I had read that the fatigue effect of the chemotherapy treatment was cumulative, but I had not really realised quite how much. Now two weeks after my last chemo treatment ( I really like saying my last chemo it has such a good sound ) I expected to be feeling well and on the road to recovery. Actually I am feeling well, in a general sense, but I have really lost a lot of energy, yesterday I sat on the couch and looked at some cups I should move into the kitchen for about 10 min before I could muster the energy to get up and do the dishes, and then went for a sleep afterwards !. This morning I made it out of bed fine at 7am, got the kids sent off to school, tidyed up the mess they created on the way, and found myself lying down for 10 min only to wake up at noon. That was after having gone to bed at 10pm the night before and sleeping soundly all night. The strange thing, which is why it is like jet lag, is that at any one specific time you can concentrate and appear to be pretty normal/recovered but the underlying energy level is very far short of normal. All of which is fine, it does not hurt, and the body needs it to recover but it does cause me to be cross with myself until I remind myself that its OK to take time to get my strength back. I managed to get to work twice in the last week both for half day meetings but once again as soon as I got home I was out like a light.
This week Lee is off to Oslo for her big lecture/conference where she is one of the keynote speakers, she always gets pretty wound up ahead of these events and then pulls of a good show in the end. I heard from her today and the lecture she gave seems to have gone down very well so she can relax and enjoy the boat tour of the fyjords this evening. Its kind of a role reversal for us as I have the kids at home and she is off on business !
The good news in the post today is that I have my CAT scan to set up the targeting for the radiotherapy on Thursday and then I get set up on a simulator for the treatment starting on the 18th of July, treatment will run until around about the 1st of August so as my fatigue from the chemo wears off the fatigue from the radiotherapy should start to kick in, Mr Sleepy head is probably with me until mid August. It seems like I should be able to go back to working full time at the plant around the 24th of August and be ready to travel again in time for a planned meeting on September the 12th in Germany. I am looking forward to getting back to normal life but I will miss some aspects of the time I have had at home - perhaps some reflection blogs will be written as I get nearer to the end of the treatment.
Holiday plans seem to be sorted out, in the gap before radiotherapy we will head up to Lee's parents house (some time next week) for a bit of camping in the forest followed by a few days with Jim and Sarah in a lodge they have for a week on the edge of Loch Rannoch, so that will give me fresh air, great family time, and a chance to detox. I will be at home for the next 3 weeks as I get my daily radiotherapy treatments and will be keeping up with emails and calls for that time. Then once the treatment is over I will take the girls over to Ireland to see the family and go with Mum up to her holiday house in Donegal for 10 days of computer free, phone free, stress free relaxation - Lee is running a big conference and public lecture event in Glasgow those two weeks so its best if we are out of the way and she can concentrate on the work she needs to do and join us later.
So there may be a break in the blog over the weeks we are away as internet connections are not reliable in those locations (July 5th to 15th and August 5th to 12th ). Otherwise I will try to keep you posted on the treatments, side effects are not expected to be as severe as those seen with chemo, the consultant said that I probably would not notice anything at the low doses they are using except a bit of fatigue. Lets hope she is right !
Time for my 1pm phone conference, cheers for now
Gerry
Tuesday, June 27, 2006
Friday, June 23, 2006
Updated summary
I updated the fast summary this evening after watching the football with the Jim's so if you are new to the blog this is the best way to get the overall picture. A plan was hatched to go round Iceland on motorbike which I agreed to as long as I was driving the support jeep and it did not clash with walleye camp next year in Canada. So it could be that three 40 something chaps are seen out on 50cc motorbike attempting to get their licenses next summer!
Looking out for the German and England games tomorrow and then Lee heads off for a few days to Oslo for a conference leaving me to manage the school lunches and pickups in between my sleeps (today from 11 am to 3pm out like a light!)
Positive vibes from Edinburgh (helped by two pints of 80bob beer)
Gerry
Looking out for the German and England games tomorrow and then Lee heads off for a few days to Oslo for a conference leaving me to manage the school lunches and pickups in between my sleeps (today from 11 am to 3pm out like a light!)
Positive vibes from Edinburgh (helped by two pints of 80bob beer)
Gerry
Thursday, June 22, 2006
Next phase - radioactive boy !
Today I had a long discussion with the consultants on the next steps for my treatment. At the core of this is the decision wether or not to have radiotherapy treatments. Fortunatly the USA Journal of Onocology has just published an editorial reveiw of this subject as it has been a "hot" topic over the last year in the expert community. In the end they have recommended that combined chemotherapy/radiotherapy using the moderen system and a dosage around 20-30Gy. After discussion today that is exactly what we have agreed to progress with as there are two critical facts which are pretty fresh (1) the disease free progression rates seem to be coming out as around 84% without and 93% with radiotherapy added, (2) the long term cancer risk historically was as high as 16% but modern treatments at lower dose are now showing no significant long term risk of fatal consequences (though there are a range of non fatal issues).
So overall the balance of risk, or the least worst option, is to proceed with the radiotherapy.
This means that I have two weeks now to recuperate from the chemotherapy, so that inflammation etc is stabilised and the radiotherapy will run from the 18th July through to about the 2nd of August. This is a daily treatment at the hospital so will consume a few hours per day getting there getting changed and getting back again. I will need to start to build up my physical fitness as well as my immune system over this time, the chemo is toxic to both heart and lung function so I get breathless even taking the shopping in from the car at the moment. The good news is that the danger from infection is not nearly as serious during radiotherapy and side effects are not expected to be too severe (just a bit of sleepyness). Once the radiotherapy is done then the treatment is finished !! So hopefully given about 2-3 weeks recovery time working part time from home I will graduate to full time working in the UK from about the last week in August and then be ready to travel again from around mid september. While it will be nice to see colleagues again I am not looking forward to seeing Heathrow, six months away has been a great break.
The follow up scans etc do not happen until about three months after the treatment has finished and then continue over the next five years pretty intensivily as the relapse rate is about one in ten, hopefully with the radiotherapy and my general fitness and risk profile I will be on the right side of that line. In any case the mean time to relapse is about 18 months so I will charge back into normal life in September and deal with any other outcome when and if it happens.
I plan to sit down with Lee tonight and try to organise a few weeks camping in Scotland and a visit to my mums house in Donegal for a week to get a proper break from computers and email in effect a proper summer holiday, with treatment and some conference committments we will have to squeeze this in as we can around the kids summer holidays and activities, but its nice to finally be able to make a plan.
Cheers
Gerry
So overall the balance of risk, or the least worst option, is to proceed with the radiotherapy.
This means that I have two weeks now to recuperate from the chemotherapy, so that inflammation etc is stabilised and the radiotherapy will run from the 18th July through to about the 2nd of August. This is a daily treatment at the hospital so will consume a few hours per day getting there getting changed and getting back again. I will need to start to build up my physical fitness as well as my immune system over this time, the chemo is toxic to both heart and lung function so I get breathless even taking the shopping in from the car at the moment. The good news is that the danger from infection is not nearly as serious during radiotherapy and side effects are not expected to be too severe (just a bit of sleepyness). Once the radiotherapy is done then the treatment is finished !! So hopefully given about 2-3 weeks recovery time working part time from home I will graduate to full time working in the UK from about the last week in August and then be ready to travel again from around mid september. While it will be nice to see colleagues again I am not looking forward to seeing Heathrow, six months away has been a great break.
The follow up scans etc do not happen until about three months after the treatment has finished and then continue over the next five years pretty intensivily as the relapse rate is about one in ten, hopefully with the radiotherapy and my general fitness and risk profile I will be on the right side of that line. In any case the mean time to relapse is about 18 months so I will charge back into normal life in September and deal with any other outcome when and if it happens.
I plan to sit down with Lee tonight and try to organise a few weeks camping in Scotland and a visit to my mums house in Donegal for a week to get a proper break from computers and email in effect a proper summer holiday, with treatment and some conference committments we will have to squeeze this in as we can around the kids summer holidays and activities, but its nice to finally be able to make a plan.
Cheers
Gerry
Tuesday, June 20, 2006
Radiotherapy here we come ?
Regular readers will have understood the debate we have been having about the application of radiotherapy following chemo 8. In preparation for the discussion with the consultants on Thursday I spent most of last night reading and downloading the most up to date papers on the subject, as much as to ensure I know the right questions to ask on thursday. Fortunatly for me there have been a number of significant studies published since Feb when I did my first research on the treatment. To cut a long story short the modern inverted field highly directed radiotherapy had much lower rates of cancer or heart damage than that seen in the past and it does seem to reduce the relapse rate of the disease by about 10 percent (ie with radiotherapy 90 percent disease free progression vs 80 percent or so for no radiotherapy) the secondary cancer risk seems to be about 2-3 percent so the net benefit is about 8 percent. Unfortunatly there is no 100 percent treatment option that I can tick ! There was a pretty definitive editorial paper in the US Journal of Onocology in March which brings this all together and basically says take the radiotherapy, so it seems like that may be the path. So the discussion on thursday will more be about doses, protection of vital organs, length of treatment etc rather than do we/don't we discussion I was originally expecting.
I shall spend tomorrow night looking into supporting strategies with diet etc to set myself up for going to hospital every day for the next month or so, and dealing with the side effects of the treatment. Apparently the big short term side effect is fatigue and the diet plans can help manage the damage to heart tissue. I think the most difficult thing for me will be the time taken each day going back and forward to the hospital, waiting around, getting the treatment etc. Better get a good book !
The downside of this is I will be stuck in Edinburgh during the school holidays and with daily hospital visits and the fatigue that will constrain what we can do with the time together as a family. Once I know the detials of the treatment plan I will let you all know.
Cheers
Gerry
I shall spend tomorrow night looking into supporting strategies with diet etc to set myself up for going to hospital every day for the next month or so, and dealing with the side effects of the treatment. Apparently the big short term side effect is fatigue and the diet plans can help manage the damage to heart tissue. I think the most difficult thing for me will be the time taken each day going back and forward to the hospital, waiting around, getting the treatment etc. Better get a good book !
The downside of this is I will be stuck in Edinburgh during the school holidays and with daily hospital visits and the fatigue that will constrain what we can do with the time together as a family. Once I know the detials of the treatment plan I will let you all know.
Cheers
Gerry
Monday, June 19, 2006
40 % Sick
Lee, as many of you may know is very much into taste and has to have her breakfast in bed with eggs done just in a certian way. I used to think she was just fussy but then when she correctly identified 8 out of 10 whiskies just by taste at a work event I began to realise she really has a sensitive palate. One of her ambitions is to get some proper wine tasting qualifications so that could be on the list for fun things to do after treatment.
Anyway along the same lines our new standing joke is that she prefers me at 40% sick or so. She has developed this theory having observed me somewhat hyper on steriods (120% of normal energy, totally unbearable), my normal restless self (100% needs to be distracted with projects, work and hobbies), on the chemo crash sleeping and feeling ill (60% sick, not looking too well) and on recovery from chemo (40% sick ). In the latter phase I am tired and not so full of energy so I am pliable, do not rush around doing "projects", let her read her book in peace, nap in the afternoon and have even been know to say "no thanks I am too tired". All in all she gets a peaceful life and finds me easy to live with as I am not Tiggering around. I am sure some colleagues can probably sympathise.
In this context my remaking the flower bed which was crushed by the rennovation of the stone wall has proceeded slowely since last week, with world cup football taking the major share of my relaxing time (easy to watch and you can sleep a bit to be woken by the goals). However yesterday for a few hours Holly and I worked away and it is now 50 percent done, with the weeding done by me and planting/watering done by Holly. She is very pleased with "Hollys garden" so we will need to find a matching Poppys garden so as to keep things balanced (and get some help with the weeding !).
After last weekends social whirl I had a very quiet weekend, as you can probably tell the chemo fatigue is cumulative to some extent so thursday and friday were mostly spent under the duvet sleeping. I did wake up for a few business calls but more or less went straight back to bed once they were done as I had no energy at all. Friday Lee had a "girls" night out while I watched USA play, and Saturday Poppy won a gold medal in the school sports day for relay running. In the evening both kids were on sleepovers so we had a quiet night in (ie me asleep Lee enjoying the peace and quiet) and a long peaceful lie in on Sunday morning.
I have regained some energy through Sunday but ducked out of my MG car run just in case I fell asleep on the way back from Boness where it was held. Today I am going to toddle into work for the afternoon to meet some colleagues, join a few phone calls and to take a friend Jeff from the USA out for an early curry.
Tomorrow I will be on the internet extending my research into the pros and cons of radiotherapy in time for my discussion with the consultants on Thursday. It seems that some of the modern techniques are much less likley to cause later cancers, and the radiotherapy may improve the chance of the Hodgkins reappearing, on the other hand, as the affected glands are around my heart the chance of later heart problems are increased, choices, choices. Anyhow I am trying my best to be open minded and get to the facts, so far it seems like a fair amount of judgement will be needed on Thursday. The good news is that I should have some idea of a timetable for treatment, holidays and return to work once I see the consultants that will help get me out of limbo and let me plan (you can see 20% sick me emerging !)
Thats all for now, I will let you all know what we conclude on Thursday and the timetable that results, hopefully we can build in holiday time and some time back in Ireland over the next few months.
Cheers
Gerry
Anyway along the same lines our new standing joke is that she prefers me at 40% sick or so. She has developed this theory having observed me somewhat hyper on steriods (120% of normal energy, totally unbearable), my normal restless self (100% needs to be distracted with projects, work and hobbies), on the chemo crash sleeping and feeling ill (60% sick, not looking too well) and on recovery from chemo (40% sick ). In the latter phase I am tired and not so full of energy so I am pliable, do not rush around doing "projects", let her read her book in peace, nap in the afternoon and have even been know to say "no thanks I am too tired". All in all she gets a peaceful life and finds me easy to live with as I am not Tiggering around. I am sure some colleagues can probably sympathise.
In this context my remaking the flower bed which was crushed by the rennovation of the stone wall has proceeded slowely since last week, with world cup football taking the major share of my relaxing time (easy to watch and you can sleep a bit to be woken by the goals). However yesterday for a few hours Holly and I worked away and it is now 50 percent done, with the weeding done by me and planting/watering done by Holly. She is very pleased with "Hollys garden" so we will need to find a matching Poppys garden so as to keep things balanced (and get some help with the weeding !).
After last weekends social whirl I had a very quiet weekend, as you can probably tell the chemo fatigue is cumulative to some extent so thursday and friday were mostly spent under the duvet sleeping. I did wake up for a few business calls but more or less went straight back to bed once they were done as I had no energy at all. Friday Lee had a "girls" night out while I watched USA play, and Saturday Poppy won a gold medal in the school sports day for relay running. In the evening both kids were on sleepovers so we had a quiet night in (ie me asleep Lee enjoying the peace and quiet) and a long peaceful lie in on Sunday morning.
I have regained some energy through Sunday but ducked out of my MG car run just in case I fell asleep on the way back from Boness where it was held. Today I am going to toddle into work for the afternoon to meet some colleagues, join a few phone calls and to take a friend Jeff from the USA out for an early curry.
Tomorrow I will be on the internet extending my research into the pros and cons of radiotherapy in time for my discussion with the consultants on Thursday. It seems that some of the modern techniques are much less likley to cause later cancers, and the radiotherapy may improve the chance of the Hodgkins reappearing, on the other hand, as the affected glands are around my heart the chance of later heart problems are increased, choices, choices. Anyhow I am trying my best to be open minded and get to the facts, so far it seems like a fair amount of judgement will be needed on Thursday. The good news is that I should have some idea of a timetable for treatment, holidays and return to work once I see the consultants that will help get me out of limbo and let me plan (you can see 20% sick me emerging !)
Thats all for now, I will let you all know what we conclude on Thursday and the timetable that results, hopefully we can build in holiday time and some time back in Ireland over the next few months.
Cheers
Gerry
Wednesday, June 14, 2006
Chemo 8 smooth run
Yesterday I went in for Chemo 8 and things were much better back to my old self, confidence was high, line went in fine, and the day passed in reasonable chat with the other patients. Some how in a busy ward with machine alarms going off regulariy it is hard to concentrate on a book so I have resorted to magazines and newspapers but pretty soon we drop into chatting with the other patients about their "story" it is amazing the folks you meet and the difficulties they are going through. Compared to most of them Hodgkins is a pretty easy run.
For the first time in my life I have been able to watch about half the world cup matches mostly because I am home and they are on at 5pm and 8pm UK time which is great. I am not normally a football fan but I am finding myself drawn in because I am at home, which is unusual, and I can get a chance to build up an idea of the form for the teams. So when I am feeling tired and naseaous then my sickness meds, a bottle of water and a football game are a reasonable retreat.
Most of this week is taken up with handing out pay rises (or not) on the phone, normally we would do these face to face but with my travel restrictions I am doing these on the phone, in 80% of cases its pretty happy news so this is a pretty nice part of the job. No big plans for this week just a flower bed to rebuild after the wall construction was finished in the garden and taking it easy as the chemo fatigue kicks in later in the week. My buddies in Eau Claire are all away on the fishing trip I had planned to go on (good news is Lee says I can go next year) so we may see some updates from them around Sunday when they get back and start to dry out. I am pretty jealous of them and disappointed not to be there.
However all is basically going well here the summer weather continues to lighten up our moods and once the radiotherapy decision is made next Thursday we can begin to plan for July and the school holidays.
Cheers
Gerry
For the first time in my life I have been able to watch about half the world cup matches mostly because I am home and they are on at 5pm and 8pm UK time which is great. I am not normally a football fan but I am finding myself drawn in because I am at home, which is unusual, and I can get a chance to build up an idea of the form for the teams. So when I am feeling tired and naseaous then my sickness meds, a bottle of water and a football game are a reasonable retreat.
Most of this week is taken up with handing out pay rises (or not) on the phone, normally we would do these face to face but with my travel restrictions I am doing these on the phone, in 80% of cases its pretty happy news so this is a pretty nice part of the job. No big plans for this week just a flower bed to rebuild after the wall construction was finished in the garden and taking it easy as the chemo fatigue kicks in later in the week. My buddies in Eau Claire are all away on the fishing trip I had planned to go on (good news is Lee says I can go next year) so we may see some updates from them around Sunday when they get back and start to dry out. I am pretty jealous of them and disappointed not to be there.
However all is basically going well here the summer weather continues to lighten up our moods and once the radiotherapy decision is made next Thursday we can begin to plan for July and the school holidays.
Cheers
Gerry
Sunday, June 11, 2006
Footballs coming home ?
Just writing this after a very jolly weekend which passed incredibly quickly. Events started when our friend Ken called on friday early evening while lee was still in work, just as the first game was about to kick off, so we had a chat about his news inbetween goals and near goals. The Lee arrived so I set off to get more wine to feul Lee and Kens follow up discussion from the shop across the road. I had just heard that Saturday was to be the hottest day of the year so when I ran into Jim in the shop I boldy declared open house for the England game and a barbque for the evening. Called into Jim and Sarahs on the way home to invite them and phoned Nick and Bernise.
So to cut a long story short we had five of "the boys" round for the match and then a barbie with wives, their childeren, other childern (some of whom were on sleepovers at other houses) etc etc. At one point we had about 16 folks running around, eating, drinking, cycling, making tents, playing music and other jolly stuff in our house and garden. We sat out until about 11pm and the last of the folks left aroun 1.30am (taking one of our childern but we had another left behind so we were all square on headcount by the end !). Thankfully the majority of the evening was in the open air so there was not much chance of infection and I stayed well away from the childern to minimise my risks, so the various other dads got to break up arguements or swing little ones by their ankles !
In the middle of all this I offered my services as a crewmember on Kens boat for the "commodores race" the next day, Sunday, so at 11.30 I headed off and had a fine day sailing on the Forth with Ken and his daughter Robin (7 yrs) not gettting back until 8pm. So now I am a bit suntanned despite hat and factor 30 suncream, I have managed to get the kids to bed, lee is watching a rerun of her favourite TV program and I am off to bed happy and very tired.
In one funny moment I forgot my growth factor injection so we turned back and I had to run into the house and pick it up on the way to the boat, so my growth factor was injected parked in the street while Ken went to the bank! Does cause a few funny looks from people walking by.
Tomorrow is the day for getting back into the zone hopefully for my last chemo on Tuesday, I will take care with the preparations this time to try to avoid the problems we seen last time. Even tonight I am loading my meditation CD into the bedside player to start to get me back in the right mood for the chemo and the sore bones which will start tomorrow or tonight.
So off to bed tired and happy
Cheers
Gerry
So to cut a long story short we had five of "the boys" round for the match and then a barbie with wives, their childeren, other childern (some of whom were on sleepovers at other houses) etc etc. At one point we had about 16 folks running around, eating, drinking, cycling, making tents, playing music and other jolly stuff in our house and garden. We sat out until about 11pm and the last of the folks left aroun 1.30am (taking one of our childern but we had another left behind so we were all square on headcount by the end !). Thankfully the majority of the evening was in the open air so there was not much chance of infection and I stayed well away from the childern to minimise my risks, so the various other dads got to break up arguements or swing little ones by their ankles !
In the middle of all this I offered my services as a crewmember on Kens boat for the "commodores race" the next day, Sunday, so at 11.30 I headed off and had a fine day sailing on the Forth with Ken and his daughter Robin (7 yrs) not gettting back until 8pm. So now I am a bit suntanned despite hat and factor 30 suncream, I have managed to get the kids to bed, lee is watching a rerun of her favourite TV program and I am off to bed happy and very tired.
In one funny moment I forgot my growth factor injection so we turned back and I had to run into the house and pick it up on the way to the boat, so my growth factor was injected parked in the street while Ken went to the bank! Does cause a few funny looks from people walking by.
Tomorrow is the day for getting back into the zone hopefully for my last chemo on Tuesday, I will take care with the preparations this time to try to avoid the problems we seen last time. Even tonight I am loading my meditation CD into the bedside player to start to get me back in the right mood for the chemo and the sore bones which will start tomorrow or tonight.
So off to bed tired and happy
Cheers
Gerry
Thursday, June 08, 2006
Ticking Along
Just a quick post to say all is well over here.
Apart from that I have been working away on some reviews I have taken on to keep me busy and the normal demand of different people issues in work, this is the one area that I have tried to keep going as a lot of it is based on personal relationships which are hard to hand over if you intend as I do to return to work around September.
I have now fully recovered from the chemo, apart from deterioation of nails, thinner hair, loss of touch in my fingers and toes and a certian amount of tiredness/breathlessness all of which will pass once I stop the chemo. The next treatment is due on Tuesday and I will take more care with my preparations this time round given what happened last time. Fun will be provided by watching the opening of the world cup with Nick, him being English and my friend Jim being a Scot should help the entertainment.
My local doctor saw me yesterday to give me the offical form which allows me to stay off work if I want for another two months but permits "light working" and hence gives me a get out clause for when I want to get into the plant or go to meetings. I am missing our big semi-annual Gore meeting for all the manufacturing folks in Washington this week which is a disappointment but nothing I can do about it unfortunatly.
So nice summer days here in Edinburgh, ticking over with my work stuff and not feeing too stressed. I am looking forward to the consultation on the 22nd as that is when I will decide if radio therapy is needed and can then make plans for life after treatment, everything is pretty much on hold for a few weeks until that decision point is reached.
Time to water the garden
Cheers
Gerry
Apart from that I have been working away on some reviews I have taken on to keep me busy and the normal demand of different people issues in work, this is the one area that I have tried to keep going as a lot of it is based on personal relationships which are hard to hand over if you intend as I do to return to work around September.
I have now fully recovered from the chemo, apart from deterioation of nails, thinner hair, loss of touch in my fingers and toes and a certian amount of tiredness/breathlessness all of which will pass once I stop the chemo. The next treatment is due on Tuesday and I will take more care with my preparations this time round given what happened last time. Fun will be provided by watching the opening of the world cup with Nick, him being English and my friend Jim being a Scot should help the entertainment.
My local doctor saw me yesterday to give me the offical form which allows me to stay off work if I want for another two months but permits "light working" and hence gives me a get out clause for when I want to get into the plant or go to meetings. I am missing our big semi-annual Gore meeting for all the manufacturing folks in Washington this week which is a disappointment but nothing I can do about it unfortunatly.
So nice summer days here in Edinburgh, ticking over with my work stuff and not feeing too stressed. I am looking forward to the consultation on the 22nd as that is when I will decide if radio therapy is needed and can then make plans for life after treatment, everything is pretty much on hold for a few weeks until that decision point is reached.
Time to water the garden
Cheers
Gerry
Sunday, June 04, 2006
The ease of pottering around
Following the tricky events of chemo 7 this last few days have been spent generally pottering around to the great benefit of all involved. Previously chemo had been set up on a friday allowing most of the weekend and Monday to recover before the demands of conference calls and "events" began to require the attention of my work head. This has been pretty effective from a work point of view, but this week with chemo 7 on tuesday I had to survive thursday and friday (my low points after the chemo). So in essence I slept between phone calls or took them from under my duvet on Thursday and when it came to friday I just slept, literally from 7.30pm thursday night to 11am Friday, lunch/phone call and back to sleep for most of the afternoon, back in bed by 5pm up for a few hours around 10pm and then back to sleep again. The chemo fatigue is cumulative so as I get further chemos then the "wipe out" phase becomes more pronounced.
Anyway the big surprise was waking up on Saturday morning thinking "I feel all right again" having been watching the clock go round on thursday so I could take my next dose of anti nausia pills and sleeping most of Friday that was a real relief. The sun was shining so I pottered off to the garden and cut the lawn and my neighbours lawn, then I fitted my new seats and walnut door cappings to the MG while cleaning and polishing it for the show on Sunday. I started fitting bits to the car around 1pm and finished polishing the chrome around 9pm but it felt like only a few hours had passed. Along the way different friends and neighbours in the garages turned up and chatted or held bits while I tried to assemble them. Lee even came out with cups of tea and later with a medicinal gin and tonic around 6pm and helped me lever some washers into place on the seat anchor points. As I went back into the house the sun was just setting and the smell of the cut lawn was still in the air, car safely tucked up in its garage polished and ready for the morning. Emotionally such a contrast to tuesday I felt stable and happy again which was great.
This last week it feels like Poppy has moved out at 11 years old, she went to Aberfeldy on a week long school trip last Sunday and has come back even "cooler" than she went away, luckly practice on the local climbing wall with Holly and I meant she was totally unphased by the events and really enjoyed her time away. Her friends from the trip are now friends for life, right up to the day after she got back when she went for a "sleepover" with some other friends and then straight to a football competition on Sunday so we have hardly seen her all week. We finished up today with a walk to the local park which has a funfair running at the moment Poppy and Holly tried to get me to go on the rides but I am to wimpish to compete with them. My friend Jim and his daughter Lucy were there at the same time so we were able to swap favourites for the world cup while watching the childeren scare themselves to bits.
I set off to the car show at Thirlstane castle early this morning with the MG club folks, all in convoy down through the scottish border country. It was a beautiful sunny day and stupidly early on a sunday so we roared through the sleepy villages. Once we got to the grounds we set up our stand of 15 cars, flags, posters and bunting to try to win the "best club stand trophy" from our arch rivals the Trimuph club. Sufficient to say we have the number 1 cup still in our pub at the end of the event.
Lee and Holly came down at lunchtime with a nice picnic and we wandered around the cars, bouncy castles, real castles, candy floss etc for a few hours in the sunshine and generally enjoyed ourselves. Holly elected to stay with me when Lee headed off to beat the end of show rush and helped dismantle the stand with all the "grown ups" giving her stuff to take to the little trailer we use, she reveled in the attention and ended up with a few pound coins in pocket from club members (many of whom are retired with grandchildern and have a soft spot for Holly). So Holly and I headed home in the MG on the old A68 zipping past slower cars on the straights as the MG has a tuned up rally engine so is about 40% more powerful than standard.
Once we got home and put the car away Poppy came home and we headed to the Fair for an hour, as I walked back, with the sun setting, I thought some of the happiest times are just pottering around doing silly things on a summer sunday, and without a care in the world.
Sometimes the simple things are the most satisfying and peaceful
So childeren are now in bed and snoozing happily, I am finishing my blog with a glass of wine, the cats are asleep on the sofa, and Lee is watching her singing contest on the TV, all is well in Edinburgh !
Cheers
Gerry
Anyway the big surprise was waking up on Saturday morning thinking "I feel all right again" having been watching the clock go round on thursday so I could take my next dose of anti nausia pills and sleeping most of Friday that was a real relief. The sun was shining so I pottered off to the garden and cut the lawn and my neighbours lawn, then I fitted my new seats and walnut door cappings to the MG while cleaning and polishing it for the show on Sunday. I started fitting bits to the car around 1pm and finished polishing the chrome around 9pm but it felt like only a few hours had passed. Along the way different friends and neighbours in the garages turned up and chatted or held bits while I tried to assemble them. Lee even came out with cups of tea and later with a medicinal gin and tonic around 6pm and helped me lever some washers into place on the seat anchor points. As I went back into the house the sun was just setting and the smell of the cut lawn was still in the air, car safely tucked up in its garage polished and ready for the morning. Emotionally such a contrast to tuesday I felt stable and happy again which was great.
This last week it feels like Poppy has moved out at 11 years old, she went to Aberfeldy on a week long school trip last Sunday and has come back even "cooler" than she went away, luckly practice on the local climbing wall with Holly and I meant she was totally unphased by the events and really enjoyed her time away. Her friends from the trip are now friends for life, right up to the day after she got back when she went for a "sleepover" with some other friends and then straight to a football competition on Sunday so we have hardly seen her all week. We finished up today with a walk to the local park which has a funfair running at the moment Poppy and Holly tried to get me to go on the rides but I am to wimpish to compete with them. My friend Jim and his daughter Lucy were there at the same time so we were able to swap favourites for the world cup while watching the childeren scare themselves to bits.
I set off to the car show at Thirlstane castle early this morning with the MG club folks, all in convoy down through the scottish border country. It was a beautiful sunny day and stupidly early on a sunday so we roared through the sleepy villages. Once we got to the grounds we set up our stand of 15 cars, flags, posters and bunting to try to win the "best club stand trophy" from our arch rivals the Trimuph club. Sufficient to say we have the number 1 cup still in our pub at the end of the event.
Lee and Holly came down at lunchtime with a nice picnic and we wandered around the cars, bouncy castles, real castles, candy floss etc for a few hours in the sunshine and generally enjoyed ourselves. Holly elected to stay with me when Lee headed off to beat the end of show rush and helped dismantle the stand with all the "grown ups" giving her stuff to take to the little trailer we use, she reveled in the attention and ended up with a few pound coins in pocket from club members (many of whom are retired with grandchildern and have a soft spot for Holly). So Holly and I headed home in the MG on the old A68 zipping past slower cars on the straights as the MG has a tuned up rally engine so is about 40% more powerful than standard.
Once we got home and put the car away Poppy came home and we headed to the Fair for an hour, as I walked back, with the sun setting, I thought some of the happiest times are just pottering around doing silly things on a summer sunday, and without a care in the world.
Sometimes the simple things are the most satisfying and peaceful
So childeren are now in bed and snoozing happily, I am finishing my blog with a glass of wine, the cats are asleep on the sofa, and Lee is watching her singing contest on the TV, all is well in Edinburgh !
Cheers
Gerry
Wednesday, May 31, 2006
Back on course
After my wobbly day yesterday I just wanted to give you a short blog to say things are all stabilised again over here. Last night therapy included reruns of Dr Who and Casulty on the TV followed by the England match and a history program on seiges in Vietnam which was very interesting, reasonably good sleep overnight helped as well.
This morning after this short blog I have a few pages of emails to clear and the happy task of phoning a number of colleages to discuss their pay rises which we do in June for a lot of people. A few people issues around the globe will keep me busy on the phone as well. With Ituns running podcasts in the background, my one allowed coffee cup in hand, and back into the working routine which has kept me going over the months everything is back on course emotionally.
I had thought of deleting the previous blog but I have decided to keep it in just to show that there are wobbly days, and that these can occur at funny times (like when you should be relieved that the treatment has been very successful). So dont worry about things I am fine now and the wobble is well and truly over !!
Back to the comfort of emails, lunch at the cafe, and walking back through the park with Holly at 3pm in our sunny summer weather.
Cheers
Gerry
This morning after this short blog I have a few pages of emails to clear and the happy task of phoning a number of colleages to discuss their pay rises which we do in June for a lot of people. A few people issues around the globe will keep me busy on the phone as well. With Ituns running podcasts in the background, my one allowed coffee cup in hand, and back into the working routine which has kept me going over the months everything is back on course emotionally.
I had thought of deleting the previous blog but I have decided to keep it in just to show that there are wobbly days, and that these can occur at funny times (like when you should be relieved that the treatment has been very successful). So dont worry about things I am fine now and the wobble is well and truly over !!
Back to the comfort of emails, lunch at the cafe, and walking back through the park with Holly at 3pm in our sunny summer weather.
Cheers
Gerry
Tuesday, May 30, 2006
Not so cool for chemo 7
Finally today after three and a half months I managed to get my head in the wrong place for chemo 7, funny thing was it was all subconscious rather than on the surface, right up to the bit where I had a real panic attack for the first time in my life, this as the nurse tried, for the third time, to get a good line in to administer the chemo. It was a wierd feeling, I went all hot and cold, felt sick, and was debating with myself if I was going to fall over or if I could muster the energy to run away...very freaky all round as my logical head was going "what the hell is going on here body!" but some other part of my head got control for about 5min. All ended well as the nurse backed off, I asked for a timeout and put on my meditation tape, and the world slowely returned to to normal, so that we could go at it again and get the line in successfully, after that I still felt a bit wobbly but was able to overcome the urge to run away for the rest of the day as the chemo was administered. So that was a first, and not one I plan to repeat, brought on from my small amount of needle phobia but more from lack of preparation.
Normally two days ahead of the chemo I start to try to get "in the zone" I listen to my meditation tapes, walk round the park, take things easy all to get my emotions into a positive/defensive framework which has helped me (more than I had realised) handle the treatment. This time I had worked for a week and had a jolly time over the weekend including 4*4 driving and doing some heavy work in the garden clearing plants so we can have the stone wall rebuilt later this week. This morning I took Holly to school to allow Lee to get to work early to catch up and then, rather stupidly, decided just to walk to the hospital as it was such a nice day, so just over an hour later I pitch up at the hospital and they have moved the ward. So obvious mistakes, no meditation in the morning, too much exercise, hot from the walk, in a strange environment and as soon as I sit down, unusually, they were ready to put the line in (something which I am fearful of anyway). The poor nurse then botched two lines, trying to run the second one even though I knew it was not right and my stress level was going through the roof as I gathered the courage to tell her we would need to try again. Just then subconscious takes over and suddenly I am not really in full control of my body as outlined above...not to be recommended!
Never the less I got past this bit of emotional excitment and I now safely have chemo 7 inside me, a nice cup of tea to hand and back in the security of home, which are all big reliefs, I think taking it easy today, drinking plenty of water, Eassic tea and some easy TV or movies may be all I manage after this quick blog. The lesson of the day is once again the difficulty and the importance of managing your mind/emotions as much as managing the physical symptoms.
Cheers
Gerry
Normally two days ahead of the chemo I start to try to get "in the zone" I listen to my meditation tapes, walk round the park, take things easy all to get my emotions into a positive/defensive framework which has helped me (more than I had realised) handle the treatment. This time I had worked for a week and had a jolly time over the weekend including 4*4 driving and doing some heavy work in the garden clearing plants so we can have the stone wall rebuilt later this week. This morning I took Holly to school to allow Lee to get to work early to catch up and then, rather stupidly, decided just to walk to the hospital as it was such a nice day, so just over an hour later I pitch up at the hospital and they have moved the ward. So obvious mistakes, no meditation in the morning, too much exercise, hot from the walk, in a strange environment and as soon as I sit down, unusually, they were ready to put the line in (something which I am fearful of anyway). The poor nurse then botched two lines, trying to run the second one even though I knew it was not right and my stress level was going through the roof as I gathered the courage to tell her we would need to try again. Just then subconscious takes over and suddenly I am not really in full control of my body as outlined above...not to be recommended!
Never the less I got past this bit of emotional excitment and I now safely have chemo 7 inside me, a nice cup of tea to hand and back in the security of home, which are all big reliefs, I think taking it easy today, drinking plenty of water, Eassic tea and some easy TV or movies may be all I manage after this quick blog. The lesson of the day is once again the difficulty and the importance of managing your mind/emotions as much as managing the physical symptoms.
Cheers
Gerry
Friday, May 26, 2006
Hit it again.....chemo 7
Well this week has been a rollercoaster of emotions, elation, hope, disappointment and resignation all in one big blur. To cut to the chase I went to the hospital yesterday and had a long discussion with the chief cancer wizards about my case. Since the team at Aberdeen had looked at my PET scans and given them the all clear they had been checked by the top experts in Guys hospital in London and by the team in Edinburgh. Taking everything into consideration like the spread of the original disease and the residual size of the main tumor (now 1.5cm down from 4.5cm) and the scan uptake levels in the other nodes, etc they collectively concluded that I should go on with treatment to make sure we had got every last cell of the cancer. On a ten point risk scale I was a three if I had been one or two that could have been the end of the treatment. This means I am setting up for chemo 7 on Tuesday and will have at probably two more months of treatment (two chemos and one radiotherapy probably but we are still debating the last part).
This was the expected outcome really as I mentioned before, but I had sort of let my hopes drift up towards not needing any more treatment at all, which, had my risk score been lower, was a 50% possibility. So I am a little disappointed, but I do see the good sense of making sure we get it all this time rather than have to deal with it later, and I am well pleased that the disease is responding so well to the treatment so I have to just grin and bear it.
Since the clear scan announcement I have been having a jolly time, Lee and I took the kids away for the weekend to a really nice hotel with a super restaurant, lots of good walks and overlooking the sea on the west coast of Scotland. We walked on beaches, climbed small hills and watched boats going through the lochs. One evening we sat and watched a spectular sunset from the hotel roof for two hours with the kids practicing their dancing steps as we sipped brandies and celebrated.
On Monday morning me (and my antiseptic wipes) drove over to Stirling where some colleagues from the USA were visiting for a meeting and I was able (mostly) to pretend to be all right again for a week, which was a lot of fun, but exhausing. Along the way quite a bit of wine was consumed in the evenings and old stories shared among friends. I also got my 10 year service award in the course of the meeting which was fun. Earlier I had finally managed to get to see my friend Nick's factory and he paid for our curry dinner in exchange for my "consultation" fee and we had a jolly time arguing about the economic benefits of immigration (me on the positive side Nick increasingly impersonating Victor Meldrew as the grumpy right wing faction).
My mid treatment "celebration" week continues tonight when we head out to some Edinbugh friends house for dinner, and tomorrow night when I have my friends from Dumfries for dinner and then the next day we (at least the boys) are going on a 4*4 driving experience in Fife. Hopefully we will not roll the landrovers ! On Sunday night it will be funny in the house as Poppy is away for the week on her first school trip (outdoor pursuits in up north lets hope the weather warms up) and Holly is at a sleepover with friends - Lee and I may head out to the cinema for the first time together in years. She is toying with the idea of setting up a small business on the side if she can get the funding and approval which I think is a great idea.
Sunday morning will see me start the bone marrow boosting self injections once again so by Monday I will be back in the zone of sore bones, Eassic tea, supplements and meditation to try to get ready chemo 7 and another couple of months of treatment. If all goes well, and everything is looking good at the moment this is really sweep up or scavaging treatment, I should be finished treatment at the end of July giving me August to recuperate and be back to "normal" around mid September. Fingers crossed but we are well on the way now.
Sorry for the week off the blog for those of you who enjoy reading it and keeping up to date but it was nice to pretend to be well again for the week and we did not have internet connections in the different hotels. A challenge for me will be to work out where to focus my post chemo cleaning energy so, one criterion is to keep it away from Lee so it may be that I can get the new carpets and seats fitted to the MG before our clubs big show at Thirlastaine castle on the 4rd, hopefully I will not be too sleepy and the weather will be good !
Cheers for now
Gerry
This was the expected outcome really as I mentioned before, but I had sort of let my hopes drift up towards not needing any more treatment at all, which, had my risk score been lower, was a 50% possibility. So I am a little disappointed, but I do see the good sense of making sure we get it all this time rather than have to deal with it later, and I am well pleased that the disease is responding so well to the treatment so I have to just grin and bear it.
Since the clear scan announcement I have been having a jolly time, Lee and I took the kids away for the weekend to a really nice hotel with a super restaurant, lots of good walks and overlooking the sea on the west coast of Scotland. We walked on beaches, climbed small hills and watched boats going through the lochs. One evening we sat and watched a spectular sunset from the hotel roof for two hours with the kids practicing their dancing steps as we sipped brandies and celebrated.
On Monday morning me (and my antiseptic wipes) drove over to Stirling where some colleagues from the USA were visiting for a meeting and I was able (mostly) to pretend to be all right again for a week, which was a lot of fun, but exhausing. Along the way quite a bit of wine was consumed in the evenings and old stories shared among friends. I also got my 10 year service award in the course of the meeting which was fun. Earlier I had finally managed to get to see my friend Nick's factory and he paid for our curry dinner in exchange for my "consultation" fee and we had a jolly time arguing about the economic benefits of immigration (me on the positive side Nick increasingly impersonating Victor Meldrew as the grumpy right wing faction).
My mid treatment "celebration" week continues tonight when we head out to some Edinbugh friends house for dinner, and tomorrow night when I have my friends from Dumfries for dinner and then the next day we (at least the boys) are going on a 4*4 driving experience in Fife. Hopefully we will not roll the landrovers ! On Sunday night it will be funny in the house as Poppy is away for the week on her first school trip (outdoor pursuits in up north lets hope the weather warms up) and Holly is at a sleepover with friends - Lee and I may head out to the cinema for the first time together in years. She is toying with the idea of setting up a small business on the side if she can get the funding and approval which I think is a great idea.
Sunday morning will see me start the bone marrow boosting self injections once again so by Monday I will be back in the zone of sore bones, Eassic tea, supplements and meditation to try to get ready chemo 7 and another couple of months of treatment. If all goes well, and everything is looking good at the moment this is really sweep up or scavaging treatment, I should be finished treatment at the end of July giving me August to recuperate and be back to "normal" around mid September. Fingers crossed but we are well on the way now.
Sorry for the week off the blog for those of you who enjoy reading it and keeping up to date but it was nice to pretend to be well again for the week and we did not have internet connections in the different hotels. A challenge for me will be to work out where to focus my post chemo cleaning energy so, one criterion is to keep it away from Lee so it may be that I can get the new carpets and seats fitted to the MG before our clubs big show at Thirlastaine castle on the 4rd, hopefully I will not be too sleepy and the weather will be good !
Cheers for now
Gerry
Monday, May 15, 2006
Scans Clear !!!!!
I just had a phone call from my cancer consultant Kerry Davidson, apparently the CAT scan shows a small but much reduced mass in my chest, which is a significant improvement, and the PET scan is showing that there is no active cancer in the residual tumour !! Lots of hugs and jumping round the house have been the result but the bubbly is staying in the fridge as I am still very wobbly from chemo 6.
Normally the CAT scan showing some small mass would mean I would get one more chemo and then a dose of radiotherapy, in this trial the clear PET scan means half of us will get no further treatment, I will find out next thursday (12 days away) which half I am randomised into. Of course I have the option of discharging myself and not taking part in the trial if I am selected for further treatment but that needs some considerable discussion, lets hope the randomising goes in the direction of no treatment and the data is still of use to others.
At the moment I am still only three days from my last chemo and sleeping all the time as my white blood cells pumlet, I am still very prone to infection and this will take a month or more to recover and I may have up to two months of treatment to make sure the Hodgkins does not return, but we are clearly on the right path to recovery now. This is a great great relief.
Emotionally I am still in a sort of shock, I cant really feel anything yet, but I am sure that will come along as the news sinks in, the future will be uncertian for another few weeks but then we should be in good shape to start to make plans for holidays and getting back slowely to some form of normal life.
Thanks to all of you for your great support during the last four months, I will probably keep the blog up until I get a firm plan to get back to work, your help and support has been very important over this time, thanks again - I am off to run around the garden shouting and jumping !!
Cheers and big sighs of relief, I will write a proper thank you later
Gerry
Normally the CAT scan showing some small mass would mean I would get one more chemo and then a dose of radiotherapy, in this trial the clear PET scan means half of us will get no further treatment, I will find out next thursday (12 days away) which half I am randomised into. Of course I have the option of discharging myself and not taking part in the trial if I am selected for further treatment but that needs some considerable discussion, lets hope the randomising goes in the direction of no treatment and the data is still of use to others.
At the moment I am still only three days from my last chemo and sleeping all the time as my white blood cells pumlet, I am still very prone to infection and this will take a month or more to recover and I may have up to two months of treatment to make sure the Hodgkins does not return, but we are clearly on the right path to recovery now. This is a great great relief.
Emotionally I am still in a sort of shock, I cant really feel anything yet, but I am sure that will come along as the news sinks in, the future will be uncertian for another few weeks but then we should be in good shape to start to make plans for holidays and getting back slowely to some form of normal life.
Thanks to all of you for your great support during the last four months, I will probably keep the blog up until I get a firm plan to get back to work, your help and support has been very important over this time, thanks again - I am off to run around the garden shouting and jumping !!
Cheers and big sighs of relief, I will write a proper thank you later
Gerry
Saturday, May 13, 2006
Sleeping not so beauty
As you may have guessed from yesterday the cumulative effects of the chemotherapy are begining to show and I have continued to be a sleepyhead today as well. The good news is apart from the sore fingernails and sleepyness my Eassic tea and supplements (along with anti nausea meds) seem to be keeping my digestive and other symptoms under control and I feel quite well when I am not hiding under the duvet. Today I managed to cut the grass and our elderly neighbours grass before running out of energy so the new seats for the MG are still in the garage rather than in the car as had been planned. Thankfully from Lees point of view I did not set my sights on clearing out anything in the house so domestic harmony was much improved over last cycles events. Never the less the girls went out for drinks last night for sarahs birthday and met up again for moral support this morning at the cafe across the road just in case I was misbehaving and Lee needed coffee therapy - any excuse I think !
So tonights plan is to collapse for an hour or so in front of the TV and then to wobble off to bed with my liter of water (the fourth of the day) to keep my system flushing through. Tomorrow morning there is an MG club run down to the borders and Dumfries which I may be good enough for, depends on how I feel and the weather I guess. Now the trees are fully in leaf around the house and the sun is just going down, it feels like this whole chemo experience so far has actually been a really positive thing for me bringing me closer to Lee, Poppy and Holly and less consumed with job and "action lists". Whenever I do get back to work I do not think I will approach it in quite the same way... but lets see how the scans go before we let heads drift too far in that direction. So all quiet on this front and the positivness of warm late spring days is permeating our house and our mood on a fine day.
I hope things are as well where you all are
Cheers
Gerry
So tonights plan is to collapse for an hour or so in front of the TV and then to wobble off to bed with my liter of water (the fourth of the day) to keep my system flushing through. Tomorrow morning there is an MG club run down to the borders and Dumfries which I may be good enough for, depends on how I feel and the weather I guess. Now the trees are fully in leaf around the house and the sun is just going down, it feels like this whole chemo experience so far has actually been a really positive thing for me bringing me closer to Lee, Poppy and Holly and less consumed with job and "action lists". Whenever I do get back to work I do not think I will approach it in quite the same way... but lets see how the scans go before we let heads drift too far in that direction. So all quiet on this front and the positivness of warm late spring days is permeating our house and our mood on a fine day.
I hope things are as well where you all are
Cheers
Gerry
Friday, May 12, 2006
Chemo 6 of 6
Good news is chemo 6 is safely inside me without any major problems, bad news is the correlation and analysis of my scans will take until next thursday (I hope, at least that is when I have my next chief cancer wizard consultation now booked), so the uncertianity and the waiting will carry on for another week. Other news is that my nails may in fact fall off as they are separating from my fingers, another area to keep clean and watch for infection so this time I returned from the hospital with a big supply of rubber gloves!
I am more tired this time and had to go straight under the duvet once I got home for a few hours, just got up now so I will see how the evening goes, perhaps I will blog a bit later if my energy returns.
Cheers for now
Gerry
I am more tired this time and had to go straight under the duvet once I got home for a few hours, just got up now so I will see how the evening goes, perhaps I will blog a bit later if my energy returns.
Cheers for now
Gerry
Thursday, May 11, 2006
Mad Max flies into chemo 6
My grumpy bones have been bothering me more than usual today despite a big load of painkillers and my fingernails all hurt which is a new one for discussion with the doctors tomorrow as I go in for chemo 6. Its amazing to me that this is the last chemo of this first phase of treatment and three months has passed since I started writing the blog as it seems like no time at all since it all started.
I spent the morning in the hospital today getting the CAT scan which will be combined with the PET scan from monday to make the diagnosis. It is incredibily distracting and frustrating to think that the data on my condition is out there somewhere, but I do not know how it is going, hopefully all the cross checks and analysis will be done by early next week and then someone will get round to telling me - I can feel a stroppy paitent moment coming on tomorrow if I dont get a clear timetable on when I will know. Honestly I can't really concentrate or focus just now as the indecision and uncertianity are just too distracting specially when coupled with the sore bones. Its quite funny actually as I was watching TV tonight (my favourite House) with Holly and suddenly had a big hip pain and had to lean forward to relieve it cursing under my breath, Holly just said "bones dad ?" and I said "Yea bones" she then replies "it will be OK tomorrow" and turned back to watch the next bit of the program! It is just amazing how all this stuff becomes part of life and how the kids adjust to it. On reflection keeping them fully informed of the treatment, complications etc was a really good decision and it has allowed us to share quite nice thoughtful conversations over these months. I guess in some ways we all want to appear to be strong and invincable to our childern but I think seeing me getting chemo and injecting myself, being tired and ill will probably be good for them in the long run helping them to understand that bad things do happen for no reason - and that people get sick and recover or sometimes do not.
On a good note I did take two hours out from work and medical stuff on Wednesday morning to have my first flying lesson. It was a fantastic day with blue sky and no wind giving us views for miles in every direction. I had done a glider flying course 20 years ago so once I got used to the plane I was able to fly it myself for 45 min of the hour I was up, in fact I got myself to the runway (with a lot of verbal help from the instructor of course but I was flying the plane) and then handed over to him at 100 feet for the actual landing. I was well pleased and I think that this may spell the end of the Aston Martin dream. Good news is I took the MG all the way to the airfield and back so the leak from the water pump is now confirmed to be cured. As part of giving up any real chance to own an Aston I did splash out on some new seats, carpets and a walnut dashboard for the MG interior so it might feel plush! I will keep the screen saver for nostigias sake I think.
Positive energy to all the family at home specially Norah and Kevin in their new house, we are thinking of you and hope you have great luck there.
So I am off to toss and turn in bed with my eassic tea, elephant painkillers and a book, having kept my hair I hope not to lose my fingernails at the last treatment (they are going brown underneath which may not be good, but at least they like hair can grow back). Learning from the last steroid shock, which you may have gathered led to some domestic strain as I tried to manically tidy out my garage into the house, I am going to concentrate on replacing the MG interior this saturday as I can obsess all by myself in the garage and Lee can survive by bringing the occasional cup of tea and retreating to the house.
Happy birthdays to Kevin in Ireland and Sarah around the corner for today 11 min ago !
Cheers
Gerry
I spent the morning in the hospital today getting the CAT scan which will be combined with the PET scan from monday to make the diagnosis. It is incredibily distracting and frustrating to think that the data on my condition is out there somewhere, but I do not know how it is going, hopefully all the cross checks and analysis will be done by early next week and then someone will get round to telling me - I can feel a stroppy paitent moment coming on tomorrow if I dont get a clear timetable on when I will know. Honestly I can't really concentrate or focus just now as the indecision and uncertianity are just too distracting specially when coupled with the sore bones. Its quite funny actually as I was watching TV tonight (my favourite House) with Holly and suddenly had a big hip pain and had to lean forward to relieve it cursing under my breath, Holly just said "bones dad ?" and I said "Yea bones" she then replies "it will be OK tomorrow" and turned back to watch the next bit of the program! It is just amazing how all this stuff becomes part of life and how the kids adjust to it. On reflection keeping them fully informed of the treatment, complications etc was a really good decision and it has allowed us to share quite nice thoughtful conversations over these months. I guess in some ways we all want to appear to be strong and invincable to our childern but I think seeing me getting chemo and injecting myself, being tired and ill will probably be good for them in the long run helping them to understand that bad things do happen for no reason - and that people get sick and recover or sometimes do not.
On a good note I did take two hours out from work and medical stuff on Wednesday morning to have my first flying lesson. It was a fantastic day with blue sky and no wind giving us views for miles in every direction. I had done a glider flying course 20 years ago so once I got used to the plane I was able to fly it myself for 45 min of the hour I was up, in fact I got myself to the runway (with a lot of verbal help from the instructor of course but I was flying the plane) and then handed over to him at 100 feet for the actual landing. I was well pleased and I think that this may spell the end of the Aston Martin dream. Good news is I took the MG all the way to the airfield and back so the leak from the water pump is now confirmed to be cured. As part of giving up any real chance to own an Aston I did splash out on some new seats, carpets and a walnut dashboard for the MG interior so it might feel plush! I will keep the screen saver for nostigias sake I think.
Positive energy to all the family at home specially Norah and Kevin in their new house, we are thinking of you and hope you have great luck there.
So I am off to toss and turn in bed with my eassic tea, elephant painkillers and a book, having kept my hair I hope not to lose my fingernails at the last treatment (they are going brown underneath which may not be good, but at least they like hair can grow back). Learning from the last steroid shock, which you may have gathered led to some domestic strain as I tried to manically tidy out my garage into the house, I am going to concentrate on replacing the MG interior this saturday as I can obsess all by myself in the garage and Lee can survive by bringing the occasional cup of tea and retreating to the house.
Happy birthdays to Kevin in Ireland and Sarah around the corner for today 11 min ago !
Cheers
Gerry
Tuesday, May 09, 2006
Running for Cancer
I just got the email below from my friend Alan Hunter who is running to support the very excellent UK charity Cancerbackup which provides support and information for cancer patients and thier families (you can check out their website which is a great resource). So if any of you want to support him with sponsorship it is going to a good cause, which was very helpful to me in the early stages of my own diagnosis. His email address is attached to his message below.
"I know you are just coming out of the latest Chemo - so hopefully everything is going to plan - I'll catch up on your latest Blog.
I think I mentioned I would run the Mens Health 10 k on June 18 at Glasgow and get sponsorship for Cancer Backup.
I am still planning to 'run' this although at this time my left knee is still bandaged from the surgery on Friday. Worst cast case I should be able to walk it by then - even if the Olympic record may not be under threat.
I will be getting people at my end for sponsorship - but I thought you might want to consider the Blog to get anyone at your end to put up sponsorship if they want.
I guess they could go through you or come direct to me at ahunter@wlgore.com or alanhunter50@hotmail.com or they can go on the website http://www.justgiving.com/alanh to sponsor me, all for a good cause !".
As you can see Alan has just had surgery on his knee so he will really be earning the sponsorship money in pain and sweat !
Cheers
Gerry
"I know you are just coming out of the latest Chemo - so hopefully everything is going to plan - I'll catch up on your latest Blog.
I think I mentioned I would run the Mens Health 10 k on June 18 at Glasgow and get sponsorship for Cancer Backup.
I am still planning to 'run' this although at this time my left knee is still bandaged from the surgery on Friday. Worst cast case I should be able to walk it by then - even if the Olympic record may not be under threat.
I will be getting people at my end for sponsorship - but I thought you might want to consider the Blog to get anyone at your end to put up sponsorship if they want.
I guess they could go through you or come direct to me at ahunter@wlgore.com or alanhunter50@hotmail.com or they can go on the website http://www.justgiving.com/alanh to sponsor me, all for a good cause !".
As you can see Alan has just had surgery on his knee so he will really be earning the sponsorship money in pain and sweat !
Cheers
Gerry
Monday, May 08, 2006
Glowing personality ?
Having just returned from my PET scan in Aberdeen I am glowing not with personality but with radioactivity, in order to do the scan I was injected with radioactive sugar and the leaflet contains nice advice like "do not let small childeren sit on your knee for the next few days" honest. When I asked the nurse if she was weighing me to determine the dose she said "no we give you the maximum we are allowed to" so I have a few days of double flushing the loo and I guess sleeping in the "spoons" position may be inadvisable.
I tried to get the nurse to leak the results to me but she did not give anything away, despite taking half an hour to ensure the scan was good enough that they did not need to do a repeat. I suspect, given her steely determination to say nothing, that there is still some activity on the scan, but I will have to sit on my hands and wait for my doctors to get the results. Meanwhile I will try to set myself up for the next phase of treatment until I get the actual facts and the results of my CT scan on Thursday. Hopefully I will bump into the doctor on Friday which is Chemo 6 or get to see her next week to at least eliminate the uncertianity. If I do have the next stage of treatment, then I will try to get it to start after the 28th so I can have a jolly weekend as planned to celebrate the end of the first phase of chemo (and can sneak in a meeting of close colleagues in the UK the week before to catch up with them) prior to "going underground" again for two months more treatment.
My trip to Aberdeen went well, I took the opportunity to get a map and walk from the train station to Lee's parents house which took me through an international food market, past a cathederal and through a park, all in all a very pleasant stroll for a sunny sunday afternoon. Contary to the title of lees previous blog Lee's mum fed me with a very nice tea of slow roast lamb while her Dad and I split a nice bottle of Rioja wine, her sister Dot also turned up for a chat and we rounded the evening off with the new edition of Top Gear (no Aston Martins on show) and a documentary about Krackatoa which was very interesting. Thanks to the wine I slept very well and got up to a breakfast of black tea as I was not allowed to eat anything.
Sandy, Lee's dad very kindly walked me up to the hospital where he himself worked for many many years and gave me a kind of history lesson on the way about the development of the hospital and the different departments he had worked in. A funny moment was when he said "what are all these schoolchilderen doing here?" only for me to point out they were probably the medical students - which they were! I returned to their house for lunch, in this case the famost Aberdeen butteries and lamb broth which, after a day of starving, went down very well. Lees mum makes great slow cooked lamb which I must discover how to replicate in our new oven.
Getting scanned itself meant lying down for an hour (no movement allowed) to let the radiactive sugar distribute itself around the body and then lying in the scanner for a further hour, I spent the time "visualising" nice possible futures hoping that somehow this would influence the results. One of the key things I have concluded from this adventure is to value and cherish family and friends more, the other perhaps less obvious one is to take more risks to enjoy life at the moment, hence you will see the alarm in Lee's blog as I comtemplate spending some savings on a silly (but not depreciating therefore not that silly) car to enjoy while I can.
Thankfully the effect of the steroids has diminished and my manic tendency to clear out my garage of household rubbish has mostly worn off, just in time to give Lee a well deserved rest (from me in manic mode) and for some new seats and carpets to arrive for my MG. This will get the inside looking as nice as the outside over the next few weekends in time for our big show at the start of July. Although this week is mostly going to be dreary medical stuff (with my first flying lesson thrown in on Wednesday) I can use the energy of chemo 6 on friday to restore my car in the recently cleared out garage, hopefully with sunshine and the radio to keep me in a good mood.
Finally thanks again to Sandy and Sylvia for looking after me in Aberdeen, I will keep you all posted as the results of the tests come in, for the moment I think it may just be "the eye of the storm" but I will keep my fingers crossed for the unlikly outcome of sailing off into the sunset !
Cheers for now
Gerry
(still with a DB9 screen saver, and without a DB9 budget)
I tried to get the nurse to leak the results to me but she did not give anything away, despite taking half an hour to ensure the scan was good enough that they did not need to do a repeat. I suspect, given her steely determination to say nothing, that there is still some activity on the scan, but I will have to sit on my hands and wait for my doctors to get the results. Meanwhile I will try to set myself up for the next phase of treatment until I get the actual facts and the results of my CT scan on Thursday. Hopefully I will bump into the doctor on Friday which is Chemo 6 or get to see her next week to at least eliminate the uncertianity. If I do have the next stage of treatment, then I will try to get it to start after the 28th so I can have a jolly weekend as planned to celebrate the end of the first phase of chemo (and can sneak in a meeting of close colleagues in the UK the week before to catch up with them) prior to "going underground" again for two months more treatment.
My trip to Aberdeen went well, I took the opportunity to get a map and walk from the train station to Lee's parents house which took me through an international food market, past a cathederal and through a park, all in all a very pleasant stroll for a sunny sunday afternoon. Contary to the title of lees previous blog Lee's mum fed me with a very nice tea of slow roast lamb while her Dad and I split a nice bottle of Rioja wine, her sister Dot also turned up for a chat and we rounded the evening off with the new edition of Top Gear (no Aston Martins on show) and a documentary about Krackatoa which was very interesting. Thanks to the wine I slept very well and got up to a breakfast of black tea as I was not allowed to eat anything.
Sandy, Lee's dad very kindly walked me up to the hospital where he himself worked for many many years and gave me a kind of history lesson on the way about the development of the hospital and the different departments he had worked in. A funny moment was when he said "what are all these schoolchilderen doing here?" only for me to point out they were probably the medical students - which they were! I returned to their house for lunch, in this case the famost Aberdeen butteries and lamb broth which, after a day of starving, went down very well. Lees mum makes great slow cooked lamb which I must discover how to replicate in our new oven.
Getting scanned itself meant lying down for an hour (no movement allowed) to let the radiactive sugar distribute itself around the body and then lying in the scanner for a further hour, I spent the time "visualising" nice possible futures hoping that somehow this would influence the results. One of the key things I have concluded from this adventure is to value and cherish family and friends more, the other perhaps less obvious one is to take more risks to enjoy life at the moment, hence you will see the alarm in Lee's blog as I comtemplate spending some savings on a silly (but not depreciating therefore not that silly) car to enjoy while I can.
Thankfully the effect of the steroids has diminished and my manic tendency to clear out my garage of household rubbish has mostly worn off, just in time to give Lee a well deserved rest (from me in manic mode) and for some new seats and carpets to arrive for my MG. This will get the inside looking as nice as the outside over the next few weekends in time for our big show at the start of July. Although this week is mostly going to be dreary medical stuff (with my first flying lesson thrown in on Wednesday) I can use the energy of chemo 6 on friday to restore my car in the recently cleared out garage, hopefully with sunshine and the radio to keep me in a good mood.
Finally thanks again to Sandy and Sylvia for looking after me in Aberdeen, I will keep you all posted as the results of the tests come in, for the moment I think it may just be "the eye of the storm" but I will keep my fingers crossed for the unlikly outcome of sailing off into the sunset !
Cheers for now
Gerry
(still with a DB9 screen saver, and without a DB9 budget)
Sunday, May 07, 2006
Come in and you'll have had your tea
Post from Lee
Good evening bloggers! I have control of the bridge tonight as Captain blogger is safely in the custody of my family in Aberdeen prior to going to get his PET scan at the hospital in Aberdeen tommorrow. My mum will be feeding him well known northern treats like stovies, cullen skink, clootie dumpling, butteries washed down by a wee dram or 2 (hence the title of this evenings blog).
Thank you all for your continued support, letters, phone calls and blog comments, G really appreciates them all and it helps him when he is having a low moment. Generally I am happy to tell you that he is coping very well so far and is focussing a lot of energy on sorting out lots of things in our house. I have labelled this activity sorting out "the boxes". I don't know if any of you out there can identify with this but we seem to have accumulated quite a number of "boxes" in our house that lurk in cupboards or in the attic and garages that are full of sentimental treasures gathered from various expeditions and past lives (some I confess still unpacked and sealed from Hong Kong trip in 2003!) G is determined to sort out the boxes and while I notice that many of my "treasures" are being selected for extermination you may be interested to know that a collection of car magazines dating from far too long ago, at least 200 science fiction books (some actual clones of each other) and a set of Japanese ceromonial swords are now pride of place in our new kitchen. I am beginning to recognise a pattern of behaviour now (enhanced by steroids following chemo treatment) of complete single-minded, manic, determined, tank commander, take no prisoners, absolutely no coffee breaks until the job is done sort of attitude from G to tackle "the boxes" on the home front. I expect there may well be some Gore associates out there who can identify with this :]
Interestingly G (always with an eye for an opportunity) has taken to changing the screen saver on our computer to a picture of a brand new Aston Martin (shaken not stirred) as if to create some kind of subliminal marketing devise to make me wish to become homeless to enable us to afford to accommodate this shiny new creature. When I got mildly alarmed about this the other day he did say he was prepared to down grade to a Ferrari (did he really think I was going to fall for that one!) Watch this space as he is due another steroid induced chemo on Friday so we may well all be homeless by Monday and G will be the proud new owner of........
Its good to talk and in my case its good to rant. I really must acknowledge some long-suffering relatives and friends who have put up with me over the past few weeks..my mum and dad, Dot, Alex, Nikki, Debbie and Liz. Last weekend at the height of the"sorting out the science fiction collection" I want to say thanks to Sarah and Odrian for agreeing with me and to Ian for letting me come round and sit in his shed and drink whisky, smoke some ciggys and have a really good rant and an "is it me?" type conversation and to Manus for making the mistake of asking me how I was at work (one hour coffee break later).
I am off to change the screen saver back to Dr Who.
Normal service will resume tommorrow. Have a good week.
Lee
Good evening bloggers! I have control of the bridge tonight as Captain blogger is safely in the custody of my family in Aberdeen prior to going to get his PET scan at the hospital in Aberdeen tommorrow. My mum will be feeding him well known northern treats like stovies, cullen skink, clootie dumpling, butteries washed down by a wee dram or 2 (hence the title of this evenings blog).
Thank you all for your continued support, letters, phone calls and blog comments, G really appreciates them all and it helps him when he is having a low moment. Generally I am happy to tell you that he is coping very well so far and is focussing a lot of energy on sorting out lots of things in our house. I have labelled this activity sorting out "the boxes". I don't know if any of you out there can identify with this but we seem to have accumulated quite a number of "boxes" in our house that lurk in cupboards or in the attic and garages that are full of sentimental treasures gathered from various expeditions and past lives (some I confess still unpacked and sealed from Hong Kong trip in 2003!) G is determined to sort out the boxes and while I notice that many of my "treasures" are being selected for extermination you may be interested to know that a collection of car magazines dating from far too long ago, at least 200 science fiction books (some actual clones of each other) and a set of Japanese ceromonial swords are now pride of place in our new kitchen. I am beginning to recognise a pattern of behaviour now (enhanced by steroids following chemo treatment) of complete single-minded, manic, determined, tank commander, take no prisoners, absolutely no coffee breaks until the job is done sort of attitude from G to tackle "the boxes" on the home front. I expect there may well be some Gore associates out there who can identify with this :]
Interestingly G (always with an eye for an opportunity) has taken to changing the screen saver on our computer to a picture of a brand new Aston Martin (shaken not stirred) as if to create some kind of subliminal marketing devise to make me wish to become homeless to enable us to afford to accommodate this shiny new creature. When I got mildly alarmed about this the other day he did say he was prepared to down grade to a Ferrari (did he really think I was going to fall for that one!) Watch this space as he is due another steroid induced chemo on Friday so we may well all be homeless by Monday and G will be the proud new owner of........
Its good to talk and in my case its good to rant. I really must acknowledge some long-suffering relatives and friends who have put up with me over the past few weeks..my mum and dad, Dot, Alex, Nikki, Debbie and Liz. Last weekend at the height of the"sorting out the science fiction collection" I want to say thanks to Sarah and Odrian for agreeing with me and to Ian for letting me come round and sit in his shed and drink whisky, smoke some ciggys and have a really good rant and an "is it me?" type conversation and to Manus for making the mistake of asking me how I was at work (one hour coffee break later).
I am off to change the screen saver back to Dr Who.
Normal service will resume tommorrow. Have a good week.
Lee
Thursday, May 04, 2006
Nearly done phase 1
Just a short update, things are going well here in Edinburgh, chemo symptoms seem to be past other than a bit of tiredness from time to time. The main focus now will be to get the scans and chemo 6 done next week before sitting down with the doctors the following week to find out how I am progressing. To be honest I am a bit apprehensive about that appointment, although the most likley thing is two further months of treatment, which would just be more of the same, I am begining to feel a bit like I felt when I had the first diagnosis of "cancer" but had not yet got to the definitive discription - its seems like I cannot really plan forward past this "event" in my head.
To counter this I have organised my first flying lesson on the 10th to give me something good to look forward to in the middle of the scans next week. I am also using the voucher for the 4*4 off road experience that Lee bought me for Christmas on the 28th to take some chums along and scare ourselves driving through rivers, mud and down cliffs. We have two dinner parties on the same weekend so that will be a "finished chemo phase 1" sort of celebration for me. If I have to get more then I will try to start just after that weekend so at least I have a weekend off when I am not just recovering from or just getting ready for chemo.
On other fronts things are pottering along well, I am still working about 50% of my normal rate mostly on the phone which keeps me from being bored in the house by myself. Once I get over the steroids (which makes me obsessive about nest building and sorting out the house to the distraction of all concerned specially Lee) then mentally I am fine and very positive. Lee and I are lucky to have good friends who take us out for odd beers and keep things normal/give us a rest and a laugh which has really helped.
So Lee is off to London today to give a lecture and I will be juggling my US phone conference and getting Poppy and Holly ready for Brownies and Guides after school, fortunatly we live beside the church which hosts these clubs so they can just run round once they have snacked and changed. I may go down to the borders to see my friend Neville over the weekend that will give me a chance to test the MG now the water leak has been (hopefully) fixed before going to Aberdeen on Sunday for my PET scan Monday.
Overall things are going pretty well here, the optimism of spring and the warm weather is affecting our moods!
Cheers
Gerry
To counter this I have organised my first flying lesson on the 10th to give me something good to look forward to in the middle of the scans next week. I am also using the voucher for the 4*4 off road experience that Lee bought me for Christmas on the 28th to take some chums along and scare ourselves driving through rivers, mud and down cliffs. We have two dinner parties on the same weekend so that will be a "finished chemo phase 1" sort of celebration for me. If I have to get more then I will try to start just after that weekend so at least I have a weekend off when I am not just recovering from or just getting ready for chemo.
On other fronts things are pottering along well, I am still working about 50% of my normal rate mostly on the phone which keeps me from being bored in the house by myself. Once I get over the steroids (which makes me obsessive about nest building and sorting out the house to the distraction of all concerned specially Lee) then mentally I am fine and very positive. Lee and I are lucky to have good friends who take us out for odd beers and keep things normal/give us a rest and a laugh which has really helped.
So Lee is off to London today to give a lecture and I will be juggling my US phone conference and getting Poppy and Holly ready for Brownies and Guides after school, fortunatly we live beside the church which hosts these clubs so they can just run round once they have snacked and changed. I may go down to the borders to see my friend Neville over the weekend that will give me a chance to test the MG now the water leak has been (hopefully) fixed before going to Aberdeen on Sunday for my PET scan Monday.
Overall things are going pretty well here, the optimism of spring and the warm weather is affecting our moods!
Cheers
Gerry
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