It's 10 days now since I had the first IV chemo. This is the first time I feel anything like up to writing anything. I did try to write the first couple of days and that took me so so long, but since then it just got worse and worse.
No one could even prepare you for this. I couldn't even answer a simple question like 'what is your name?' I am by no means a wimp so if I say it is extremely, extremely, extremely hard then I am probably being generous.
I didn't seem to have the typical side effects that would be expected. Apart from extreme fatigue (and there are no words to say how completely debilitating it is) I had no nausea, I was able to eat albeit it very very small portions, even if is a a biscuit on the hour, small bowl of soup, (we are talking a few tables spoons here) small bowl cereals - half the amount you get in one of those variety boxes - something to try and keep a bit of strength and keep nutrition going in. The difficulty is trying to drink to keep hydrated and that is really important. The cisplatin can be lethal to your kidneys You need in excess of 3 litres ideally. It is so difficult when you don't feel thirsty, only sips will do as you cannot 'gulp' it down. No other drink tasted of anything, there was no enjoyment what so ever. I couldn't eve taste a cup of coffee until yesterday. And then because you are drinking you need to pee! Just when you are so exhausted you could just fall asleep you have to get up!
My main problem has been the headache from hell! Nothing would take it away and I mean nothing. I hadn't slept, relaxed or had any 'let up' in 9 days. To start with we thought it may be the anti sickness drugs as they can do that to you, but when it continued 4 days after they stopped, knew it maybe something else. I at this point though couldn't have even told you my name so try explaining to someone else what was happening to me!!!!!
Eventually after trying the typical pain relief, -paracetamol, diclofenac etc called chemo until who said to get GP out. I got prescribed Indomethacin. All this time the headache was going between 5/10 and 10/10. The Indomethacin took it to 5 but sent me psychotic, delirious rambling and talking utter tosh! Not only that I became barely rousable, So much so Paul had to call for an ambulance at 5am on Wednesday. My blood pressure had also dropped to 80/40.
It seems I may be particularly sensitive to some of the drugs (not the chemo as such!) the other things they give you to help with the effects and side effects of the chemo. I ended up with morphine for the headaches and diazepam to try and help me settle.
Yesterday I had a period with no headache, and when I did have one it was only about a 2-3/10. Today I had a mild one but it has now gone.
Now I am feeling a little more 'normal' (normal with a bad hangover and still exhausted that is) I realise that this is going to be hell of a lot harder that I/we could ever have imagined. This is day 10 of 21. I still couldn't go out of the house, my hair needs washing, I have neither the incline or feel the need. I would like to just feel 'normal' no frills, just normal.
This IS day 10 of 21.....then we have to do it all again......
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