1.6.16

Its June already, and possibly the most challenging month of the year for me. I am waiting for a phone call to tell me what time to be in hospital to start my last (hopefully) cycle of chemo. The worst cycle I've ever had. I wonder how i'll cope with it? Will i breeze through it? Or will i struggle this time? Time will tell. I'll let you know how it goes. Now I'm gonna enjoy a decaf coffee and some scrambled eggs. Catch you later.
Its not a good start! Ive just put all my tabs in my little pink dosset box only to tip them over and mix them all up. Im guessing which ones are which, fingers crossed! Then i got back upstairs with my coffee only to realise id left my hot water bottle downstairs (feel a bit chilly today, maybe anxiety induced?), and now my laptop is about to die and my charger is downstairs! They say things happen in threes!
Just to explain, instead of day 1, day 2, etc, the days are -6, -5, heading for the transplant that will be Day 0. Forewarned is forearmed!
Day -6. Well I've arrived! Ive been put in a room with a dear little lady with dementia. She's constantly laughing and chatting with herself. She keeps asking where her biscuit has gone. And now her ear seems to have dropped off and she can't find it, and nobody seems to be doing anything to help! She's just shouted, 'oh shoot'. She's a dear little thing but i would rather be somewhere with a little bit of peace and quiet. Hoping to be moved to another room later.
Not seen anyone yet except for one HCA who came in and weighed me......you have to get your priorities right don't you?
Well I've had the first lot. The karma sutra drug. Wow. That was horrid. The first 45 minutes were ok but suddenly my nose blocked up, my eyes were stinging and my throat was throbbing. Almost like that feeling when you eat a really hot chilli. It was so uncomfortable, almost unbearable. Its going off now the drugs finished. Thank god i only have that once.
So this is me before karma sutra.....

and this is me after 45 minutes.

Face all red and swollen. I have been likened to a swan vesta! Luckily its gone off now and normality is restored! Its amazing what these drugs can do. 

And I've found out the drug is a derivative of mustard gas! That explains a lot. 

Day -5. Feeling ok. Waiting for 2 infusions in the morning and another 2 in the afternoon. It turns out i had the first lot at 11am so the second lot can't be till 11 tonight! Hopefully ill sleep through it. Cant say I'm feeling wonderful after the first lot, and feeling very tired. 

Day -4. Same old, same old. Theres a few bright things on the horizon today. Paul, the charge nurse, is on duty today and theres a bit of banter between us.  A visit from the lovely Dr Jack, although his phone kept going off and he had to keep leaving me. So rude! The nurse said he's on call but I'm sure its another woman! He didn't have much to say other than to liken me to a squirrel today as i was all curled up on my bed whilst having chemo. He's gonna visit me over the weekend apparently. Hope he brings flowers! And then one of the chief executives came onto the ward to see how things are going so she came for a chat with me. I was asking how much all this treatment has cost. From last november and the PET scan, through an op to remove the gland, to a biopsy under ultrasound, to eventually having chemo x 2 admissions, all the stem cell growth stimulating jabs and district nurse visits, stem cell harvest, CT and radiotherapy, and now more chemo and stem cell transplant. And theres ongoing hospital visits and treatment. They will try and find out a rough idea but won't be able to tell me the whole cost. We are so lucky with the NHS. I never realised as much as i do now how lucky.