Monday 12th November we walked into the Procedure Unit at Christies to be met by a lovely specialist nurse called Lesley...and I promptly burst into tears. I think it was the shock to be honest. Id only known for a few days I was coming in for this treatment after weeks of will she/wont she and in the end it happened so suddenly. Id spent the past few days preparing for my abscence from the house, trying to make sure things would run smoothly without me so consequently hadnt given myself much thought at all.
I felt such a ninny. Fortunately Lesley didnt, or didnt show it anyway, and sat us down in a cubicle and went to make us some drinks. (Mines a large scotch please) She then very patiently explained the procedure to insert a PIC line in laymans terms, which was a good job as I appeared to have left my brains at home. She left me to get changed into a gown and lie down waiting, gripping poor Martins hand like a vice. When she returned with this huge trolley she was gowned up too, as if for theatre, with just her glasses peering through her gown. She was very friendly and chatty throughout the procedure, which consisted of local anaesthatic injected into the left vein in my arm (it took her a while to find that, for a while I thought Id left my veins at home as well) then making a hole and passing the long thin blue catheter up the vein, into my chest and round and down. It honestly didnt hurt a bit. I was left with about 3 inches of bright blue tube hanging out. A quick trip to Xray to check it was in the right place and that was that. All done. Upstairs to Nathan House to be shown into my (very lovely) room.
Leanne, a pleasant enough nurse but with way too much make up, admitted me and then Prof Hs registrar came and had a chat and got me to sign a consent form. I changed into my little shortie pyjamas, climbed into bed and we were off.
Martin had to leave at this point, even he needed an hour an a half to get back home for the kids return from school. So there I was all alone, and thats the way it stayed all week.
The nursing shift changed and I had a nice young man looking after me - and he wasnt even gay!
So it started - a couple of small infusions of stuff, a veritable bucket of tablets to prevent hallucinations, fits, sickness, another small infusion of glucose and then, finally, the IL2. Which came in a teeny 100ml bag. And only filled about a third of it. And was clear. I expected it to be neon blue at least and maybe glowing and pulsating. I lay there waiting to feel something as it flowed into my veins - but nothing. In 15 mins it was gone and a normal drip in its place. How disappointing. No reaction whatsoever. I mentioned this to the nurse and he said it takes a couple of hours to 'kick in' so I made a note of the time, settled back, and watched the telly.
9pm, typical, just as 'Im a Celeb' is starting, and I get a few weird sensations. Wave after wave of panic flood over me. My heart beats a little faster. The middle of my back aches really badly. But nothing else. I have a couple of paracetamols for my back and fall asleep.
Waking early the next morning I toddle off to the bathroom to wash and clean my teeth only to return to a new nurse, a lovely girl called Carla, who is waiting to give me my next treatment. Number 2. "Whats times breakfast" I ask......"In a couple of hours, but you wont be wanting any".....Oh dear. So teeny bag number 2 goes in, another bucket of pills and a cup of coffee and I settle back to watch the news.
Its actually 2 hours and 10 minutes. Although I guess all patients are different. It starts with a chilly feeling, pulling the blankets round you, shivering a little - then bang! It hits you. Full blown uncontrolable rigors. Teeth chattering, body shaking so hard I thought I would fall of the bed. Pounding headache. Every bone in my body screaming with pain. Carla was there straight away with the Pethedine - which made me vomit - so then a big dose of anti emetic. I sort of passed out then for a couple of hours and came round soaked in sweat, with a temperature of 39. The nurses do your 'obs' every 15 mins during this phase as your BP plummets (at one stage mine was 55/37 which in my nursing days would have been a resus call) and your temp rockets. It was now 6 hours since my last treatment, just another 2 till the next. In this time your obs have to be within certain parameters, you have to wee, be concious and aware, then you can have the next one. A mere 8 hours between treatments. And this carries on until your body cant take any more and doesnt recover quickly enough.
Tuesday and Wednesday passed in a blur of rigors, vomiting, taking pills, having treatments and injections, refusing all food and drinking loads of cold water. I think it was early Thursday morning when I realised I was on number 7 - 'gosh Im doing well I' thought - well ofcourse I spoken too soon. I had my Pethedine and - it didnt work. I was still having rigors. Lovely nurse gave me some more and I gratefully sank down into sleep.
And a lovely sleep it was as well - until I was most unceremoniously hauled up the bed, had the bedclothes ripped off me and an oxygen mask shoved on. A fan was then placed inches from my face at full blast. I was given both paracetamol and Ibruprofen IV. I heard a voice mutter CCU. Apparently Id been delerious, with a temp of over 40, and talking to a non existant nurse in the corner of the room. Yep, Id gone loopy. Which is a shame because it was the only time in the past 3 days Id been comfortable!
This was pretty scary to be honest, to have nurses and doctors flapping around me and yet I didnt feel ill. My next dose was due in an hour and my temp had to be below 38
It took a couple of hours for my temp to come down enough and for me to squeeze out a few drops of wee so I could have treatment 8. Eight! Thats really good. Unfortunately even with very close monitoring the same happened again, temp over 40, BP in my boots, I went loopy. So that was that - my body was saying 'NO MORE'
I have to admit it was a relief. Thursday evening I came round properly and began to survey the damage done to my body. I was swollen up - my fingers, arms and legs were almost twice their normal size and the skin was stretched and sore. My mouth, tounge and lips were cracked and sore - all I could manage were sips of cold water. Every joint in my body hurt. My skin was dry and flaking off in sheets - I looked like a lizard! And my poo was bright green, Apparently thats normal - IL2 gives you bright green poo - but it comes as a shock when you first see it.
I was still on shed loads of drugs but very keen to come home so eventually the doctor said yes to Friday evening. I still couldnt manage to eat anything, not even a bit of jelly, but Id lost my sense of taste and appetite anyway so that didnt matter to me.
I had my PIC line out the next morning, my arm was so swollen it had to be removed. I was weighed and had put on 6kg in 4 days, this is fluid ofcourse and Ill soon wee that away in the next week or so.
Martin picked me up and brought me home, together with a carrier bag full of drugs, and I went straight to bed. Im so weak still, can hardly walk upstairs unaided. Cant sit out of bed for more than about half an hour. Still not eating much due to awfully sore mouth and tongue and no sense of taste. Still peeling like a lizard - and itching - which drives me wild. Every inch of my skin is scaley and dry and no amount of moisturiser helps. And my poo is still bright green.
But I did it. Eight treatments. Which is a bloody good start because it was SO hard.
But maybe not as hard as it will be next week when I go back in to do it all again !