After an unremarkable weekend (a calm before the storm) I am due a meeting with Prof Marks to discuss the next stage of treatment. I have not even had the bone marrow checked yet. Something has changed, treatment should depend on how the bone marrow test goes? On top of this I am due 3 operations this week, 2 on my leg and 1 to put a new line in. This means nill by mouth for 3 days, I’m supposed to be putting on weight!!
The first operation is to clear out the dead tissue caused by the infection and to stitch the wound up. I am just told first thing in the morning I’m nill by mouth, operation hopefully will take place around lunch time. Lunch passes, Dinner passes and I go into operation around 10:00pm starving. The operation takes about an hour and an half. I wake up in the post op’s room a familiar place already. It takes until 12:30am for a porter to arrive to wheel back my bed to ward 62, he then proceeds to argue for another half hour that no one should be moved after 12? After some persuasion I’m taken back to ward 62. Hungry I eat an entire pack of grapes. Trouble is stomach had shrunk food goes in but soon comes back. I need a few hours before I can eat after an operation. At this time though I just need sleep. Operation went ok think they got all the dead tissue.
Tuesday I’m due a line in the neck, this is a minor treatment only requiring local atheistic. As a result it should not require nill by mouth. I order a large breakfast and start looking forward to it. My stomach is rumbling as a nurse comes in and tells me I’m nill by mouth. Nooooo. I ask when my operation will be. No one knows when it is scheduled. Lunch passes, dinner passes only sips of water allowed. The treatment again finishes around 11pm once again this time I have the knowledge I have another operation tomorrow feel bloated so don’t even attempt any food. 3 days without food. Maybe I should sell some of these tricks to David Blane. New line is inserted no real problems.
Wednesday operation is going ahead, They allow me a cereal at 6:00am but this means operation is planned for 10:30pm, I now know all the staffs names in the atheistic and post op, they don’t expect to see you again your meant to be in once get operated on then go recover. Wednesdays operation goes without any hassle. Stitches are put in leg and I am left to ponder my excuse for the large scar across my leg. Its quite large so I could get away with Shark Bite but that’s a bit to boring I’ve decided upon been attacked by some Hungry Hippo’s.
Operations are now routine. I need out of this hospital I’m starting to know more people than most of the staff. Its only the Eye hospital I’m yet to visit (appointment booked already).
As mentioned earlier I was due a meeting with Prof Marks. This happens on Tuesday evening. It has to be said Prof Marks is extremely blunt and frank about the processes that he is recommending I undergo and the risks associated with them. I have not even gone through the bone marrow tests. It was always said that we would need these before deciding the best treatment for me? What had changed. Well it turns out I’m a freak. Usually people have 1 variant of Leukaemia occasionally people have 2. Having more is extremely rare and effects future treatments. I have 5 different variants, that’s just greedy… The effect on future treatment is that further Chemo is difficult as it would need to treat 5 different types. The result is that I am now I will have to have a transplant the option of continuous Chemo is not viable (21%? Chance of survival). The chances of it coming back long term is also greater for a young person like myself I don’t like the idea of having the disease as a shadow over my head.
So the best option for me is a transplant. The chance if survival (long term) is 45%. Not great but better than 21%. This is assuming that I manage to sort the problem with the leg out before the transplant. Going into the process I cannot afford to have any infection. Any infection could prove fatal as what happened with my leg proved. They will be taking away my immune system very quickly leaving me extremely exposed to any infections that I already have or anything brought in by a 3rd party. The Chemo will be stronger than any of the Chemo I have had before. It is killing of all stem cells in my system. Phase 1 & 2 of Chemo did not manage to kill all of the stem cells and were 4 weeks each. This stage is 10 days long and must kill everything. I will lose hair quickly, my mouth will swell to the point where I can’t eat. As well as all other Chemo side effects. Once this is done the transplant will take place this is known as day 0.
After day zero a new set of challenges need to be faced they want me to get 2 types of infection graft vs leukaemia & graft vs host. Both of these can be fatal or can cause severe side effects (liver failure, kidney disease, blindness etc). 30% die at some point in this transplant… The reason they want you to get these now is that they can control and help your bodys response. If you don’t get them at this stage then when you get them at a later date the leukaemia will come back and you enter remission, for those in remission the is little chance of survival, you need to beat this disease 1st time.
25% who make it through go into remission and then pass away. Pretty depressing conversation. Anyway I’ve just got to concentrate on the 1st part I have a 70% chance of survival and with a bit of determination and will I can get through this stage. Then view future challenges of remission if and when they occur.
I will be moved to the bone marrow transplant ward. They are far more strict on infections and as a result restrict visitors to those on a named list. I will have to name the 4 people who will be allowed to visit in advance, no one else will be allowed. Lastly I will be stuck in this unit for 100 days after the transplant and 10 days prior!! This is due to start the first week of February.
I was told this with my parents they were quite shocked, I talked about how could see the end of it, rehabilitation. My Mum left first, just before my Dad followed shortly after but not before reminding me that I should make a will, I had already considered this and just needed to make a call to sort out. Not many people were aware that I was still in hospital, as I’d been slow on updating the blog (partly because of difficulties of accessing the internet) and had not advertising it that readily. I needed to get some support from as many friends as possible before going into isolation. I sent out a text message saying to people to come and visit as soon as possible before I went into isolation.
The message I sent out had the desired result I had a chain of visitors through the doors. This was a great relief and a much needed distraction after hearing the news often just talking through the decision and the dangers. It allows me to accept the facts, each time I tell someone the risks I accept them a little more. Or each time someone just comes in a tells me about rugby, their Christmas or New Year or Dean and his terrible jokes it all was needed and did a job. For the rest of the week I was entertained by more visitors some bringing gifts in advance of my birthday next Thursday the best of these were a collection of photos from Chaz & Lexy, the reason why I appreciated it so much was that every photo in the book was of something I am looking forward to doing when I’m out of hospital, it had Brizzley, skiing, fancy dress, super Sundays in Racks, NHD add to this pictures of cheerleaders from Dubai 7’s I now have a ultimate book to keep me going. With an air rifle I’d also have enough DVD’s to start a pigeon pull business.
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