It turns out that its not just Milk Link who have been missing my regular blog updates. Many thanks for every ones messages.
Continuing from the last blog my blood counts have got even more random. First of all they continued the pattern of either having red blood cells and not having white blood cells. However on Thursday my blood counts completely collapsed. Red Blood cells disappeared and my immune system crashed (white blood cells disappeared) as well as platelets going wondering. Usually you go into to hospital and get blood tests and one of the doctors will come and look you over. You know something is up when you get multiple doctors\professors. Quantity of doctors does not necessarily mean that you get answers. The professor is convinced I have a problem with my veins which could be quite serious. The other 2 doctors are convinced its something else but don't know what. Either way they arrange some fairly hardcore treatment for me on the Monday. I need to have a minimum of a 9 hour drip on Monday and probably every day next week.
The blood count collapse as well as the need to be in hospital 8am Monday morning unfortunately means that heading to Stokesys wedding is not an option. I would have had to get the train across London Monday morning including a trip on the tube, this is to dangerous for my immune system and I doubt I'd make it to the hospital in time. Also with no red blood cells I would get tired very quickly and if I was over active it could be a little dangerous. Bugger I can't go. I don't like missing friends big events but in this case I have to consider my health first.
I did manage to pop out on Saturday night. This was more of a fact that I can't bare to sit in on a Saturday night. Took it easy sitting in the corners of Racks avoiding crowds. Chatted to several people I have not seen for awhile. Was a well needed distraction from the weeks activities and did some good in relieving the annoyance at missing Stokesys wedding.
As long as I know that I have to be in I don't really mind, its all part of the course. The Olympics have provided a brilliant distraction while in hospital anyway. Its been called in unexpected or ending up in hospital longer than you think that becomes annoying. When it happens the other way round its quite good. I'm sure the nurses have started to manage my expectations. Initially I was told that I was going to be in hospital until around 10 - 11ish (pm). With this news I sent round a speculative text to get some visitors in the evening. However I was released around 7ish. As a result instead of an evening in hospital I ended up going for dinner with the Millards, Julia and Will (King of Lao). A nice unexpected turn around. Tuesday I am meant to be be in all day. Again I get released early. I'm still however due in for at least another 2 days.
This weekend is Ollie Boulter's stag. I am hopefully going to be able to make it, but will have to make the call based on Thursdays blood counts. They have improved significantly this week but as has been proved over the last 2 weeks this can change each day. The only thing I can do is take things day by day and hope for the best. I really don't want to miss another big event of the summer but as I said earlier I may need to consider my health first. Fingers crossed.
Cheers for keeping reading, hope bad weather is not getting you down.. Summer is just around the corner.
Wednesday, 20 August 2008
Sunday, 10 August 2008
Back By Popular Demand
Due to demand from Milk Link the blog is back... Hopefully it is up to standard.
This week has seen my blood test results continue a random pattern. While my white blood cells have recovered my red blood cells have started to slide. As well as some of the other counts behaving erratically. I have also developed permanent pins and needles in my toes, but previous joint pains have disappeared. To fix one problem the doctors adjust 1 medication but this seems to have a knock on effect elsewhere. Its like a bit like a game of Kerplunk (I hope its not just me who remembers this game). None of the issues are serious and are not causing me any real difficulties day to day, but it would be nice if the doctors get the balance right and they are sorted. Until then I'm having to spend more time in hospital getting tested and receiving infusions than I'd really like.
On the positive side of medical treatment they repeated the test on my host vs graft %. It came back and confirmed the previous results of 100%, 100% and 100%. I expected this but it was reassuring to get this back. So overall everything is still heading in the right direction the are just a lot of little niggles to get through & none of the niggles are stopping me from doing anything so I have more to be happy with.
This week to start with looked like a quiet relaxing week. But it ended up been fairly busy. I was in hospital until around 6 on Monday. I ended up receiving platelets and having a bone marrow test. While I was waiting I got a call from Monty from the rugby club, they needed someone to help with training. I managed to get a few drills together for it but its difficult when you have not played or trained for a year and have no real idea what has been done to date or what themes have been worked on\towards. Whilst I thought the session was not great feedback was ok. But in all honesty the numbers were made up of 2nd and 3rd team players, the lack of senior players meant standards were not as high as I would expect. Also the was a severe lack of basic kit, not having enough balls to run 2 sets of drills!! As a result I found the entire evening frustrating and tiring. I leave the club quite concerned about the coming season without more of the 1st team we cannot expect to finish any better than last year.. do we really want to get relegated. Concerns are voiced and a meeting is then arranged to try and sort out. I am due to help out again on Wednesday, but end up spending most of the afternoon in hospital and with low red blood counts everything is a little harder work than usual I don't make it up and spend the evening relaxing.
I was hoping to go to Dubai this year. In theory to play in the 7's. I was hoping to be back to work by now. I am signed of until at least mid October.. Dubai is the end of November. First of all I'd expect to be back to work a few months before I was fit to play rugby.. so its unlikely I'll be in a state to play in the 7's. Also it would be taking the piss at work to return part time initially then go and play in a international semi professional rugby tournament. Whilst I hope I can return to work mid October I can't guarantee this. As the previous weeks fun and games with my drugs and the effects you can only take it day by day and I may still be receiving plenty of treatment or require regular testing still in November. I'm gutted I can't go but I have to be realistic and wait another year. The is a meeting on Thursday night to to discuss Dubai. I would have been down as a definite so feel like I need to tell Rob The Tan face to face that I can't make it. Its also a good excuse to get out the flat and socialise a little.
I am meeting my old work for lunch on Friday. It is really good to catch up with everyone, although I did not get the chance to talk to everyone. Anna is leaving.. I think everyone was still in shock at this. I had a nice piece of steak, I could have actually eaten 2 of them. They are about to move offices around again, but whilst the have been a few reshuffles the does not seem to have changed the general atmosphere.
Friday night I meet with a old school\uni friend. After a day of catching up with people I decide I don't like talking about the past experiences of my treatment. Even if you talk about some of the more positive aspects you are still talking about been in hospital been ill. It sounds like your after sympathy. I don't want anyones sympathy I have far more to be grateful for than not and would rather look to the future than back onto the past. However this is difficult when meeting people you don't see very often.
Saturday brings another stag-do. I had been debating whether to go all week. With blood counts been low the was no way I could handle the whole day which would have involved going to London, back out to Ascot, back to London and out in Clapham. Also I'd expect this stag do to be quite heavy drinking event. I am still on a self imposed drinking ban so the evening would be a waste of time anyway. It would still be a long day regardless getting the train to and from Ascot from Bristol. Eventually I make my mind up that its to good an opportunity to see Stokesy get messed up to miss out on. It was also meant to be 80's fancy dress. Ideal for me to use the MC Hammer outfit. I travel up in normal clothes and get changed in a bar in Ascot.. I was expecting everyone else to arrive within 5-10 mins but they turned up around a half hour later. You get some strange looks when your in a bar by yourself dressed as MC Hammer, this set the theme for the day. The others fancy dress (apart from Wibbles and the stags) was pretty poor. Me and Wibbles stood out by a mile. Well we did not get lost in the crowd. The amount of booze been drunk did not disappoint with the golf ball game catching out a few of the group in vicious fashion. The were going to be some early casualties.
I have never come away from the races with any winnings before. I had taken the race guide from the Times. It gave recommendations for each race. I decided to bet according to the guide, it was not just backing the favorites the odds were not bad on the horses. I won on the first race. £30 up. Lost the next 2 but then on the last race I won £110. Overall I ended the day £95 better off than I started. Must be the lucky MC Hammer pants. I had hoped to try some MC Hammer dancing at the 80's event after. It was however open air and the rain was persistent it was not much fun standing round in the rain listening to Belinda Carlisie. We left earlier than planned I had to rush to get the train to reading and could not find anywhere to get changed at Reading. The result was I travelled all the way back to Bristol as MC Hammer.. the train was full of Swansea fans heading back home which made it a little more interesting. I was knackered on my return and quickly fell asleep on the sofa. Unleashing the MC Hammer outfit and dancing will have to wait awhile longer.
What next week will bring I have no idea, see what the doctors change this time and what effect it has on me. Its still a patience game and I just have to take it day by day. I wonder if I can talk the doctors into scheduling appointments around the Olympics??
This week has seen my blood test results continue a random pattern. While my white blood cells have recovered my red blood cells have started to slide. As well as some of the other counts behaving erratically. I have also developed permanent pins and needles in my toes, but previous joint pains have disappeared. To fix one problem the doctors adjust 1 medication but this seems to have a knock on effect elsewhere. Its like a bit like a game of Kerplunk (I hope its not just me who remembers this game). None of the issues are serious and are not causing me any real difficulties day to day, but it would be nice if the doctors get the balance right and they are sorted. Until then I'm having to spend more time in hospital getting tested and receiving infusions than I'd really like.
On the positive side of medical treatment they repeated the test on my host vs graft %. It came back and confirmed the previous results of 100%, 100% and 100%. I expected this but it was reassuring to get this back. So overall everything is still heading in the right direction the are just a lot of little niggles to get through & none of the niggles are stopping me from doing anything so I have more to be happy with.
This week to start with looked like a quiet relaxing week. But it ended up been fairly busy. I was in hospital until around 6 on Monday. I ended up receiving platelets and having a bone marrow test. While I was waiting I got a call from Monty from the rugby club, they needed someone to help with training. I managed to get a few drills together for it but its difficult when you have not played or trained for a year and have no real idea what has been done to date or what themes have been worked on\towards. Whilst I thought the session was not great feedback was ok. But in all honesty the numbers were made up of 2nd and 3rd team players, the lack of senior players meant standards were not as high as I would expect. Also the was a severe lack of basic kit, not having enough balls to run 2 sets of drills!! As a result I found the entire evening frustrating and tiring. I leave the club quite concerned about the coming season without more of the 1st team we cannot expect to finish any better than last year.. do we really want to get relegated. Concerns are voiced and a meeting is then arranged to try and sort out. I am due to help out again on Wednesday, but end up spending most of the afternoon in hospital and with low red blood counts everything is a little harder work than usual I don't make it up and spend the evening relaxing.
I was hoping to go to Dubai this year. In theory to play in the 7's. I was hoping to be back to work by now. I am signed of until at least mid October.. Dubai is the end of November. First of all I'd expect to be back to work a few months before I was fit to play rugby.. so its unlikely I'll be in a state to play in the 7's. Also it would be taking the piss at work to return part time initially then go and play in a international semi professional rugby tournament. Whilst I hope I can return to work mid October I can't guarantee this. As the previous weeks fun and games with my drugs and the effects you can only take it day by day and I may still be receiving plenty of treatment or require regular testing still in November. I'm gutted I can't go but I have to be realistic and wait another year. The is a meeting on Thursday night to to discuss Dubai. I would have been down as a definite so feel like I need to tell Rob The Tan face to face that I can't make it. Its also a good excuse to get out the flat and socialise a little.
I am meeting my old work for lunch on Friday. It is really good to catch up with everyone, although I did not get the chance to talk to everyone. Anna is leaving.. I think everyone was still in shock at this. I had a nice piece of steak, I could have actually eaten 2 of them. They are about to move offices around again, but whilst the have been a few reshuffles the does not seem to have changed the general atmosphere.
Friday night I meet with a old school\uni friend. After a day of catching up with people I decide I don't like talking about the past experiences of my treatment. Even if you talk about some of the more positive aspects you are still talking about been in hospital been ill. It sounds like your after sympathy. I don't want anyones sympathy I have far more to be grateful for than not and would rather look to the future than back onto the past. However this is difficult when meeting people you don't see very often.
Saturday brings another stag-do. I had been debating whether to go all week. With blood counts been low the was no way I could handle the whole day which would have involved going to London, back out to Ascot, back to London and out in Clapham. Also I'd expect this stag do to be quite heavy drinking event. I am still on a self imposed drinking ban so the evening would be a waste of time anyway. It would still be a long day regardless getting the train to and from Ascot from Bristol. Eventually I make my mind up that its to good an opportunity to see Stokesy get messed up to miss out on. It was also meant to be 80's fancy dress. Ideal for me to use the MC Hammer outfit. I travel up in normal clothes and get changed in a bar in Ascot.. I was expecting everyone else to arrive within 5-10 mins but they turned up around a half hour later. You get some strange looks when your in a bar by yourself dressed as MC Hammer, this set the theme for the day. The others fancy dress (apart from Wibbles and the stags) was pretty poor. Me and Wibbles stood out by a mile. Well we did not get lost in the crowd. The amount of booze been drunk did not disappoint with the golf ball game catching out a few of the group in vicious fashion. The were going to be some early casualties.
I have never come away from the races with any winnings before. I had taken the race guide from the Times. It gave recommendations for each race. I decided to bet according to the guide, it was not just backing the favorites the odds were not bad on the horses. I won on the first race. £30 up. Lost the next 2 but then on the last race I won £110. Overall I ended the day £95 better off than I started. Must be the lucky MC Hammer pants. I had hoped to try some MC Hammer dancing at the 80's event after. It was however open air and the rain was persistent it was not much fun standing round in the rain listening to Belinda Carlisie. We left earlier than planned I had to rush to get the train to reading and could not find anywhere to get changed at Reading. The result was I travelled all the way back to Bristol as MC Hammer.. the train was full of Swansea fans heading back home which made it a little more interesting. I was knackered on my return and quickly fell asleep on the sofa. Unleashing the MC Hammer outfit and dancing will have to wait awhile longer.
What next week will bring I have no idea, see what the doctors change this time and what effect it has on me. Its still a patience game and I just have to take it day by day. I wonder if I can talk the doctors into scheduling appointments around the Olympics??
Sunday, 3 August 2008
Mini Hammer
I have a lot planned for this week. Especially Monday. I have been feeling well so should be able to get a lot done. I hope after having blood tests Monday morning to have lunch with the parents, visit physio and rejoin gym and in the evening it is the rugby club AGM. That was my plans...
The hospital had other ideas. I had an hour to spare before having lunch with my parents and had gone down the park. Just as I had made myself comfortable in the sun the hospital get in touch to ask me to come back in for Potassium top ups and a GSF injection. The potassium top up will take all afternoon. Meaning I won't be able to go for lunch, will have to cancel meetings with physio and manager at gym, and may struggle to make AGM. I had a potassium top up a few weeks ago and have a load of tablets in my flat. I'm convinced my potassium is low because of been in too much sun and not drinking water with any minerals in. Somehow I manage to convince the doctors of this so only need have the GSF injection. To my delight this gets done in 5 minutes and I'm able to carry on with my day as planned.
Alex M brings the MC Hammer parachute pants to the rugby club AGM for me. They are brilliant so put them on for the night. Its a little worrying that only 3 people from the rugby club comment on the trousers and everyone else considers it normal for me to be wearing the golden trousers.
I take it easy Tuesday but have been asked to meet some people from just giving on Wednesday night. Its not ideal as I know my immune system is very fragile (GSF injections are to boost white blood cell production, at present my white blood cell production has collapsed? I have no idea why, its very unusual and is the first time this has happened in around 3/4 months). I decide to go to the meeting and be careful of anything that could cause infections. They ask questions about the dodgeball fundraising and how I used just giving as well as some questions on what I thought just giving was. They paid £40 for it and fed me.
I expect the worse on my visit to hospital on Thursday. I've hardly been well behaved considering my immune system is not 100% and expect to have at least a Potassium infusion. I am starting to develop some symptoms of something going wrong. My legs are tired, bruising appearing without reason also I'm getting pins and needles in my toes. For some reason the circulation to my legs has been restricted?? I am reasonably happy to spend most of Thursday in hospital, hopefully this will mean I'll be back to normal for Dean & Sarah's wedding on Saturday. I had planned on going to the Young Professionals Summer Party but it becomes obvious that I will struggle to get out of hospital in time and I probably should not go anyway because of my immune system. Iain takes the ticket and probably needs a good night out more than I do anyway. The time in hospital passes fairly quickly with one of the nurses when not busy keeping me entertained with some magic tricks. Makes me laugh quite a lot I attempt a few without much success, but 1 works very well.
Thursdays test results were worse than Monday's. My legs had got worse on Friday and I'd started to develop headaches as well. While the was no doubt I'd make it to Dean & Sarahs wedding with this happening it would bring into question how much I'd be able to do. We travel up on Saturday and I feel a little rough. The hotel is not as impressive as it looked on the Internet, and the service booking in is not great. We meet Wibbles & Emma (+ a large bump) for lunch. Its overpriced and takes far to long. This causes us to be running behind time and a rush to get there. Considering I'm an usher this is not particularly good.
All however goes smoothly, we are there in time and Dean is not a nervous wreck. He looks brilliant in the full military uniform. Sarah arrives and looks fantastic. Both are have beaming smiles and look incredibly happy. Dean looks a little like Noddy.
The evening do goes just as smoothly. The speech's are good. Dean & Sarah both thank me for been their for them over the years. This seems silly to me as they have both been at my bedside over the last 9 months. Both have seen me at my worse and helped me remain positive and get through everything. I am so lucky to have such great friends.
Food is good and we have a good table. Banter is quite good. It gets to desert and we manage to convince the table to do NHD (a race to eat desert as quickly as possible without using your hands). I win our tables race but Jade is also quick. Even some of the elderly friends join in. It went down very well and 3 other tables followed our lead and did the same. Brilliant.
The DJ and the Cresswell clan have been told about my historic MC Hammer dancing. With my legs been the way they are I'm a little worried about trying to do this. Although I can try and dance without moving my legs it won't be the same. Early doors Vanilla Ice comes on and I end up trying to bodypop on the dance, it goes down very well but I knacker myself out. I can dance for 1 song then need a break. Luckily the DJ does me a favour and every other song is terrible giving me an excuse to sit down.
Deans nephew Kai picks up on the bodypopping and I end up teaching him some dance moves. I teach him one routine and he loves it. Over the night I teach him a few more moves. I've created a mini Robbie\Mini MC Hammer. He mirrors me on the dancefloor it is hilarious. He even does the worm and 1 arm press ups. He attempts the splits and rips his trousers.
My legs loosen up a little and while pacing myself I manage to do more dancing than I thought I would be able to do. Everyone is on fantastic form apart from the DJ who is bordering on been comically bad. It is a great night. As I'm not drinking Iain takes my place as been the drunkest person at the wedding. It is very funny watching people get steadily worse throughout the night. I still manage to have a great time and remain strong in not drinking although have the shakes all night.
My legs are sore the next day but not as bad as I was expecting. The bruising has spread to my arms and I keep getting cramp in my fingers. I don't think the doctors would be too happy with me this week, maybe this week I should listen to them and behave myself. The is a stag do in London next week. Looking at the itinerary I think I might struggle. It will be more important I make the wedding the week after. This will be a shame but going would just be asking for trouble and I would not be drinking anyway and Stokesy stag do will be one of the more vicious in this respect. A week off won't do me any harm.
I'm sure that the test results are just a minor hiccup. But until they clear up looks like I'll be in hospital a little more than I'd like. Generally however things are still good.. I got to enjoy 2 friends getting married and taught a little kid how to breakdance on the weekend. I am lucky to have been able to make it and having such good weekends means I'll be smiling all week.
The hospital had other ideas. I had an hour to spare before having lunch with my parents and had gone down the park. Just as I had made myself comfortable in the sun the hospital get in touch to ask me to come back in for Potassium top ups and a GSF injection. The potassium top up will take all afternoon. Meaning I won't be able to go for lunch, will have to cancel meetings with physio and manager at gym, and may struggle to make AGM. I had a potassium top up a few weeks ago and have a load of tablets in my flat. I'm convinced my potassium is low because of been in too much sun and not drinking water with any minerals in. Somehow I manage to convince the doctors of this so only need have the GSF injection. To my delight this gets done in 5 minutes and I'm able to carry on with my day as planned.
Alex M brings the MC Hammer parachute pants to the rugby club AGM for me. They are brilliant so put them on for the night. Its a little worrying that only 3 people from the rugby club comment on the trousers and everyone else considers it normal for me to be wearing the golden trousers.
I take it easy Tuesday but have been asked to meet some people from just giving on Wednesday night. Its not ideal as I know my immune system is very fragile (GSF injections are to boost white blood cell production, at present my white blood cell production has collapsed? I have no idea why, its very unusual and is the first time this has happened in around 3/4 months). I decide to go to the meeting and be careful of anything that could cause infections. They ask questions about the dodgeball fundraising and how I used just giving as well as some questions on what I thought just giving was. They paid £40 for it and fed me.
I expect the worse on my visit to hospital on Thursday. I've hardly been well behaved considering my immune system is not 100% and expect to have at least a Potassium infusion. I am starting to develop some symptoms of something going wrong. My legs are tired, bruising appearing without reason also I'm getting pins and needles in my toes. For some reason the circulation to my legs has been restricted?? I am reasonably happy to spend most of Thursday in hospital, hopefully this will mean I'll be back to normal for Dean & Sarah's wedding on Saturday. I had planned on going to the Young Professionals Summer Party but it becomes obvious that I will struggle to get out of hospital in time and I probably should not go anyway because of my immune system. Iain takes the ticket and probably needs a good night out more than I do anyway. The time in hospital passes fairly quickly with one of the nurses when not busy keeping me entertained with some magic tricks. Makes me laugh quite a lot I attempt a few without much success, but 1 works very well.
Thursdays test results were worse than Monday's. My legs had got worse on Friday and I'd started to develop headaches as well. While the was no doubt I'd make it to Dean & Sarahs wedding with this happening it would bring into question how much I'd be able to do. We travel up on Saturday and I feel a little rough. The hotel is not as impressive as it looked on the Internet, and the service booking in is not great. We meet Wibbles & Emma (+ a large bump) for lunch. Its overpriced and takes far to long. This causes us to be running behind time and a rush to get there. Considering I'm an usher this is not particularly good.
All however goes smoothly, we are there in time and Dean is not a nervous wreck. He looks brilliant in the full military uniform. Sarah arrives and looks fantastic. Both are have beaming smiles and look incredibly happy. Dean looks a little like Noddy.
The evening do goes just as smoothly. The speech's are good. Dean & Sarah both thank me for been their for them over the years. This seems silly to me as they have both been at my bedside over the last 9 months. Both have seen me at my worse and helped me remain positive and get through everything. I am so lucky to have such great friends.
Food is good and we have a good table. Banter is quite good. It gets to desert and we manage to convince the table to do NHD (a race to eat desert as quickly as possible without using your hands). I win our tables race but Jade is also quick. Even some of the elderly friends join in. It went down very well and 3 other tables followed our lead and did the same. Brilliant.
The DJ and the Cresswell clan have been told about my historic MC Hammer dancing. With my legs been the way they are I'm a little worried about trying to do this. Although I can try and dance without moving my legs it won't be the same. Early doors Vanilla Ice comes on and I end up trying to bodypop on the dance, it goes down very well but I knacker myself out. I can dance for 1 song then need a break. Luckily the DJ does me a favour and every other song is terrible giving me an excuse to sit down.
Deans nephew Kai picks up on the bodypopping and I end up teaching him some dance moves. I teach him one routine and he loves it. Over the night I teach him a few more moves. I've created a mini Robbie\Mini MC Hammer. He mirrors me on the dancefloor it is hilarious. He even does the worm and 1 arm press ups. He attempts the splits and rips his trousers.
My legs loosen up a little and while pacing myself I manage to do more dancing than I thought I would be able to do. Everyone is on fantastic form apart from the DJ who is bordering on been comically bad. It is a great night. As I'm not drinking Iain takes my place as been the drunkest person at the wedding. It is very funny watching people get steadily worse throughout the night. I still manage to have a great time and remain strong in not drinking although have the shakes all night.
My legs are sore the next day but not as bad as I was expecting. The bruising has spread to my arms and I keep getting cramp in my fingers. I don't think the doctors would be too happy with me this week, maybe this week I should listen to them and behave myself. The is a stag do in London next week. Looking at the itinerary I think I might struggle. It will be more important I make the wedding the week after. This will be a shame but going would just be asking for trouble and I would not be drinking anyway and Stokesy stag do will be one of the more vicious in this respect. A week off won't do me any harm.
I'm sure that the test results are just a minor hiccup. But until they clear up looks like I'll be in hospital a little more than I'd like. Generally however things are still good.. I got to enjoy 2 friends getting married and taught a little kid how to breakdance on the weekend. I am lucky to have been able to make it and having such good weekends means I'll be smiling all week.
Saturday, 26 July 2008
The "Jazz"
With my mojo back I've been walking around with a huge smile on my face. The smallest thing has been keeping me amused. I think the people of Westbury think I'm insane...
I have another meeting with Prof Marks. I still am having problems with my joints and still concerned about my kidneys. With my mojo back I'm keen for him to tell me I'm close to getting back to normal.. he nearly has the magic combination to get me back to work and normality. His answer is unfortunately disappointing and unhelpful. He says I'm still quite a way from been able to get back to normality and to get my bone marrow and immune system working will be about another 3 months... so I'm signed off for a further 3 months. Sh!t! Was not expecting that, was hoping for more like 3 weeks (I am ever the optimist).
Well I obviously need to update work. Despite seeing the majority of people at Dodgeball I felt I needed to show my face. After talking to Constellation I popped, timed to see a trading update as well. It was far more useful than talking on the phone and I was more relieved that everyone still knew who I was! It also proved another thing.. I am not ready to start work again. After half a day I was knackered. After heading home I fell asleep on the sofa, woke up for a hour or so and then had an early night. Prof Marks might actually be right (that's not to say I don't intend to try and prove him wrong and get back quicker). I do however feel a little guilty. I'm probably running at around 70% (with my Mojo) this is enough for me to socialise, go to weddings and stag do's (not drinking) do minor jobs but is not enough for me to return to work. I have enough to enjoy myself but not to do the work to pay for it. I should not complain too much. But everything feels so close, yet as proven by how half a day in the office effected me I am also so far away.
The big event of July is Chaz & Lexy's wedding. Both have been fantastic to me throughout my treatment. One of my most treasured possessions while in isolation was a photo album of various drunken nights in Bristol. Whenever I was feeling "isolated" I would get the photo album out to remind myself of what great friends I had outside the hospital and what I had to look forward to when I got out.
Every wedding I have ever been to reflects the couples character. Chaz & Lexys was no different. The church service was small and the Chaplin was unintentionally very funny (although this could have been me getting easily amused again). Lexy looked fantastic, Chaz was average thought he could have at least made an effort. The reception marque was decked out in ivy and in a classical theme (I don't think Laura will read the blog but I did promise to point it out to everyone and say what I fantastic job she had done). I ate enough food for around 4 people. It was strange not drinking.. but it meant everything seemed surprisingly civilised for awhile. I had to take my drugs around 8ish. They all make you drowsy, while not enough to make you fall asleep, enough to make you a bit sluggish and lose form quite quickly. I did not really want to sit around and watch the rest of the night so a solution was required as I was fading quickly. Most people who know me will know I don't usually drink any caffeine, this is not deliberate but I've never developed a taste for tea or coffee and I don't drink coca cola very often. The result is if I do drink it I go a little hyperactive. 3 cups of strong black coffee in 10 minutes and I was doing some break-bopping beats at double time on the dance floor. I think 3 cups was too much as I had the shakes and literally could not stay still for more than a few seconds. But I was having a lot of fun.. until I slipped on some spilt wine and ended up on my arse. The rest of the night was brilliant with Oly Gaudion providing some of the best entertainment in his dancing. He had the crowd eating out of his hand. Loved it.
My little fall had not hurt at the time. However I paid for it the next week. My hip completely seized up. I could barely move my left hand side of my body. I must have hit a nerve as it would effect every joint from knuckles to my ankle. Strangely my right hand side was completely unaffected. Sunday was bad, Monday was uncomfortable, Tuesday was torture, I barely made it out of bed. Been sods law by the time I saw the doctors on Wednesday it seemed to start to clear up only to return on Thursday. To sleep I was now having to take a combination of painkillers and sleeping tablets, to be honest they did not work. I have returned to the world of the ever awake (this actually might just be the 3 black coffees taking their time clearing from my system).
My parents were down the next week. It will be good to see them and it will give me transport to go do some more interesting things (head outside Westbury On Trym and Henleaze!). Turns out their timing to hear good news is perfect. They arrive Tuesday night and I have an appointment with Prof Marks on the Wednesday. The results of my bone marrow retest are back. This is the test that had proved inconclusive a few weeks before. They have 4 tests. 1 for leukaemia and 3 more testing the % of your bone marrow \ blood that is host or graft. The results were leukaemia: No Trace, test 1: 100% graft, test 2: 100% graft, test 3: 100% graft. I could jump over the moon. This is huge news. My old bone marrow can't be found. I now have a new system which is just settling in. Of course things can still go very wrong but this is massive step forward.
Wednesday night me, Iain and my Dad decided to do the local pub poker night. It was a perfect way to spend the evening. Sat outside playing poker, eventually by the light of a oil lantern. Also somehow I ended up winning the tournament?? It was only £3 to enter so I only won £13 back. But a win is a win and considering we thought the would be a local hustler it was very funny.
Thursday we went to Bath races, I was not so successful. My best result was my horse falling over before the start so I got a refund of my bet. But it was a very funny day out in the sun. Later on Thursday night I went out for dinner with a few friends it was turning out to be a busy but fun week.
Saturday was a scorcher. Managed to get a good group up on the downs and enjoyed a day in the sun. After was Spottys birthday. I managed to convince 1 person to turn up in fancy dress. It was priceless seeing their face when they realised no one else had dressed up. Had great night not drinking again. Really did not bother me, I went a little crazy on the dance floor, leg is starting to free itself up the break-bopping beats are getting better, a few basic Brizzley moves even came out. Still no worm, splits or cartwheels. Only problem is that I have now only had about 3 hours sleep in the last 3\4 days. Its getting a little silly now, although nice sunrise today!
Good luck to Ian & Matt who are still cycling the tour de france. The is a link to their blog on the right. What they are doing is insane so please support them.
Robbie
Next event: Sarah & Deans Wedding. Should be very good.
Friday, 11 July 2008
Wheres my Mojo??
In my last post someone had stolen my Mojo. I was on a whinge, without my Mojo I could not MC Hammer. I was stuck in the corner spectating wondering what the next step would be. The end\new beginning had slipped from sight and lack of energy and motivation had begun to eat away at my strength. I was moving forward but at a crawl and allowing myself to feel sorry for myself. As I said I felt like a spectator in life, inspiration to get out of this situation comes in some very strange forms.
I was in hospital and the usual patients were around, but 1 extra appeared. I really don't mean to be cruel but this person was repulsive. She travelled on a mobility scooter, despite been more agile on her feet than I have been for months when getting up to get more chocolate. It was not just the appearance, she then sat down to tell everyone how bad she has had it for the last 5 years. She had let the disease take over every aspect of her life. I know she could walk... but she chose not to. She complained about putting on weight while eating half a pound of chocolate. It was not just me looking around for an exit to get away. However it turns out I have a lot to thank this person for. She gave me back my Mojo.... She had lost hers long ago and was doomed to a life of complaints and self pity. Never will I allow that to happen to me.
My resolve has returned, and if anything is stronger than it has ever been before. I needed to have a low to make me appreciate what was about to happen. My drugs were slightly adjusted again, not significantly but enough to make me feel a little better. The next day I got my bike out again and cycled along to the tour de france on eurosport. I had not got the bike out for a few weeks because I did not have the energy. I did not peddle hard but it felt good.
This morning I got the bike out again and peddled harder for an hour. While I was on the bike I thought about how good it would be to show up at rugby training and be able to take part. My thoughts drifted to how good it would be to be able to run again (I have not been able to run since September last year). Last time I tried I ended up flat on my face. That was over a month ago. It is better to try again and end up on my face than not to try again. So after cycling for an hour I wondered down to the park. I did an elaborate warm up and the local dog owners watched as they expected me speed of into the distance. What they got was far more special. I picked 2 landmark trees approximately 10 metres apart. I really did not know what would happen, will I end up face down or will I end up hobbling between trees.
I set off.. My right leg held... then the left did not buckle. I sprinted as fast as my legs would carry me. I covered 10 metres then 20 in around 30 seconds. I properly celebrated... Arms in the air and screamed out with joy. You would have thought I'd just won the Olympic gold. The crowd of dog lovers stared bemused and mothers with push chairs edged away nervously. I wanted to run after all of them and give them a hug. Unfortunately I was not quick enough. I found myself running round the small park stopping every 30/40 metres or so laughing, I had tiers running down my face. The is nothing I can't beat.. It is all in your mind. Hurdles are all in my head, they are all their to be knocked down. My Mojo is back. What have the doctors created!! I ran around the park until my legs hurt. Its 4 hours since then and I'm still smiling and looking for people to hug.
Anna: Thanks for your prayers... They were answered.
I was in hospital and the usual patients were around, but 1 extra appeared. I really don't mean to be cruel but this person was repulsive. She travelled on a mobility scooter, despite been more agile on her feet than I have been for months when getting up to get more chocolate. It was not just the appearance, she then sat down to tell everyone how bad she has had it for the last 5 years. She had let the disease take over every aspect of her life. I know she could walk... but she chose not to. She complained about putting on weight while eating half a pound of chocolate. It was not just me looking around for an exit to get away. However it turns out I have a lot to thank this person for. She gave me back my Mojo.... She had lost hers long ago and was doomed to a life of complaints and self pity. Never will I allow that to happen to me.
My resolve has returned, and if anything is stronger than it has ever been before. I needed to have a low to make me appreciate what was about to happen. My drugs were slightly adjusted again, not significantly but enough to make me feel a little better. The next day I got my bike out again and cycled along to the tour de france on eurosport. I had not got the bike out for a few weeks because I did not have the energy. I did not peddle hard but it felt good.
This morning I got the bike out again and peddled harder for an hour. While I was on the bike I thought about how good it would be to show up at rugby training and be able to take part. My thoughts drifted to how good it would be to be able to run again (I have not been able to run since September last year). Last time I tried I ended up flat on my face. That was over a month ago. It is better to try again and end up on my face than not to try again. So after cycling for an hour I wondered down to the park. I did an elaborate warm up and the local dog owners watched as they expected me speed of into the distance. What they got was far more special. I picked 2 landmark trees approximately 10 metres apart. I really did not know what would happen, will I end up face down or will I end up hobbling between trees.
I set off.. My right leg held... then the left did not buckle. I sprinted as fast as my legs would carry me. I covered 10 metres then 20 in around 30 seconds. I properly celebrated... Arms in the air and screamed out with joy. You would have thought I'd just won the Olympic gold. The crowd of dog lovers stared bemused and mothers with push chairs edged away nervously. I wanted to run after all of them and give them a hug. Unfortunately I was not quick enough. I found myself running round the small park stopping every 30/40 metres or so laughing, I had tiers running down my face. The is nothing I can't beat.. It is all in your mind. Hurdles are all in my head, they are all their to be knocked down. My Mojo is back. What have the doctors created!! I ran around the park until my legs hurt. Its 4 hours since then and I'm still smiling and looking for people to hug.
Anna: Thanks for your prayers... They were answered.
Tuesday, 8 July 2008
Time Standing Still
Its been a month since my last post!! Apologies fir the delays, not sure if anyone is still reading it anyway?
So what did June bring. My last post detailed how I'd come of the clean diet and could enjoy a beer. Everything was looking up. Wedding season was about to begin, my leg was going to be sorted. All was going to be hunky dory within the month. Its such a shame that life does not work like that.
My leg has been fixed. I no longer have a hole to worry about. However I still am walking like a cripple. It will take awhile before I can get my dancing boots on and show of some moves. I was hoping to bring back MC Hammer at a few of the weddings. I had even started looking for MC Hammer parachute pants for additional comedy value.
I got the initial results of the bone marrow transplant. It found no leukaemia!!! However it did not find much bone marrow either. The sample needs redone. Last time I updated the blog I was nearly on top of the moon. I was able to train for a few hours a day, go for a walk and still have plenty of energy. I am not sure why but that has disappeared. I am lacking in energy again. It is usual for me to unintentionally have a afternoon snooze. I'll sit down to do some work\read paper etc and then find myself waking up as Iain comes home from work. Not good. This is unusual as my blood counts are generally getting better. I should have more energy! In my last post I was waiting for the Platelet counts to start grafting (this is usually the last part of the blood to graft). It now seems to be working.
However I have developed another problem. My kidneys have decided they don't like any of the drugs that are been used on me. I have quit drinking (booze indefinitely) and have to drink around 3 litres of water in order to flush through the toxins. Despite this my kidneys are still struggling. The doctors have warned me if this continues then the damage could be permanent. Last think I need is clear ALL and then have to live life on a dialysis machine. Bugger. All I can do is follow doctors orders and give myself the best possible chances.
Also I have developed a severe case of host vs graft disease in my skin. While I have had this before it has taken a few worrying turns. My skin occasionally is splitting open. I can be sat in the park\flat and suddenly blood starts appearing down my legs where skin has spontaneously split. I suppose its like having old womens veins? Luckily as I have platelets the bleeding stops quickly but its pretty minging. On Monday I insisted on getting this looked at specifically hopefully they will have some answers for me tomorrow. I did have a scare of host vs graft disease in the throat but it looks like this may have been a false alarm, as tests have now come back negative and I'm back to eating properly again.
Lastly I have developed another problem. My joints are all a mess. I have had to start taking strong painkillers as my joints are freezing up. I periodically throughout the day will find ankles, shoulders, fingers, elbows, knees will all go on protest. The painkillers I use don't seem to have much effect, I just have to wait for it to pass, sometimes it can be walked\shaken off, but sometimes that makes things far worse.
That's my medical whinge over with. Generally things are still heading in the right direction, but its so frustrating. I know full well to take everything day by day. But you just want to be given the all clear and told your body will be back to normal next week. When are they going to invent that magic pill?
The have been some fantastic things that have happened in the last month. The major event for me was the Bristol Charity Dodgeball. The tournament was oversubscribed. We got a great sponsorship deal from Constellation (my employer) and they also provided some fantastic prizes. Despite the initial stress of getting everything set up in the morning everything went to plan. The teams turned up in some classic fancy dress. All played in good humour and we raised over £4000 for CLIC Sargent. In addition to this Iain & Sarah (dirty) completed the cycle from Bristol to Paris. This raised a further £4000ish. I would love it if between us we could push this to £10,000. I may have to think of another challenge to get the extra £2000. But we have already started planning next years event, everyone seems to be keen to take part again. We may have a few alternate events in the planning as well. So watch this space.
Another friend (Ian Callaghan) is completing a insane challenge of following the tour de france. That's 3500 miles of cycling. He has trained really hard as you would expect. You can follow his blog on http://ianandmatt.blogspot.com/ and make donations.
That's the charity events covered. Its now time for stag do's and weddings. I have actually found that not drinking is not a huge problem. I am equally capable of making a fool out of myself sober than I am drunk. However what is causing me true frustration is the fact my leg still does not work properly, I get tired easily, steroids cause me to lose co-ordination. I cannot do what I want. I want to dance like MC Hammer, I want to be warned by the bouncers to stop doing the worm across the dance floor. I want to show girls how a bloke should pole dance. I want to be slide across the dancefloor doing a air guitar routine. I want to pick up a random girl spin them round tango fashion without fear my leg will buckle landing them on their head (ok I used to drop them every now and again because I was drunk). That's just what I want to be able to do on a night out. I want to be able to take part in rugby training. I want to feel sick after one of Ronan's beasting sessions. I want to be able to drive so I can do some random journeys and have some freedom. These are some of the more normal things I'd like to do, most of them very simple, believe me the is a huge list brewing of others. I don't want to worry about carrying all my pills with me. I want to be able to take part rather than spectate. I may not be in isolation but until I can start to reclaim my life back I may as well be. I feel trapped just watching the world go by, I can see everyone else moving on and I'm stuck in quicksand waiting for the specter of Leukaemia to release me.
Rant over.
So what did June bring. My last post detailed how I'd come of the clean diet and could enjoy a beer. Everything was looking up. Wedding season was about to begin, my leg was going to be sorted. All was going to be hunky dory within the month. Its such a shame that life does not work like that.
My leg has been fixed. I no longer have a hole to worry about. However I still am walking like a cripple. It will take awhile before I can get my dancing boots on and show of some moves. I was hoping to bring back MC Hammer at a few of the weddings. I had even started looking for MC Hammer parachute pants for additional comedy value.
I got the initial results of the bone marrow transplant. It found no leukaemia!!! However it did not find much bone marrow either. The sample needs redone. Last time I updated the blog I was nearly on top of the moon. I was able to train for a few hours a day, go for a walk and still have plenty of energy. I am not sure why but that has disappeared. I am lacking in energy again. It is usual for me to unintentionally have a afternoon snooze. I'll sit down to do some work\read paper etc and then find myself waking up as Iain comes home from work. Not good. This is unusual as my blood counts are generally getting better. I should have more energy! In my last post I was waiting for the Platelet counts to start grafting (this is usually the last part of the blood to graft). It now seems to be working.
However I have developed another problem. My kidneys have decided they don't like any of the drugs that are been used on me. I have quit drinking (booze indefinitely) and have to drink around 3 litres of water in order to flush through the toxins. Despite this my kidneys are still struggling. The doctors have warned me if this continues then the damage could be permanent. Last think I need is clear ALL and then have to live life on a dialysis machine. Bugger. All I can do is follow doctors orders and give myself the best possible chances.
Also I have developed a severe case of host vs graft disease in my skin. While I have had this before it has taken a few worrying turns. My skin occasionally is splitting open. I can be sat in the park\flat and suddenly blood starts appearing down my legs where skin has spontaneously split. I suppose its like having old womens veins? Luckily as I have platelets the bleeding stops quickly but its pretty minging. On Monday I insisted on getting this looked at specifically hopefully they will have some answers for me tomorrow. I did have a scare of host vs graft disease in the throat but it looks like this may have been a false alarm, as tests have now come back negative and I'm back to eating properly again.
Lastly I have developed another problem. My joints are all a mess. I have had to start taking strong painkillers as my joints are freezing up. I periodically throughout the day will find ankles, shoulders, fingers, elbows, knees will all go on protest. The painkillers I use don't seem to have much effect, I just have to wait for it to pass, sometimes it can be walked\shaken off, but sometimes that makes things far worse.
That's my medical whinge over with. Generally things are still heading in the right direction, but its so frustrating. I know full well to take everything day by day. But you just want to be given the all clear and told your body will be back to normal next week. When are they going to invent that magic pill?
The have been some fantastic things that have happened in the last month. The major event for me was the Bristol Charity Dodgeball. The tournament was oversubscribed. We got a great sponsorship deal from Constellation (my employer) and they also provided some fantastic prizes. Despite the initial stress of getting everything set up in the morning everything went to plan. The teams turned up in some classic fancy dress. All played in good humour and we raised over £4000 for CLIC Sargent. In addition to this Iain & Sarah (dirty) completed the cycle from Bristol to Paris. This raised a further £4000ish. I would love it if between us we could push this to £10,000. I may have to think of another challenge to get the extra £2000. But we have already started planning next years event, everyone seems to be keen to take part again. We may have a few alternate events in the planning as well. So watch this space.
Another friend (Ian Callaghan) is completing a insane challenge of following the tour de france. That's 3500 miles of cycling. He has trained really hard as you would expect. You can follow his blog on http://ianandmatt.blogspot.com/ and make donations.
That's the charity events covered. Its now time for stag do's and weddings. I have actually found that not drinking is not a huge problem. I am equally capable of making a fool out of myself sober than I am drunk. However what is causing me true frustration is the fact my leg still does not work properly, I get tired easily, steroids cause me to lose co-ordination. I cannot do what I want. I want to dance like MC Hammer, I want to be warned by the bouncers to stop doing the worm across the dance floor. I want to show girls how a bloke should pole dance. I want to be slide across the dancefloor doing a air guitar routine. I want to pick up a random girl spin them round tango fashion without fear my leg will buckle landing them on their head (ok I used to drop them every now and again because I was drunk). That's just what I want to be able to do on a night out. I want to be able to take part in rugby training. I want to feel sick after one of Ronan's beasting sessions. I want to be able to drive so I can do some random journeys and have some freedom. These are some of the more normal things I'd like to do, most of them very simple, believe me the is a huge list brewing of others. I don't want to worry about carrying all my pills with me. I want to be able to take part rather than spectate. I may not be in isolation but until I can start to reclaim my life back I may as well be. I feel trapped just watching the world go by, I can see everyone else moving on and I'm stuck in quicksand waiting for the specter of Leukaemia to release me.
Rant over.
Thursday, 29 May 2008
Beer?
I have had a meeting with Professor Marks, the 100 day milestone is the 28th June. The closer this date gets the more I think that it will be a false dawn as my drugs have not been reduced and the has not been much change over the last month. However I could not be proved more wrong. On the 21st May my restrictions on diet and where I could go were lifted. This means I can have steak and a beer!!! This was totally unexpected and welcome surprise. While I still need to be careful about what I eat it will be good not to be reliant on frozen food.
You won't be surprised that I was out for a beer the very next day. I had the watchful eye of my Dad making sure I did not consume to much. This was also followed by a nice bit of Steak. While this initially was going to be a quiet occasion I could not help mention it to several people. Before I knew it around 15 people were turning up to have a drink with me. It might be that I know a lot of alcoholics looking for any excuse for a drink. The drinks went down very easily but I did not go overboard and the was no hangover the morning after. Which was lucky as I had a meeting with the othopedic consultant.
I've been waiting for something to be done about my leg since January\February. It has been a long running saga and finally the doctors agree with me. It was what I was expecting around a month ago... I'm finally booked in to have an operation on my leg to remove the remainder of the scar tissue and seal up the hole in my leg. Having the operation does present me with some further risks... but so does leaving a open hole in my leg. I don't dread the operation but I am really not looking forward to the enforced stay in hospital. You would have thought I would be used to it, but last time I went in I did not emerge again for a few months. Hopefully this will be a short stay this time.
Other progress is that I can start work from home. This is fantastic news. While working from home is very strange and the are plenty of distractions it is good to start to get back involved. I've even started looking for a car for when I return to work properly.
The dodgeball tournament is also progressing nicely. We have held a trial game to figure out some of the rules. The Evening post turned up to take photos of us in fancy dress. The game was quicker than we anticipated, every one's competitive streak soon came out and dodgeballs were soon filling the air. One of the Salmon Dodgers got a nasty blow to the balls which floored him. It left everyone else in tears laughing... not very sympathetic but it was very funny. The were 2 articles published in the Western Daily Mail and in the Evening Post. Hopefully we will get a few more entries and donations as a result of this.
Lastly I have had my bone marrow sample taken now. While the process is quite painful it was over quickly and I await the results to give an initial all clear. Professor Marks has said he would be very surprised if anything was found. The test will look for leukaemia cells and test down to the millionth cell. Hopefully not finding any.
Wedding season is about to start, it seems I have timed my recovery very well. I have found myself with very few weekends free up until September. I will have to postpone any celebration party until October.. It may done to celebrate my return to the rugby pitch.
Cheers
Robbie
You won't be surprised that I was out for a beer the very next day. I had the watchful eye of my Dad making sure I did not consume to much. This was also followed by a nice bit of Steak. While this initially was going to be a quiet occasion I could not help mention it to several people. Before I knew it around 15 people were turning up to have a drink with me. It might be that I know a lot of alcoholics looking for any excuse for a drink. The drinks went down very easily but I did not go overboard and the was no hangover the morning after. Which was lucky as I had a meeting with the othopedic consultant.
I've been waiting for something to be done about my leg since January\February. It has been a long running saga and finally the doctors agree with me. It was what I was expecting around a month ago... I'm finally booked in to have an operation on my leg to remove the remainder of the scar tissue and seal up the hole in my leg. Having the operation does present me with some further risks... but so does leaving a open hole in my leg. I don't dread the operation but I am really not looking forward to the enforced stay in hospital. You would have thought I would be used to it, but last time I went in I did not emerge again for a few months. Hopefully this will be a short stay this time.
Other progress is that I can start work from home. This is fantastic news. While working from home is very strange and the are plenty of distractions it is good to start to get back involved. I've even started looking for a car for when I return to work properly.
The dodgeball tournament is also progressing nicely. We have held a trial game to figure out some of the rules. The Evening post turned up to take photos of us in fancy dress. The game was quicker than we anticipated, every one's competitive streak soon came out and dodgeballs were soon filling the air. One of the Salmon Dodgers got a nasty blow to the balls which floored him. It left everyone else in tears laughing... not very sympathetic but it was very funny. The were 2 articles published in the Western Daily Mail and in the Evening Post. Hopefully we will get a few more entries and donations as a result of this.
Lastly I have had my bone marrow sample taken now. While the process is quite painful it was over quickly and I await the results to give an initial all clear. Professor Marks has said he would be very surprised if anything was found. The test will look for leukaemia cells and test down to the millionth cell. Hopefully not finding any.
Wedding season is about to start, it seems I have timed my recovery very well. I have found myself with very few weekends free up until September. I will have to postpone any celebration party until October.. It may done to celebrate my return to the rugby pitch.
Cheers
Robbie
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