Tomorrow will be a big day for me. I received a letter in the post last week to say that my disease, which we thought had been kicked into remission, looks like it is active again. That was a real kick in the privates for me.
I will be announcing it to the kids tomorrow, I have pre-warned the school and the kid's counselor (they have a counselor to help them through my chemotherapy 2 years ago) so they will be on hand on Friday to pick up any fallout that may occur.
I have been told that I can no longer have the drug of choice, cyclophosphamide, as I have had enough of the drug in my lifetime, any more could cause me to develop bladder cancer, something that took my wonderful dad from me, so not a road I want to go down.
Instead, they are using a new drug on me called Rituximab. It is proven in cancer as very effective but its use in vasculitis and in particular GPA is only just been approved by NICE - National Institute of Clinical Excellence. The funding has been applied for and once approved, it is intended that I start it pretty much straight away.
The treatment will be done via an injection, infused over 7 hours on day 1 and again on day 14. Then blood tests will be taken to check its effect on my immune system. The drug is bolstered with steroids and anti-emmetics (anti sickness drugs) and various other things. A very close check will be kept on my renal function as over dose of Rituximab can have an adverse effect on the liver and kidneys, and as I suffered liver failure after the last lot of chemotherapy (thankfully I have regained near perfect renal function) they dont want that to happen again!
Anyways, Diary entry for 2nd December -
Still have abscess behind my tooth on the top right of my mouth, Taking Flucloxacillin 500mg to deal with that, and the infection is going. Pain is being controlled with 2x 500mg co-codamol which includes 30mg of codeine per tablet, and 500mg naproxen - off to happy land we go!
I am still taking the 30mg leflunamide to suppress my immune system, but it doesnt appear to be working otherwise I wouldnt be needing the Rituximab. Supporting the leflunamide is my daily 5mg of prednisolone steroid which i had hoped to get rid off as it piles the weight on me.
With that in mind i have been prescribed Orlistat, a fat reducing pill which lines your stomach making it harder for the fat to be absorbed in an effort to get my weight down as much as possible before i start my treatment.
My throat is feeling like it is narrowing again, with shortness of breathe becoming more common. My joints ache, in particular my knees and hips. My right ribs really hurt at the moment, but I can at least blame that on the horse kicking me rather than my illness. The bruise is something to behold!
Keep draining my eye of gunk from the abscess in there, this time I had blood come out with the gunk, this usually indicates a sinus infection, which i can deal with. The wife wasnt impressed when i ran into the lounge, with bloody tears shouting "look - stigmata"! I thought it was funny and you have to laugh at the illness otherwise you would go mad.
Fatigue - I am soo tired at the moment, another symptom i suppose i should have paid attention to to prepare me for the inevitable.
Right, on with the rest of the day, catch you all laters
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