Yesterday I had the odd task of collecting my urine for 24hrs in a big container to establish a baseline for treatment, this led to the odd problem, for a man, of having to take your rucsack everywhere with you and specially to the toliet. As we went to some friends for the evening yesterday I had to bring my rucsack with me and drink a lot of water along with the two glasses of red wine I allowed myself.
The good news is that we went to see Dr Scott today and as we had specially booked the last appointment of the day we were able to have a long chat about the way forward and the latest results.
Most important result is that the disease is contained in the nodes and as far as they can tell the other signals from the thymus and the liver are false positives, which is a problem with PET scans. There are about six other prognostic factors which are used to determine probability of success of the treatment such as general fitness (+), time from last treatment (-), stage 3 rather than stage 4 (+), anemia (+), albulum level (+), physical symptoms (+) and type of Hodgkins (+). So in summary I am positive on five of the six prognostic factors at this stage and look to be in good shape for the treatment.
The next most critical thing is if the cancer responds to the new IVE chemo, if it does we are in pretty good shape, percentage wise 70%, compared to our current level of around 50% with the good factors above (these being disease free progression in five years time). After a long chat with the doctor where Lee and she exchanged views on cytokines and CD30 antibody activation, all over my head but this is the area Lee works in so they had a good discussion, I felt that they (a) really understood their stuff, and (b) the treatment plan was a very positive and balanced way forward. So, coming out of the consultation I felt much more positive than I have done for the last few weeks of waiting and I can feel my "fighting head" getting in control of things and starting to create positive energy for the treatment.
The first chemo treatment, given through the implanted Hickman line, is IVE ( Ifosfamide, VP16 Etoposide, Epirubicin ) the first one is a continuous infusion over 3 days, the second is two hours each day for three days and the last is a one shot deal on the first day. These are given with a mix of anti nausea, antibiotic, and kidney protecting drugs along the way so is a four to seven day hospital event. Then I go home to rest for two weeks trying very hard not to get infections as my neturophil counts plummet and I am vulnerable, even more than before, to the slightest infection.
There will be three cycles of this treatment, (three sets of three weeks) and within this treatment two critical things will happen.
1 I will get CAT and PET scans at the end of the second cycle, these need to show reduction of at least 50% in the mass of the disease to indicate it is reacting to the chemo and hence predict that the later chemo really will kill it, this is the single most important prognostic factor and either pushes the success probability up or makes it unlikely that the treatment will work.
2 I will get stem cells harvested from my blood at the end of chemo 2, this is usually straight forward for Hodgkin's patients but we need to get a certain amount of the stem cells to make the later treatment successful and a small minority of folks do not manage to "mobilise" the stem cells for reasons the doctors do not understand.
Total time for this stage, all going well, will be around 9 weeks or so from the 4th Jan.
Presuming that both of these things have gone well, and the signs today are pretty positive, (mind you we did say that before) then that will set me up for the heavy duty chemo to kill off the immune system completely and then the replacement stem cells will be put in to grow it all back, which should be some time around mid March or April and will be a month or more in hospital on close support, followed by a few months of recuperation. So if we are lucky some sense of health could be restored by about June - after which I will need a holiday!
So that's a plan and I feel pretty good about it, I now have a list of things to do while I still feel well enough to handle a drill and move furniture about the house, and another list of things to prepare for the hospital stay, phone, DVDs, pyjamas, books, supplements etc. From what I understand I will be hooked up to a chemo line 24 hrs a day and either be trying to be sick or being bored so the west wing and the sopranos will be some comfort on DVD when I am to tired to read. I will try to get a personal web enabled phone so I can stay in touch with blogs and emails in the hospital, I think chatting into phones is verboten, but quiet texting or email seems to be OK. I will need to work out how to get my home email from the remote if that is possible for us technically challenged folks.
We had a very nice christmas by the way, we went to Ireland to see my family, which was really nice and helped everyone set up for the next challenge, then we had a selfish quiet christmas with just us, presents, traditional dinner and falling asleep watching a movie. We had planned to visit Lee's mum and dad but her mum has the flu so I needed to steer clear of any chance of catching her flu. I had hoped to get her set up on the internet as I did with my mum when I was in Ireland so hopefully once the connections is finalised I will be able to chat to both homes on email and the blog.
So off for more nest building and sorting out of the house, I hope you all had a great Christmas and look forward to a very Happy New Year!
Cheers
Gerry
Thursday, December 28, 2006
Monday, December 18, 2006
Great reference site
Hi folks,
I found a great reference site/blog at http://www.cancerismybitch.com/ this guy keeps a list of survivor stories and blogs which has been very helpful to me as it reassures me that this is all very survivable and it prepares me for the experience buy giving me first hand accounts of what I will probably go through (although everyone is different).
On the preparation side you will probably not hear much on the blog for the next week or so as we are off to Ireland on Wednesday, back just in time for Christmas, then we have a Doctors appointment on the Thursday after Christmas to go through the treatment in depth with the transplant team. Following that we are probably going to scoot off for a few days in the MG and the Aston Martin to tour scotand and hopefully stay in nice hotels as we tour with the kids (hence the two cars as both are really two seaters).
Plan is to get the Hickman line put in on the 3rd start chemo either then or on the 4th which will be a hospital stay for me for a few days. Once the details are clear I will post them in the blog but that may be a few weeks away. In the meantime we are nest building, present buying, card writing, visiting relations and enjoying the holidays, I hope you all are too !
Cheers
Gerry
I found a great reference site/blog at http://www.cancerismybitch.com/ this guy keeps a list of survivor stories and blogs which has been very helpful to me as it reassures me that this is all very survivable and it prepares me for the experience buy giving me first hand accounts of what I will probably go through (although everyone is different).
On the preparation side you will probably not hear much on the blog for the next week or so as we are off to Ireland on Wednesday, back just in time for Christmas, then we have a Doctors appointment on the Thursday after Christmas to go through the treatment in depth with the transplant team. Following that we are probably going to scoot off for a few days in the MG and the Aston Martin to tour scotand and hopefully stay in nice hotels as we tour with the kids (hence the two cars as both are really two seaters).
Plan is to get the Hickman line put in on the 3rd start chemo either then or on the 4th which will be a hospital stay for me for a few days. Once the details are clear I will post them in the blog but that may be a few weeks away. In the meantime we are nest building, present buying, card writing, visiting relations and enjoying the holidays, I hope you all are too !
Cheers
Gerry
Thursday, December 14, 2006
Treatment Plan
Just a quick update on the medical consultations today, confirmed as feared the dive into stem cell therapy, with conditioning chemo.
This week and next I will have a series of tests on lung, heart and kidney function so that they team can judge how far they can push my chemo and establish base lines for those functions. Hickman line will be implanted between Christmas and New Year (direct line to the vein above my heart which dilutes the chemo so enabling high dosages and avoids damage at the point of injection). This will require regular visits to the hospital to keep it sterile and clear.
Chemo 1 of three preconditioning chemos will start on Jan 3rd, first day after new year here in Scotland, when they have a full crew on at the ward to deal with high dependency patients, each chemo cycle will be one week in hospital and two weeks recovery, there will be three cycles of this preparatory chemo, which will knock back the disease and get my stem cells into overdrive. In this case I will be very sick and then very vunerable to infection when I am at home. We have already developed a plan for me to have the bedroom/bathroom/study upstairs as a "controlled isolation zone" for my recuperation during the weeks at home to keep the interactions with the kids, and transmitted infections to a manageable level. Hopefully Poppy will be OK with that as she has her heart set on that bedroom.
At the end of Chemo 2 they will rescan to ensure that the disease is responding to the chemo properly (as it, or a clone of it, ducked AVBD chemo we need to make sure it is not resistant to this chemo). Presuming that the chemo is working, then the team will harvest stem cells from me at the end of chemo 2 and chemo 3 to set up for the deep chemo, which should be around mid-march depending on infections and response of my blood counts. During these chemos I am likely to need platlets, blood and antibiotics plus lots of medical support. This is a different world from the cruise of AVBD chemo.
I then go for the deep dive of the stem cell replacement therapy, this is six weeks in hospital with "industrial scale" chemo as the nice doctor Scott put it today. Basically this means that they will try to kill all my immune system, bone marrow and cancer while, just, helping my heart/kidneys and liver to survive. The good news is that they are pretty good at managing this balance, as hard as that may seem, and the doctor said today that they only lose 1% of the patients - which is great given the wobbly and near death situation of many of the patients is a really good record. So bottom line this treatment is going to be tough but its not likely to be fatal.
That was some of the good news, some of the not so good, or sobering news, was that the success of the treatment is totally eliminating the disease in the whole population that make it this far - is around 50% - for subsets of the population like the ones who are responsive to chemo and have the right prognostic factors (like I may have, depending on the results from London which are not yet available, and those in the Mayo study) then this rises, but we need to be realistic here this is a tough fight, and while its not likely to get me in the short term, there is some reasonable chance it, or complication of the treatment, may get me in the mid term. Clearly I am setting up for the fight here and have my mental light saber out and ready for the fight. Lee was quite funny today as she said that the only thing that worries her is that this is Gerry Mulligan vs Gerry Mulligan's immune system - in any fight of me against the world she would back me which is sweet.
So we have a plan, its all a bit sobering, but at the same time it is a plan and I can get my head around it, Lee and I came out of the hospital and decided to go to lunch, the strange thing is I am fine, symptomless and fit, so we had a really nice lunch (excellent Pinot Noir with pigeon) and just made it back in time for Holly, in fact I had to jog for half a mile up the road to catch her and I am supposed to be the sick one ! So after some nice wine I only had the energy to call Mum and Philip my brother before resorting to blogging and music, so far the Valkyries, Dexys and Dire Straights have made the list while I type the blog to keep you all updated.
Lee has poured me a nice Pinot, and is selecting the music as I type this, though I have cut in with a request for the Cowboy Junkies, we have had a deep heart to heart over lunch and have sorted out how we are going to handle things, both good or bad, this experience has continued to help me realise how much we are entertwined, and how deeply I love her. Just before she remembered as we were listening to some music, a lake we had been on in Germany and I interjected "Konigsee" as she had forgotten the name. I realised, and foolishly said, that I am the only person in the world who would know the answer to that question. As you might imagine that was "a moment" in our oscillation up and down in the emotional stakes. Now we are listening to Mozart, the Marriage of Figero, which I would not have come to appreciate without her. So we are having all sorts of mad thoughts of what to do prior to chemo start, we know we will go to Ireland to see my family, and to Aberdeen to see Lees family, but in between we may have a few indulgent days away taking the car up north with the kids and staying in some castle/spa for a few days before I dive into the vortex of treatment.
So kids are sitting doing their homework behind me, tea is cooking, Mozart is on the stereo, strangely I am chilled out now that I have a plan and that lee and I have agreed to sort out the practical details ahead of Jan 3rd, so I feel that "my back is covered" and I can concentrate on beating the disease - which I fully intend to do. In the meantime I recommend Mozart's clarinet concerto 2nd movement, remember Poppy plays the clarinet and it is a beautiful instrument.
Enough blogging for now, some real life to live as well, for the gap between now and then the best feeling I can use to describe it is the scene in the movie "the perfect storm" where they find themselves in the eye of the hurricane. Myself I would have dumped the fish and used the GPS to stay in the centre of the storm, George Cluney on the other hand did not take these precautions, so I have confidence that my more practical approach will lead to a better outcome. Oddly that scene has haunted me since the start of this adventure, I have often mentioned it to Lee, I guess I somehow knew that this would be a fight, and it will be a fight. The good news is that I think I have got my mind and head out of the zone of uncertainty and into the zone of facing the challenge ahead. In between I will try to combine being sensible in my build up and enjoying things as much as possible.
As I type Poppy is trying to organise her friends to come round for a pre end of term-disco pizza and dressing up, she is so excited about the whole event, which is really sweet.
So cheers for now, with a plan we are more comfortable and indulgent, I hope the world is good with you all, just now its fine for us, after 3rd Jan I will be in a different world where each day will count as a step forward.
Cheers
Gerry
This week and next I will have a series of tests on lung, heart and kidney function so that they team can judge how far they can push my chemo and establish base lines for those functions. Hickman line will be implanted between Christmas and New Year (direct line to the vein above my heart which dilutes the chemo so enabling high dosages and avoids damage at the point of injection). This will require regular visits to the hospital to keep it sterile and clear.
Chemo 1 of three preconditioning chemos will start on Jan 3rd, first day after new year here in Scotland, when they have a full crew on at the ward to deal with high dependency patients, each chemo cycle will be one week in hospital and two weeks recovery, there will be three cycles of this preparatory chemo, which will knock back the disease and get my stem cells into overdrive. In this case I will be very sick and then very vunerable to infection when I am at home. We have already developed a plan for me to have the bedroom/bathroom/study upstairs as a "controlled isolation zone" for my recuperation during the weeks at home to keep the interactions with the kids, and transmitted infections to a manageable level. Hopefully Poppy will be OK with that as she has her heart set on that bedroom.
At the end of Chemo 2 they will rescan to ensure that the disease is responding to the chemo properly (as it, or a clone of it, ducked AVBD chemo we need to make sure it is not resistant to this chemo). Presuming that the chemo is working, then the team will harvest stem cells from me at the end of chemo 2 and chemo 3 to set up for the deep chemo, which should be around mid-march depending on infections and response of my blood counts. During these chemos I am likely to need platlets, blood and antibiotics plus lots of medical support. This is a different world from the cruise of AVBD chemo.
I then go for the deep dive of the stem cell replacement therapy, this is six weeks in hospital with "industrial scale" chemo as the nice doctor Scott put it today. Basically this means that they will try to kill all my immune system, bone marrow and cancer while, just, helping my heart/kidneys and liver to survive. The good news is that they are pretty good at managing this balance, as hard as that may seem, and the doctor said today that they only lose 1% of the patients - which is great given the wobbly and near death situation of many of the patients is a really good record. So bottom line this treatment is going to be tough but its not likely to be fatal.
That was some of the good news, some of the not so good, or sobering news, was that the success of the treatment is totally eliminating the disease in the whole population that make it this far - is around 50% - for subsets of the population like the ones who are responsive to chemo and have the right prognostic factors (like I may have, depending on the results from London which are not yet available, and those in the Mayo study) then this rises, but we need to be realistic here this is a tough fight, and while its not likely to get me in the short term, there is some reasonable chance it, or complication of the treatment, may get me in the mid term. Clearly I am setting up for the fight here and have my mental light saber out and ready for the fight. Lee was quite funny today as she said that the only thing that worries her is that this is Gerry Mulligan vs Gerry Mulligan's immune system - in any fight of me against the world she would back me which is sweet.
So we have a plan, its all a bit sobering, but at the same time it is a plan and I can get my head around it, Lee and I came out of the hospital and decided to go to lunch, the strange thing is I am fine, symptomless and fit, so we had a really nice lunch (excellent Pinot Noir with pigeon) and just made it back in time for Holly, in fact I had to jog for half a mile up the road to catch her and I am supposed to be the sick one ! So after some nice wine I only had the energy to call Mum and Philip my brother before resorting to blogging and music, so far the Valkyries, Dexys and Dire Straights have made the list while I type the blog to keep you all updated.
Lee has poured me a nice Pinot, and is selecting the music as I type this, though I have cut in with a request for the Cowboy Junkies, we have had a deep heart to heart over lunch and have sorted out how we are going to handle things, both good or bad, this experience has continued to help me realise how much we are entertwined, and how deeply I love her. Just before she remembered as we were listening to some music, a lake we had been on in Germany and I interjected "Konigsee" as she had forgotten the name. I realised, and foolishly said, that I am the only person in the world who would know the answer to that question. As you might imagine that was "a moment" in our oscillation up and down in the emotional stakes. Now we are listening to Mozart, the Marriage of Figero, which I would not have come to appreciate without her. So we are having all sorts of mad thoughts of what to do prior to chemo start, we know we will go to Ireland to see my family, and to Aberdeen to see Lees family, but in between we may have a few indulgent days away taking the car up north with the kids and staying in some castle/spa for a few days before I dive into the vortex of treatment.
So kids are sitting doing their homework behind me, tea is cooking, Mozart is on the stereo, strangely I am chilled out now that I have a plan and that lee and I have agreed to sort out the practical details ahead of Jan 3rd, so I feel that "my back is covered" and I can concentrate on beating the disease - which I fully intend to do. In the meantime I recommend Mozart's clarinet concerto 2nd movement, remember Poppy plays the clarinet and it is a beautiful instrument.
Enough blogging for now, some real life to live as well, for the gap between now and then the best feeling I can use to describe it is the scene in the movie "the perfect storm" where they find themselves in the eye of the hurricane. Myself I would have dumped the fish and used the GPS to stay in the centre of the storm, George Cluney on the other hand did not take these precautions, so I have confidence that my more practical approach will lead to a better outcome. Oddly that scene has haunted me since the start of this adventure, I have often mentioned it to Lee, I guess I somehow knew that this would be a fight, and it will be a fight. The good news is that I think I have got my mind and head out of the zone of uncertainty and into the zone of facing the challenge ahead. In between I will try to combine being sensible in my build up and enjoying things as much as possible.
As I type Poppy is trying to organise her friends to come round for a pre end of term-disco pizza and dressing up, she is so excited about the whole event, which is really sweet.
So cheers for now, with a plan we are more comfortable and indulgent, I hope the world is good with you all, just now its fine for us, after 3rd Jan I will be in a different world where each day will count as a step forward.
Cheers
Gerry
Tuesday, December 12, 2006
Nest building in the phoney war
We are in a funny situation right now, I still feel fine, yet we know I am going to get this horrible treatment, at least that should be confirmed on Thursday. So I can still go to work, have a beer, go out to dinner, and do domestic stuff, until I get the next consultation and hopefully soon after a firm timetable for the treatment. The reason for the short delay is that the doctors wanted to check some more on the PET scan results around my liver and thymus with the real experts in London (if they are false positives, which is most likely, that is good, if they are real hot spots that is bad as it means the cancer is outside the lymph nodes). The additional reason is that the top haematology consultant in the cancer center, Dr Davis, is in New York at a conference until tomorrow, lets hope he is learning about great new ways to deal with my situation.
So in the meantime I am concentrating on two fronts, getting rid of my job and sorting out the house ready for the next few months. I have made the big decision this time to cut the ties with work much more firmly than the last time, all I have read over the weekend has indicated that I am going to be very sick and will not have the mindspace to worry about work stuff - and I am a bit fussy about my work so I would try not to let people down. I found a good blog from a woman in the USA who when through the same treatment and blogged it pretty much day by day http://journeytobabeland.blogspot.com/ this and other similar blogs has helped me get my head around how sick I will be - and that once you bear it you can be all right. The other thing I found was a good summary of the medical side of the stem cell treatment on http://www.cigna.com/health/provider/medical/procedural/coverage_positions/medical/mm_0188_coveragepositioncriteria_stem_cell_transplant_hodgkins_disease.pdf
this is an insurance company webpage so it is a bit more negative on stats but has a good overview. Finally for those of you who like myself have been bombarded by stories of alternative cures, or causes for cancer the very well organised Quackwatch website is a source of apparently balanced information.
Given the focus needed to get the mental side of things right, and to be honest the difficulty I have had in trying to work over the last few weeks, I decided to talk to the leaders of the division yesterday and formally disengage from work for the next 5 or 6 months. They were super supportive as they have always been from the start and will now start a process to get someone else to do the elements of my job, so I do not need to worry about this dimension. At my suggestion when I return I will return to a different commitment - in fact we have a lot of really good strategy options and challenges which are just starting to emerge, and I would be well suited to those, so I think this is a good opportunity to take a break and make a bit of a change. I know I would worry about the job too much if they just held it open for me so I think this is a really good way for me to concentrate on the main task at hand. It will also challenge some colleagues to stretch into all or parts of my role which will be really good for them.
So my plan now is to take some vacation time up to the start of the treatment, apart from a few phone calls to help with the transition, and to concentrate on nest building, keeping fit, eating well and resting well ahead of the ordeal - I may have the odd night out with too much beer occasionally, as compared to the damage the chemo will do a night out will be a walk in the park.
On the nest building front we are getting the carpets fitted to the hall and the new rooms upstairs today and tomorrow, so I should be able to have my study with computers, phones, music and TV all set up over the weekend - this can be my retreat when I am well enough to be home and recuperating. I have about half of the West Wing and all of the Sopranos to fall back on for entertainment. On the spiritual side I have dug out my old Tai Chi manuals and videos along with some Chi gung exercises guides that lees mum gave me to start into a proper daily meditation routine. The new study has 10ft glass window along one side so is a great airy space for that sort of thing, with great light and connection to the sky.
Lee has also gone for the classic trick of finding the front room drab in comparison to the newly painted hall, study and kitchen so you guessed it we (ie the painter Graham) is starting on the front room tomorrow as well. So we all have been moving furniture all night, seems weird to be doing this and yet the doctors telling me I am really unwell, I still feel very few symptoms just a bit of discomfort from time to time in my chest. So its all a big rush up to Christmas and the presumed start of treatment just after, it will be good to get the timetable clear and the path fully confirmed.
Hopefully we will find out more about the treatment and the timing on Thursday, if it starts after Christmas we have a trip to Ireland planned just before Christmas and a nice Christmas in our newly sorted out home organising TVs, networks and stereos systems on my side, basically playing with the boys toys. Quite a few friends are around so I think we may have a pretty sociable time. However if the doctors say the slot is before Christmas we will just have to go with the flow I guess.
As always I will keep you all posted here.
Regards
Gerry
So in the meantime I am concentrating on two fronts, getting rid of my job and sorting out the house ready for the next few months. I have made the big decision this time to cut the ties with work much more firmly than the last time, all I have read over the weekend has indicated that I am going to be very sick and will not have the mindspace to worry about work stuff - and I am a bit fussy about my work so I would try not to let people down. I found a good blog from a woman in the USA who when through the same treatment and blogged it pretty much day by day http://journeytobabeland.blogspot.com/ this and other similar blogs has helped me get my head around how sick I will be - and that once you bear it you can be all right. The other thing I found was a good summary of the medical side of the stem cell treatment on http://www.cigna.com/health/provider/medical/procedural/coverage_positions/medical/mm_0188_coveragepositioncriteria_stem_cell_transplant_hodgkins_disease.pdf
this is an insurance company webpage so it is a bit more negative on stats but has a good overview. Finally for those of you who like myself have been bombarded by stories of alternative cures, or causes for cancer the very well organised Quackwatch website is a source of apparently balanced information.
Given the focus needed to get the mental side of things right, and to be honest the difficulty I have had in trying to work over the last few weeks, I decided to talk to the leaders of the division yesterday and formally disengage from work for the next 5 or 6 months. They were super supportive as they have always been from the start and will now start a process to get someone else to do the elements of my job, so I do not need to worry about this dimension. At my suggestion when I return I will return to a different commitment - in fact we have a lot of really good strategy options and challenges which are just starting to emerge, and I would be well suited to those, so I think this is a good opportunity to take a break and make a bit of a change. I know I would worry about the job too much if they just held it open for me so I think this is a really good way for me to concentrate on the main task at hand. It will also challenge some colleagues to stretch into all or parts of my role which will be really good for them.
So my plan now is to take some vacation time up to the start of the treatment, apart from a few phone calls to help with the transition, and to concentrate on nest building, keeping fit, eating well and resting well ahead of the ordeal - I may have the odd night out with too much beer occasionally, as compared to the damage the chemo will do a night out will be a walk in the park.
On the nest building front we are getting the carpets fitted to the hall and the new rooms upstairs today and tomorrow, so I should be able to have my study with computers, phones, music and TV all set up over the weekend - this can be my retreat when I am well enough to be home and recuperating. I have about half of the West Wing and all of the Sopranos to fall back on for entertainment. On the spiritual side I have dug out my old Tai Chi manuals and videos along with some Chi gung exercises guides that lees mum gave me to start into a proper daily meditation routine. The new study has 10ft glass window along one side so is a great airy space for that sort of thing, with great light and connection to the sky.
Lee has also gone for the classic trick of finding the front room drab in comparison to the newly painted hall, study and kitchen so you guessed it we (ie the painter Graham) is starting on the front room tomorrow as well. So we all have been moving furniture all night, seems weird to be doing this and yet the doctors telling me I am really unwell, I still feel very few symptoms just a bit of discomfort from time to time in my chest. So its all a big rush up to Christmas and the presumed start of treatment just after, it will be good to get the timetable clear and the path fully confirmed.
Hopefully we will find out more about the treatment and the timing on Thursday, if it starts after Christmas we have a trip to Ireland planned just before Christmas and a nice Christmas in our newly sorted out home organising TVs, networks and stereos systems on my side, basically playing with the boys toys. Quite a few friends are around so I think we may have a pretty sociable time. However if the doctors say the slot is before Christmas we will just have to go with the flow I guess.
As always I will keep you all posted here.
Regards
Gerry
Friday, December 08, 2006
Getting it back together
After continuing the tone of the previous blog, by taking a day off and hiding under the duvet for a few hours this morning I eventually kicked myself out of bed and walked to the doctors to organise a sick note and discuss support over the next few months. That was the start of the turning point in my mood, the sky was blue and the folks in the park were jogging or strolling around, I stopped for a coffee and the girl in the kiosk was really pleasant asking me how I was (non-committal reply from me) and what I had on for the day. It cheered up my mood greatly so I walked back had lunch and set to sorting out the house, getting my cancer books and audio tapes out, buying vitamins and minerals to restart my diet, and generally starting to get organised.
By the time it came to pick up the kids from school I was in good form again and the bleakness of yesterday was beginning to fade. I had to take poppy to the shop to get a new top for her friend Lucy's disco, which is taking place now in the church hall beside our house, I wandered over with the digital camera and in the background now I am downloading the shots to email to Jim and Sarah. Poppy and Holly are enjoying the fun, going to a disco with boys is a cause for lots of gossip for Poppy at her sleepover tonight. I stayed only for a little while as I did not want to cramp her style too much by hanging around.
In between times I have had a good chat with my other friend Jim and the boys rugby watching group will be getting together this week for a pint before I am chemoed, my two brothers came on at the same time and we had a good chat about the treatment, Philip seems to have done even more research than me at the moment. So overall moods are lifting, social and family teams are reconfiguring into the great supportive mode we had before, and I am getting my own head around the challenge while still having fun. So things are looking up and we have a nice weekend of events to look forward to including a night out with our friends Nick and Bernise so that might be a a bit of an evening !
As an update I have found some research from the Mayo center in the USA which is claiming a 90 percent successful outcome as long as the disease recurrs in the lymph nodes, which we think mine has, and its within 12 months of the end of the previous treatment which mine is ! Those are odds I can deal with and are actually pretty similiar to those I faced the first time around. The downside is the fatal rate is about 6% so its a kind of russian roulette situation with a lot more chambers in the gun. Mind you to put this in perspective I am sure the deal for open heart bypass surgery is pretty close, so its a major procedure, and it can go wrong, but the odds are on my side still in comparison to many other poor souls who have cancers which are much more difficult to treat, medical advances are a great thing !
So that leaves me in a positive mood, with good hope for the future and the desire to enjoy things over the next few weeks ahead of the deep dive into chemo.
Holly and Collette are tucked up in the living room, sleeping for the night in a den Holly has made for them of blankets, bookcases and sofa backs - camping with central heating - and I just opened a nice card from Jim and Sarah, Collettes parents, who are hosting the other girls and thinking of me. Respect to you guys as you have to deal with beautiful and innocent Collettes problem with Crohns disease, and yet you think of us, its great to have such good friends.
Kids taking their first steps to adulthood, cats and younger kids curled up in the front room, good wishes and good chat with friends and brothers, and 90 percent from the mayo clinic - not quite a Lou Reed perfect day, but good enough for me.
Cheers
Gerry
By the time it came to pick up the kids from school I was in good form again and the bleakness of yesterday was beginning to fade. I had to take poppy to the shop to get a new top for her friend Lucy's disco, which is taking place now in the church hall beside our house, I wandered over with the digital camera and in the background now I am downloading the shots to email to Jim and Sarah. Poppy and Holly are enjoying the fun, going to a disco with boys is a cause for lots of gossip for Poppy at her sleepover tonight. I stayed only for a little while as I did not want to cramp her style too much by hanging around.
In between times I have had a good chat with my other friend Jim and the boys rugby watching group will be getting together this week for a pint before I am chemoed, my two brothers came on at the same time and we had a good chat about the treatment, Philip seems to have done even more research than me at the moment. So overall moods are lifting, social and family teams are reconfiguring into the great supportive mode we had before, and I am getting my own head around the challenge while still having fun. So things are looking up and we have a nice weekend of events to look forward to including a night out with our friends Nick and Bernise so that might be a a bit of an evening !
As an update I have found some research from the Mayo center in the USA which is claiming a 90 percent successful outcome as long as the disease recurrs in the lymph nodes, which we think mine has, and its within 12 months of the end of the previous treatment which mine is ! Those are odds I can deal with and are actually pretty similiar to those I faced the first time around. The downside is the fatal rate is about 6% so its a kind of russian roulette situation with a lot more chambers in the gun. Mind you to put this in perspective I am sure the deal for open heart bypass surgery is pretty close, so its a major procedure, and it can go wrong, but the odds are on my side still in comparison to many other poor souls who have cancers which are much more difficult to treat, medical advances are a great thing !
So that leaves me in a positive mood, with good hope for the future and the desire to enjoy things over the next few weeks ahead of the deep dive into chemo.
Holly and Collette are tucked up in the living room, sleeping for the night in a den Holly has made for them of blankets, bookcases and sofa backs - camping with central heating - and I just opened a nice card from Jim and Sarah, Collettes parents, who are hosting the other girls and thinking of me. Respect to you guys as you have to deal with beautiful and innocent Collettes problem with Crohns disease, and yet you think of us, its great to have such good friends.
Kids taking their first steps to adulthood, cats and younger kids curled up in the front room, good wishes and good chat with friends and brothers, and 90 percent from the mayo clinic - not quite a Lou Reed perfect day, but good enough for me.
Cheers
Gerry
Thursday, December 07, 2006
Non medical update
I am not sure if I will post this entry, perhaps I will just keep it in draft form, but I want to write it anyway as it helps me think and rationalise my situation, and in some way this may be a record of my thoughts and feelings that Poppy and Holly can at some time in the future access and help them understand this time in our lives.
Today was a difficult day on many fronts.
Firstly the doctors information was not good at all, in reality they found the disease has beaten the AVBD chemo and got outside the radiotherapy zone pretty quickly, so that some of it missed the radiation. Having "escaped" it has grown aggressively, not passively, the new main tumour is already half the size of the original, now dead tumour, and the disease has spread to multiple other nodes. My consultant, the very competent Dr Yulle, who previously was a very positive and cheerful person, was almost depressed, because if the field had been a bit wider she might have got it, but we took those decisions together and I spent a lot of the time in the consultation telling her I understood the risks, and the percentages and we could not have foreseen this outcome, in fact looking at the charts with her she would have missed even with the higher field.
The key thing is the radiation missed, the disease beat the chemo, and we really have to go after it now with all guns blazing. I think she hoped that it would be in one place, and she could get it with radiotherapy, and save the day, but I could see today that the negative consequences of that would be too high, and the technical complexity did not look good, and even then it may jump to the next nodes, so I would be back to the same position in six months time, which even I would find a bit tedious.
One thing that was helpful was that Lee was with me this time, in the past I have gone myself but she wanted to understand this more serious situation in a greater depth, so we went together, I got her to drive the Aston Martin over so that she would get used to driving it, which seemed to work well. As we walked down the road afterwards we were both a bit upset, understandably, and we were talking about the doctor and the different type of lymph cells when she stopped the conversation and said "this is not helping is it?" and I said "no" so she stopped me analysing gave me a big hug and helped me switch focused on how to manage and cope with the path forward. This was another example for me of how personal coping strategy's are, and how difficult it is for Lee, who has to cope with equally significant emotional challenges. My way (like in this blog) is to focus on what needs to get done, no regrets, no feeling of unfairness, no complaining about the doctors, no what if, no if only - because selfishly that is what works for me - but its not what works for other people necessarily. So I need to be careful of that and be supportive of Lee and other family members so that their needs for coping are also met so that they do not have to take too much of the strain.
This evening was a really tough one, the kids had their school Christmas concert, for their school this means taking over the Usher hall for the night, one of the main concert venues for the city, and they put on a fantastic show. The three of us went out for an Italian dinner while Lee was battling her way back from a meeting in Glasgow, half way through the starters Holly asked "Dad did you say your cancer was back?" so that was the opening I needed, we had a great chat about how it was back, which I had told them a few weeks ago in a low key way, and how I would need to get some more different chemo to sort it out. I told them that type of chemo would need some time in hospital, and it would take until about Easter, as before they both seemed fine with that and we got down to eating our pizzas before going to the show.
The show however hit a nerve, when 400 kids including Poppy and Holly started to sing "have your self a very merry Christmas..." I was standing the the middle of this thankfully dark concert hall, with tears coming to my eyes (Lees as well), I hope no one noticed, but even now it brings a lump to my throat. The thing is that if I think about the possibility of missing the kids grow older I feel really sad because I think, perhaps we all think, that I could help them a lot to find their place in the world and I would like to see them be happy. So that is going to be part of my new motivation strategy - Christmas with Lee, Poppy and Holly, next year, then one year at a time for hopefully a long time after that.
So I need to start to build up the reserves of strength that I will need for this next fight, getting fit physically is part of it, diet is part of it (but being moderate as we do not want to stimulate the cancer to grow faster), but most of it is getting my fighting head on mentally so I can get myself prepared for the worst, in a kind of "bring it on" mentality, then when I feel bad in the middle of the chemo, but I can still smile or make a joke (which I have never been any good at so maybe that's not a good part of the plan) then each smile will be a victory and a part of the path to recovery. It was this type of attitude that helped me through the previous chemo and I skipped before one chemo with bad results, so this mental strength is what I need to build up next. This evening when I came out of the concert I had a number of messages from family and friends but I did not feel up to answering them, perhaps tomorrow I will get it back together.
So this was not one of my upbeat posts, my old friend Brid once said I was a bit like Pollyanna, which I think meant so optimistic that it was not real, and to some extent I do not want to dump on the readers of this blog, quite a few of whom are colleagues as well as family members. But tonight I think it is OK to say this hurts, and its not easy, and it is the mortal dilemma that we all face as part of being human, we only have a short time on the stage of life and we never know when it will end. I could have all this trouble and be fine, while someone like Brids husband Cameron died in his early 40's with no warning at all. Its just random numbers.
So this is a late night blog, perhaps a dark night blog would be a better title, its been a difficult day for me and that's OK, its OK for some days to be difficult and for some songs to cause us to leak a bit in these circumstances.
However I was in a cafe, just after the hospital, and I phoned Mum to tell her the news - she was as always a rock of support, as she has always been since she would sit by my bed until I woke up after every operations I had after my accident that I can remember. I would always come round, often feeling very sick, and she would be there. She is a real hero of my lifes story. However as I finished the call the record changed and Van Morrison came on singing "sweet dreams of you, so real and so true.." I felt it was an omen and a good one at that.
I am an extrovert, I guess you can tell, and that means I get energy and strength from being open about my situation, I worry sometimes that this blog might be seem as a bit indulgent or attention seeking, I don't mean it that way, its just that typing this stuff out at night helps me get it "off my chest" and it saves me repeating the same story again and again to folks, or the phone ringing all the time for the same reason. In the end no one has to read it, and I do not expect anyone to read it, but for the next months I think I want to keep it as real as I have tried to do in the past, so I think I will probably post this blog rather than bury it in draft.
The good news is that I have been doing a bit of research on the up to date statistics on the treatment I will get next, and it is pretty good, and getting better by the year as the medical teams gain experience - 10 years ago this would be a much worse, like terminal, situation and it was this disease that killed my natural mother Pat in the 1960's despite the best efforts of her doctors. Today the success rate is very high, better than 60 percent including all the "last ditch" folks who are very ill before the treatment is attempted, so I have a great chance of getting through this, and when I do the disease free 10 year progression is back up in the 85 to 90 percentage - those are odds I can work with.
So today we have had some bad news, and leaked a bit, understandably, but this is a game we can play and win if I can get my "game head" on, so that is going to be my main focus from here on in, not work, or downsides, but winning the key game here. That will be my focus, along with smelling the roses, if you want to know what I mean listen to Coney Island by, of course, Van Morrision and remember I cycled along the roads he spoke of, in the sunshine of summer days when I was 15, on my granddad Malones old bike, painted yellow, sailed a dingy with my father on strangford loch and escaped to an island in the same place with my girlfriend when I was 18 so its a special place in the world, and in my heart.
To all of you, hug your children, listen to your partners, give your colleagues the benefit of genuine motivation and respect, don't honk your horn, wave instead, they probably just had a bad day, there is no time for trivial stuff, but stand up for what you believe to be true, as that is a measure of the weight of your personality, right or wrong, popular or unpopular.
Later blogs will look at how to get my head, fitness and diet together I think the first one is the most critical, for now let me sign off and please dont worry as a result of my directness, I will get a game head on, and we will beat this thing, but I hope it is OK to be honest about the bad days as well as the good days
Cheers
Gerry
Today was a difficult day on many fronts.
Firstly the doctors information was not good at all, in reality they found the disease has beaten the AVBD chemo and got outside the radiotherapy zone pretty quickly, so that some of it missed the radiation. Having "escaped" it has grown aggressively, not passively, the new main tumour is already half the size of the original, now dead tumour, and the disease has spread to multiple other nodes. My consultant, the very competent Dr Yulle, who previously was a very positive and cheerful person, was almost depressed, because if the field had been a bit wider she might have got it, but we took those decisions together and I spent a lot of the time in the consultation telling her I understood the risks, and the percentages and we could not have foreseen this outcome, in fact looking at the charts with her she would have missed even with the higher field.
The key thing is the radiation missed, the disease beat the chemo, and we really have to go after it now with all guns blazing. I think she hoped that it would be in one place, and she could get it with radiotherapy, and save the day, but I could see today that the negative consequences of that would be too high, and the technical complexity did not look good, and even then it may jump to the next nodes, so I would be back to the same position in six months time, which even I would find a bit tedious.
One thing that was helpful was that Lee was with me this time, in the past I have gone myself but she wanted to understand this more serious situation in a greater depth, so we went together, I got her to drive the Aston Martin over so that she would get used to driving it, which seemed to work well. As we walked down the road afterwards we were both a bit upset, understandably, and we were talking about the doctor and the different type of lymph cells when she stopped the conversation and said "this is not helping is it?" and I said "no" so she stopped me analysing gave me a big hug and helped me switch focused on how to manage and cope with the path forward. This was another example for me of how personal coping strategy's are, and how difficult it is for Lee, who has to cope with equally significant emotional challenges. My way (like in this blog) is to focus on what needs to get done, no regrets, no feeling of unfairness, no complaining about the doctors, no what if, no if only - because selfishly that is what works for me - but its not what works for other people necessarily. So I need to be careful of that and be supportive of Lee and other family members so that their needs for coping are also met so that they do not have to take too much of the strain.
This evening was a really tough one, the kids had their school Christmas concert, for their school this means taking over the Usher hall for the night, one of the main concert venues for the city, and they put on a fantastic show. The three of us went out for an Italian dinner while Lee was battling her way back from a meeting in Glasgow, half way through the starters Holly asked "Dad did you say your cancer was back?" so that was the opening I needed, we had a great chat about how it was back, which I had told them a few weeks ago in a low key way, and how I would need to get some more different chemo to sort it out. I told them that type of chemo would need some time in hospital, and it would take until about Easter, as before they both seemed fine with that and we got down to eating our pizzas before going to the show.
The show however hit a nerve, when 400 kids including Poppy and Holly started to sing "have your self a very merry Christmas..." I was standing the the middle of this thankfully dark concert hall, with tears coming to my eyes (Lees as well), I hope no one noticed, but even now it brings a lump to my throat. The thing is that if I think about the possibility of missing the kids grow older I feel really sad because I think, perhaps we all think, that I could help them a lot to find their place in the world and I would like to see them be happy. So that is going to be part of my new motivation strategy - Christmas with Lee, Poppy and Holly, next year, then one year at a time for hopefully a long time after that.
So I need to start to build up the reserves of strength that I will need for this next fight, getting fit physically is part of it, diet is part of it (but being moderate as we do not want to stimulate the cancer to grow faster), but most of it is getting my fighting head on mentally so I can get myself prepared for the worst, in a kind of "bring it on" mentality, then when I feel bad in the middle of the chemo, but I can still smile or make a joke (which I have never been any good at so maybe that's not a good part of the plan) then each smile will be a victory and a part of the path to recovery. It was this type of attitude that helped me through the previous chemo and I skipped before one chemo with bad results, so this mental strength is what I need to build up next. This evening when I came out of the concert I had a number of messages from family and friends but I did not feel up to answering them, perhaps tomorrow I will get it back together.
So this was not one of my upbeat posts, my old friend Brid once said I was a bit like Pollyanna, which I think meant so optimistic that it was not real, and to some extent I do not want to dump on the readers of this blog, quite a few of whom are colleagues as well as family members. But tonight I think it is OK to say this hurts, and its not easy, and it is the mortal dilemma that we all face as part of being human, we only have a short time on the stage of life and we never know when it will end. I could have all this trouble and be fine, while someone like Brids husband Cameron died in his early 40's with no warning at all. Its just random numbers.
So this is a late night blog, perhaps a dark night blog would be a better title, its been a difficult day for me and that's OK, its OK for some days to be difficult and for some songs to cause us to leak a bit in these circumstances.
However I was in a cafe, just after the hospital, and I phoned Mum to tell her the news - she was as always a rock of support, as she has always been since she would sit by my bed until I woke up after every operations I had after my accident that I can remember. I would always come round, often feeling very sick, and she would be there. She is a real hero of my lifes story. However as I finished the call the record changed and Van Morrison came on singing "sweet dreams of you, so real and so true.." I felt it was an omen and a good one at that.
I am an extrovert, I guess you can tell, and that means I get energy and strength from being open about my situation, I worry sometimes that this blog might be seem as a bit indulgent or attention seeking, I don't mean it that way, its just that typing this stuff out at night helps me get it "off my chest" and it saves me repeating the same story again and again to folks, or the phone ringing all the time for the same reason. In the end no one has to read it, and I do not expect anyone to read it, but for the next months I think I want to keep it as real as I have tried to do in the past, so I think I will probably post this blog rather than bury it in draft.
The good news is that I have been doing a bit of research on the up to date statistics on the treatment I will get next, and it is pretty good, and getting better by the year as the medical teams gain experience - 10 years ago this would be a much worse, like terminal, situation and it was this disease that killed my natural mother Pat in the 1960's despite the best efforts of her doctors. Today the success rate is very high, better than 60 percent including all the "last ditch" folks who are very ill before the treatment is attempted, so I have a great chance of getting through this, and when I do the disease free 10 year progression is back up in the 85 to 90 percentage - those are odds I can work with.
So today we have had some bad news, and leaked a bit, understandably, but this is a game we can play and win if I can get my "game head" on, so that is going to be my main focus from here on in, not work, or downsides, but winning the key game here. That will be my focus, along with smelling the roses, if you want to know what I mean listen to Coney Island by, of course, Van Morrision and remember I cycled along the roads he spoke of, in the sunshine of summer days when I was 15, on my granddad Malones old bike, painted yellow, sailed a dingy with my father on strangford loch and escaped to an island in the same place with my girlfriend when I was 18 so its a special place in the world, and in my heart.
To all of you, hug your children, listen to your partners, give your colleagues the benefit of genuine motivation and respect, don't honk your horn, wave instead, they probably just had a bad day, there is no time for trivial stuff, but stand up for what you believe to be true, as that is a measure of the weight of your personality, right or wrong, popular or unpopular.
Later blogs will look at how to get my head, fitness and diet together I think the first one is the most critical, for now let me sign off and please dont worry as a result of my directness, I will get a game head on, and we will beat this thing, but I hope it is OK to be honest about the bad days as well as the good days
Cheers
Gerry
Medical Update
Well I am going to try to keep this entry focussed on the medical stuff. The news is not good. The PET scan shows active disease in the enlarged node (which is now half as big as the orignal tumour) and small traces in multiple other glands up towards the top of my chest and neck. This seems to rule out any quick radiotherapy route for me. There is also a positive result below my chest near my liver but there is a fair chance that this may be a false positive picking up the small intestine - the UK PET experts in London are going to give a second opinion on that over the next few days. So its confirmed that the disease beat the AVBD chemo, got outside the radiotherapy zone before it was applied, and is growing agressivily now (although was killed in the original tumours). Simply extending the radiotherapy more broadly could just see the same thing happen again and starts to reach loadings which bring significant possibility of secondary cancers.
So it looks like the heavy chemo and stem cell route for me, I will meet with the chemo team next thursday to get a more intense briefing on the program but the outline so far is something like 2 cycles of chemo each of three weeks each requiring a week in hospital, somewhere in there they do the harvesting of the stem cells, followed by the actual stem cell replacement chemo which will put me in hospital in isolation for three further weeks and then some significant recovery period to follow. Roughly that feels like it will take me out completely for about four months from a work perspective from the start of the treatment but I will get the full details from the stem cell guys next thursday. It seems like as next thursday is already the 14th that the treatment may start just after christmas to allow for a nice christmas with the kids before we jump into the hospital cycles.
I am setting off now to do my background research on the treatment, the side effects, how to manage the side effects and how to set myself up mentally and phisically for the task. The good news is that this treatment is improving all the time and the doctors are pretty confident that they can get the disease with the treatment and that it is not likly to come back once they nail it properly this time. Lets hope they are right !
Once I have researched things a bit more I will get back to you with an enhanced overview.
Regards
Gerry
So it looks like the heavy chemo and stem cell route for me, I will meet with the chemo team next thursday to get a more intense briefing on the program but the outline so far is something like 2 cycles of chemo each of three weeks each requiring a week in hospital, somewhere in there they do the harvesting of the stem cells, followed by the actual stem cell replacement chemo which will put me in hospital in isolation for three further weeks and then some significant recovery period to follow. Roughly that feels like it will take me out completely for about four months from a work perspective from the start of the treatment but I will get the full details from the stem cell guys next thursday. It seems like as next thursday is already the 14th that the treatment may start just after christmas to allow for a nice christmas with the kids before we jump into the hospital cycles.
I am setting off now to do my background research on the treatment, the side effects, how to manage the side effects and how to set myself up mentally and phisically for the task. The good news is that this treatment is improving all the time and the doctors are pretty confident that they can get the disease with the treatment and that it is not likly to come back once they nail it properly this time. Lets hope they are right !
Once I have researched things a bit more I will get back to you with an enhanced overview.
Regards
Gerry
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