Freedom!

Monday
Its morning at last and after a tough night I am still in pain. I get thinking though, that if it is just my stomach needing to heal now, and that all can be done is to administer pain relief, and since I am now white cell healthy (they are above 2 not sure by how much), then perhaps the doc will agree to let me home if i ask nicely?!

When the doc arrives on his ward round, he beats me to it as the first thing he tells me is
"Well I think you can go home if you want!" I let out a cheer!
We then discuss other aspects.
Apparently I may have a hickman line infection. A bug which is associated with Hickman line infections was isolated in the blood samples taken following the start of my fever the week before. More evidence is that it was found in the line sample but not seen in the arm sample. (they culture blood samples from your arm and from the hickman line for bacteria) . This would be a bad thing, as I dont want to lose the Hickman line this close to the end of treatment. Fortunately one of the three antibiotics they hae been giving since the fever was identified was Tagoplanin - the correct one for the job. So what it means is I need to continue on that, so will need to come in every afternoon to have this injection.
The next news is that the next cylce, no 4 and as cycle 2 the IVAC-R protocol, will be scheduled to start on Monday (2nd March). This will be the final planned cycle. It will be a busy day: blood tests for checking bone marrow compatibility with my brothers marrow donors just in case it is needed, a heart stress test, and then then day one of treatment itself starting in the afternoon. Cool - no point messing about!
I ask more about what happens after treatment finishes. Apparently I will get monthly blood tests which will let us know if there is a relapse. No cunning cancer marker detection will be used, which whien used can thoeretically detect minute traces from specific entities in the blood. This I am told is not helpful for my particular leukemia, so fair enough.

So this is great and a huge bonus, I am going home for a WEEK!
After the good news on these "release days" I generally find the day to be tiring and stressful. I am so eager to get home I always try to speed up the process, or at least prevent delays. I call dad and ask him to go through my home drug store so that I can tell the phamacisit what I need and what I do not. This is part for Karma of not wanting to waste NHS funds on extra drugs, and partly because the more drugs you order the higher the chances their delivery to the ward will be delayed! I frustrate the Nurses by constantly asking when I am due to go and that I have cetain injections due in the afternoon - as if they didnt know already. Martin in hyper mode is a scarey thing for others!!!

I then get paranoid I am developing a fever. My temp was 36.0 first thing, then 36.7 followed by 37.3. Thats would be ok, but I feel hotter and sweat heaps as the day goes on (it was a hot day on the ward). What if I am tested again before I am discharged? If my temp is over 38 I would most likely lose my freedom. No no no no please stay down!

By 6 all my drugs, and Michelle, have arrived. We pack up, get my instructions from the nurses and I leave with the biggest smile on my face ever :)
Back home Mum has cooked supper. A family favourite, fish pie, but i can barely taste it and my stomach complains and spasms. I realise that while being home will be great, I am so much weaker and in more discomfort than on any other visits home. But i know i am in the right place. So the evening is painful, my stomach giving a fire like pain because of the Mucositis. After some food I try to hang on in for the evening, but have to give up and head to bed to fight it out.

Tuesday
After a painful and fitful nights sleep, I am tired but delighted to be waking to Dawn in Fittie. As Michelle readies for work I go for a brief cup of tea to the beach - my favourite pilgrimage. It is so good to be at home despite the pain. Freeeeeedom!
M&D and some friends pop in in the morning, I get a brief kip before dad picks me up for the hospital. The first clinic visit is quite funny, as no one knows where my medical record have gone and ask me what I need! Eventually the mystery is solved and I get my injection. Bump into docs and ask about laxatives, they recomend I continue with the senna on every day (ouch!!). Am taking the senna at the mo, and let just say it works no problem within one dose so it seems, but I am pretty sure it adds to my pain as cramps. So I am not convinced I will take it every day. I decide also to test myself out with pro-biotic yoghurts, if there is any case for them it must be for someone like me with a nuked degestive system!
Food is also problem, I still have little urge to eat. I have lost a lot of weight, I am now below 10 stone! I can't say there is anything I want to eat particulary so have to just force food down, and then it generally aggrevates the old stomach. It doesnt help that nothing tastes "normal" thanks to the chemo nuking my taste buds again. But the good thing is that being home I get freedom to choose what I try, and when so I can have smaller meals more often. I'll be treating food at first as a refueling task to get my wieght and strength back on track.
I get the same old camps and pains in the evening, especially after eating. So while this is my "holiday" part of me wishes to jump to the next day (with more sleep and healing).

Wednesday
I do sleep well, but only until 5. My brain is now lit up and stomach keeping me awake. I get up and write an email to my grand aunt, who I miss and who lives in Africa, who I have wanted to write to for ages. Back to bed I resolve to have a slower day!
Up. Have visits from parents and friends through the day, and enough time for a short siesta, with Buttons curled up and purring away!

The clinic today is amazing, the nurses are so cool they have my injection ready prepared, we arrive and I am treated and out of there faster than a Lewis Hamilton pit stop. I am beaming and thank them profusely. Dad is cuffed too as he is rewarded for his optimism that we will be fine parked in a 30 min bay!

I leave energized with extra time on our hands, so as it is a beautiful afternoon we have a walk around the South Don headland on the way home. Great to do something normal, but why did i forget my beanie - ice cream headache!!! I see a small wave on the Don and have an urge to get a waveboard and test it out - good to find that urge still there....

Same as most days though, by evening I am in most pain and its hard to relax.

Thursday
Definitely feeling bit better, pain is less severe and less frequent. Catch up with email - it is amazing how long that takes, but its so rewarding catch up with friends i would consider it part of my therapy. Eggs and toast my new idea for protien and energy boost. (hm maybe I should be trying the Laird Hamilton breakfast of eggs white and oat meal, wonder id he'd reply with the recipie...)
Activity continues all day, Was fairly active in that did not
Mid eveneing I am not so bad but still crash and in pain, so pain killers and bed required!

Friday
Hey I am now up to date! Feeling better still today, at least from bed where i am writing this! Maybe I'll try fixing the car which broke down again on Dad when he went to play golf - poor guy is jinxed - I warned him old surf mobiles are notoriously fickle!