What a difference a week can make. Test results are showing I have no signs of infection. I still have graft vs host disease but this in the long run is a good thing. I have it in my skin which causes itching all over and nettle like stinging marks. To get over this I am covering myself with various creams.. I look like I'm about to swim the channel when I'm done. I could have got graft vs host disease in a lot more serious places, it could have effected lungs or my heart and left me with some long term damage. So I will take itching skin for a few weeks and it reduces the chance of the leukaemia coming back by 2.5 times!!
Other test results have shown that the graft has started to produce more of my own cells. Platelets are been produced for the first time, these are usually the last to be produced. I'm still not producing the normal amount of cells but my body is slowly returning to normal. The doctors as a result have moved me from the full isolation ward and I am allowed out for the afternoons. I'm still under strict rules on who I can see and where I can go. The will still be 50ish days where I'm not allowed in crowded areas and have a restricted diet, after this if all goes well then things will be relaxed after this.
These are initial tests and I will still need confirmations from further blood tests and bone marrow tests. The is a long way to go yet and lots of hurdles that still need to be cleared. So while this is great news it is a still early days and some way of been clear of the disease.
I'm starting to try and do more exercise and will be ordering a gym bike for my flat as well some light weights, this way I can build up my strength at my own pace. This is been alongside increasing my diet. I Olympic bodybuilder would be proud of how many calories I'm starting to consume, yesterday I calculated I consumed around 3000-4000 calories. As long as I match this with exercise then hopefully I will be back to fighting weight soon enough.
All have this has left me very upbeat, but the good news does not end there! Congratulations to both Alex & Amy and Wibbles & Emma in expecting their first child later this year. Although its quite scary imagining a little Millard and Higgs running around.
Lastly Sarah (Dirty) is joining Iain in cycling to Paris, her company HBOS has agreed to double any money she raises so please give generously. (Link added to right of page.. please note the nice cow outfit).
When I am able I'll let you know when I'm able to see more visitors.
Robbie
Wednesday, 2 April 2008
Tuesday, 25 March 2008
Way Out?? (19th March to 25th March)
When I wrote the update last week the was a hope that I may get released early, or at least get allowed some time out. While these hopes have not disappeared my chances are looking a little slim at the moment. Over the weekend my temperatures have fluctuated between 36.2 and 38.8, blood pressures have been extremely high then an hour later dangerously low. During all of this I generally feel fine apart from getting extremely cold and shivering almost constantly. The doctors are very confused to what is causing it all. As a precaution they have removed my drugs line as these are frequently the source of infection. It had no effect. The latest development is a rash covering the majority of my body. This could be graft vs host disease (which in a way would be a good sign) or it could be a reaction to some of the drugs that they have given me. At present I am in no-mans land waiting for test results to come back. Until then I'm stuck waiting.. is it a quick fix changing some of my drugs or something more serious?
It is day 35 of isolation now. I am starting to really miss my own flat. However I need to wake up my legs again, at present I wonder round my room for 5 minutes then have to sit down. I am some way of been able to fend for myself at home. I am doing daily exercises to build up the muscles slowly. I don't want to have to depend on others to look after me so it is important I start to get my strength back as soon as possible. The sooner my strength returns the quicker I can get back to relative normality... I must be one of the few people who really wants to get back to work. It will be awhile before I can get back to rugby I need to put on another 20k again and make sure its in the right places. It will happen .. I just have to be patient.
Thanks to those who have got in touch. I am on skype now if anyone wants to see what I look like with no hair and I could give you the tour of my spacious isolation room. Look me up by my email.
Cheers
Robbie
It is day 35 of isolation now. I am starting to really miss my own flat. However I need to wake up my legs again, at present I wonder round my room for 5 minutes then have to sit down. I am some way of been able to fend for myself at home. I am doing daily exercises to build up the muscles slowly. I don't want to have to depend on others to look after me so it is important I start to get my strength back as soon as possible. The sooner my strength returns the quicker I can get back to relative normality... I must be one of the few people who really wants to get back to work. It will be awhile before I can get back to rugby I need to put on another 20k again and make sure its in the right places. It will happen .. I just have to be patient.
Thanks to those who have got in touch. I am on skype now if anyone wants to see what I look like with no hair and I could give you the tour of my spacious isolation room. Look me up by my email.
Cheers
Robbie
Wednesday, 19 March 2008
Turning Corners
First of all apologies for not updating the blog sooner. The treatment really took it out of me and I have had little energy to move out of bed, that combined with high dosages of morphine has made life a little difficult. The side effects are harsh to say the least I will fill in gap in the blog at some point but wanted to let everyone know I was OK first.
However a corner seems to have been turned. Towards the end of last week I stopped the morphine and began to feel a little more human. Initial signs are that the transplant has taken and I am producing some of my own blood. The is a long way to go and I am still extremely weak and vulnerable to infections. Isolation is a nightmare.. I have been in the same room for a month now. Keeping sane is quite difficult..
Well done to all those who ran the Bristol half marathon on the weekend & thank you to all those who sponsored Ben & Dean. Between them over £2,000 was raised for leukaemia research. Fantastic result!!
Iain has also taken up the challenge and is going to cycle from Bristol to Paris. Please give generously ( www.justgiving.com/iainstuart ).
Thank you all for your support and hopefully the updates on the blog shall return to normal again now.
However a corner seems to have been turned. Towards the end of last week I stopped the morphine and began to feel a little more human. Initial signs are that the transplant has taken and I am producing some of my own blood. The is a long way to go and I am still extremely weak and vulnerable to infections. Isolation is a nightmare.. I have been in the same room for a month now. Keeping sane is quite difficult..
Well done to all those who ran the Bristol half marathon on the weekend & thank you to all those who sponsored Ben & Dean. Between them over £2,000 was raised for leukaemia research. Fantastic result!!
Iain has also taken up the challenge and is going to cycle from Bristol to Paris. Please give generously ( www.justgiving.com/iainstuart ).
Thank you all for your support and hopefully the updates on the blog shall return to normal again now.
Sunday, 17 February 2008
Last Chemo 12th to 17th Feb
I have been admitted initially to the BMT unit on the same terms as Ward 62 If I am up to it then I will be allowed out. This presents a bit of a run around for my parents. As I can potentially finish the morning treatments by 10:15, then have the entire day free until the 3:00 treatment where timings are a little more unpredictable. I can be finished by 4:00 if no delays have built up, however it seems usual for one of the machines to breakdown or the sheer volume of users just causes everything to come to a halt. Also they won’t work Sundays but will work Saturdays? I get the Sunday off all treatment as a result.
Radiotherapy starts on schedule on Saturday. Once you are lead into the radiotherapy room and stripped off and attached to sensors you are made to lie in position by the doctors. Once again all my trust is placed with the doctors who made the dosage calculations.
Mondays afternoon session the is a long delay. The is a little girl. She lightens the atmosphere playing in the waiting area. However when she goes into treatment you can hear the screaming even through the extra thick walls.
The Treatment goes smoothly enough. However the were a few unforeseen surprises. You can feel the radiowaves scanning up and down making each hair stand on end. This tingling continues up the next and across the eyes. The first time I decide to keep my eyes open the first time. I feel the tingling sensation buy shut my eyes the second time. It lights up my eyelids like a torch at close range. In my 3rd session these tingling feelings develop into involuntary twitches.
One last treatment before the transplant that is Chemotherapy. Possibly my last ever session Of Chemo, just as before it will treat the whole of my body but this will be far more intense, designed to kill off any remaining stem cells. Side effects are almost instant. I’d able to get out the hospital up until now. I was tired, appetite gone, no energy in my limbs.. I was now stuck in the BMT unit ..
Radiotherapy starts on schedule on Saturday. Once you are lead into the radiotherapy room and stripped off and attached to sensors you are made to lie in position by the doctors. Once again all my trust is placed with the doctors who made the dosage calculations.
Mondays afternoon session the is a long delay. The is a little girl. She lightens the atmosphere playing in the waiting area. However when she goes into treatment you can hear the screaming even through the extra thick walls.
The Treatment goes smoothly enough. However the were a few unforeseen surprises. You can feel the radiowaves scanning up and down making each hair stand on end. This tingling continues up the next and across the eyes. The first time I decide to keep my eyes open the first time. I feel the tingling sensation buy shut my eyes the second time. It lights up my eyelids like a torch at close range. In my 3rd session these tingling feelings develop into involuntary twitches.
One last treatment before the transplant that is Chemotherapy. Possibly my last ever session Of Chemo, just as before it will treat the whole of my body but this will be far more intense, designed to kill off any remaining stem cells. Side effects are almost instant. I’d able to get out the hospital up until now. I was tired, appetite gone, no energy in my limbs.. I was now stuck in the BMT unit ..
Monday, 11 February 2008
COUNTDOWN (4th - 11th Feb)
I am finally due to leave Ward 62 moving on to the bone marrow transplant unit (BMT). I have been a inpatient in Ward 62 since November. I have been through alot on this ward and all the staff have been fantastic in looking after me. Some of their jobs I could never do, yet you never hear them complain they just get on with it. On top of this they manage to keep a cheerful atmosphere that makes life so much easier as a patient. As I leave the ward each nurse wishes me good luck for the transplant.
At the moment my blood counts are better than when I was admitted. I have managed to put on a small amount of weight so am as ready as I'll ever be for the next stage of treatment. On this note I book into the BMT unit for the first time on Friday afternoon. I am due to be given some very expensive drugs. I am assigned a small corner room that will be mine for the next week. The rooms are better equipped than ward 62's with DVD players and radios. I settle in and wait around for doctors to see me then for the drugs to be administered. I end up been stuck in hospital for the majority of the Friday and hope that this does not happen over the weekend otherwise I'll be watching the 6nations in hospital.
I was home by lunchtime both Saturday and Sunday, as the nurses knew I was wanting to watch the rugby they did not hang about. Thats all I'm going to say about the rugby as Scotland's campaign falls apart.
It all kicks off tomorrow. Radiotherapy starts at 9:00 followed up at 3:00. While I want to move on with the treatment I am starting to get a little nervous. However I accidentally bump into a old friend in the BMT unit. They had gone through the transplant and were recovering. Thats where I want to be in 5 weeks time. Just have to remember the end goal is in sight, but like Everest the last push may be the hardest part. Wish me luck for the next week.
Lastly I have added some links on the right of the page. These are for friends who have decided to raise money for various Leukaemia charitys. Thank you to all of you.
Ian & Matt: Cycling the Tour De France
Dean: Running Bath Half Marathon as Snow White
Ben & Liz: Running Bath Half Marathon (Ben aiming for 1hr 45 Liz aiming for sub 2hr)
At the moment my blood counts are better than when I was admitted. I have managed to put on a small amount of weight so am as ready as I'll ever be for the next stage of treatment. On this note I book into the BMT unit for the first time on Friday afternoon. I am due to be given some very expensive drugs. I am assigned a small corner room that will be mine for the next week. The rooms are better equipped than ward 62's with DVD players and radios. I settle in and wait around for doctors to see me then for the drugs to be administered. I end up been stuck in hospital for the majority of the Friday and hope that this does not happen over the weekend otherwise I'll be watching the 6nations in hospital.
I was home by lunchtime both Saturday and Sunday, as the nurses knew I was wanting to watch the rugby they did not hang about. Thats all I'm going to say about the rugby as Scotland's campaign falls apart.
It all kicks off tomorrow. Radiotherapy starts at 9:00 followed up at 3:00. While I want to move on with the treatment I am starting to get a little nervous. However I accidentally bump into a old friend in the BMT unit. They had gone through the transplant and were recovering. Thats where I want to be in 5 weeks time. Just have to remember the end goal is in sight, but like Everest the last push may be the hardest part. Wish me luck for the next week.
Lastly I have added some links on the right of the page. These are for friends who have decided to raise money for various Leukaemia charitys. Thank you to all of you.
Ian & Matt: Cycling the Tour De France
Dean: Running Bath Half Marathon as Snow White
Ben & Liz: Running Bath Half Marathon (Ben aiming for 1hr 45 Liz aiming for sub 2hr)
Sunday, 3 February 2008
Microwave 28th Jan to 3rd Feb
All of the nurses and most of my visitors have been saying how well I look. Also the doctors are going to let me go home on Thursday and before this they are going to let me head home for the afternoons... I want as much time out of hospital before I am put into isolation.
To let me go home I need to be taken off some of the antibiotics. My blood test results and observation checks all have indicated the is no infection so my last dose is due Wednesday. I will still remain on some antibiotics but I'm going to be taught how to self administrate these. On Monday I start lessons on how to do this. I have to learn how to prepare the drugs as well as the routine to inject into my line. The injecting into my line I have seen many times before and am fairly confident I can do. However the preparation of drugs has always been done out of sight and if I mix things wrong then I will end up doing myself alot of harm.
I need to do these injections 3 times a day. I practice as much as possible with the nurses help by Wednesday I'm given the all clear to head home and inject myself. The physio needs to give me the all clear as well. She visits on Wednesday, the concern is can I get up & down stairs.. I'm taken to a stairwell and swiftly climbed up and descended down without help from the physio. I am still hobbling and legs are weak but its not going to stop me going home.
I get to Thursday and am all ready to go. I am woken early and am told I'm going for a Radiotherapy session. Its the first I know about it. I imagine its going to be a claustrophobic container which I have to remain still in for a few hours, for all I know it could be like a microwave with me on a revolving plate in the middle.
I am measured and weighed then I am fitted with a very stylish tight string vest. Padding is fitted around my neck and put between my legs. This is to ensure a uniform dose of radiation throughout my body. Senses are placed across my body and the bed I am in is lined up against a wall. The machine that treats me is around 5 metres away on the opposite side of the room. A green light is projected from the machine, it forms a green light around the bed. Nurses perform a bit of a chuckle brother routine of "to me.. to you" getting me in the right position. Everyone then leaves the room and the machine buzzes to life, the initial noise dies down and the is music in the background. I have to lie completely still until the nurses return. This is only a few minutes however this is just a test session next week I will have to stay still for 2 hours at a time when the sessions start properly in the build up to transplant. This will be twice a day for 4 days.
Despite been allowed home I still have to go into hospital. Friday is very hectic. I have a ultrasound and lung function test in the morning, followed by a visit to the bone marrow transplant unit. The bone marrow transplant unit is fairly new, rooms are about the same size as ward 62's but have a more ikea atmosphere than hospital. I get to ask a few questions and I get a nice surprise. The 100 days which I believed I was in isolation was wrong.. It is 5-6 weeks isolation!!
Once released then I am free for the weekend and the 6Nations. I am confident in Scotland, this might be the year they could win the 6Nations. Ireland vs Italy was boring but in contrast England vs Wales was one of the most bizarre games I have ever seen. England handed Wales victory on a plate. This lost me my bet on the weekends results. My bet also counted on Scotland beating France. Scotland disappointed and France took advantage. None of my bets in the world cup came off and the first round of 6nations follows this pattern.
I am now on countdown until treatment starts. I have 1 week left and hopefully I will spend most of it at home. I just want to get on with the treatment now, although its a little strange looking forward to radiotherapy and chemotherapy. Thanks to all those who visited this week I hope to see more of you before isolation.
Cheers
Robbie
Sunday, 27 January 2008
Birthday Take 2: 24th Jan to 27th Jan
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
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
Subscribe to:
Posts (Atom)
