Tuesday, February 28, 2006
All quiet on the eastern front
This is a post from Lee, prior to going "over the top" tommorrow. The children are now in bed listening to Harry Potter and the half blood Prince and Gerry is engrossed in Lance Armstrong book getting himself into the zone for tommorrow. We got some really lovely letters today from the mothers which has cheered G a lot. I am waiting for a phone call from Jim and Sarah to tell me that my potion is ready. I borrowed their kitchen this evening (as we are still kitchenless) to concoct a potion known as eissac tea. This is a native American Indian derived formulation (used a lot in Canada) to help reduce the side-effects of chemotherapy. You can buy it here as Sheep's sorrel herbal complex with Indian Rhubarb, Burdock and Slippery Elm. It has been simmering on Jim and Sarah's cooker for the prescribed 4 hours and I will go and collect it shortly to decant into bottles for Gerry to enjoy!! tommorrow. When I left I have to admit it did look rather like the "poison" we used to make as kids using muddy water, nettles and old rose petals, I maybe have to work a little bit on the packaging and presentation.
Monday, February 27, 2006
Preparing for Chemotherapy
This next few days are taken up with getting ready to get the most out of the chemotherapy treatment which starts on Wednesday. Four main themes to the preparation are:
1 Boosting the immune system through good diet. The diet is basically vegan, no meat and milk lots of vegatables and fruit which reduces the toxic load on the body getting it in good shape to clear out the chemotherapy chemicals once they have done their job, I do allow myself one cup of coffee in the morning and the very occasional bit of cheese but other than that I have managed quite well, no wine or beer sadly for the duration now.
2 Specific supplements to help repair damage and manage side effects, I have adopted the well tried Bristol regium of antioxidants (vit C, E, B, Q10, selenium and zinc) and will use Essaic tea and slippery elm to manage the digestive complications which are expected. Anti nausia medication and sea bands will be deployed against the sickness.
2 Mental preparation, there are a lot of studies now that show a linkage between emotional orientation and success of chemotherapy. These have advanced to the level of understanding that dopamine generated by the brain can be shown to stimulate the level and activity of the immune system. Hence I am getting into exercises three times a day to focus and relax myself, it has the good side effect of reducing the fear of the treatment. Played at low volume repeat on my bedside CD the relaxation music has proved effective at minimising the amount of time spent awake in the middle of the night without disturbing Lee. I downloaded all these onto my Ipod to take to the hospital on Wednesday.
3 Light exercise, there seems to be a balance here where light exercise such as Tai Chi seems to be the most effective after treatment so I will sign up for some of the courses to brush up my technique as I am about 10 years out of practice. For now gentle jogging around the Medows park near my house once or twice a day is keeping up a reasonable level of fitness.
Hopefully all of these taken together will enable me to minimise the down time as a result of the chemotherapy treatment and more critically keep my white blood cell counts up during the treatments as if they drop too low then this can postpone or delay the next lot of chemotherapy.
Emotionally I am in good shape and the childeren are coping very well asking all sorts of questions about the chemotherapy, how the kidney and liver work to clean the blood etc on the way home from school today. Lee and I are heading out for a nice meal tonight to take advantage of my tastebuds still working properly for the last time in a few months, I am still hoping that she will take part in the webblog, we will see if she feels like it over the next weeks. Lee's friend Liz took her out for a few glasses of chardonny last night which was just the therapy needed for the moment.
Cheers
Gerry
1 Boosting the immune system through good diet. The diet is basically vegan, no meat and milk lots of vegatables and fruit which reduces the toxic load on the body getting it in good shape to clear out the chemotherapy chemicals once they have done their job, I do allow myself one cup of coffee in the morning and the very occasional bit of cheese but other than that I have managed quite well, no wine or beer sadly for the duration now.
2 Specific supplements to help repair damage and manage side effects, I have adopted the well tried Bristol regium of antioxidants (vit C, E, B, Q10, selenium and zinc) and will use Essaic tea and slippery elm to manage the digestive complications which are expected. Anti nausia medication and sea bands will be deployed against the sickness.
2 Mental preparation, there are a lot of studies now that show a linkage between emotional orientation and success of chemotherapy. These have advanced to the level of understanding that dopamine generated by the brain can be shown to stimulate the level and activity of the immune system. Hence I am getting into exercises three times a day to focus and relax myself, it has the good side effect of reducing the fear of the treatment. Played at low volume repeat on my bedside CD the relaxation music has proved effective at minimising the amount of time spent awake in the middle of the night without disturbing Lee. I downloaded all these onto my Ipod to take to the hospital on Wednesday.
3 Light exercise, there seems to be a balance here where light exercise such as Tai Chi seems to be the most effective after treatment so I will sign up for some of the courses to brush up my technique as I am about 10 years out of practice. For now gentle jogging around the Medows park near my house once or twice a day is keeping up a reasonable level of fitness.
Hopefully all of these taken together will enable me to minimise the down time as a result of the chemotherapy treatment and more critically keep my white blood cell counts up during the treatments as if they drop too low then this can postpone or delay the next lot of chemotherapy.
Emotionally I am in good shape and the childeren are coping very well asking all sorts of questions about the chemotherapy, how the kidney and liver work to clean the blood etc on the way home from school today. Lee and I are heading out for a nice meal tonight to take advantage of my tastebuds still working properly for the last time in a few months, I am still hoping that she will take part in the webblog, we will see if she feels like it over the next weeks. Lee's friend Liz took her out for a few glasses of chardonny last night which was just the therapy needed for the moment.
Cheers
Gerry
Saturday, February 25, 2006
Scotland Won !!
Sadly my cryptic style led some of you to think I was going to the Rugby in person rather than the more boring truth that I went to my friends house in Fife to watch it on TV like all the other punters. Really wish I had as it was a totally outstanding cliff hanger game which scotland won for about the first time in 6 years against England (sorry Jonathon).
Great afternoon all round with a lot of reassurance from John our friendly cancer specalist during the breaks in the match, and a good chat on the way to Fife and back with Andrew about life and early retirement (he is 62 and considering it).
Unfortunatly got back to Edinburgh late for dinner, but ended up in a very nice veg Indian resturant for dinner with my friend Julie, which will become a favourite I think if I can stand the taste after Wednesday. She is a scottish oil banker and was still recovering from the Oil Barons ball the previous night so entertained me with stories of that business and news of friends. She is part of my "take me out and talk about other things" support group along with Nick and Shaun and the two Jim's (hope the last few don't mind being elected on these pages!).
I took Poppy to hocky and football this morning and watched her run up and down with hair streaming behind her in the morning light while I listened to my relaxation tapes and practiced deep breathing. It continues to amaze me how peaceful and aware of things this situation has made me, lots of silver linings on the cloud.
All together an excellent Lou Reed /van Morrison kind of day.
Gerry
Great afternoon all round with a lot of reassurance from John our friendly cancer specalist during the breaks in the match, and a good chat on the way to Fife and back with Andrew about life and early retirement (he is 62 and considering it).
Unfortunatly got back to Edinburgh late for dinner, but ended up in a very nice veg Indian resturant for dinner with my friend Julie, which will become a favourite I think if I can stand the taste after Wednesday. She is a scottish oil banker and was still recovering from the Oil Barons ball the previous night so entertained me with stories of that business and news of friends. She is part of my "take me out and talk about other things" support group along with Nick and Shaun and the two Jim's (hope the last few don't mind being elected on these pages!).
I took Poppy to hocky and football this morning and watched her run up and down with hair streaming behind her in the morning light while I listened to my relaxation tapes and practiced deep breathing. It continues to amaze me how peaceful and aware of things this situation has made me, lots of silver linings on the cloud.
All together an excellent Lou Reed /van Morrison kind of day.
Gerry
Friday, February 24, 2006
Hollys reaction
My daughter Holly (7) seems to have got a pragmatic streak from somewhere, we told her about Hodgkins after tea this week, Lee was worried how she would take it. First question "can I catch it" answer from me "no" then we got " that's OK then" from Holly.
Two days later she asked Lee what we would do for food if I did not travel to get money (my stock answer when she complained about my travel) now she is reassured we can eat, and she will not get it, so back to negoiation over how many spoons of vegetable she has to eat to get her sweet. Perfect... in a funny way.
Signed up for the experiemental trial today at the hospital, the nurse missed the vien and I ended up with matching sets on each arm. I had some time to kill so visited the cancer support Maggies centre which was great, light and airy with really good libary and volunteers so I may sign up for Tia Chi classes and some other courses. After some work conference calls in the early afternoon we, more emotionally, visited lawyers with Lee to take care of all the worst case stuff which was a bit sobering, but good to get out of the way.
Off to watch the Rugby tomorrow with the semi retired Prof of cancer research in Edinburgh, John is an old friend, and this is a regular fixture, but I will shamelessly trade insight for belgian beer and we will both enjoy the deal. Then looking forward to a good curry which I love but apparently will not like for a few months. Sunday to Wednesday will be detox in preparation for chemo so I will need to be good.
Dot sent me sea bands for the nausea, her experience as a cancer nurse is proving very valuable to prepare us for the first day on wednesday.
By for now
Gerry
Two days later she asked Lee what we would do for food if I did not travel to get money (my stock answer when she complained about my travel) now she is reassured we can eat, and she will not get it, so back to negoiation over how many spoons of vegetable she has to eat to get her sweet. Perfect... in a funny way.
Signed up for the experiemental trial today at the hospital, the nurse missed the vien and I ended up with matching sets on each arm. I had some time to kill so visited the cancer support Maggies centre which was great, light and airy with really good libary and volunteers so I may sign up for Tia Chi classes and some other courses. After some work conference calls in the early afternoon we, more emotionally, visited lawyers with Lee to take care of all the worst case stuff which was a bit sobering, but good to get out of the way.
Off to watch the Rugby tomorrow with the semi retired Prof of cancer research in Edinburgh, John is an old friend, and this is a regular fixture, but I will shamelessly trade insight for belgian beer and we will both enjoy the deal. Then looking forward to a good curry which I love but apparently will not like for a few months. Sunday to Wednesday will be detox in preparation for chemo so I will need to be good.
Dot sent me sea bands for the nausea, her experience as a cancer nurse is proving very valuable to prepare us for the first day on wednesday.
By for now
Gerry
Thursday, February 23, 2006
Chemotherapy schedule
Now I have a clear view of the chemotherapy dates, they are expected to be (depending on side effects)
1st March
15th March
29th March
12th April
26th April
10th May
It seems like I will feel like hell for two days or so following these days and sleep like a log for a further two days, then my condition will recover right up until the next shot, depending on side effects and infections.
That may help some of you understand when I might be able to talk to you and when it is best just to leave me alone. Any work calls that I want to take part in we will try to schedule just ahead of the next dose of chemo as I am likley to be at my best at this time.
At the end of this run of chemo then I will have a PET scan, if it is all clear I may be able to scamper off depending on the trial random selector, but most likely I will get a further set of chemo and radiotherapy which will take about another two months, dates to be confirmed later.
Cheers
Gerry
1st March
15th March
29th March
12th April
26th April
10th May
It seems like I will feel like hell for two days or so following these days and sleep like a log for a further two days, then my condition will recover right up until the next shot, depending on side effects and infections.
That may help some of you understand when I might be able to talk to you and when it is best just to leave me alone. Any work calls that I want to take part in we will try to schedule just ahead of the next dose of chemo as I am likley to be at my best at this time.
At the end of this run of chemo then I will have a PET scan, if it is all clear I may be able to scamper off depending on the trial random selector, but most likely I will get a further set of chemo and radiotherapy which will take about another two months, dates to be confirmed later.
Cheers
Gerry
Wednesday, February 22, 2006
Poppy's Post
My daughter Poppy wanted to post something so this is her space.
Helllo, I am Poppy. I am 10 years old and am turning 11 in July.I go to school in Edinburgh .
A few weeks ago I was off school with a bug, so my dad told me that he had to go down to a chemist in town. When we got to the chemist he started buying all of these medicins. When we got home he went running, so I ran upstairs after he had left to check inside the book that he was following. I looked at the title and in big letters at the front it said CANCER. So when dad came back I asked him about the book and he said it was just a diet he was following.
Then about a week later on 21 Feb he told me about the scan that he had that day. He said that they had found 2 tumers in his chest. I felt scared but not shocked because I had suspected something.There is a good part to all of this though , for his work my dad travels around the world but because of this he will not be travelling till the end of summer at least.
Helllo, I am Poppy. I am 10 years old and am turning 11 in July.I go to school in Edinburgh .
A few weeks ago I was off school with a bug, so my dad told me that he had to go down to a chemist in town. When we got to the chemist he started buying all of these medicins. When we got home he went running, so I ran upstairs after he had left to check inside the book that he was following. I looked at the title and in big letters at the front it said CANCER. So when dad came back I asked him about the book and he said it was just a diet he was following.
Then about a week later on 21 Feb he told me about the scan that he had that day. He said that they had found 2 tumers in his chest. I felt scared but not shocked because I had suspected something.There is a good part to all of this though , for his work my dad travels around the world but because of this he will not be travelling till the end of summer at least.
More about Hodgkins
Lots of you have been asking about Hodgkins disease and want to know more so this post gives you some of the background resources that can help you find out more.
The excellent www.cancerbacup.org.uk will have everything most of you would want to know about the disease and also about the AVBD chemotherapy which may be helpful for folks who will run into me over the next three months treatment http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Combinationregimes/ABVDregime. They produce a specific Hodgkins booklet which is very straightforward and readable.
A similar but more detailed overview can be found in the Lymphoma research webpage www.lrf.org.uk/en/1/infdispathod.html including staging and treatment options.
An academic review paper which looks at current (2003) research, staging, pro's and con's of various treatment options, research trials and chemo types including StanfordV, BEACOPP and AVBD can be found at www.asheducationbook.org/cgi/content/full/2003/1/225 this is a bit heavy going at the start but the overview of treatments is good. However if you are reading this as a sufferer be sure to talk about this with your consultants as a number of the trials did not work out as well as hoped and some results are improved for only specific stages and forms of the disease. For my early stage of the disease and first treatment AVBD is believed to be the gold standard.
In addition to the above there are a number of Hodgkins bulletin boards and Lymphoma information networks which can be helpful, alternative approaches and complementary approaches are covered well by Rosie Daniel in her books and information packs, but for Hodgkins specifically mainstream "nuke the bugger" approach is the way to go from my reading - with a sensible approach to diet and vitamen supplements to help heal and boost the immune system during and after chemo.
The excellent support at the Maggies Centres if you are affected by cancer in the UK is also worth looking into, here in Edinburgh they have a great centre.
By for today
The excellent www.cancerbacup.org.uk will have everything most of you would want to know about the disease and also about the AVBD chemotherapy which may be helpful for folks who will run into me over the next three months treatment http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Combinationregimes/ABVDregime. They produce a specific Hodgkins booklet which is very straightforward and readable.
A similar but more detailed overview can be found in the Lymphoma research webpage www.lrf.org.uk/en/1/infdispathod.html including staging and treatment options.
An academic review paper which looks at current (2003) research, staging, pro's and con's of various treatment options, research trials and chemo types including StanfordV, BEACOPP and AVBD can be found at www.asheducationbook.org/cgi/content/full/2003/1/225 this is a bit heavy going at the start but the overview of treatments is good. However if you are reading this as a sufferer be sure to talk about this with your consultants as a number of the trials did not work out as well as hoped and some results are improved for only specific stages and forms of the disease. For my early stage of the disease and first treatment AVBD is believed to be the gold standard.
In addition to the above there are a number of Hodgkins bulletin boards and Lymphoma information networks which can be helpful, alternative approaches and complementary approaches are covered well by Rosie Daniel in her books and information packs, but for Hodgkins specifically mainstream "nuke the bugger" approach is the way to go from my reading - with a sensible approach to diet and vitamen supplements to help heal and boost the immune system during and after chemo.
The excellent support at the Maggies Centres if you are affected by cancer in the UK is also worth looking into, here in Edinburgh they have a great centre.
By for today
Tuesday, February 21, 2006
Diagnosis Post
Hi Friends,
This blog is my attempt to keep you all updated on my battle with Hodgkins lymphoma so we can spend time on the phone talking about other more interesting things as I walk through my cancer journey.
The basics are straightforward I was finally diagnosed yesterday with Hodgkins Lymphoma normal type, which has affected a small number of my lymph nodes in the mediasteinal region of my chest, the enlargment is small the biggest being 4.5cm. Hence this is an early stage low grade version of the cancer.
I will begin treatment next wednesday which will be three months of ABVD chemo on a 15 day cycle, at that point my consultant Dr Mackie at the Western General hospital in Edinburgh will use PET scanning to determine if I need more chemo, radio or no further treatment. This seems to be the "gold standard" for treatment of this conditon.
In many ways I am lucky, the cancer was found by chance when I was being scanned for an aorta defect which killed my father a year or so ago and has killed many of our male relatives. So it has been found at an early stage and this type of cancer has a good chance of remission and long term freedom from the disease. Mind you these "herd" statistics are not really such a big deal as what happend to me individually can be on either side of the line so we will just have to see, but for now I am pretty positive and hopeful.
The last few weeks has been consumed with tests, telling folks and making arrangements to hand over my job to colleagues until September at least. Although I hear good and bad stories about people being able to work in part through the chemo treatment my job involves a lot of international travel (I lead a manufacturing team for Gore-tex(r) Fabric Globally) so I plan to work from home occasionally to keep in touch but not to push it to much or travel. In the end my body will dictate this rather than my aspirations. The good news is colleagues and leadership in the company have been great and super supportive, another good reason why W.L.Gore is the best company to work for in the UK two years in a row.
We have been overwhelmed by offers of support from friends family and colleagues many of who do not quite know what to say so I am including in here a few tips from other people who have been through this type of journey that may help you be supportive and understand some of our reactions.
1 We really appreciate the offers of help from the family and we will take these up in rotation to help us manage through the chemo reactions with support for myself, Lee and the running of the household. Do not worry if we do not take up the offers short term this is a long run thing and we want to keep some help in reserve.
2 Friends can really help by being as normal as possible, there will be times when I want to talk out the current situation with Hodgkins but there will also be times when I want to talk about anything else, gossip, argue about politics or economics, discuss kitchens or cars etc so that this disease does not dominate all of life and suck the fun out of it. So friends can help by taking us away from this thing for a few hours and being their normal selves with us together or separatly as we all need time away. Some days will be bad days and some things will get cancelled or be too much, but I still want to try to not put life on hold.
3 Colleagues can help by covering for me when I am gone, I really appreciate that this will mean a good deal more work for some and thank you for that but take care of yourselves. Keeping me lightly involved and asking advice from time to time is a way I can stay motivated and energised about the future, but which I can drop if the bad days happen without feeling I am letting you down.
All of you can help with positive energy, prayer, good thoughts in whatever way you feel works best, I will take help from any source, our connection to family and the community of friends and colleagues is a powerful well of positive energy for us extroverts keeping it connected will really help.
Thats all for today
Gerry
This blog is my attempt to keep you all updated on my battle with Hodgkins lymphoma so we can spend time on the phone talking about other more interesting things as I walk through my cancer journey.
The basics are straightforward I was finally diagnosed yesterday with Hodgkins Lymphoma normal type, which has affected a small number of my lymph nodes in the mediasteinal region of my chest, the enlargment is small the biggest being 4.5cm. Hence this is an early stage low grade version of the cancer.
I will begin treatment next wednesday which will be three months of ABVD chemo on a 15 day cycle, at that point my consultant Dr Mackie at the Western General hospital in Edinburgh will use PET scanning to determine if I need more chemo, radio or no further treatment. This seems to be the "gold standard" for treatment of this conditon.
In many ways I am lucky, the cancer was found by chance when I was being scanned for an aorta defect which killed my father a year or so ago and has killed many of our male relatives. So it has been found at an early stage and this type of cancer has a good chance of remission and long term freedom from the disease. Mind you these "herd" statistics are not really such a big deal as what happend to me individually can be on either side of the line so we will just have to see, but for now I am pretty positive and hopeful.
The last few weeks has been consumed with tests, telling folks and making arrangements to hand over my job to colleagues until September at least. Although I hear good and bad stories about people being able to work in part through the chemo treatment my job involves a lot of international travel (I lead a manufacturing team for Gore-tex(r) Fabric Globally) so I plan to work from home occasionally to keep in touch but not to push it to much or travel. In the end my body will dictate this rather than my aspirations. The good news is colleagues and leadership in the company have been great and super supportive, another good reason why W.L.Gore is the best company to work for in the UK two years in a row.
We have been overwhelmed by offers of support from friends family and colleagues many of who do not quite know what to say so I am including in here a few tips from other people who have been through this type of journey that may help you be supportive and understand some of our reactions.
1 We really appreciate the offers of help from the family and we will take these up in rotation to help us manage through the chemo reactions with support for myself, Lee and the running of the household. Do not worry if we do not take up the offers short term this is a long run thing and we want to keep some help in reserve.
2 Friends can really help by being as normal as possible, there will be times when I want to talk out the current situation with Hodgkins but there will also be times when I want to talk about anything else, gossip, argue about politics or economics, discuss kitchens or cars etc so that this disease does not dominate all of life and suck the fun out of it. So friends can help by taking us away from this thing for a few hours and being their normal selves with us together or separatly as we all need time away. Some days will be bad days and some things will get cancelled or be too much, but I still want to try to not put life on hold.
3 Colleagues can help by covering for me when I am gone, I really appreciate that this will mean a good deal more work for some and thank you for that but take care of yourselves. Keeping me lightly involved and asking advice from time to time is a way I can stay motivated and energised about the future, but which I can drop if the bad days happen without feeling I am letting you down.
All of you can help with positive energy, prayer, good thoughts in whatever way you feel works best, I will take help from any source, our connection to family and the community of friends and colleagues is a powerful well of positive energy for us extroverts keeping it connected will really help.
Thats all for today
Gerry
Subscribe to:
Posts (Atom)