I continue to be impressed by the speed of our national health service here in the UK when you have a really critical, and somewhat time dependant, illness. Today I was in Aberdeen getting my PET scan done (this is the only scanner in Scotland) from a diagnosis which we just got on Thursday last week. I think I was slotted in over lunchtime, in reality due to the good work of Dr Yulle and her secretary. So it will take about a week for the results to be assembled, looked at by the PET experts, sent back to London for double check and then ready for a discussion with my team in the Edinburgh cancer centre on Thursday 7th december. I guess in the USA you may get things quicker that than but I feel comfortable with the checking here as we did get a mistaken all clear last time, which was correctly caught by the experts. So by the end of next week we will know if I am heading down path A (radiotherapy to the affected node, easy street) or path B (stem cell replacement plus maximum chemo, opposite of easy street). That will be a big day in the whole story and I think Lee wants to come along as it is such a critical discussion.
Until then there is nothing I can do, I feel fine and I have a lot of stuff to sort out so I am heading off to the USA at 5am tomorrow to try to work through what to do with my backup for my job in either path A or path B. In the first part of the trip I will be with the IT community in Gore and the manufacturing leaders of the other divisions to cover our new IT system project and the plans for operations in China. Then I should have a days break in Manhatten just to indulge in a bit of shopping, cocktails and a broadway show - kind of a last extravagance before getting back into the closed world of hospitals and recovery. On Monday the leadership team of our Fabrics division, were I work, is getting together to discuss the plans for the next six months and some big investment decisions, so I am really pleased to be able to join them for that and a discussion about what to do about my work over the next months depending on path A or path B.
I am however feeling lucky again today as I spotted the police car lurking in the bushes before he managed to get a lock on my speed, and more importantly just caught a flash of movement in my mirror as he pulled out after me in the far distance. I guess these guys really wanted to bag an Aston Martin, because I sat right on the speed limit for 15min, in the dark, with cars speeding past me until finally he got fed up hanging back for me to let rip and cruised up beside me, pulled in front of me, and just sat there for a few miles.... before pulling off and setting up a new trap.
I had a nice trip up to Aberdeen in the car as it constantly gets good reactions from people, I think because they are rare, pretty and an English icon. In my old Porsche or the faster Impreza turbo I had guys would race you on the road to cut you up. In this case I was in busy traffic with an Impreza and a souped up clio all with 2-3 young guys in, so we played tag in and out of the traffic - no silly stuff just accelerating to about 85 when there was an opening in the traffic. I could accelerate more quickly than them, so was in front, but did not want to go too fast so they caught me up. Much to my surprise they just pulled up beside on an open road and made "go for it" signs - they just wanted to hear the engine and see the car squat down and go ! As it was a dry open road I did drop to third and boot it up to about 110, then dropped back down to a safe 80 when the others just tucked in behind and we went about 20 miles in convoy until they pulled off. I have never had a reaction like that on a road before I must admit it did make me smile.
I had a nice time up at Lee's parents house, Lee was so worried that I might miss the scan that she insisted I went up the day before. Her parents live about 200 meters from the scanner as her dad was a consultant at the hospital before he retired. She calls them Silvia and Gengus after a far side cartoon which featured Silvia and Gengus Kan at home, but actually her dad Dr Innes (or Sandy) is a great character who has a load of insightful stories about his time as a doctor, Silvia is a bit of a hippie, in some ways, who really has done a lot of research and gained qualifications in alternative medicine through a lot of study, so together I get a really nice balance of advice, crystals, books, diet, good conversation and good wishes from every trip up to see them. This was no exception and I feel emotionally built up by my conversations with both of them over the last two days.
When I returned I found that the missing windows for our loft conversion have finally arrived and they look excellent, I think Tim (the builder) and the guys, who have been with us now for about four months, have kind of become part of the extended family. They have done an excellent job on the work and also in interactions with the family. Hence the news was leaked to one of them and now everyone is being very kind and supportive, specially to Lee. To be honest I think this has been a really tough blow for Lee, I understand, as I think it is actually harder to be the partner in this type of situation, as added to all the issues you have the problem of powerlessness to deal with. At least I can chose how to face the music so I have some feeling of control, but for Lee she sees all the potential consequences and yet cannot herself grab any of it and make it different. I would be useless if our roles were swapped, and I feel terrible for the trouble I am causing her. She tried to go to a work event on Monday and could not get past meeting some friends to go together before the stress popped up in tears and the guys covered the base and sent her home. I hope once we get a plan for the treatment some of the uncertianty can be resolved and we can plan even in the short term to have some oasis of calm just for a few days to enjoy some of the normal things of life along with all this fuss.
So in summary, the scan is done, I feel fine, and all the sensible things to prepare for the next months and weeks will be put together in the next six days, and I will tilt my hat to the world with a trip to manhatten while waiting for the A or B decision. In the meantime Lee will go to a conference, kids have sleepovers with friends, homework will be done, decorating will be finished and life will go on much as before - which is how it should be. My feeling is that even in these extreme circumstances there is no where I would rather be based than here, with the occasional adventure to China or the USA just to remind me of how much I like being home, but also how much I enjoy working with such interesting colleague from all across the globe.
Well thats enought for tonight I am sitting down to watch a program about the Tusanmi disaster in a few minutes. I can remember getting off a plane from a skiiing holiday in heathrow and seeing the news (at that point a day or more old) and ringing the plant in China and colleagues around the world to see who was there, fortunatly Andy and Karen who were in the region had other plans, none of the Shenzhen team were there, and the UK folks Gordon et al were all right having moved hotels the day before (this was confirmed as we saw him on the TV news arriving at the airport in Edinburgh). Just goes to show how wide our team is spread and how your thoughts turn to the team in those cases.
So see some of you in the USA, thanks to lees parents for their hospitality and advice, and lets see how the consultation goes next week.
Cheers
Gerry
Tuesday, November 28, 2006
Sunday, November 26, 2006
Sunny sunday afternoon
I am surprised that the weather has been so good over the last three days, its seems like fate is conspiring to bring beautiful winter sunny days to combat my tendency to be depressed by the relapse news. Last night I decided that clean living could wait for a few days and polished off a bottle of wine in the course of the evening - which had the desired effect of knocking me out for the count and I slept solidly from 10pm until 7 this morning when the cat wanted out. Even with all that sleep I managed to creep back under the duvet and fell into one of those half awake half asleep comfortable naps, Lee calls this "hotting" as you are warm and cosy and have no special things to do or no work to go to, anyway whatever it is called it worked for me as I got up at nearly lunchtime feeling really relaxed and quite happy with the day.
In the meantime Lee had got up to look after the kids and they have gone off to Jim and Sarah's, when talking to Lee on the phone Sarah had asked how my check up went only to be met by tears from the other end of the phone as the question released some of the pent up emotion in Lee, she is feeling a bit better now and distracting herself by watching "The West Wing" under a blanket on the couch. I decided to get the MG out this afternoon and went for a little run just to keep the engine lubricated and to fill up with petrol, the weather forecast is for rain over the next two days before I may be on the way to the USA so this was the last chance for a while to get the car out and cleaned.
Google have taken over blog spot so I have had to transfer this blog over to their system (you should not notice any difference) and set up an account with them. You can see how some of these mega companies really do get everyone into their net, it seems this is not a good thing but I doubt if any country government is really capable of splitting up these monopolies. That would get me on to the need for a global government and we would be here for hours so we will not go down that rabbit hole.
Anyway my next job is to rewrite the short update section of the blog, delete cured add in relapse sort of thing, compose a note to my colleagues in work to let them know of the problem to see if anyone wants to help cover parts or all of my job, and then get into serious research on the stem cell treatment. I did discover a blog from a young man who had the treatment and survived so far for many years cancer free (http://www.davesite.com/hodgkins/mobil.shtml), he describes his feelings during the extreme chemo in the following words.
But I felt awful, and I was alive. I just had to find a way to kill the time.
I was scared, with all the antibiotics I was on. Then I realized, as long as I maintain homeostasis -- I'm not going anywhere. So I made a checklist in my head...
Am I breathing
Is my heart beating
Do I feel any real pain, or do I just feel like shit
Am I capable of telling someone I feel like shit
If those are true, I am alive. And I'm fighting.
And I knew I was going to make it.
So these kind of thoughts capture both the hope that I have (seems like a lot of folks are all right after the treatment) and the fear that I have (seems like this is going to to be really ugly on the way, which is weird as I feel 100 percent fine, and yet am going to have to subject myself to this horrible path even though I do not feel unwell at all). So I guess this is a small illustration of what I am thinking on the downside, however most of the time you just have to get on with the normal things of life. Monday I will go to work as usual, try to get my presentations and reports prepared for the meetings over the next week and chase up the hospital on the date for my scan. If I am very lucky (don't laugh I know, I know that's a stupid turn of phrase) then they may find the cancer in just in the one lymph node and direct radiotherapy may be a possibility, that would be my only way to avoid the ugly path. Lets keep the fingers crossed for that for now but I am preparing my head for the stem cell treatment as that is the most probable way forward.
Anyhow that's enough for today, I hope you all are enjoying the nice weather if you are in the UK or finishing up a happy thanksgiving if you are in the USA, soak it up and appreciate it because bad things can happen in life!
Cheers
Gerry
In the meantime Lee had got up to look after the kids and they have gone off to Jim and Sarah's, when talking to Lee on the phone Sarah had asked how my check up went only to be met by tears from the other end of the phone as the question released some of the pent up emotion in Lee, she is feeling a bit better now and distracting herself by watching "The West Wing" under a blanket on the couch. I decided to get the MG out this afternoon and went for a little run just to keep the engine lubricated and to fill up with petrol, the weather forecast is for rain over the next two days before I may be on the way to the USA so this was the last chance for a while to get the car out and cleaned.
Google have taken over blog spot so I have had to transfer this blog over to their system (you should not notice any difference) and set up an account with them. You can see how some of these mega companies really do get everyone into their net, it seems this is not a good thing but I doubt if any country government is really capable of splitting up these monopolies. That would get me on to the need for a global government and we would be here for hours so we will not go down that rabbit hole.
Anyway my next job is to rewrite the short update section of the blog, delete cured add in relapse sort of thing, compose a note to my colleagues in work to let them know of the problem to see if anyone wants to help cover parts or all of my job, and then get into serious research on the stem cell treatment. I did discover a blog from a young man who had the treatment and survived so far for many years cancer free (http://www.davesite.com/hodgkins/mobil.shtml), he describes his feelings during the extreme chemo in the following words.
But I felt awful, and I was alive. I just had to find a way to kill the time.
I was scared, with all the antibiotics I was on. Then I realized, as long as I maintain homeostasis -- I'm not going anywhere. So I made a checklist in my head...
Am I breathing
Is my heart beating
Do I feel any real pain, or do I just feel like shit
Am I capable of telling someone I feel like shit
If those are true, I am alive. And I'm fighting.
And I knew I was going to make it.
So these kind of thoughts capture both the hope that I have (seems like a lot of folks are all right after the treatment) and the fear that I have (seems like this is going to to be really ugly on the way, which is weird as I feel 100 percent fine, and yet am going to have to subject myself to this horrible path even though I do not feel unwell at all). So I guess this is a small illustration of what I am thinking on the downside, however most of the time you just have to get on with the normal things of life. Monday I will go to work as usual, try to get my presentations and reports prepared for the meetings over the next week and chase up the hospital on the date for my scan. If I am very lucky (don't laugh I know, I know that's a stupid turn of phrase) then they may find the cancer in just in the one lymph node and direct radiotherapy may be a possibility, that would be my only way to avoid the ugly path. Lets keep the fingers crossed for that for now but I am preparing my head for the stem cell treatment as that is the most probable way forward.
Anyhow that's enough for today, I hope you all are enjoying the nice weather if you are in the UK or finishing up a happy thanksgiving if you are in the USA, soak it up and appreciate it because bad things can happen in life!
Cheers
Gerry
Saturday, November 25, 2006
Two days in...denial, depression and bravado
Just got back from taking Poppy to Hockey practice almost exactly two days since my unexpected diagnosis of Hodgkins relapse. The very odd thing about this condition is that I feel perfectly fine (at least phisically) so I can jump out of bed get the Aston Martin out and go to Hockey just like all the other parents, if I felt inclined I could run round the park and be the sweaty picture of health I thought I was until thursday. So in many ways I dont want to take it easy or stop doing things as that just gives me more time to be distracted and think negative thoughts about the future.
So on Thursday I worked away at home talking to colleagues in Germany, as the US folks are all out on thanksgiving holidays these two days. On Friday I went into work as normal and actually sorted out a few problems with some tax and transfer price questions in China and managed to unblock a new supply agreement which will save the company a lot of money with some German colleagues. I sat back after that and a few meetings and thought "damm, damm, damm" because since I have been back, possibily due in part to the maturity brought on by the previous treatment, I have felt like I have been playing "at the top of my game" in work. Just as that starts to really show benefit and I was really enjoying being back - slam - back into the world of doctors, scans, worry and feeling crap. My friend Nick texted me and asked me if I had stopped thinking F*** every few minutes yet, in reality I think that will take a few weeks.
I had hoped to get a date for my PET scan on Friday but I did not hear from the hospital so I will chase them up on Monday. I hope to still make a business trip to the USA at the end of the week for about six days as I am presenting the outcome of a lot of work we have done over the last four months and it will give me the chance to work out a handover/cover plan for the next steps of the treatment with the leadership team who will all be in the USA at the same time. I also hope to make a day trip to New York on the Sunday for some Christmas shopping which would be a nice pre-treatment treat. However I will cut this short if the scanner is available of course but while I am waiting around I can wait in the USA (and be more distracted) just as well as moping around here before I am grounded for another six months at least.
Another strange thing about feeling fine is looking through the papers on the stem cell treatment and the other options and realising that although I look fine, and the next steps in treatment are great new inventions, the statistics are not anywhere near as good as before. Whats working in my favour is my age and general health but the treatment has significant risks if we end up in the stem cell replacement route so that is all pretty sobering. Then of course the only stastic that counts is my own, and that can be on either side of the line, so good attitude and fighting spirit are the only sensible options to stack the odds in my favour once again.
I do find myself walking around in a semi-daze from time to time, like time has somehow stopped, I think my head just wants to go back to the doctor and say " so that was the other guys notes right - you got me going there !", somehow no matter how much I think it, the reality does not change back to the previous "recoverd from cancer" status. What a pain in the but this is, really not a good way to make your day.
Good development is that the kids have taken things pretty well, I managed to tell them in a low key way that the doctors had "missed a bit" of the cancer and I would have to have some more treatment over the next few months. They reacted in the usual kids way of "OK dad" and then got back to their homework and arguing over eating sprouts or not for tea ! They continue to be a great source of normality as for them these days are just like the days last weekend and that helps me to move from hour to hour along with their normal routines and interests in who was evicted from the gameshow they like in the jungle.
So I guess we will be in limbo for a few weeks while scans and treatment plans are worked out, hopefully by the case meeting planned for the 11th of December we will know which path we are heading down and the rough timetable for the start of the treatment, till then I will keep the blog up to date with any appointments and test results as they become clear.
I will need to go back into my health oriented routine to build up my strength for the treatment but I think I will allow myself a few beers this weekend before diving into the green tea, exercise and diet preparations.
Well the leaves still need to be swept up in the garden cancer or no cancer, and its a nice sunny dry winter day, so I may as well make the best use of it !
Cheers
Gerry
So on Thursday I worked away at home talking to colleagues in Germany, as the US folks are all out on thanksgiving holidays these two days. On Friday I went into work as normal and actually sorted out a few problems with some tax and transfer price questions in China and managed to unblock a new supply agreement which will save the company a lot of money with some German colleagues. I sat back after that and a few meetings and thought "damm, damm, damm" because since I have been back, possibily due in part to the maturity brought on by the previous treatment, I have felt like I have been playing "at the top of my game" in work. Just as that starts to really show benefit and I was really enjoying being back - slam - back into the world of doctors, scans, worry and feeling crap. My friend Nick texted me and asked me if I had stopped thinking F*** every few minutes yet, in reality I think that will take a few weeks.
I had hoped to get a date for my PET scan on Friday but I did not hear from the hospital so I will chase them up on Monday. I hope to still make a business trip to the USA at the end of the week for about six days as I am presenting the outcome of a lot of work we have done over the last four months and it will give me the chance to work out a handover/cover plan for the next steps of the treatment with the leadership team who will all be in the USA at the same time. I also hope to make a day trip to New York on the Sunday for some Christmas shopping which would be a nice pre-treatment treat. However I will cut this short if the scanner is available of course but while I am waiting around I can wait in the USA (and be more distracted) just as well as moping around here before I am grounded for another six months at least.
Another strange thing about feeling fine is looking through the papers on the stem cell treatment and the other options and realising that although I look fine, and the next steps in treatment are great new inventions, the statistics are not anywhere near as good as before. Whats working in my favour is my age and general health but the treatment has significant risks if we end up in the stem cell replacement route so that is all pretty sobering. Then of course the only stastic that counts is my own, and that can be on either side of the line, so good attitude and fighting spirit are the only sensible options to stack the odds in my favour once again.
I do find myself walking around in a semi-daze from time to time, like time has somehow stopped, I think my head just wants to go back to the doctor and say " so that was the other guys notes right - you got me going there !", somehow no matter how much I think it, the reality does not change back to the previous "recoverd from cancer" status. What a pain in the but this is, really not a good way to make your day.
Good development is that the kids have taken things pretty well, I managed to tell them in a low key way that the doctors had "missed a bit" of the cancer and I would have to have some more treatment over the next few months. They reacted in the usual kids way of "OK dad" and then got back to their homework and arguing over eating sprouts or not for tea ! They continue to be a great source of normality as for them these days are just like the days last weekend and that helps me to move from hour to hour along with their normal routines and interests in who was evicted from the gameshow they like in the jungle.
So I guess we will be in limbo for a few weeks while scans and treatment plans are worked out, hopefully by the case meeting planned for the 11th of December we will know which path we are heading down and the rough timetable for the start of the treatment, till then I will keep the blog up to date with any appointments and test results as they become clear.
I will need to go back into my health oriented routine to build up my strength for the treatment but I think I will allow myself a few beers this weekend before diving into the green tea, exercise and diet preparations.
Well the leaves still need to be swept up in the garden cancer or no cancer, and its a nice sunny dry winter day, so I may as well make the best use of it !
Cheers
Gerry
Thursday, November 23, 2006
Back in the game
Well so much for the end of Gerryscancerdiary, today is the 23rd of November and at 9.15 today I met with Dr Yulle at the Western General Hospital only to hear her say "I am afraid its back" the words none of us want to hear specially so soon, this was my first full scan since the end of the treatment in August. So this morning has been a bit of a dazed muddle for me, I texted lee from the hospital and she met me back at the house, after a coffee and a cry we put our brave faces on and I started to call family and friends while she went to the Airport to pick up a visiting colleague. Now I have told mum, brothers and sister and some key folks at Gore I have got the story pretty straight in my head, so for thouse of you catching up here is the summary situation.
Originally my tumour was on the left side of my chest, the chemotherapy got most of it but they saw a small amount left behind so hit me with more chemotherapy and radiotherapy focussed on the tumour area. Normally this would be enough to eliminate the cancer completely, however in my case a piece of the cancer migrated from the left side to one of the nodes on the right side (hence ducking the radiotherapy) and has been growing since the chemo stopped some four months ago. So it seems like the rest of my body is cancer free, the orignal disease has been distroyed, but we have one lymph node on the right side of my chest which is showing signs of the disease ie is a tumour rather than a lymph gland. Bummer !
So next step is I need to get the very accurate PET scan done to see if the cancer cells are really contained in the one lymph node or if there is activity elsewhere. If it is contained in one lymph node then there is a chance that specific targeted radiotherapy in this region may be possible to distroy the cancer, as I had a lower dose last time I have some "margin" left which we can direct at the offending tumour, to add too much radiation to my system needs to be avoided as the chance of creating other cancers becomes significant in the longer term.
On the other hand if there is found to be active cells in other parts of the lymph system, and these have survived five months of the standard chemotherapy and are on the move again we may need to move things up a notch. This basically means going for a very severe chemotherapy which wipes out my immune system completely, essentially nearly killing me but not quite. Then having killed all the immune system cells, including the cancerous ones, they put back into my body stem cells which were previously harvested from my bone marrow which grow a new immune system for me while I live in a bubble to avoid infection. The dangers are that either I get an infection, which could be fatal as I have no immune system, or they harvest cancer cells along with the stem cells in which case both will grow back together ( this is less likly as this type of cancer is localised and does not spread eaisly to the bone marrow).
So all in all a pretty grim day for a thanksgiving holiday, at the moment my sensible head is in full control and pushing me to do all the necessary things to deal with life which of course continues ( I have just interrupted this to help holly with her maths homework for instance ). It seems like the PET scan will take a week or so and then the doctors will get together on the 11th of December to decide the treatment plan. Treatment is likely to start just before or just after Christmas and to last for a few months depending on the type of treatment.
For those of you who are not in regular contact we have made progress on some of the dreams and aspirations from the last generation of the blog. I did in the end buy my beautiful Aston Martin, I should work out a way to post a picture on the blog, we have nearly completed the roof conversion on the house the last windows are going in and the painter is working away on the rooms, we were hoping to spend the holiday sorting out all our stuff into the new rooms and furnishing the house so that it would be really comfortable for the future, lets hope we can still get that done and I have every chance to enjoy it during my recovery.
Well thats all for now, I guess its enough for anyones day, speak to you all as things unfold.
Cheers
Gerry
Originally my tumour was on the left side of my chest, the chemotherapy got most of it but they saw a small amount left behind so hit me with more chemotherapy and radiotherapy focussed on the tumour area. Normally this would be enough to eliminate the cancer completely, however in my case a piece of the cancer migrated from the left side to one of the nodes on the right side (hence ducking the radiotherapy) and has been growing since the chemo stopped some four months ago. So it seems like the rest of my body is cancer free, the orignal disease has been distroyed, but we have one lymph node on the right side of my chest which is showing signs of the disease ie is a tumour rather than a lymph gland. Bummer !
So next step is I need to get the very accurate PET scan done to see if the cancer cells are really contained in the one lymph node or if there is activity elsewhere. If it is contained in one lymph node then there is a chance that specific targeted radiotherapy in this region may be possible to distroy the cancer, as I had a lower dose last time I have some "margin" left which we can direct at the offending tumour, to add too much radiation to my system needs to be avoided as the chance of creating other cancers becomes significant in the longer term.
On the other hand if there is found to be active cells in other parts of the lymph system, and these have survived five months of the standard chemotherapy and are on the move again we may need to move things up a notch. This basically means going for a very severe chemotherapy which wipes out my immune system completely, essentially nearly killing me but not quite. Then having killed all the immune system cells, including the cancerous ones, they put back into my body stem cells which were previously harvested from my bone marrow which grow a new immune system for me while I live in a bubble to avoid infection. The dangers are that either I get an infection, which could be fatal as I have no immune system, or they harvest cancer cells along with the stem cells in which case both will grow back together ( this is less likly as this type of cancer is localised and does not spread eaisly to the bone marrow).
So all in all a pretty grim day for a thanksgiving holiday, at the moment my sensible head is in full control and pushing me to do all the necessary things to deal with life which of course continues ( I have just interrupted this to help holly with her maths homework for instance ). It seems like the PET scan will take a week or so and then the doctors will get together on the 11th of December to decide the treatment plan. Treatment is likely to start just before or just after Christmas and to last for a few months depending on the type of treatment.
For those of you who are not in regular contact we have made progress on some of the dreams and aspirations from the last generation of the blog. I did in the end buy my beautiful Aston Martin, I should work out a way to post a picture on the blog, we have nearly completed the roof conversion on the house the last windows are going in and the painter is working away on the rooms, we were hoping to spend the holiday sorting out all our stuff into the new rooms and furnishing the house so that it would be really comfortable for the future, lets hope we can still get that done and I have every chance to enjoy it during my recovery.
Well thats all for now, I guess its enough for anyones day, speak to you all as things unfold.
Cheers
Gerry
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