We arrived at Christies a little late on Monday morning due to the awful weather. Torrential rain, flooding everywhere, and we were stuck in a queue on the M6 for over an hour. Not that I minded much - it was delaying the inevitable for a little while.
Twice they attempted to insert a PIC line into my left arm - and twice failed. Which left us with a little problem as my right arms veins are still out of action. There was no other choice but to go for a Hickman line on the left side of my chest. This is a pretty unpleasant procedure. The line goes into your neck then comes out of your chest in a sort of a loop. There is a lot of pulling and pushing, all guided by ultra sound but fortunately no real pain, just discomfort. Anyway eventually it was in, and working, and I was left with a length of white tubing coming out of the top of my left boob. So it was back up to the ward to await my first dose of IL2.
Martin went home before all this was completed. The weather was getting worse and the last thing either of us needed was him stuck in traffic for hours.
I dont do well on my own. Without the support of family and friends I shrink and turn inwards. Lovely as the nursing staff are they cant replace the presence of your family and comfort of your home surroundings. Human relationships are the most important thing we have - without them we are nothing, this is something I have come to appreciate so much over the past year. The strength you have as a person is very much dependant on that which you derive from those around you. So again, I felt very lonely. And alone.
Prof H popped in with a big beaming smile, which is unusual for him. He pronounced himself very pleased with my results and very optimistic for a complete response this time. So that gave me a huge boost.
And so it started. And I have to admit that it wasnt so bad this time. The side effects were all there ofcourse but this time I seemed to romp through the first 4 doses really quickly. Then came the usual problems with my temp and blood pressure. One far to high, the other way too low and it took 12 hours before I could have dose 5. By this time I had galloping IL2 diarrohea and the constant leaping in and out of bed doesnt help your BP to settle. So it didnt. 16 hours later it was still way too low for me to have another dose. By this time it was Friday, doesnt time fly when you are having fun, and it was decided to call it a day. 5 doses this time - not bad but not brilliant. I just hope its enough.
Martin arrived at lunch time to take me home, things went very smoothly and I was tucked up in my own bed by 3pm. And thats when it really started to take effect.
Late Friday evening I noticed the left hand side of my face was very swollen. Not just 'IL2 bloated' but hard with little lumps under the skin surface. Then it moved around to the right hand side. I took some Piriton as I was convinced it was some kind of allergic reaction and went to sleep. And woke up at 3am literally covered in these hard itchy lumps. All over my back, under my arms, in my hair line. And I felt like my skin was on fire. I paniced slightly them calmed down as I realised it had to be some kind of allergy similar to the 'itchy skin' I had previously. I took more Piriton but sleep was impossible so I paced the floor for a few hours rather than tossing and turning in bed and disturbing Martin.
The lumps eventually went away but kept popping up in other places all day on Saturday but I think the Piriton was starting to have some effect as it wasnt as bad. In the meantime I still had diarrohea and was being sick - so it was a pretty miserable time all round. Sunday I felt a little better and finally managed to sleep - almost all day - which was so nice.
Today, Monday, Ive woken feeling much brighter. My skin still feels 'weird' - sore and itchy and very sensitive, but at least no lumps today. My face has started to peel again so I look like an extra from The Mummy - but Im starting to recover, slowly. I may even try eating today, which will be a novelty. Im living on a veritable cocktail of drugs right now to control the itching, diarrohea, pain, sickness. If you held me upside down by my ankles and shook me I would rattle !
So all in all its been another horrid episode - on Saturday I was swearing I would never, ever have any more IL2. Today Ive resigned myself to the fact Im going back in next Monday. And hopefully by the weekend Ill be determined to give it my best shot again. This is a war that still has to be won.
