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Thursday 9 May 2013

So what does chemo feel like?

Another narcissistic post....

After a lot of interest and people obviously wanting to know, but too scared to asked, what does chemo feel like?

Well, scary to begin with.  I mean, who, voluntarily, sits there and lets other people, however nice and cheery they are and whatever uniform they are wearing and however long their title is on their NHS identity card, inject poison into them?  

The chemo process takes a long time (minimum an hour).  It is not a "James Bond" syringe in the buttocks type experience.  You are hooked up to a machine that drip feeds poison into your system via a needle and tube that you have let someone put in you without extreme resistance.  You know it's poison, partly due to the fact it says so on the bag and partly due to the fact that the staff never come near you without protective clothing. 

This is no "umbrella in the bus stop".  

I am not a drug taking person.  Pre-cancer, I had to be seriously debilitated to take a paracetamol (although I do confess to eating those orange flavoured "children's aspirins" when young).  Now I take a pill when I am in pain.  So far, in this experience of cancer, at the worst post op, drain infection, serious pain days, I have taken Ibruprofen and Paracetamol every 2-4 hours, highest dose allowed.  I have been on Tramadol (which gave me a sort of St Vitus dance, so had to stop that), Co-Codamol which made me  very ill, morphine, which helped the pain but messed with my head big time and I DID NOT LIKE, prophylactic antibiotics, anti-nausea medicine (two types) and long term low dose steroids.

Oh yes, and the chemo every week

I am actually pleased to say that my liver (and no, I haven't touched alcohol since January - my mum's funeral) decided that enough was enough two weeks ago and my ATL (whatever that is) rocketed to 247 (which is bad, apparently?).  So I came off everything, including the chemo, for a week.  Once I was under 100 (which took 7 days), I was back on the chemo and anti nausea (and all those injections before chemo) and have taken a paracetamol for a particularly bad hay fever headache a couple of nights.

I also suffer badly from dehydration and have learnt that *I* need to drink between 5 and 7 litres of fluid (tea and water in my case) a day to keep serious hives at bay.  I have had two small outbreaks (hands and feet) and have to remember that sweating is seriously detrimental to me, so have been wafting around in loose fitting clothes trying to emulate that 70's Cadburys' Flake advert.

My friend, Tiffany, told me to visualise the chemo as a kind of huge digger crunching up the cancer cells and my friend, Cathy, told me that this is what is actually happening and why my hair is falling out.  Both incredibly helpful visualisations - thank you.

My friend, Christine, appears every Tuesdays with pies (she is dead good at pastry) and cakes which she has made herself so Wednesday evening supper and middle of the night steroid binge are sorted.  As I get better, the steroid binge gets earlier and I could be found at 3.45 am this morning, back in bed with my 3 thermoses of tea and Christine's Tiffin and Georgie's secret stash of Breakfast Biscuits and Keeping Britain Alive on iPlayer.

Am I going to die?  Well, yes - everybody dies.  Am I going to die from cancer?  Statistically likely sometime.  Do I want to die?  There have been a couple of times when the pain has been 9-10 from the operation and I thought I would not be able to bear it and be better off dead.  HWISO talked me out of that particular scenario and the doctor gave me morphine, so, just now, No.  Also, as I have sorted out my life, done my will, my letter of wishes, written my letters to the children and HWISO, done the farm Year End, found someone to take over the paperwork for the VAT and the wages until I am better, tidied the house, organised a twice weekly grocery home delivery, booked Emily's driving test, got a gardener in once a month, got into a major routine with the lovely Lynne who comes three times a week to sort out the house and recorded all the Grand Designs I want to watch, the likelihood of me popping my clogs anytime in the near future is pretty remote.

Does it make it any easier to watch the drip drip drip every week?  Probably not but, at the moment, I am feeling really rather well.  The hole is shrinking rapidly, the weekly routine is now established and the sun is out.  Mustn't complain.

So what does chemo feel like?  Counterintuitive.  Weird.  Disempowering.  Scary.

The upside?  Kindness from too many people to mention: the parcels, the food, the cushions, the throws, the wash bags, the mad postcards (Colleen!), the cards, the emails, the Skype calls, the phone calls, the bath and skin stuff and the love from so many.

I only wish I could set up the same system for my many many friends who are going through the hell of helping their children overcome an eating disorder.  

Maybe next year?

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