I will be half. Then it'll be plain sailing from there on in.... atta girl.