My birthday started in earnest around 7:30 the morning staff came into my room and sang happy birthday to me (remember I'm on quite a lot of Morphine still at this point). This is followed up half an hour later by the day nurses coming in and singing happy birthday. This time they bring me a cake.... Perhaps like the man who was attacked my tickling ferrets I would have nurses and cake all day. If so I better request more Morphine.
Sadly the was no more nurses coming to sing to me and bring me cake. I was cut a generous portion and the rest was passed round the other patients and the the should have been enough for the nurses to have, (unfortunately a familiar story to many offices.. the cleaners ran away with it). In a timely fashion my parents rang to ask if I needed anything, another cake was needed to keep the nurses happy. This arrived for lunch time (a Caterpillar cake), and was split around again, once again I was given a large portion. Well 2 cakes in 1 day.. I am trying to put on weight. I was later brought a pack of 6 mini Caterpillar cakes which I had to try as well.
The cards were arriving a soon took up the window sill and the notice board. Presents then started to arrive. Doctors also seemed to think operation had gone well. Also I may be able to get out on day release next week before isolation. Getting out of hospital would be the best present I could have right now. Have a good day with plenty of well wishes. Manage to eat a silly amount of food. This is confirmed early Thursday when weight is checked and I've managed to put on a whole kg, not bad seen as I've been on nil by mouth for 3 days of the week. More good news follows my CRP count dropped straight after the operation a good sign that the infection is on the way out. Friday I get to see what they have done to my leg. The dressings come off, I have had 2 tubes draining fluid from my leg, I thought that these would just relate sorting out the remnants of the fluids left behind my infection. These however were huge tubes. Once they started moving them (they start just below my hip) I can feel them grip muscle just above my knee. The vacuum pump is turned of and the nurse starts to slowly pull the tube out. This is agony. It feels like the vacuum is still on.. Can feel it grating on the sides as well this is not good. They pull this one out, each time I winch they stop. They finish eventually but decided to do the 2nd one with some more painkiller. They get the Morphine for me. Iain turns up, I said to him that I might need a destraction for the next 20 minutes. So we play connect 4. We get through a few games before the nurses come back. This time I tell them to do it quickly. Thats much better not much of a problem this time.
I have been asking nurses and doctors for the last few days about my transplant when I'm due the pre-op tests when I'm due to go into isolation. Answers on CRP counts are slow to come back, in general no one seems to know whats going on. I'm getting quite frustrated.
Saturday brings the best news of the week, I'm early on the doctors round and I vent some of my frustration on the doctors. This is half a sign of my frustration of been stuck in the same room for so long. Later in the morning I accidentally flash one of the more senior nurses. One of these actions caused the nurses to decide I was well enough to deserve some time out. It started off with an offer of been home Sunday for a Sunday Lunch but soon was upgraded to been home on Saturday!!! I ended up watching OB's play rugby... Fresh Air never tasted so good, shame OB's played so badly (obviously desperately missing myself). Get home and get home cooked food! Also have the unforeseen benefit of celebrating Christmas which had been postponed. More presents and get to open more cards. How much better can a day get. Start of pissed off with the world end up having Christmas day, what better way to cheer up.
Sunday trys to beat it with leaving hospital and heading home and having a brilliant Sunday Lunch. I clear through emails and will reply individually but news that hear my friend Anna from Milk Link has had an accident with Fireworks over Christmas puts a downer on the day. I wish her all the best in recovery and may bump into you in the EMT when I have a check up some time in next week or so.
Thank you for your support keep it coming before I go into isolation on the 11th February ready for transplant on the 19th, followed by 100 days isolation. I hope they keep letting me out over next week or so should be able to catch up on emails.
Cheers
Robbie
Sunday 27 January 2008
Thursday 24 January 2008
21st to 24th Happy Birthday
Monday remained quiet, watching DVD’s, reading etc. I received some bad news from Prof Marks. The transplant may be delayed 2 weeks, this was later reduced to 1 week. This has the advantage of I can see more of my friends but in truth it is delaying the inevitable. I just want to get on with it. The quicker it starts the quicker I’m potentially cured. I’ve always been told I’m very patient. I may be losing that quality. My CRP counts go up.. the is still an infection. Where? I have developed a hard lump by the bandage on my leg. Prof Marks decides scans are required asap. Visitors come on in leaving me absolutely knackered, I knew about some but not all of them. I was left tired out and once they had left I tried to sleep straight away only for constant drip or change of drugs to wake me. I was actually of my drugs quite early. However someone else on the ward had been given something which sounded brilliant. I was woken by a man in hysteric laughter. This continued for around 10 min. At first it was quite funny but then became quite annoying as it kept me awake. A nurse heading over and I could clearly hear her ask “Mr ???? what is wrong?” to which the reply was “get these ferrets off me they are tickling me!!” The nurse must have caught all the ferrets as he stopped laughing (for awhile).
I only found out today that been in a room in isolation really does isolate you from everything outside the room. I had still considered myself part of the ward. The nurses gossip and you can hear enough to know if it’s busy or quiet. I had distracted myself with the 2nd half of Godfather 2 but on a general observation check up making small talk to the nurse turned out I’d been missing a massive drama on the ward. The entire ward had been quarantined. A case of the Nora virus and C-Deficial (forgive spelling) had been found in the morning. This meant no visitors and more importantly I was not allowed to go for any scans or tests as no one was allowed to leave. Tracing any infection and acting on it would be impossible without leaving the ward.. I’ve been in quarantine for the last month so I can’t have it! I just want a scan done on my leg to see if its infected? Eventually I’m quickly prepared and rushed out of my room for a CT scan. I assume this must have been the infection controls tea break. The CT scan is extremely useful it shows their is something there but the doctors don’t know what it is? They decide to operate, I assume this would be another cut open and take everything out operation. This would mean the scar would be as big as my thigh… that would make a Hippo slightly more believable as it would have had to have been a midget hippo before, I must also learn how to explain this in Spanish.
This carries on to Wednesday and I’m told I’ll be in surgery tonight. Nill by mouth again (going to make up for it with cake tomorrow). I return to ward 62 around 11:30pm I still have antibiotics to go in and after previous experience do not try and eat. The leg is agony I request my painkillers quickly. They arrive around 20 min later I’m not impressed at all. It feels like someone’s taken a hatchet to my leg for all I know that’s what they have done. Its about an hour after I returned, I’m starving 1 hour should be long enough to wait. I attempt some toast. I predictably throw up. I’ve thrown up my painkillers… they won’t reissue them!!!! As I know my parents read this I can’t repeat what my words to the nurse was after I’d thrown up. I had to revert to taking the morphine based painkillers that I’d lost a weekend on around Christmas. Again I had to ask them to up the level for them to affect the pain. I would wake up every hour and half feeling like I’d been stabbed again and the knife was still in my leg.. they would then dose me again and I’d sleep. This carried on from 1:00 am until 7:00am (I think). I started my 28th year on this planet with 4 heavy doses of Morphine. Happy Birthday!!!
I only found out today that been in a room in isolation really does isolate you from everything outside the room. I had still considered myself part of the ward. The nurses gossip and you can hear enough to know if it’s busy or quiet. I had distracted myself with the 2nd half of Godfather 2 but on a general observation check up making small talk to the nurse turned out I’d been missing a massive drama on the ward. The entire ward had been quarantined. A case of the Nora virus and C-Deficial (forgive spelling) had been found in the morning. This meant no visitors and more importantly I was not allowed to go for any scans or tests as no one was allowed to leave. Tracing any infection and acting on it would be impossible without leaving the ward.. I’ve been in quarantine for the last month so I can’t have it! I just want a scan done on my leg to see if its infected? Eventually I’m quickly prepared and rushed out of my room for a CT scan. I assume this must have been the infection controls tea break. The CT scan is extremely useful it shows their is something there but the doctors don’t know what it is? They decide to operate, I assume this would be another cut open and take everything out operation. This would mean the scar would be as big as my thigh… that would make a Hippo slightly more believable as it would have had to have been a midget hippo before, I must also learn how to explain this in Spanish.
This carries on to Wednesday and I’m told I’ll be in surgery tonight. Nill by mouth again (going to make up for it with cake tomorrow). I return to ward 62 around 11:30pm I still have antibiotics to go in and after previous experience do not try and eat. The leg is agony I request my painkillers quickly. They arrive around 20 min later I’m not impressed at all. It feels like someone’s taken a hatchet to my leg for all I know that’s what they have done. Its about an hour after I returned, I’m starving 1 hour should be long enough to wait. I attempt some toast. I predictably throw up. I’ve thrown up my painkillers… they won’t reissue them!!!! As I know my parents read this I can’t repeat what my words to the nurse was after I’d thrown up. I had to revert to taking the morphine based painkillers that I’d lost a weekend on around Christmas. Again I had to ask them to up the level for them to affect the pain. I would wake up every hour and half feeling like I’d been stabbed again and the knife was still in my leg.. they would then dose me again and I’d sleep. This carried on from 1:00 am until 7:00am (I think). I started my 28th year on this planet with 4 heavy doses of Morphine. Happy Birthday!!!
Sunday 20 January 2008
12th to the 20th January. Shock & Awe
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.
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.
Friday 11 January 2008
Light At End Of Tunnel
I see the wound this week. I am visited by plastic surgeons, dressing specialists and general surgeons as well as my consultant. All have a good prod.. the plastic surgeon actually puts his finger inside the wound. The is an argument about what treatment I should. My consultant wants an operation, plastic surgeon wants a vacuum dressing, the dressing specialist wants a honey dressing. The dressing specialist wins as she is the only one with access to the vacuum dressing and the plastic surgeon refuses to operate. I look at the wound every day now when they change the dressing. The honey does seem to be having a positive effect.
Other news is that I’m almost certain to be having a transplant. Their is an donor lined up for 3-4 weeks. My leg needs to be ready by then. Once the transplant is done I could be beginning to get back to normal within 2/3 weeks. Could this be light at the end of the tunnel. However have not heard all the risks and details yet..
Other news is that I’m almost certain to be having a transplant. Their is an donor lined up for 3-4 weeks. My leg needs to be ready by then. Once the transplant is done I could be beginning to get back to normal within 2/3 weeks. Could this be light at the end of the tunnel. However have not heard all the risks and details yet..
Sunday 6 January 2008
STACK IT
I’m improving; my leg is still more mobile. I have still not seen under the dressing. I start wondering short distances round my room with a hobble and very unstable but I’m just glad to be out of bed and moving by my own steam. With this confidence I get up in the middle of the night to make it to the toilet, normally I would have to call for a nurses help but I don’t see the need. Half way in the 3m journey my legs buckle I pull it together against a chair, then as I attempt to go again everything goes. My knee folds over, ankle twists and goes over on itself and my body weight falls on top. I scream out and realise I’m exactly half way in-between the 2 nurses call buttons. I can’t lift myself with my legs so I am dragging my body across the room towards a buzzer. The nurses heard my fall and got to me before I made it to the buzzer.
The next day my entire left leg has gone red or black. The thigh is covered by a rash. The knee is red\black from been twisted, the shin is black from bleeding internally and the ankle is swollen. I have injured the ankle plenty of times before and am confident that it will heal quickly the knee I am more worried about. Main problem this entire incident causes is that if I want to go home anytime soon the doctors will insist on someone been there at all times this is not practical. I’m annoyed with myself.
The next day my entire left leg has gone red or black. The thigh is covered by a rash. The knee is red\black from been twisted, the shin is black from bleeding internally and the ankle is swollen. I have injured the ankle plenty of times before and am confident that it will heal quickly the knee I am more worried about. Main problem this entire incident causes is that if I want to go home anytime soon the doctors will insist on someone been there at all times this is not practical. I’m annoyed with myself.
Subscribe to:
Posts (Atom)
