Thats what the nurses said. The second week would be twice as bad as the first.....except it wasn't. It was a million times worse. Ok, slight exaggeration there, but it really was unbeliveably dreadful.
I was feeling quite positive when I went in on Monday morning and had my new PIC line inserted into my right arm. My left arm was still quite swollen but nobody seemed very bothered about that, all my blood tests had come back as normal and they were keen to start treatment as soon as possible. So after the usual bucket of pills, little bags of fluid, and standard baseline observations my first teeny bag of IL2 was soon dangling from my drip stand. Martin kissed me goodbye, promised to ring later, and said he would see me at the end of the week. I hate that bit - I get SO home sick. I miss him, I miss the kids, the cats, my house - everything SO much.
I didnt have long to mope though, the first side effects kicked in a mere hour later and I was soon shivering and shaking on the bed. Nice nursey was soon there with my Pethidine - but the silly girl had forgotten the IV Maxalon I have with it to prevent sickness. So within 10 minutes I was retching away. Just to make sure I was having a really spiffing time the IL2 green poo returned, in diahrroea form, so I spent most of that night sitting on a commode hunched over a vomit bowl. Not an auspicious start.
By lunch time the next day I was feeling a bit better, and after a morale boosting visit from Cat, Profs registrar, I agreed to number 2. And it wasnt that bad really, especially compared to the night before. I even managed some sleep after the Pethidine this time (complete with Maxalon) It still took me a while for my BP and temp to recover though. It seems IL2 is cumulative and this is what makes the second week so hard. Instead of 8 hours between treatments I was needing 13 or 14 - which doesnt really matter, it just means you cant get as many in during the week.
It was Wednesday evening before I was ready for number 3. I was still leaping on and off the commode at regular intervals, despite several drugs to try and stop this, but felt prepared for the next one. If only I had known- NOTHING could prepare me for what was about to happen. I remember trying to watch 'Im a Celeb' - but not very much after. My temperature, which had been behaving itself up until now, rocketed to 39.7, and my BP plummeted to 47/24 - I was still needing the commode regularly and because of my very low BP every time I sat upright I fainted. Several times I found myself on the floor wrapped up in the drip stand and dinamap - having made a mess. I cant remember things very clearly, which may be a blessing, but I do remember thinking 'this is it Im going to die'....and actually being relieved about it. It was sheer hell.
I think it was about 11am on Thursday morning when I was sitting in bed, still soaked in sweat and shaking, that Andrea and Cat came in to announce my blood results were 'abnormal'......'Never' I thought - 'what a surprise' I needed an urgent blood transfusion as my Hb was 8.2 (normally it would be about 12) plus my potassium, magnesium and calcium were all way too low.
'By the way' I said...'Ive had enough - I cant take any more'. They didnt seem altogether surprised at this and didnt try to persude me otherwise.
I rang Martin and begged him to come up - I couldnt stand being on my own any longer - and he arrived a couple of hours later just as my first bag of blood was going up. I could tell by the expression on his face that he was shocked by my appearance. I still hadnt managed to make it to the bathroom yet so wasnt aware of exactly how awful I looked.
I wanted to go home - thats all I could think about, and nag the nurses about. Let me go home - I dont care how ill I am just let me go home. Adam, the young doctor on duty that evening wasnt at all keen. He wanted me to stay in for a couple of days to recover but I whinged and whined and persuaded him Id be better off at home in my own bed. My BP had just about reached normal levels again. temp was under 38, so it was decided I could go. With 2 enormous bags of TTOs (drugs to take home)
We finally left about 10pm with me curled up on the back seat of the car wrapped up in a duvet. Maybe it wasnt the wisest thing to do, but at the time it seemed the right thing to do. Whatever was going to happen I needed to be at home. I went straight to bed and had a very strange nights sleep full of weird dreams and I kept waking Martin and talking nonsense to him. I was hot one minute, cold the next, and generally very agitated which Im sure scared him.
Friday morning and I finally came round properly. And had a good look at myself. Similar to the week before my skin was peeling off everywhere. My right arm is now as swollen as my left - I look like Popeye from the waist up ! And Im covered in bruises and aches from where I fainted and banged myself. My mouth is swollen and sore and I cant eat anything, not that I want to right now. My bottom is red raw from being constantly on the loo and my poor fluffy is that sore from weeing IL2 its actually bleeding. Basically I look, and feel, a mess.
But Im home. Just that fact makes me feel better, as if Im on the road to recovery.
Would I do it again?........NO NO NO !!!
Emphatically NO. Its just too harrowing...too painful...too awful for words. It makes you too ill......
However, when I have my scan in Janurary...and if it shows IL2 is working....well...who knows?