This weekend was Gore Shenzhens 5th birthday which is a big milestone for the team there that I worked with for a few years. I would normally have been there for the event and to congratulate all the great associates that we recruited five years ago to start the company but sadly I had to give it a miss. I heard that the event went well from colleagues who attended so Happy Birthday to all the team!
Otherwise things have been going smoothly here in Mulligan towers, exercise program has been started at the gym, cars have been cleaned inside and out in time for the big exodus to the Monster Bike and Hike next weekend. My next project is bringing the MG out of hibernation, the new fuel pump and filter are here but the poor car has been abandoned in the garage for three months so I will have to work through it bit by bit to get it going again. First thing on monday is the transplant club and blood tests in the hospital - and wednesday is the MG club meeting so that will be my target to get the pump changed and the car running properly again.
So no news is good news recovery continues to go well, no complaints from me !
Cheers
Gerry
Sunday, April 29, 2007
Thursday, April 26, 2007
Gold star and better day by day
Today I went to see Dr Scott along with some of the "team" who are looking after us transplant patients including Liz the transplant coordinator and one of the lead staff nurses from the support unit. In summary Dr Scott said I was doing "amazingly well" which is pretty heady stuff as she is quite understated. She reminded me I should still be in hospital apart from my good luck at not getting infections, so if my pulse was a bit high walking or cycling up a slope the real question was what the hell was I doing trying to walk or run up a slope when I should be on IV drips and morphine. I have to admit the competitive me was quite pleased, and I was reassured that it was OK to exercise up in the 150-160 range for an hour or so a day as long as my heart did not palpitate at rest. The bottom line from her, and other advice, was take it steady a little every day, use the monitor and do not push above the safe range indicated, if I feel unwell stop. Which is what I was doing so that's fine.
Dr Scott also repeated the advice on temperature, if its over 38 do not pass go, do not go to ER, phone and go directly to the cancer ward, as I do not have the immune system to fight of a serious infection. So scary warnings along with good encouragement that my program of exercise, though surprising, is the right thing to do - within limits which are well defined by my heart rate. I feel that I can make a difference now I am out of the hands of chemicals and drips so I am using my mental energy and determination to move things forward within the safe limits.
Having had a good morning in the hospital, including blood extraction with a needle which did not hurt at all, I decided to tackle one of my favourite things, polishing my Aston Martin, in the afternoon. I was very pleased with the results as some light scratches polished out totally and the car looks fantastic. I have always liked cleaning cars properly for me it is like a zen practice, you need a lot of patience and the results are very rewarding. So I had a few hours to gently work away panel by panel on the car with Tcut and high gloss polish, at the weekend the interior and the wheels will get the treatment so the car will be pristine in time for Philip my brother to borrow it for the run to the Monster hike. I will direct him up the Glencoe road which is one of the best drives in the UK lets hope the weather allows him to do the run with the roof down. Next on my radar is that MG fuel pump and the grass cutting.
This evening I took Poppy and Holly to our favourite Italian restaurant, I like these evenings as when there is one adult and the two girls we get to chat about things that would not happen if all four of us were together. This evening conversations ranged from cancer stuff (when would my eyelashes and hair grow back) to computer games, Marylin Monroe films and school trips, all in all a really nice evening. Lee has gone out with Sarah to a regular wine tasting at the cafe across the road, I would not be able to deal with that amount of wine so bowed out. This reminds us of the need we all have to let our hair down and chill out even (or specially) in the middle of stressful times. Throughout the last six months time out alone with our friends has been important for both of us to keep the fun going among the battles, setbacks and victory's. I think this weekend may see my first proper curry and my first half pint of proper beer with Nick back at our favourite pub on Sunday night.
So all is well here, no doubt at some time some bug is going to get me and knock me back a bit, but in the meantime I am pushing the envelope within safe limits, the fitter I am when it happens the faster I will recover.
Cheers
Gerry
Dr Scott also repeated the advice on temperature, if its over 38 do not pass go, do not go to ER, phone and go directly to the cancer ward, as I do not have the immune system to fight of a serious infection. So scary warnings along with good encouragement that my program of exercise, though surprising, is the right thing to do - within limits which are well defined by my heart rate. I feel that I can make a difference now I am out of the hands of chemicals and drips so I am using my mental energy and determination to move things forward within the safe limits.
Having had a good morning in the hospital, including blood extraction with a needle which did not hurt at all, I decided to tackle one of my favourite things, polishing my Aston Martin, in the afternoon. I was very pleased with the results as some light scratches polished out totally and the car looks fantastic. I have always liked cleaning cars properly for me it is like a zen practice, you need a lot of patience and the results are very rewarding. So I had a few hours to gently work away panel by panel on the car with Tcut and high gloss polish, at the weekend the interior and the wheels will get the treatment so the car will be pristine in time for Philip my brother to borrow it for the run to the Monster hike. I will direct him up the Glencoe road which is one of the best drives in the UK lets hope the weather allows him to do the run with the roof down. Next on my radar is that MG fuel pump and the grass cutting.
This evening I took Poppy and Holly to our favourite Italian restaurant, I like these evenings as when there is one adult and the two girls we get to chat about things that would not happen if all four of us were together. This evening conversations ranged from cancer stuff (when would my eyelashes and hair grow back) to computer games, Marylin Monroe films and school trips, all in all a really nice evening. Lee has gone out with Sarah to a regular wine tasting at the cafe across the road, I would not be able to deal with that amount of wine so bowed out. This reminds us of the need we all have to let our hair down and chill out even (or specially) in the middle of stressful times. Throughout the last six months time out alone with our friends has been important for both of us to keep the fun going among the battles, setbacks and victory's. I think this weekend may see my first proper curry and my first half pint of proper beer with Nick back at our favourite pub on Sunday night.
So all is well here, no doubt at some time some bug is going to get me and knock me back a bit, but in the meantime I am pushing the envelope within safe limits, the fitter I am when it happens the faster I will recover.
Cheers
Gerry
Wednesday, April 25, 2007
Gearing up
Yesterday was spent "gearing up" for my fitness routine, with the purchase of a pedometer to measure distance and a heart rate monitor to keep an eye on my work rate, following my friend Gary's good advice. This involved walking to town and back, along the way picking up some music books for the kids and stopping at Starbucks for coffee, so it was a pretty good one hour or more walking with the break in the middle, once again I was sweating like I had run about five miles and today, when I got up, my legs were a little stiff, just as if I had started jogging again. I did manage to do some computer stuff for lee on her business case in the afternoon, so all in all it was a good day mentally and phisically, and I had a pretty good sleep.
Today I set off to the climbing shop on my bike to get Lee some supplies for the monster bike and hike, this time with my heart rate monitor etc so I could set some baselines for my training, I was shocked to find that my resting heart rate is now 100 bpm (was 80 prior to treatment) and when I just pedaled along or walked up the street this rose to 130-140, with any sort of a gentle incline this hit 165. Around 145 is the rate my heart would beat jogging quite fast before treatment so gentle cycling is equal to the most strenous exercise I would have done in the past. At 165 I got off the bike and walked/rested as I felt faint. So at least I am getting a good feel for the performance of my main systems. I joined the local gym today and have a plan to see their resident trainer tomorrow to discuss a managed exercise program to very gently get my fitness back over the next two months.
I have my first post transplant session with Dr Scott tomorrow so I will bring up the issues around the high heart rates and other symptoms and see what she says, perhaps the hospital have some physio advisors who can give me some advice on my exercise program. Overall though I think she will be pleased with my recovery so far, compared to most folk I am doing better day by day and not sleeping so much has actually made me feel more awake and alert so that was a great tip.
Apart from concentrating on my build up, and supporting Lee with her business negoiations, I find I have little time for much other than making the dinner for the family and tidying up the debris they leave behind as they run out the door in the morning. I treat myself to soup at the cafe and read the paper but otherwise I am living the life of a housewife, I can see how you could do this full time and actually fill your day quite well, if you spend about 2-3 hrs on fitness the rest is swept up with routine stuff very easily!
So with broom in hand
Cheers
Gerry
Today I set off to the climbing shop on my bike to get Lee some supplies for the monster bike and hike, this time with my heart rate monitor etc so I could set some baselines for my training, I was shocked to find that my resting heart rate is now 100 bpm (was 80 prior to treatment) and when I just pedaled along or walked up the street this rose to 130-140, with any sort of a gentle incline this hit 165. Around 145 is the rate my heart would beat jogging quite fast before treatment so gentle cycling is equal to the most strenous exercise I would have done in the past. At 165 I got off the bike and walked/rested as I felt faint. So at least I am getting a good feel for the performance of my main systems. I joined the local gym today and have a plan to see their resident trainer tomorrow to discuss a managed exercise program to very gently get my fitness back over the next two months.
I have my first post transplant session with Dr Scott tomorrow so I will bring up the issues around the high heart rates and other symptoms and see what she says, perhaps the hospital have some physio advisors who can give me some advice on my exercise program. Overall though I think she will be pleased with my recovery so far, compared to most folk I am doing better day by day and not sleeping so much has actually made me feel more awake and alert so that was a great tip.
Apart from concentrating on my build up, and supporting Lee with her business negoiations, I find I have little time for much other than making the dinner for the family and tidying up the debris they leave behind as they run out the door in the morning. I treat myself to soup at the cafe and read the paper but otherwise I am living the life of a housewife, I can see how you could do this full time and actually fill your day quite well, if you spend about 2-3 hrs on fitness the rest is swept up with routine stuff very easily!
So with broom in hand
Cheers
Gerry
Monday, April 23, 2007
The Transplant club and life after treatment
Today was my first visit to the "transplant club", this is the clinic for blood sampling and transfusions and the coordinating nurse Liz gets all us post transplant folk together on Monday so we can get the necessary medical support, but also chat to each other about how we are feeling and what is working for us. This has been a great thing for me as I was able to chat to two women who were released a few days before me and they also are feeling sick all the time and run out of energy. Somehow knowing it is normal, and that eventually this too will pass, is a great help with mentally coping with being so weak and sick. My counts were a bit low but the team decided against any transplants as they want to keep a "hole" in the levels so that the body is stimulated to fill the hole and get the stem cells moving. The good news is that meant I was only in the hospital for a few hours rather than all day.
I did get some good advice from Liz, firstly try to keep the sickness meds on full strength rather than the half strength I had been coping with, and try to eat between meals to keep the stomach working on something. The purchase of a banana milk shake on the way out of the hospital did settle my stomach so that was a fine tip, her other tip was to cut out sleeping during the day and when I feel sleepy go for a walk instead, this again is generating a need for fitness to encourage the body to build it up. I must admit I was a bit sceptical about this latter advice but never the less, after a lunch of real fresh tomato and basil soup at the cafe across the road, I set off round the park in the very light rain. Three park benches and a lot of huffing and sweat later I got home, all in all about three quarters of hour of slow walking was completed. Now that I have cooled down and taken on board about a pint of fluids I do feel better, pleasantly tired but not sleepy.
Finally I have been surprised that I am not "happy" to have been released and do not yet feel like celebrating, I thought I was just daunted by the amount of distance I have to go to feel OK again, and pissed off at feeling sick. However I went to the Maggie's centre and got some great articles on how people feel when recovering from cancer, when treatment has left them temporary a shadow of their former self physically. I got a great article on how folk feel which has made me feel a lot better about my current position, and made me start to face the different elements of emotional recovery, you can read it at http://www.cctrust.org.uk/article3.htm if you have a relative or close friend in the same position of me it will help you make sense of the complex tides of emotion which they are dealing with. The always excellent www.cancerbackup.co.uk has a booklet and online section entitled "Adjusting to life after cancer treatment" which is also very clear and helpful.
In essence these good sources identify that once your treatment is "finished", you feel crap, your body does not work properly, you lose confidence in your heath, you worry that the cancer might not be cured, you are fatigued, scared and the support from heath care professionals and others falls off as you are "just resting until you feel fine again". In the meantime a lot of the emotions you were keeping in check to ensure you had your fighting head on during the treatment start to slip out around the edges, anger, fear, frustration being just a few. I personally find knowing this is happening and anticipating to some extent allows me to recognise and manage the fall out as I work through the phases, so this has been a great learning day for me.
I just need to remember not to tell the next person who next complements me on how I "look so well" to "F**k of as I feel crap, angry and frustrated", this would be perfectly understandable according to my booklet but probably would not go down so well in the real world.... A nice thought though. So my two top tips for the day for talking to folk dealing with cancer before and after treatment.
Before
DON'T say "you'll be fine you've got a great attitude" cause they might not be, you have no clue, this is just you making yourself feel better.
DO say something like "I hope/pray it goes as well as possible for you, can I help in any way?"
After
DON'T say "its great that your cured/well/ back to normal" cause they might not be, probably are feeling crap and scared, and then have to pretend to be happy and fine.
DO say "how do you feel" or "its great the treatment part is finished, hows the recovery going" then if they are fine they can say so and if they are feeling bad they can say so and if they want to lift a glass to second (or third) chances at life with you they can do so.
Of course all of this can be ignored in my case as I am going to tell you how I feel anyway in my new extrovert assertive and touchy feely mode !!
As one third of us will get cancer at any point these little tips may help you through it if you have not worked it out yourself already, I know I had not.
Cheers
Gerry
I did get some good advice from Liz, firstly try to keep the sickness meds on full strength rather than the half strength I had been coping with, and try to eat between meals to keep the stomach working on something. The purchase of a banana milk shake on the way out of the hospital did settle my stomach so that was a fine tip, her other tip was to cut out sleeping during the day and when I feel sleepy go for a walk instead, this again is generating a need for fitness to encourage the body to build it up. I must admit I was a bit sceptical about this latter advice but never the less, after a lunch of real fresh tomato and basil soup at the cafe across the road, I set off round the park in the very light rain. Three park benches and a lot of huffing and sweat later I got home, all in all about three quarters of hour of slow walking was completed. Now that I have cooled down and taken on board about a pint of fluids I do feel better, pleasantly tired but not sleepy.
Finally I have been surprised that I am not "happy" to have been released and do not yet feel like celebrating, I thought I was just daunted by the amount of distance I have to go to feel OK again, and pissed off at feeling sick. However I went to the Maggie's centre and got some great articles on how people feel when recovering from cancer, when treatment has left them temporary a shadow of their former self physically. I got a great article on how folk feel which has made me feel a lot better about my current position, and made me start to face the different elements of emotional recovery, you can read it at http://www.cctrust.org.uk/article3.htm if you have a relative or close friend in the same position of me it will help you make sense of the complex tides of emotion which they are dealing with. The always excellent www.cancerbackup.co.uk has a booklet and online section entitled "Adjusting to life after cancer treatment" which is also very clear and helpful.
In essence these good sources identify that once your treatment is "finished", you feel crap, your body does not work properly, you lose confidence in your heath, you worry that the cancer might not be cured, you are fatigued, scared and the support from heath care professionals and others falls off as you are "just resting until you feel fine again". In the meantime a lot of the emotions you were keeping in check to ensure you had your fighting head on during the treatment start to slip out around the edges, anger, fear, frustration being just a few. I personally find knowing this is happening and anticipating to some extent allows me to recognise and manage the fall out as I work through the phases, so this has been a great learning day for me.
I just need to remember not to tell the next person who next complements me on how I "look so well" to "F**k of as I feel crap, angry and frustrated", this would be perfectly understandable according to my booklet but probably would not go down so well in the real world.... A nice thought though. So my two top tips for the day for talking to folk dealing with cancer before and after treatment.
Before
DON'T say "you'll be fine you've got a great attitude" cause they might not be, you have no clue, this is just you making yourself feel better.
DO say something like "I hope/pray it goes as well as possible for you, can I help in any way?"
After
DON'T say "its great that your cured/well/ back to normal" cause they might not be, probably are feeling crap and scared, and then have to pretend to be happy and fine.
DO say "how do you feel" or "its great the treatment part is finished, hows the recovery going" then if they are fine they can say so and if they are feeling bad they can say so and if they want to lift a glass to second (or third) chances at life with you they can do so.
Of course all of this can be ignored in my case as I am going to tell you how I feel anyway in my new extrovert assertive and touchy feely mode !!
As one third of us will get cancer at any point these little tips may help you through it if you have not worked it out yourself already, I know I had not.
Cheers
Gerry
Sunday, April 22, 2007
Short of puff
Well things are going pretty well on the home front, make no mistake I am still pretty sick but at least mentally my head is in a gentle recovery phase. Issues at the moment are primarily feeling sick all the time, the anti nausea tablets help but I walk around all day thinking about throwing up as I have a horrible taste at the back of my throat like I was just about to. The tablets have meant I have not actually done it but its pretty miserable feeling like this all the time, today for the first time there were a few hours when this was not the case. No need to say this has kept the cork in the bottle of champagne still.
The other major issue, which I think means I will need a blood transfusion tomorrow at my check up, is running out of puff. This is usually a sign of very low red blood cells in my blood, for instance I got the car out for a polish today after it was charged up, took it to the garage to fill it up, took down the roof - and put it back in the garage unpolished, no puff left at all, in fact it was an effort to stay focused long enough to get it in the garage without hitting the narrow door. Once again I have to pause half way up the stair to our flat to breath a lot so I think low haemoglobin is the cause. I am fine if I stay more or less still, like at the computer just now so my mind is willing but the body is weak.
Fatigue is a more minor problem, as no one is expecting me to do much I just lie down when I feel tired and I end up sleeping 2-3 hrs in the course of a day as well as going to bed at 10pm getting up at 10am. So a bit of a sleepyhead.
Keeping me busy when I am awake has been organising the logistics of getting about 20 people to the Monster bike and Hike, my outline of who has to be where in what car etc is now in its third iteration as folks chop and change plans and who wants to be in chalets with who etc. We seem to be getting close to a final plan at last which is a relief. My other interest is the setting up of Lee's company her current employers have made some pretty tough demands so the best of my life's lessons on how to negotiate to a reasonable outcome are being put to the test.
The weather continues to be kind here and I continue to watch the grass grow instead of cutting it as I should if I had some puff, lets hope next week will see me with more energy and less nausea but in reality as on average I should still be in hospital I am still doing quite well.
So a wobbly body update from me but a happy mind as long as I do not try to do too much!
Cheers
Gerry
The other major issue, which I think means I will need a blood transfusion tomorrow at my check up, is running out of puff. This is usually a sign of very low red blood cells in my blood, for instance I got the car out for a polish today after it was charged up, took it to the garage to fill it up, took down the roof - and put it back in the garage unpolished, no puff left at all, in fact it was an effort to stay focused long enough to get it in the garage without hitting the narrow door. Once again I have to pause half way up the stair to our flat to breath a lot so I think low haemoglobin is the cause. I am fine if I stay more or less still, like at the computer just now so my mind is willing but the body is weak.
Fatigue is a more minor problem, as no one is expecting me to do much I just lie down when I feel tired and I end up sleeping 2-3 hrs in the course of a day as well as going to bed at 10pm getting up at 10am. So a bit of a sleepyhead.
Keeping me busy when I am awake has been organising the logistics of getting about 20 people to the Monster bike and Hike, my outline of who has to be where in what car etc is now in its third iteration as folks chop and change plans and who wants to be in chalets with who etc. We seem to be getting close to a final plan at last which is a relief. My other interest is the setting up of Lee's company her current employers have made some pretty tough demands so the best of my life's lessons on how to negotiate to a reasonable outcome are being put to the test.
The weather continues to be kind here and I continue to watch the grass grow instead of cutting it as I should if I had some puff, lets hope next week will see me with more energy and less nausea but in reality as on average I should still be in hospital I am still doing quite well.
So a wobbly body update from me but a happy mind as long as I do not try to do too much!
Cheers
Gerry
Friday, April 20, 2007
FREEDOM !!
As you can probably tell from the title I made it back home finally, nearly setting a transplant record, but someone did it two days faster than me once. I have been incredibly lucky as patients often go five weeks in hospital, compared to my three, and are often spending a lot of that time with morphine pumps knocking them out so that they can bear the discomfort. I got off very lightly with only about four days of feeling really bad in the three weeks I was in hospital. One thing for sure if anyone comes near me with Mephfan again I am going to run away, I think you can only do that once in a lifetime.
So I am home but am a curious mix of fine (in mind) and wobbly (in body), being at home gives me so much positive mental energy, distractions, cooking and the ebb and flow of the household all hold me in a warm embrace so I am really happy to be here rather than brooding in my cell in the hospital. The wobbly starts with the number of pills I need to support the transplant, constant profound fatigue, residual nausea and half functioning digestive system, with lots of rest during the day when the house is quiet, with anti-sickness meds most of these symptoms are manageable. Each day I try to set myself gentle targets or tasks which take an hour or two, yesterday I rewired a plug from round to square pin in the Aston garage so I could plug in the battery charger and bring it back to life. Today I am going to make a logistics plan for the Maggie's Bike and Hike challenge and unpack from the hospital. These little targets along with a lot of sleeping, keep my mind busy, but can be dropped at any time when the wave of fatigue hits. It can be quite funny when this happens as its almost like being drunk, I just have to lie down and can't even finish my sentences when it hits.
Overall I can't believe how well I feel already only days after feeling so bad, having an immune system is a great thing! One thing I am not looking forward to is going to the twice weekly clinics as without my Hickman line (they took it out Tuesday) all the blood samples are taken by needle which I hate, specially as my veins are shot and it often takes them a few goes to get one to bleed properly. However at least I no longer have pipes coming out of my chest to frighten kids and dampen my romantic life (though fatigue has taken care of that for a while anyway).
I am setting Monday as my target to start very gentle physical exercise, I need to get a heart monitor and a pedometer to be able to measure progress, and to ensure I do not overdo things. My friend Gary Henderson is going to put together some advice for me, as he coaches retired folks in swimming he has a lot of experience with folks building up from a fragile base in the right way.
As to fun I am looking forward to the Maggie's bike and hike as I am so far ahead of schedule I think we will all go up and stay in the lodges we hired, as the participants do the walk we can drive along to meet them at the checkpoints. I can sleep or help with the support team as my strength dictates. So far wobbly tummy and nausea has kept the cork in the champagne bottle but at some point over the weekend perhaps half a glass might be allowed. As my counts are nearly normal for white blood cells I am not needing to be in isolation, I need to avoid cuts and actively ill people as my platelets are low and my immune system is relearning each bug so I don't want to overload it.
So "free at last" as the famous speech goes, if I am average I will end up back in the hospital twice in the next two months with fevers or temperature, if my luck holds and I am careful I may be able to avoid this and just have a slow steady progress to a less wobbly me!
Thanks again for all the visits, cards, emails and blog comments over the last three weeks they have really sustained me in the rougher days. I will probably try to keep you posted on a bi weekly basis now we are out of the critical zone.
Cheers
Gerry
So I am home but am a curious mix of fine (in mind) and wobbly (in body), being at home gives me so much positive mental energy, distractions, cooking and the ebb and flow of the household all hold me in a warm embrace so I am really happy to be here rather than brooding in my cell in the hospital. The wobbly starts with the number of pills I need to support the transplant, constant profound fatigue, residual nausea and half functioning digestive system, with lots of rest during the day when the house is quiet, with anti-sickness meds most of these symptoms are manageable. Each day I try to set myself gentle targets or tasks which take an hour or two, yesterday I rewired a plug from round to square pin in the Aston garage so I could plug in the battery charger and bring it back to life. Today I am going to make a logistics plan for the Maggie's Bike and Hike challenge and unpack from the hospital. These little targets along with a lot of sleeping, keep my mind busy, but can be dropped at any time when the wave of fatigue hits. It can be quite funny when this happens as its almost like being drunk, I just have to lie down and can't even finish my sentences when it hits.
Overall I can't believe how well I feel already only days after feeling so bad, having an immune system is a great thing! One thing I am not looking forward to is going to the twice weekly clinics as without my Hickman line (they took it out Tuesday) all the blood samples are taken by needle which I hate, specially as my veins are shot and it often takes them a few goes to get one to bleed properly. However at least I no longer have pipes coming out of my chest to frighten kids and dampen my romantic life (though fatigue has taken care of that for a while anyway).
I am setting Monday as my target to start very gentle physical exercise, I need to get a heart monitor and a pedometer to be able to measure progress, and to ensure I do not overdo things. My friend Gary Henderson is going to put together some advice for me, as he coaches retired folks in swimming he has a lot of experience with folks building up from a fragile base in the right way.
As to fun I am looking forward to the Maggie's bike and hike as I am so far ahead of schedule I think we will all go up and stay in the lodges we hired, as the participants do the walk we can drive along to meet them at the checkpoints. I can sleep or help with the support team as my strength dictates. So far wobbly tummy and nausea has kept the cork in the champagne bottle but at some point over the weekend perhaps half a glass might be allowed. As my counts are nearly normal for white blood cells I am not needing to be in isolation, I need to avoid cuts and actively ill people as my platelets are low and my immune system is relearning each bug so I don't want to overload it.
So "free at last" as the famous speech goes, if I am average I will end up back in the hospital twice in the next two months with fevers or temperature, if my luck holds and I am careful I may be able to avoid this and just have a slow steady progress to a less wobbly me!
Thanks again for all the visits, cards, emails and blog comments over the last three weeks they have really sustained me in the rougher days. I will probably try to keep you posted on a bi weekly basis now we are out of the critical zone.
Cheers
Gerry
Tuesday, April 17, 2007
Preparing for Freedom
Things are going very here in isolation world. My blood counts continue to be strong, appitite is improving and other body functions are returning into the normal zone. I am doing so well the doctors are planning to probably remove my Hickman line today and to send me home tomorrow afternoon. The only issue is they need to find an oral antiboitic to replace the IV one which is fighting the blood bug war against pnemonia. I am almost in a daze at the speed of the recovery from a pretty horrible situation only four days ago.
The convalesence program is pretty long post treatment, it will take me at least three months to build up basic immunity and fitness before returning to some form of working. Not knowing what I will do on return is interesting so I will need to make a plan for that. Ideally some gentle problem fixing/internal consultancy will take me from September to the end of the year before a "proper job" with travelling etc comes up some time after January next year. I will be on significant medications to support the transplant until the end of this year and will need to avoid lots of travel and specially overnight returns from the USA in coach, my previous torture.
Once I get out of hospital I will start the dialogue with the team at Gore on possible short term projects and longer term solid contributions to the enterprise. That should be fun as I enjoy new challenges and opportunities.
In the short term I will need to get a gentle program of exercise and other mental activities to go along with my cooking hobby to prevent "post trauma" syndrome. Apparently a lot of folks who go through this kind of emotional roller coaster find it difficult to adjust back into normal life and have enthuasium for all the usual small challenges of daily life, even Lance Armstrong lay around the house for a few months before he kicked himself into gear so I think this will be a challenge for me as well.
The doctors are not going to do any more scans for about three months but I should have a clear scan under my belt before returning to work, the chance of the cancer still being present is less than 10 percent but I would be pleased to get that reinforcement. After that its just annual check ups and fingers crossed.
I am hoping to take a bit of vacation time in August with the family, we are working through options but our favourite idea is to hire a camper van and potter off to Europe for a few weeks, by then my immune system should be stable enough to leave the umbilical cord to the Western General here in edinburgh. Once I get out I will be on four times a week visits/ transfusions/ samples/ medications/ consultations to the hospital - I should set up a frequent flyer program for the hospital patients, ideas for prizes welcome in the comments section!
So all going well today, once I am out the blog will drop down to something like a once every few days moving to once every week updates. Many thanks to all of you for the comments, emails, calls and visits they really made the days in isolation much more bearable.
Cheers
Gerry
The convalesence program is pretty long post treatment, it will take me at least three months to build up basic immunity and fitness before returning to some form of working. Not knowing what I will do on return is interesting so I will need to make a plan for that. Ideally some gentle problem fixing/internal consultancy will take me from September to the end of the year before a "proper job" with travelling etc comes up some time after January next year. I will be on significant medications to support the transplant until the end of this year and will need to avoid lots of travel and specially overnight returns from the USA in coach, my previous torture.
Once I get out of hospital I will start the dialogue with the team at Gore on possible short term projects and longer term solid contributions to the enterprise. That should be fun as I enjoy new challenges and opportunities.
In the short term I will need to get a gentle program of exercise and other mental activities to go along with my cooking hobby to prevent "post trauma" syndrome. Apparently a lot of folks who go through this kind of emotional roller coaster find it difficult to adjust back into normal life and have enthuasium for all the usual small challenges of daily life, even Lance Armstrong lay around the house for a few months before he kicked himself into gear so I think this will be a challenge for me as well.
The doctors are not going to do any more scans for about three months but I should have a clear scan under my belt before returning to work, the chance of the cancer still being present is less than 10 percent but I would be pleased to get that reinforcement. After that its just annual check ups and fingers crossed.
I am hoping to take a bit of vacation time in August with the family, we are working through options but our favourite idea is to hire a camper van and potter off to Europe for a few weeks, by then my immune system should be stable enough to leave the umbilical cord to the Western General here in edinburgh. Once I get out I will be on four times a week visits/ transfusions/ samples/ medications/ consultations to the hospital - I should set up a frequent flyer program for the hospital patients, ideas for prizes welcome in the comments section!
So all going well today, once I am out the blog will drop down to something like a once every few days moving to once every week updates. Many thanks to all of you for the comments, emails, calls and visits they really made the days in isolation much more bearable.
Cheers
Gerry
Monday, April 16, 2007
Heading for the hills with the calvary
Great news is that my blood counts have come roaring up the scale seeing off mount ulcers, sickness and peeing problems with a ferocious speed. The doctors are so pleased they are talking about taking out my Hickman line and sending me home perhaps on Thursday! This is a great surprise and very welcome news if only for the escape from hospital food. The only residual problem is they did manage to grow a nasty bug from my blood sample of last Friday and apparently this can cause bad pneumonia so they have to get that sorted before they let me go. I am feeling very well overall, still a bit weak and sleepy but not critically ill in any area as before. I started gently on my exercise bike today to try to get onto the exercise routine.
Looking forward to getting a good behaviour award and a pass out from the hospital in the next week !
Cheers
Gerry
Looking forward to getting a good behaviour award and a pass out from the hospital in the next week !
Cheers
Gerry
Sunday, April 15, 2007
I get knocked down - but I get up again !!!
I had great results today my blood cell counts are up after six days right on the floor, day +10, the cell counts are starting to rise with neutrophils at .25 from a previous of .02 (going home level is .5 normal is 3). So its really going to work the graft has taken and from here on in for a month or too it should be the usual two steps forward one step back progress.
I am really, really pleased, not only is it working but I have managed to get through the wringer with relatively civilised outcomes and only a few days when I was out of it. I feel like skipping around the room and then walking home - yeah I know IV lines would be trailing in the dust and I would probably die, but you cant help feeling positive when you know the transplant has worked! Seriously though the doctors are talking about seven days or so before they will release me into home isolation, the first stage of the home based recovery program of a few months.
I hope Andy will have got to the North Pole today which would be a happy coincidence of good luck if he can pull it off.
The nurse has just brought an exercise bike into my room, a reminder that a lot of work is still needed to get me from here to healthy, but at least today we took the first critical step!
(still takes me 5min to start to pee)
Cheers
Gerry
I am really, really pleased, not only is it working but I have managed to get through the wringer with relatively civilised outcomes and only a few days when I was out of it. I feel like skipping around the room and then walking home - yeah I know IV lines would be trailing in the dust and I would probably die, but you cant help feeling positive when you know the transplant has worked! Seriously though the doctors are talking about seven days or so before they will release me into home isolation, the first stage of the home based recovery program of a few months.
I hope Andy will have got to the North Pole today which would be a happy coincidence of good luck if he can pull it off.
The nurse has just brought an exercise bike into my room, a reminder that a lot of work is still needed to get me from here to healthy, but at least today we took the first critical step!
(still takes me 5min to start to pee)
Cheers
Gerry
Saturday, April 14, 2007
Fluffy morphine clouds
Various combinations of drugs including reasonable amounts of Morphine are ensuring that my daytime TV watching existance is passing in a pleasant haze about equal to three pints of our stronger british beer. Just like dad home from the pub on a sunday tends to sleep happily on the couch, I put my head down for a wee snooze and wake up just for a top up of morphine to calm down the revolution in my throat. The docs are talking about giving me a pump but with my blood counts due to recover soon (this is day +9 and recovery should start day 10 to 12) I am restistant as that would be another thing to wean me off on the path to recovery. Todays new development is the cherokee dance I need to do to start peeing, it really hurts to have ulcers in your bits, other than that temperature is still high so I am on rotating quantities of IV antiboitics to try and catch that and get it stable again, hopefully that will eliminate the shouts and dancing which must scare the neighbours.
Other than being chilled out (I really need a Lava lamp) and the medical stuff no news to report I am officially ga-ga in front of theTV even when the TV is off! Deputy blogger was off at castles and concerts last night so may be able to report more interesting stuff.
Cheers
Gerry
Other than being chilled out (I really need a Lava lamp) and the medical stuff no news to report I am officially ga-ga in front of theTV even when the TV is off! Deputy blogger was off at castles and concerts last night so may be able to report more interesting stuff.
Cheers
Gerry
Friday, April 13, 2007
Cherokees caught up
Last night did not go very well at all, I tried to survive without one of my three anti sickness meds and ended up being very sick, which got rid of some of the other sickness meds, so a pretty horrible time was had where I think I saw every hour of the night/morning. This morning my temperature is up and I feel like a punchbag so the wizards are busy taking all the samples you can think of and feeding me oral morphine which has helped eliminate the painful side, so I have wobbled on to my chair to do a little blog. The doc thinks I have a high pain threshold and is setting me up for a morphine pump to go with my iv feeding etc - soon I will be fully connected like Leo in "The Matrix"
The only fun I had yesterday was Lee putting talcum powder on my back to try to ease the itchiness that was driving me nuts, its odd that along with all these medical ups and downs how much the little things like itchy backs can infuriate.
My latest day time TV program is the hairy bikers, to guys who travel round Spain and Morocco so far cooking local dishes which actually look quite good, History books lie unappreciated on the shelf while Tom and Gerry get a look in on TV!
Should only be three or four days before I can get out of the pit, with a following wind could even be sooner, all I can do now is slug it out and take the medicine.
Cheers
Gerry
The only fun I had yesterday was Lee putting talcum powder on my back to try to ease the itchiness that was driving me nuts, its odd that along with all these medical ups and downs how much the little things like itchy backs can infuriate.
My latest day time TV program is the hairy bikers, to guys who travel round Spain and Morocco so far cooking local dishes which actually look quite good, History books lie unappreciated on the shelf while Tom and Gerry get a look in on TV!
Should only be three or four days before I can get out of the pit, with a following wind could even be sooner, all I can do now is slug it out and take the medicine.
Cheers
Gerry
Wednesday, April 11, 2007
One wheel on my wagon.....
But I'm still rolling along, as the childhood song goes. The cherokees are still pretty hard after me as my platlet count has really sunk I am seeing small blood spots under my skin all over my body, not sore just a bit odd looking. My guts are still trying to jump out and strangle me from time to time but painkillers are helping that and the other connected sore bits. Lee's breathing exercises helped yesterday with a bad cramp episode while she was visiting. My mouth and throat are slowley loosing the battle to ulcers and mucuosis so the doctors have me on IV feeding overnight to keep my weight up as its becoming more difficult to eat much now. However my chart of blood counts should start to see some upward movement in four days or so and then the healing begins.
I discovered yesterday (good question from Lee) that I will loose a lot of my immunological memory and have to relearn my response to the normal bugs in the environment just as childeren do when they first go to school or nursery and have a kind of continous sniffel. Dr Scott suggested that exotic holidays should probably wait until 18 months have passed so I will have to relive all that chinese/indian/thia one day bugs once I have mastered the European ones. The trick will be not to get too many at once, all of which will need to effect my choices when it comes eventually to getting back to work.
I had a funny dream last night where I was half the time back at work in a leadership meeting at Gore, which was set out like a funfair, but the other half of the time I was back at the last place I worked in ICI Dumfries, this is my new version of the dream where you have to go back to school because they discovered you did not get your high school qualification and that would invalidate your degree. The drugs I am taking lead to very vivid dreams when I am semi conscious, I can now wake up for blood samples, painkillers or observations and fall back to sleep into the same dream. When I wake up it took a few minutes to unblur reality and dream.
Lazyness has taken over from good intentions with my DVD player, Fraisier, and daytime TV consuming the time when I am not sleeping. The history of the middle east has taken a back seat for a few days - though Iran is now the subject of some research once I feel well enough, so far all I have discovered is that the British are the villans of that period, Churchill annexing their oil reserves around the first world war being the new bit of history I have picked up. Shows how much the world changed between before the first world war and the end of the second world war when such things would no longer be normal.
My head has developed a peach ball fuzz in white/gray which may fall out in about a week as the chemo depiliation effect is due about two weeks after the chemo is applied. I shall let it grow for now to see how it does unless I get bored enough sitting her to shave it just for something to do. I have tried to research Le Mans and Goodwood the two great classic car events in July in this part of the world but I am reluctant to book anything until I have a better feel for how I am. In any case I think copilots will be necessary in case I feel unwell during the tours.
Lee is really enjoying her training for the Monster hikes, she turns up here in trainers and walking gear looking the picture of health in contrast to me - when she was here yesterday I was not in specially good shape so we just chatted which was nice as she was not having to rush to get the kids.
So four or six days before hopefully the blood cell calavary come over the hill top to the rescue, ticking them off, one by one.
Cheers
Gerry
I discovered yesterday (good question from Lee) that I will loose a lot of my immunological memory and have to relearn my response to the normal bugs in the environment just as childeren do when they first go to school or nursery and have a kind of continous sniffel. Dr Scott suggested that exotic holidays should probably wait until 18 months have passed so I will have to relive all that chinese/indian/thia one day bugs once I have mastered the European ones. The trick will be not to get too many at once, all of which will need to effect my choices when it comes eventually to getting back to work.
I had a funny dream last night where I was half the time back at work in a leadership meeting at Gore, which was set out like a funfair, but the other half of the time I was back at the last place I worked in ICI Dumfries, this is my new version of the dream where you have to go back to school because they discovered you did not get your high school qualification and that would invalidate your degree. The drugs I am taking lead to very vivid dreams when I am semi conscious, I can now wake up for blood samples, painkillers or observations and fall back to sleep into the same dream. When I wake up it took a few minutes to unblur reality and dream.
Lazyness has taken over from good intentions with my DVD player, Fraisier, and daytime TV consuming the time when I am not sleeping. The history of the middle east has taken a back seat for a few days - though Iran is now the subject of some research once I feel well enough, so far all I have discovered is that the British are the villans of that period, Churchill annexing their oil reserves around the first world war being the new bit of history I have picked up. Shows how much the world changed between before the first world war and the end of the second world war when such things would no longer be normal.
My head has developed a peach ball fuzz in white/gray which may fall out in about a week as the chemo depiliation effect is due about two weeks after the chemo is applied. I shall let it grow for now to see how it does unless I get bored enough sitting her to shave it just for something to do. I have tried to research Le Mans and Goodwood the two great classic car events in July in this part of the world but I am reluctant to book anything until I have a better feel for how I am. In any case I think copilots will be necessary in case I feel unwell during the tours.
Lee is really enjoying her training for the Monster hikes, she turns up here in trainers and walking gear looking the picture of health in contrast to me - when she was here yesterday I was not in specially good shape so we just chatted which was nice as she was not having to rush to get the kids.
So four or six days before hopefully the blood cell calavary come over the hill top to the rescue, ticking them off, one by one.
Cheers
Gerry
Tuesday, April 10, 2007
The value of things.....
evening bloggers
Today is day +5 and G was feeling really tired and looked v. pale when I saw him at the hospital. We got him some more painkillers as his guts are still causing him a lot of discomfort and we did some controlled breathing excercises to help him get through the spasms, (not as daft as it sounds as any of the sisterhood will vouch for, one of the more useful tips from ante-natal classes!).
He is dreaming of getting home, eating good food, hiding under the duvet up in Capomaestro towers and checking up on the bluesmobile and the MG safely tucked up in their garages. We had a good chat today, I miss talking to G, just about all the things.
Today I felt a bit better as I had been feeling a little low at the weekend, worried about G, stressed about the usual rubbish at work, business hastles and just a bit tired I think with the relentlessness of it all.....so I decided to go on a long walk to the hospital via the water of Leith on Monday to visit G and get some Monster training in. Marie (Odrian and Jim's daughter) kindly watched the children for me and I really enjoyed just being on my own for a while. I find the walking or biking that we are all doing for the Monster training a great de-stresser. I am beginning to feel a bit like Forrest Gump you just start walking and don't want to stop... except for a decent cup of coffee and chocolate cake of course. Bumped into Tim (the Maestro of Capomaestro) on route to Balerno on the bike and discovered he is a closet radio 4 listener (nothing wrong with that..I have been addicted for years and always have it on in the kitchen at home unless Melvin Bragg or Ned Sherrin are on then it gets switched off). Anyway, it was good to see him, he cheered me up and we discussed a few Monstrous tactics and routes over the Pentlands. Tim, being a rather extreme person, has done some serious training for this event which involves cycling out to Flotterstone and then hiking over the 5 peaks in the Pentlands....
Thanks to everyone who has sponsored us so far...my sister Dot just sent down a large cheque for our fundraising as she has sold beautiful blanket boxes that she has made. She and Gordon also did a prayer for G at the Sacre Coeur in Montmartre in Paris.
Today I cycled to Balerno via the canal towpath, then swapping to the Water of Leith and then back into town via the water of Leith to G's hospital. It is a lovely route through Juniper Green and Colinton then through Saughton (prison on one side and cemetry and allotments on the other) past Murrayfied stadium where they host the rugby internationals, along by the modern Art Gallery and Dean village, through Stockbridge (good coffee shops!) and then through Inverleith park and to the hospital. Today I was thinking about time and how we fill our days, how time can be like elastic or gone in an instant and whether we waste time or not. I think we all fill our days with too many things and then you do not really appreciate any of the things you are doing.
G and I had a great time in Hong Kong with the kids when we lived there a few years ago, I really enjoyed not having my life planned out and having the freedom to do some new things. I remember spending all day at a fish market in Aberdeen (HK) getting some shots for my photography assignment that week for my class (which I absolutely loved) this was elastic time and it is stuck in my head.
As we haven't had a poem for a while here is one for G tonight; my mother sent it to me in a time of need:
The invitation
It doesn't interest me what you do for a living.
I want to know what you ache for , and if you dare to dream of meeting your heart's longing.
It doesn't interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.
It doesn't interest me what planets are squaring your moon. I want to know if you have touched the centre of your own sorrows, if you have been opened by life's betrayals or have become shriveled and closed from fear of further pain. I want to know if you can sit with pain, mine or your own, without moving to hide it or fade it or fix it.
I want to know if you can be with joy, mine or your own, if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, to be realistic, to remember the limitations of being human.
I want to know if you can see beauty, even when it's not pretty, every day, and if you can source your own life from its presence.
It doesn't interest me who you know or how you came to be here. I want to know if you will stand in the center of the fire with me and not shrink back.
It doesn't interest me where or what or with whom you have studied. I want to know what sustains you, from the inside, when all else falls away.
I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.
Oriah Mountian Dreamer
Deputy Blogger
Today is day +5 and G was feeling really tired and looked v. pale when I saw him at the hospital. We got him some more painkillers as his guts are still causing him a lot of discomfort and we did some controlled breathing excercises to help him get through the spasms, (not as daft as it sounds as any of the sisterhood will vouch for, one of the more useful tips from ante-natal classes!).
He is dreaming of getting home, eating good food, hiding under the duvet up in Capomaestro towers and checking up on the bluesmobile and the MG safely tucked up in their garages. We had a good chat today, I miss talking to G, just about all the things.
Today I felt a bit better as I had been feeling a little low at the weekend, worried about G, stressed about the usual rubbish at work, business hastles and just a bit tired I think with the relentlessness of it all.....so I decided to go on a long walk to the hospital via the water of Leith on Monday to visit G and get some Monster training in. Marie (Odrian and Jim's daughter) kindly watched the children for me and I really enjoyed just being on my own for a while. I find the walking or biking that we are all doing for the Monster training a great de-stresser. I am beginning to feel a bit like Forrest Gump you just start walking and don't want to stop... except for a decent cup of coffee and chocolate cake of course. Bumped into Tim (the Maestro of Capomaestro) on route to Balerno on the bike and discovered he is a closet radio 4 listener (nothing wrong with that..I have been addicted for years and always have it on in the kitchen at home unless Melvin Bragg or Ned Sherrin are on then it gets switched off). Anyway, it was good to see him, he cheered me up and we discussed a few Monstrous tactics and routes over the Pentlands. Tim, being a rather extreme person, has done some serious training for this event which involves cycling out to Flotterstone and then hiking over the 5 peaks in the Pentlands....
Thanks to everyone who has sponsored us so far...my sister Dot just sent down a large cheque for our fundraising as she has sold beautiful blanket boxes that she has made. She and Gordon also did a prayer for G at the Sacre Coeur in Montmartre in Paris.
Today I cycled to Balerno via the canal towpath, then swapping to the Water of Leith and then back into town via the water of Leith to G's hospital. It is a lovely route through Juniper Green and Colinton then through Saughton (prison on one side and cemetry and allotments on the other) past Murrayfied stadium where they host the rugby internationals, along by the modern Art Gallery and Dean village, through Stockbridge (good coffee shops!) and then through Inverleith park and to the hospital. Today I was thinking about time and how we fill our days, how time can be like elastic or gone in an instant and whether we waste time or not. I think we all fill our days with too many things and then you do not really appreciate any of the things you are doing.
G and I had a great time in Hong Kong with the kids when we lived there a few years ago, I really enjoyed not having my life planned out and having the freedom to do some new things. I remember spending all day at a fish market in Aberdeen (HK) getting some shots for my photography assignment that week for my class (which I absolutely loved) this was elastic time and it is stuck in my head.
As we haven't had a poem for a while here is one for G tonight; my mother sent it to me in a time of need:
The invitation
It doesn't interest me what you do for a living.
I want to know what you ache for , and if you dare to dream of meeting your heart's longing.
It doesn't interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.
It doesn't interest me what planets are squaring your moon. I want to know if you have touched the centre of your own sorrows, if you have been opened by life's betrayals or have become shriveled and closed from fear of further pain. I want to know if you can sit with pain, mine or your own, without moving to hide it or fade it or fix it.
I want to know if you can be with joy, mine or your own, if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, to be realistic, to remember the limitations of being human.
I want to know if you can see beauty, even when it's not pretty, every day, and if you can source your own life from its presence.
It doesn't interest me who you know or how you came to be here. I want to know if you will stand in the center of the fire with me and not shrink back.
It doesn't interest me where or what or with whom you have studied. I want to know what sustains you, from the inside, when all else falls away.
I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.
Oriah Mountian Dreamer
Deputy Blogger
Monday, April 09, 2007
Day +4 Preparing for growth
Helpful tips from the Jolly boys bomber command are helping me pilot through the depths of immune suppression. Today my neutrophil count hit 0.07 from a normal level of 3 so I have around 2 percent of my immune system left. That aside things are going pretty well, even surprisingly so. We managed to find a way to neutralise the stomach cramps and associated regular trips to the bathroom with a painkiller which also slows down the activity of the gut - that was a big relief as it was all getting very very painful. So I am pretty comfortable at the moment.
Tomorrow, day 5, I start on my growth factor injections in an attempt to kick start the growth of new blood from the stem cells but we do not expect to see an influence on blood counts until about day 10 or so. Between here and there is my most vulnerable time as an example I have nosebleeds all the time as the membranes in my nose are so thin now. The doctor said I was lucky to be in such good shape as many others on the same path as me are constantly ill and morphined up to try to get through it, touch wood, I feel very sorry for them.
The tree outside my window has started to grow bright green leaves which is I think a great symbol of hope, by the time I leave it should be in full leaf. The day is passing pretty quietly with the painkillers making me quite sleepy and DVDs like Frasier filling in if the TV is rubbish in the times I am awake, I have taken to torturing myself with watching food programs where they discuss the merits of different forms of slow roasting lamb so that it is truly melt in the mouth....you get the drift. Then I get my hospital food tray delivered and come back to earth with a bang, in reality I can only make myself eat lightly before I have to lie down and recover.
Lee walked to the hospital via about 12 miles of the pathways which criss cross Edinburgh as part of her training for the Monster hike, I think she was quite pleased with the good speed she made and not tripping over her non existent poles on the way. She ran into our friend Tim out training on his bike for the same event so all the team are taking there training for the fundraising 30 mile bike and 40 mile hike quite seriously. If you want to sponsor them you can do that on http://www.justgiving.com/gerrysblogteam. Once this is over I think we will keep up the walking as a hobby together, its something I used to do a lot of and would like to get back to as part of my post transplant training. Some of the drugs I am starting on now to prevent forms of pneumonia are proscribed for 180 days so that is some measure of how long it will take to get my body back fully fit again.
Andy Warrender appears from his tracker to be on the ice on the way to the North Pole, lets hope that the polar bears stay away and all goes safely with his team, you can follow their position on their website http://www.northpole2007.com/.
So in summary things are going as well as could have been hoped for, still a pretty dangerous few days to get through but every day we "get in the bag" is another day closer to the time when my immune system can grow and catch the problem.
Hope you all had a great Easter
Cheers
Gerry
Tomorrow, day 5, I start on my growth factor injections in an attempt to kick start the growth of new blood from the stem cells but we do not expect to see an influence on blood counts until about day 10 or so. Between here and there is my most vulnerable time as an example I have nosebleeds all the time as the membranes in my nose are so thin now. The doctor said I was lucky to be in such good shape as many others on the same path as me are constantly ill and morphined up to try to get through it, touch wood, I feel very sorry for them.
The tree outside my window has started to grow bright green leaves which is I think a great symbol of hope, by the time I leave it should be in full leaf. The day is passing pretty quietly with the painkillers making me quite sleepy and DVDs like Frasier filling in if the TV is rubbish in the times I am awake, I have taken to torturing myself with watching food programs where they discuss the merits of different forms of slow roasting lamb so that it is truly melt in the mouth....you get the drift. Then I get my hospital food tray delivered and come back to earth with a bang, in reality I can only make myself eat lightly before I have to lie down and recover.
Lee walked to the hospital via about 12 miles of the pathways which criss cross Edinburgh as part of her training for the Monster hike, I think she was quite pleased with the good speed she made and not tripping over her non existent poles on the way. She ran into our friend Tim out training on his bike for the same event so all the team are taking there training for the fundraising 30 mile bike and 40 mile hike quite seriously. If you want to sponsor them you can do that on http://www.justgiving.com/gerrysblogteam. Once this is over I think we will keep up the walking as a hobby together, its something I used to do a lot of and would like to get back to as part of my post transplant training. Some of the drugs I am starting on now to prevent forms of pneumonia are proscribed for 180 days so that is some measure of how long it will take to get my body back fully fit again.
Andy Warrender appears from his tracker to be on the ice on the way to the North Pole, lets hope that the polar bears stay away and all goes safely with his team, you can follow their position on their website http://www.northpole2007.com/.
So in summary things are going as well as could have been hoped for, still a pretty dangerous few days to get through but every day we "get in the bag" is another day closer to the time when my immune system can grow and catch the problem.
Hope you all had a great Easter
Cheers
Gerry
Sunday, April 08, 2007
Easter Sunday
evening bloggers!
Pleased to report that G is still doing well at Day +3, he is plotting his blood counts on an excell spreadsheet (once a scientist.....) and his white blood cells and neutrophils are still plummetting into the immunological abyss. G seems to be coping quite well without an immune system so far. I brought the DVD player in for him today so I left him tonight watching Frasier and put a Chocolate Orange in his fridge for an Easter treat.
Some flowers were very kindly delivered for G today by Joan Wareham from the church. He was very touched by their gesture.
Jim kindly sat with the kids tonight to let me get back to the hospital and got the guided tour of the new hamster by Poppy and Holly. Jim overdid the Monster training this weekend and has done something to his knee, which is not really surprising considering he did a 20 mile cycle and a 20 mile hike, then a 10 mile jog and a 10 mile hike followed by a 20 mile bike ride so he has already done the Monster hike and more in the last couple of days of training......in case anyone reading this is wondering, Jim in fact tripped over his poles and twisted his knee (don't tell Ian).
I lapsed a little with my training this weekend, but did have a short 1/2 mile stroll to the pub and back on Saturday night with Andrew, (no poles required and knees OK so far).
Happy Easter to all.
deputy blogger
Pleased to report that G is still doing well at Day +3, he is plotting his blood counts on an excell spreadsheet (once a scientist.....) and his white blood cells and neutrophils are still plummetting into the immunological abyss. G seems to be coping quite well without an immune system so far. I brought the DVD player in for him today so I left him tonight watching Frasier and put a Chocolate Orange in his fridge for an Easter treat.
Some flowers were very kindly delivered for G today by Joan Wareham from the church. He was very touched by their gesture.
Jim kindly sat with the kids tonight to let me get back to the hospital and got the guided tour of the new hamster by Poppy and Holly. Jim overdid the Monster training this weekend and has done something to his knee, which is not really surprising considering he did a 20 mile cycle and a 20 mile hike, then a 10 mile jog and a 10 mile hike followed by a 20 mile bike ride so he has already done the Monster hike and more in the last couple of days of training......in case anyone reading this is wondering, Jim in fact tripped over his poles and twisted his knee (don't tell Ian).
I lapsed a little with my training this weekend, but did have a short 1/2 mile stroll to the pub and back on Saturday night with Andrew, (no poles required and knees OK so far).
Happy Easter to all.
deputy blogger
Saturday, April 07, 2007
Day +2 Holding on ... to the toilet!
I have just had terrible deja vu of my younger days, being terribly ill after drinking whisky or scrumpy cider. I was just hanging on to the bowl swearing "never again" as my body tried to be ill but there was no reserve left, then I remembered I had not had the pleasure of getting comfortably drunk for the preceeding four or five hours, bummer!
Now stabilised by intravenous feed of anti nausea drugs (could be a commercial opportunity for drunk students they are missing) I am feeling a bit human again. Bernise came to visit and brought Fraiser on DVD which may be a perfect match for my mood, light and not to hard to concentrate on. Lee was in earlier and brought snacks which may be needed once I am stable as usually I am very hungry when the nausea passes.
My other end is still in full scale gut rot rebillion and my counts are dropping about 50% down since yesterday so we are still in the exciting part of this adventure for sure.
Never the less I had good chats with Lee and Bernise, watched the F1 GP qualifiying and the boat race (rowing) in between visits to my new favourite place in the bathroom. I am still self propelled and can still eat (though this is rather more of a two way process than I would prefer) So according to the doctors I am apparently doing "very well". Hopefully I can hold off the throat infections etc for a few more days as my friend in the other room says its like trying to swallow razor blades and morphine is all that can touch the pain. We both have only to get through the next 8 days or so, heads down and sleep as much as possible is an agreeable formulae.
I have a new Top Gear magazine to entertain me for the evening and with some Dr Who on TV that should get me to sleeping time without much trouble.
Cheers
Gerry
Now stabilised by intravenous feed of anti nausea drugs (could be a commercial opportunity for drunk students they are missing) I am feeling a bit human again. Bernise came to visit and brought Fraiser on DVD which may be a perfect match for my mood, light and not to hard to concentrate on. Lee was in earlier and brought snacks which may be needed once I am stable as usually I am very hungry when the nausea passes.
My other end is still in full scale gut rot rebillion and my counts are dropping about 50% down since yesterday so we are still in the exciting part of this adventure for sure.
Never the less I had good chats with Lee and Bernise, watched the F1 GP qualifiying and the boat race (rowing) in between visits to my new favourite place in the bathroom. I am still self propelled and can still eat (though this is rather more of a two way process than I would prefer) So according to the doctors I am apparently doing "very well". Hopefully I can hold off the throat infections etc for a few more days as my friend in the other room says its like trying to swallow razor blades and morphine is all that can touch the pain. We both have only to get through the next 8 days or so, heads down and sleep as much as possible is an agreeable formulae.
I have a new Top Gear magazine to entertain me for the evening and with some Dr Who on TV that should get me to sleeping time without much trouble.
Cheers
Gerry
Friday, April 06, 2007
Day +1, Holding on
So this is the day after stem cell transplant, so far things are going comparatively well. My friend down the ward sent me a note yesterday saying that she had been on IV feeding and a morphine pump to cope with throat problems (she is on the same timetable as me). Fortunately other than the violent sickness when I first had the Melphan chemo I have been reasonably stable, I feel sick all the time but that is expected and should fade over the next few days, the key thing is that I have not yet had any infections which are the real troublesome thing. This will not last but every day that I can stay infection clear is another day closer to when my stem cells will be able to pull me out of the pit so the hole will be shallower.
Hence I am now paranoid about getting infections, I stay in my isolation room and carefully wipe down all the surfaces with antibiotic wipes in addition to the staff doing the same thing, When I shower in the morning it is with an antibiotic medical replacement for soap and after each meal teeth and mouth are carefully cleaned and washed out with special mouthwash. So we are touching wood and hoping the number of "clear" days I can put in can continue to grow before the inevitable infections take hold. Obviously visits are down to just Lee for half an hour or so a day as part of this strategy but Skype means I can keep in touch with the kids and others so the isolation is not too bad, I only have to cope with about another 20 days or so which is not too difficult.
Lee is going to bring in my old Tia Chi books as I think that practice which I gave up many years ago is appropriate for this next stage of my recovery, when I feel up to it at least. I really used to enjoy Tia Chi which I studied for a few years in Carlisle, the place our class met was an old warehouse which overlooked the town and so we would practice in silence as the sun went down over the town, a really good memory for me. I have noticed my bristles on my chin are growing back, they will fall out again in a few weeks, but the alarming thing is they are white! soon I will have a white goatee beard and a bald head ! Look out grasshopper here I come!
As an antidote to Fisk, and recommended by my friend Jim Buckley, I am reading Hannity "deliver us from evil" to better understand the US background to the decision and consequences Fisk saw at first hand in the middle east. The contrast is making my head spin as both make good points but its difficult to see cause and effect. As an example Hannity praises Regan for supporting the Afghan resistance with out mentioning the main recipient was Osama Bin Ladin via Saudi Arabia. The very important recipient of US aid in the region at that time was ...Saddam Hussein, to help him stand against, and eventually invade, Iran. Once this is all over I am going to write a summary of what I have learnt. Dr Scott my consultant has become a chum and is now going to buy Fisk following my recommendations (Title is The Great War for Civilisation)
So tummy is fighting back a bit now so I will leave the blog and retire to the loo before a well earned sleep, thanks for all the messages, emails and Skype calls they break up a pretty boring day.
Cheers
Gerry
Hence I am now paranoid about getting infections, I stay in my isolation room and carefully wipe down all the surfaces with antibiotic wipes in addition to the staff doing the same thing, When I shower in the morning it is with an antibiotic medical replacement for soap and after each meal teeth and mouth are carefully cleaned and washed out with special mouthwash. So we are touching wood and hoping the number of "clear" days I can put in can continue to grow before the inevitable infections take hold. Obviously visits are down to just Lee for half an hour or so a day as part of this strategy but Skype means I can keep in touch with the kids and others so the isolation is not too bad, I only have to cope with about another 20 days or so which is not too difficult.
Lee is going to bring in my old Tia Chi books as I think that practice which I gave up many years ago is appropriate for this next stage of my recovery, when I feel up to it at least. I really used to enjoy Tia Chi which I studied for a few years in Carlisle, the place our class met was an old warehouse which overlooked the town and so we would practice in silence as the sun went down over the town, a really good memory for me. I have noticed my bristles on my chin are growing back, they will fall out again in a few weeks, but the alarming thing is they are white! soon I will have a white goatee beard and a bald head ! Look out grasshopper here I come!
As an antidote to Fisk, and recommended by my friend Jim Buckley, I am reading Hannity "deliver us from evil" to better understand the US background to the decision and consequences Fisk saw at first hand in the middle east. The contrast is making my head spin as both make good points but its difficult to see cause and effect. As an example Hannity praises Regan for supporting the Afghan resistance with out mentioning the main recipient was Osama Bin Ladin via Saudi Arabia. The very important recipient of US aid in the region at that time was ...Saddam Hussein, to help him stand against, and eventually invade, Iran. Once this is all over I am going to write a summary of what I have learnt. Dr Scott my consultant has become a chum and is now going to buy Fisk following my recommendations (Title is The Great War for Civilisation)
So tummy is fighting back a bit now so I will leave the blog and retire to the loo before a well earned sleep, thanks for all the messages, emails and Skype calls they break up a pretty boring day.
Cheers
Gerry
Thursday, April 05, 2007
Stem cells are go........
Today was a significant one as the stems cells were taken out of liquid Nitrogen storage and defrosted in G's room and immediately infused through his hickman line. They are on their way to his bone marrow to grow a whole new immune system. We are doing lots of visualisation techniques to encourage them to differentiate into T-cells and B-cells and neutrophils and to grow as quickly as possible to help protect him from infections.
G is doing really well and looked very well today when I went in to celebrate Day 0 with him. He is still feeling sick and very tired but is in remarkably good shape. The doctors are keeping a close eye on him but are happy to hold off the IV feeding as long as he can eat and drink enough himself.
We had a good chat today and I told G about my day at work as I had had a difficult meeting about the business and felt a little flat. I was delighted to see G open both eyes and fix me with that, "mulligan business look" and he immediately sat up in the bed and started to dictate a response "right this is what we are going to do......" and was quite back to his old self.
Lets hope that the stem cells can get in there and regrow his immune system as quickly as possible before he has to cope with any infections. I am bringing in some Tai Chi books for him tommorrow and I think now is really the time to focus on positive thoughts and visualisation and all the support and complementary therapies as hopefully the cancer is all gone now and he is beginning the road to recovery, the stem cells being the front line in that process. It has also made me appreciate and value again the contribution of research scientists and immunologists that have made this treatment a possibility.
Thank you all so much for the texts and E.mails, letters etc. G really appreciates them. I'm glad he has a room with a view but I know it is tough for him to be in isolation for these weeks, so keep the messages coming.
I'm off to get the kids tucked up in bed and looking forward to the Easter holiday weekend.
Have a good one.
Deputy Blogger
G is doing really well and looked very well today when I went in to celebrate Day 0 with him. He is still feeling sick and very tired but is in remarkably good shape. The doctors are keeping a close eye on him but are happy to hold off the IV feeding as long as he can eat and drink enough himself.
We had a good chat today and I told G about my day at work as I had had a difficult meeting about the business and felt a little flat. I was delighted to see G open both eyes and fix me with that, "mulligan business look" and he immediately sat up in the bed and started to dictate a response "right this is what we are going to do......" and was quite back to his old self.
Lets hope that the stem cells can get in there and regrow his immune system as quickly as possible before he has to cope with any infections. I am bringing in some Tai Chi books for him tommorrow and I think now is really the time to focus on positive thoughts and visualisation and all the support and complementary therapies as hopefully the cancer is all gone now and he is beginning the road to recovery, the stem cells being the front line in that process. It has also made me appreciate and value again the contribution of research scientists and immunologists that have made this treatment a possibility.
Thank you all so much for the texts and E.mails, letters etc. G really appreciates them. I'm glad he has a room with a view but I know it is tough for him to be in isolation for these weeks, so keep the messages coming.
I'm off to get the kids tucked up in bed and looking forward to the Easter holiday weekend.
Have a good one.
Deputy Blogger
Wednesday, April 04, 2007
Day -1, Stem cells tomorrow
Well that last chemo agent does what it says on the tin, I think my body is trying to put me into low earth orbit by the force of its own reactions at both ends, take a heavy night out combined with the worst food poisioning you have had and thats were I was this morning.
Things are improving a bit as the day passes, headache succumbed to a mix of painkillers and stomach has held on to a bit of lasagna for an hour so thats an improvement on earlier attempts. My body is reacting like it has been poisioned and is not letting me eat any more to keep the source of the poision away - bodies not being programmed to understand hickman lines understandably.
The weather here is beautiful, blue sky and warm, so that leads to nice views which cheer me up as I pace up and down in my cadge, I try to walk a little bit between sleeps to help the metabolism and distribution of the chemo so I can get clear of it. This also means drinking a lot of water, judging the rate to avoid the onset of hiccups which is a prelude to being ill. Lee came in to visit and cheer me up, which she managed as usual, despite having to juggle work, kids and normal life while I am in here. My circle of concentration is pretty small at the moment so passive listening to the radio has been the extent of activities.
So things going as expected, my last chemo is done, stem cells back tomorrow, a rough week or so ahead, but then on its all recovery, which is a nice thought.
Cheers
Gerry
Things are improving a bit as the day passes, headache succumbed to a mix of painkillers and stomach has held on to a bit of lasagna for an hour so thats an improvement on earlier attempts. My body is reacting like it has been poisioned and is not letting me eat any more to keep the source of the poision away - bodies not being programmed to understand hickman lines understandably.
The weather here is beautiful, blue sky and warm, so that leads to nice views which cheer me up as I pace up and down in my cadge, I try to walk a little bit between sleeps to help the metabolism and distribution of the chemo so I can get clear of it. This also means drinking a lot of water, judging the rate to avoid the onset of hiccups which is a prelude to being ill. Lee came in to visit and cheer me up, which she managed as usual, despite having to juggle work, kids and normal life while I am in here. My circle of concentration is pretty small at the moment so passive listening to the radio has been the extent of activities.
So things going as expected, my last chemo is done, stem cells back tomorrow, a rough week or so ahead, but then on its all recovery, which is a nice thought.
Cheers
Gerry
Monday, April 02, 2007
The Matador of bone marrow
It seems like my big dive will be precipitated by a drug called Melphalan which you can find out more about on http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Melphalan I have a protocol for its application tomorrow which has 12 steps with lots of checks and balances to ensure that the drug is heavily diluted when it goes through the kidneys so pre and post hydration are critical and nausea is a pretty common issue. This is the drug which matador like, finishes off my by now stunned and swaying bone marrow with a sharp cut, from then on the blood counts will go into free fall only to be caught by the stem cells, introduced on Thursday once the drug is clear of my system, digging in and building me up some new blood. In between transfusions, drugs and isolation are the things are keeping me going over the gap, this may also include IV feeding. So (a) I am a bit nervous (actually petrified to be honest) and (b) deputy blogger may be shutting down visits and blogging in my place occasionally for about 10 days from tomorrow. Like all chemo it may take a few days to kick in as the existing blood takes time to deplete and then is not replaced until the stems cut in. I was eating a bit of Easter egg today and the nurse said "you've started early" I said "I'm getting Melphalan tomorrow" she quipped "I'd eat the rest today then.....!"
So I am trying to type away my nervousness while half watching the gadget show and waiting for Nick to arrive for a chat.
Nick and Lee have been and gone in between paragraphs there and I feel fortified by an illicit coffee, some chocolate and good chats with both about my fears and apprehensions, both Lees business start up and Nicks well established business are going well just now so we talked over tactics and options for both over the visit. As usual I admonish Nick that he only has so much working life left so he should extend himself further, he is quite cautious which is often a good thing, but sometimes stands in the way of opportunity. Easy for me to say its not my time and my money, but I think our chats help reflect to Nick and outside or longer term view.
We once went to work together in Russia for a few days on a consulting job, in the midwinter, and had any number of scrapes and close calls in a few days including a drunken mafia boss chopping of the top of a bottle of vodka and insisting "drink with me". Turned out he was Chechen so as I was Irish we were "revolutionary brothers". Fantastic country, wonderful cultured people, incredibly crap government at the time 1995, so the poverty was amazing. One of the good things we concluded from that adventure was that we were firm friends but best stay out of each others businesses and so it has stayed - free discussion and advice in the pub both ways but no joint ventures. Mostly because good friends are hard to find and spoiling that with the up and downs and tensions of working together can be unwise. And so it has been ever since.
Anyway the memories of winter in Russia have cheered me up, Lee is going to come in tomorrow before the bone marrow matador makes its appearance so I think I will use my mediation tapes tonight to try to get some positive visualisation of the matador getting the final few cells of the cancer before the stem cell cavalry sweep over the hill bugles baying!
Cheers
Gerry
So I am trying to type away my nervousness while half watching the gadget show and waiting for Nick to arrive for a chat.
Nick and Lee have been and gone in between paragraphs there and I feel fortified by an illicit coffee, some chocolate and good chats with both about my fears and apprehensions, both Lees business start up and Nicks well established business are going well just now so we talked over tactics and options for both over the visit. As usual I admonish Nick that he only has so much working life left so he should extend himself further, he is quite cautious which is often a good thing, but sometimes stands in the way of opportunity. Easy for me to say its not my time and my money, but I think our chats help reflect to Nick and outside or longer term view.
We once went to work together in Russia for a few days on a consulting job, in the midwinter, and had any number of scrapes and close calls in a few days including a drunken mafia boss chopping of the top of a bottle of vodka and insisting "drink with me". Turned out he was Chechen so as I was Irish we were "revolutionary brothers". Fantastic country, wonderful cultured people, incredibly crap government at the time 1995, so the poverty was amazing. One of the good things we concluded from that adventure was that we were firm friends but best stay out of each others businesses and so it has stayed - free discussion and advice in the pub both ways but no joint ventures. Mostly because good friends are hard to find and spoiling that with the up and downs and tensions of working together can be unwise. And so it has been ever since.
Anyway the memories of winter in Russia have cheered me up, Lee is going to come in tomorrow before the bone marrow matador makes its appearance so I think I will use my mediation tapes tonight to try to get some positive visualisation of the matador getting the final few cells of the cancer before the stem cell cavalry sweep over the hill bugles baying!
Cheers
Gerry
Sunday, April 01, 2007
A new theme - topgear
Just watched the end of our local motoring program Topgear where they ran the Porsche 911 against the Aston V8 and the BMW 9 series. In the end they settled on the 911 as being the fastest most practial choice however said that the BMW M5 would be a good competition for all of them had it been in the group (one vote for John Housego there). I did think about the Porsche myself but I had one when I was younger and, although I loved it, buying another one would feel like going back, rather than trying something new, which us petrolheads want to do. My friend Larry has a modern corvette and another american friend has a Viper but I have never seen them run against the European competitors other on a proper twisty road. The tests I have seen like that tend to come out in favour of the latest Ferrari every time I have seen them run. I never have driven a Ferrari so I think I am going to hire one for a day in the summer (you can come Kenny) and see what all the fuss is about. In Scotand people scratch Ferraris on sight so they are not a practicle proposition.
As you can probably tell by my wittering attempts to move the focus away from banjo playing cousins I am actually feeling OK today, sleepy sick and with a throat infection brewing but not in any sort of pain zone so thats another day ticked off successfully. Wednesday onward is supposed to be when the fun proper starts and recovery should happen the weekend after easter.
My day went quietly with Nick and Lee visiting, Philip, Brenda and my kids Poppy and Holly all popped on and of the webcam which was good fun for all as we tried to sort out the technology for the first time. However we are now all up and running and big fans of videoconferencing.
Kids are off to sports camp during the day tomorrow so Lee will have the chance to get up and see me and get some work done as well.
Hope you all are keeping fine
Gerry
As you can probably tell by my wittering attempts to move the focus away from banjo playing cousins I am actually feeling OK today, sleepy sick and with a throat infection brewing but not in any sort of pain zone so thats another day ticked off successfully. Wednesday onward is supposed to be when the fun proper starts and recovery should happen the weekend after easter.
My day went quietly with Nick and Lee visiting, Philip, Brenda and my kids Poppy and Holly all popped on and of the webcam which was good fun for all as we tried to sort out the technology for the first time. However we are now all up and running and big fans of videoconferencing.
Kids are off to sports camp during the day tomorrow so Lee will have the chance to get up and see me and get some work done as well.
Hope you all are keeping fine
Gerry
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