Well, I have got Hodgkins Lymphoma (Lymphocytes Depleted) which according to Dad's research is common in 18-39 yr olds and 50-70 yr olds, leaving out the 40 yr olds completely.
The treatment is the same as for the other 3 types (8 cycles of Chemo over 6-8 months) but they do something different at end and I'll need the stem cell autograft test. UCH not got back to them bout whether I need that now, but Ali thinks it's highly unlikely. So...if UCH don't recommend this test then it's quite possible that I'll start Chemo at end of this week. They want to keep me in until my skin infection has gone though, but Chemo helps stop itching and so (touch wood and whistle) I should be out of here for Crimbo - HOPE SO, SO MUCH!
In terms of me going back to Brighton, Ali has said that we need to see how I respond to 1st cycle and also how it makes me feel, so we can determine when, and how long for, that I can return. Am DESPERATE to get back. Lauren was so excited when I told her. Hope SO much we're not both disappointed.
PICC line's in right position. Still doesn't draw back but Ali said it's not a prob. Chemo can be administered via line and blood tests will just have to be done in traditional way - which is fine, as long as I can lay down.
Mum, Dad and I went to Pine Trees restaurant upstairs and Ali W from EIHMS was tutoring a student there so how grotty I look at mo will prob be all round the Institute by now.
Had an OK night. Legs and feet have been dressed loosely as the lesions are all gooey (nice!) and they were sticking to sheets, so everytime I moved it opened up the wounds again. It prevented me getting at legs to scratch but it's REALLY hot now and I resemble Michelin Man. Gabapentin had no real effect, but suppose takes a few days to kick in. Everyone says Chemo will cure it so this is all temporary measure to ease pain.
Mum, Dad and I were discussing re-decorating my room while I'm still in here. They have been absolute angels through all this. Could not have got this far without them. This has affected us all and yet they only care about me. I love them SO, SO, SO, SO much and owe them my life.
10.39pm: Feel a bit low. Been a busy day. Linda came round this am and talked to her for quite a bit. Ali came round to weigh me as I'm starting ABVD Chemo on Fri morning. It lasts about 2 hours and goes into my PICC line. Joseph (Specialist Chemo Nurse) came to talk to us. He's lovely! I will need treatment once a fortnight and blood tests once a week so I can go back to Brighton in between. He said I need to listen to my body but normality is v important. I just need my legs to get better. They are SO painful and I feel like a cripple hobbling to the loo. I'm virtually imprisoned on my bed, lying flat. Really pissed off.
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