Terrible night. Feet, ankles, left leg (near knee) and bottom infected really badly. Each time I managed to get feet propped up on pillows my bum would be in agony. Woke up about 3 and felt really sick. Felt that collar of my t-shirt was wet and my stitches were starting to ooze. Panicked big time. Called nurse and was vomiting into cardboard bowl while she tried to apply a pad to my neck. Cried loads and explained that was scared of getting results. Nurse was so lovely and made me a cup of tea. Was too paranoid to go to sleep. Thank God Daisy bought me in her old Cd walkman and I asked Mum to bring in my Tori Amos boxset...got me through some dark hours...although when '1,000 Oceans' came on I got a bit freaked as I think it's a song I'd have played at my funeral. Due to this I ended up calling Mum at 6am and asking if she could come in at 8am. She did and by then I had calmed down a lot but was still in SO much pain.
Palliative care counsellor (Linda) came and talked to Mum and I, and I was able to voice my concerns that Mum doesn't want to get upset in front of me and I don't want to get upset in front of her - but I think we HAVE to...or we're going to have a nervous breakdown - was v good to speak to someone outside situation and yet who is trained and well-informed.
Consultant came round at 10ish. Still no conclusive results. They think I have Hodgkins' but there are 4 types - one of which is lymphocytes depleted (which only really occurs in the elderly) and that's what they think I have which makes treatment a bit more tricky. They're now saying they'll have definite answer Tuesday and I may have to have an Autograft Stem Cell procedure thing done - depending on Bone Marrow results. Consultant says he knows it's frustrating but it's vitally important to get treatment right from start so it's better to take longer at mo, rather than have to go back and do all this again because they guessed the appropriate treatment.
Dad then arrived. Needless to say Mum and I were in bits. I can see now that Consultant is completely right and I would far rather they take their time and get treatment bang on, but at time was so frustrating as had prepared myself for news this morning and yet still in limbo. I just wanted to know. I can cope better then when I know what I'm dealing with, but this not knowing is seriously DOING MY EFFIN' HEAD IN!
All the nurses (especially Michelle and Becky) were so lovely to us all - made us all tea, made my neck dressing a bit more comfy, even got me a salad to eat once I'd had a nap as I wasn't up to eating the lunch that had jsut begun to be handed out. Nurses are magical creatures. Crap hours, crap pay and let's face it - a lot of metaphorical and literal crap to deal with and yet they're still so shiny, caring and kind. F*cking Government needs to pay each one a million times what they're on now.
Day got better after I'd had solid one and a half hours sleep - went to shop and cafe in wheelchair, ate dinner, watched first 'Jam and Jerusalem' episode on PSP and skin's lot less painful. Am now on 2 different IV antibiotics, Piriton and Ibuprofen. Feet already lot less swollen. Taken photos on camera phone as there is no way I can describe how utterly repulsive they look.
Am looking forward to second episode of 'Jam and Jerusalem' - humour is truly the best medicine and the greatest form of strength.
Rebecca, Angela and Henry are going to visit me over the weekend, which will be what I need to give me a bit of normality.
Linda will pop back on Monday to talk about the weekend and how I'm feeling about stuff. It's SO good that they offer that, but I have to say that doing this journal is best therapy. Even if I just stick in photos or articles or quotes I like that particular day, it's a form of expression and I think expression is vital, vital, vital at this juncture.
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