I just completed chemo 3 of the initial six, blood counts were good and tooth infection in remission so we were able to go ahead. This time I got the chief nurse Kirsty and she got the line in first time with no trauma which was excellent. One of the young ladies in the ward had four of here friends turn up for a "chemo party" with nice sandwiches and cheerful chat so we all joined in and the afternoon passed very easily. At the end of the treatment Lee and Poppy picked me up so we were able to show Poppy what goes on and introduce her to some of the other folks, this seemed to be interesting for her and lots of questions came out on the way home.
So far I feel fine as usual due to the steriods and the pretty powerful IV anti nausea treatment, if past experience is anything to go by Monday will be my slump day hopefully recovering to join in some phone calls to colleagues in Arizona Tue/Wed. The following week will be my "Easter holiday" from part time work ending in Chemo 4.
As we have just had the final electrical work done on the kitchen we can move back in filling cupboards and drawers then just wait for most of the painting which will be finished off next week. Finally done - we have a long list of deferred dinner parties to catch up on not to mention being able to use some of my time at home to get back into cooking proper meals for the family. It will be great to get the house back to normal something like normal! (and get my garage back to tinker with the car I am getting fed up with my tools being a mess and my books outside).
Our original plan was to go to the meeting in Flagstaff Arizona using air miles and get some skiing in this Easter, sadly that will be replaced with sorting kitchens and gardens if the weather holds out that might be OK actually !
Cheers
Gerry
Cheers
Gerry
Friday, March 31, 2006
Wednesday, March 29, 2006
Wobbly teeth and needles
Today was another snakes and ladders day as we head into the third of my first round of six chemotherapy treatments. Yesterday went well after taking some time out to celebrate my birthday on Monday I got stuck into work and was on conference calls late into the evening thanks to a corporate IT meeting in the USA, so I was feeling on top form.
I felt even better this morning when I was able to sit on the bed (samurai like in my imagination) stare at the needle and stick it into myself unassisted by Lee who was hovering nearby and hoping to get the chance herself. For me, who has a fear of needles this was an achievement but I guess a lot of you do it all the time (thinking medically not recreational) so its not such a big deal. One thing is for sure I could never become an IV drug user, its hard enough doing this when you have to.
Following that I headed of into work to meet a new German colleague who has just started working on my operations team in a critical role, poor man was a bit puzzled when I turned down his handshake but was OK after I explained the situation. Half way through the meeting the phone went and it was the hospital calling me in - I had noticed a twinge in one of my teeth overnight and earlier asked them if I was allowed to go to the dentist, I have now learnt that dental work and chemo are not well mixed.
To cut a long story of needles, blood tests, Xrays etc which consumed the afternoon in the hospital it was determined that I do have a small infection at the root of one tooth which unchecked could do a lot of damage, with my immune system running at about 5% of yours the chance of this happening is high, so I am now on elephant killer antibiotics which sadly come with "don't even sniff alcohol or you will regret it" health warnings. It was repeated by the nurse, the doctor and the pharmacy staff so I guess they really mean it.
So tomorrow is more bloodwork, self injections, and taking many different pills, hopefully none of that will stop me working normally through the day, taking my exercises round the park and focusing on the chemo, which I will get on Friday but only if the blood counts are up and the infection is reducing or gone. Fingers crossed.
My Uncle Harry got in touch to say that the Aston Martin old or new is not mundane, as I referred to it in the previous post, he lives near the factory and is a fan. I actually agree of course having wanted one since boyhood (and it looks like I still cannot afford one) so thanks for the correction Harry, nice to hear from you.
Cheers
Gerry (aka pincushion)
I felt even better this morning when I was able to sit on the bed (samurai like in my imagination) stare at the needle and stick it into myself unassisted by Lee who was hovering nearby and hoping to get the chance herself. For me, who has a fear of needles this was an achievement but I guess a lot of you do it all the time (thinking medically not recreational) so its not such a big deal. One thing is for sure I could never become an IV drug user, its hard enough doing this when you have to.
Following that I headed of into work to meet a new German colleague who has just started working on my operations team in a critical role, poor man was a bit puzzled when I turned down his handshake but was OK after I explained the situation. Half way through the meeting the phone went and it was the hospital calling me in - I had noticed a twinge in one of my teeth overnight and earlier asked them if I was allowed to go to the dentist, I have now learnt that dental work and chemo are not well mixed.
To cut a long story of needles, blood tests, Xrays etc which consumed the afternoon in the hospital it was determined that I do have a small infection at the root of one tooth which unchecked could do a lot of damage, with my immune system running at about 5% of yours the chance of this happening is high, so I am now on elephant killer antibiotics which sadly come with "don't even sniff alcohol or you will regret it" health warnings. It was repeated by the nurse, the doctor and the pharmacy staff so I guess they really mean it.
So tomorrow is more bloodwork, self injections, and taking many different pills, hopefully none of that will stop me working normally through the day, taking my exercises round the park and focusing on the chemo, which I will get on Friday but only if the blood counts are up and the infection is reducing or gone. Fingers crossed.
My Uncle Harry got in touch to say that the Aston Martin old or new is not mundane, as I referred to it in the previous post, he lives near the factory and is a fan. I actually agree of course having wanted one since boyhood (and it looks like I still cannot afford one) so thanks for the correction Harry, nice to hear from you.
Cheers
Gerry (aka pincushion)
Tuesday, March 28, 2006
Birthday Druggie Post
I managed to get through my birthday on Monday mostly by pretending for a day not to be ill and having a nice lunch, much of it "liquid" with Lorna and Lee as I decided to give myself a day off from being good. Unfortunatly both Lee and Poppy have sore throats so I have been washing hands and staying away from both of them - back on the couch and I did not even do anything wrong!. I was compensated by lots of nice cards and presents specially from Lee, Poppy and Holly.
Tomorrow is the first day of self injection, hence the druggie joke in the title, the syringes are in the fridge, and I need to pluck up the courage to stick the needle in tomorrow. Then I will have two days of injections and sore bones before hopefully getting chemo 3 administered on Wednesday (actually Friday sorry !) which will take me to the half way point for the first phase of the treatment.
Overall things are going pretty well for me, sickness has passed and hair is still attached to the top of my head so I am in good shape for the next treatment if I keep taking my, exercise, vegatables and supplements. Meditation CD's are being dusted off and I will need to get into the zone ready for Friday. Up till then it should be business as usual.
Cheers
Gerry
Tomorrow is the first day of self injection, hence the druggie joke in the title, the syringes are in the fridge, and I need to pluck up the courage to stick the needle in tomorrow. Then I will have two days of injections and sore bones before hopefully getting chemo 3 administered on Wednesday (actually Friday sorry !) which will take me to the half way point for the first phase of the treatment.
Overall things are going pretty well for me, sickness has passed and hair is still attached to the top of my head so I am in good shape for the next treatment if I keep taking my, exercise, vegatables and supplements. Meditation CD's are being dusted off and I will need to get into the zone ready for Friday. Up till then it should be business as usual.
Cheers
Gerry
Thursday, March 23, 2006
Andy takes the biscut !
Following my theme of crazy things colleagues have done following my diagnosis I have to report that my headcase friend Andy Warrender has finally lost the ability to differentiate between pain and fun (and this is not even a sleaze story). We began to doubt this when he took up running over the scottish mountians with neighbours as a hobby, but we were persuaded by the story of the summer barbie in the neighbourhood and after the usual few beers the chaps egging each other on. Then he took up running in Singapore, the worlds biggest outdoor sauna, and we began to doubt him a bit.
However he told me today that heard about my diagnosis, and other colleagues serious problems, all in one weekend in Salt Lake City where he happened to be with Pete Goss who has done a fair bit of motivational speaking for us http://www.solarnavigator.net/pete_goss_mbe.htm (Pete is by the way a real hero and a fantastic speaker on life and carpie diem). So the bold Andy decides he is going to live life to the full and go on a walking expedition to the North Pole next April ! Top that....
Apparently they have a few hundred miles to walk from their base camp, weather is tipically below -40oC and they are pulling their own stuff and camping, camping at -40oC ! So we are in awe, he is the chief nutter. Having said that knowing Andy and his legendary discipline he will manage it fine, wearing Goretex, having trained in gyms around the world while continuing to run our division with Rudi. Good luck Andy if you are reading this!
I am researching two much more mundane possibilities for my celebration, learning to fly or an old Aston Martin, we will have to see how the investigations turn out, at least neither put my fingers and toes at risk !
So we now have an open competition on "the biggest nutter" and another open suggestion forum on "what would you do to celebrate an all clear, or even do anyway ahead of time to live life to the full" I will be the referee just like in Rugby its my blog so my decision is final ( I will think of some prizes along the way) so far Andy is way out in front, followed by Johns M5, the only person who could come close might be Kevin in Hong Kong - any crazy plans to pitch in with Kevin ?
Cheers for now time for "House" on the TV, by the way I am fine, worked all day and keeping busy so looks like chemo2 is done ! Next challenge is learning to inject myself with growth factor ahead of chemo3, the syringes are sitting in the fridge....but thats next weeks challenge.
Gerry
However he told me today that heard about my diagnosis, and other colleagues serious problems, all in one weekend in Salt Lake City where he happened to be with Pete Goss who has done a fair bit of motivational speaking for us http://www.solarnavigator.net/pete_goss_mbe.htm (Pete is by the way a real hero and a fantastic speaker on life and carpie diem). So the bold Andy decides he is going to live life to the full and go on a walking expedition to the North Pole next April ! Top that....
Apparently they have a few hundred miles to walk from their base camp, weather is tipically below -40oC and they are pulling their own stuff and camping, camping at -40oC ! So we are in awe, he is the chief nutter. Having said that knowing Andy and his legendary discipline he will manage it fine, wearing Goretex, having trained in gyms around the world while continuing to run our division with Rudi. Good luck Andy if you are reading this!
I am researching two much more mundane possibilities for my celebration, learning to fly or an old Aston Martin, we will have to see how the investigations turn out, at least neither put my fingers and toes at risk !
So we now have an open competition on "the biggest nutter" and another open suggestion forum on "what would you do to celebrate an all clear, or even do anyway ahead of time to live life to the full" I will be the referee just like in Rugby its my blog so my decision is final ( I will think of some prizes along the way) so far Andy is way out in front, followed by Johns M5, the only person who could come close might be Kevin in Hong Kong - any crazy plans to pitch in with Kevin ?
Cheers for now time for "House" on the TV, by the way I am fine, worked all day and keeping busy so looks like chemo2 is done ! Next challenge is learning to inject myself with growth factor ahead of chemo3, the syringes are sitting in the fridge....but thats next weeks challenge.
Gerry
Devil Free
Thankfully the eye drops worked just as they said and the red eye devil is no more. In fact I recovered fast enough to go to work for a bit yesterday to see some US colleagues who were visiting and even took the MG for an evening run to a quiet country pub last night. Hopefully that should be all the drama over until friday week when chemo 3 is scheduled. I will post if anything happens so dont worry if things are quiet on the board.
Cheers
Gerry
Cheers
Gerry
Tuesday, March 21, 2006
Snakes Ladders and Tasmania Devils
Having wimped out yesterday I was fully intentioned to make the most of today right up to the point where I tried to open my eyes this morning. This failed to happen on the right side which is a weird feeling, after much washing and feeling like my eyelashes had all fallen into my eye (my opening, or non opening, theory) I was confronted in the mirror by a red slit eye monster which reminded me of the tasmainian devil cartoon except it was me muttering in the mirror.
In the game of snakes and ladders which is recovery from chemo I had hit a minor snake in the form of an eye infection of some sort. Of course this is no big deal normally, but if you have a minimal immune system its one of those of those "do not pass go - go straight to hospital (after talking to them on the phone) game plays. Basically because unchecked by normal defenses the trivial can become the complex. So most of the rest of the day was spent getting eyes washed, sampled, dripped on, looked at, chins rubbed in that all knowing medical way - all with one hour waits in the friendly cancer ward. At least the receptionist and the tea lady know me and my nurses all came for a look at different times (one of the benefits of being as noticeable as me, extra tea cakes from the staff !!).
Now after three rounds of eye drops I am feeling much better and some white is showing in the eye, in between the red, and things seem to be under control. Better than that my appetite has returned and I feel pretty well so hopefully I will be back on line to work tomorrow and start getting fit for the next time. Good news is sink, washing machine, dishwasher and cooker came on line today for the first time, only details and decoration needed in the kitchen hooray (no doubt that will take a few weeks but we are pleased.
So far I have managed to avoid going into third level meds - first level is the chemo to fix the Hodgkins cancer, second level is the nausea meds due to the chemo, third level would be the anti-acids or laxatives to overcome the effect of the nausea etc etc - some of the patients can get to level 5 I think at that stage you can get seriously confused about what is cause and effect. Hence the natural stuff like good diet, Eassic tea etc is all about keeping strong enough not to get to level 3.
So another day were good intentions did not pay off on the work front, however as I write this at 11pm I feel pretty good and so with a solid nights sleep I may be back on the ladders and avoid the snakes or tasmanian devils !
Cheers
Gerry
In the game of snakes and ladders which is recovery from chemo I had hit a minor snake in the form of an eye infection of some sort. Of course this is no big deal normally, but if you have a minimal immune system its one of those of those "do not pass go - go straight to hospital (after talking to them on the phone) game plays. Basically because unchecked by normal defenses the trivial can become the complex. So most of the rest of the day was spent getting eyes washed, sampled, dripped on, looked at, chins rubbed in that all knowing medical way - all with one hour waits in the friendly cancer ward. At least the receptionist and the tea lady know me and my nurses all came for a look at different times (one of the benefits of being as noticeable as me, extra tea cakes from the staff !!).
Now after three rounds of eye drops I am feeling much better and some white is showing in the eye, in between the red, and things seem to be under control. Better than that my appetite has returned and I feel pretty well so hopefully I will be back on line to work tomorrow and start getting fit for the next time. Good news is sink, washing machine, dishwasher and cooker came on line today for the first time, only details and decoration needed in the kitchen hooray (no doubt that will take a few weeks but we are pleased.
So far I have managed to avoid going into third level meds - first level is the chemo to fix the Hodgkins cancer, second level is the nausea meds due to the chemo, third level would be the anti-acids or laxatives to overcome the effect of the nausea etc etc - some of the patients can get to level 5 I think at that stage you can get seriously confused about what is cause and effect. Hence the natural stuff like good diet, Eassic tea etc is all about keeping strong enough not to get to level 3.
So another day were good intentions did not pay off on the work front, however as I write this at 11pm I feel pretty good and so with a solid nights sleep I may be back on the ladders and avoid the snakes or tasmanian devils !
Cheers
Gerry
Sunday, March 19, 2006
Chemo crash as usual
Once the steroids had worn off I crashed just like last time, so from midnight last night until noon today slept like a log with short water and nausea pill wake ups. I thought I was OK but after a few hours awake I felt very weak and sick so went back to sleep on the couch under the duvet missing the middle of the grand prix. The sickness seems to be prolonged this time but once again the meds seem to hold me back, but its not good for the appetite. So far hair is still attached to my head and other places but others report this may not last! Hopefully I will be in better shape tomorrow and will make it for the occasional day to work next week as I have some US colleagues visiting (with my disinfectant wipes to keep me germ free!)
Kitchen is beginning to look good and Lee is out shopping, worrying about accessories and stools, so we hope to be back close to normal by the end of the week on the house front. The most amusing element of the weekend is that Poppy had sex ed on Friday and has spent most of the time saying "Dad I know what you did....uugh" which has me in stitches.
Got through to Monday and this was the first day I had to listen to my body and take it easy, intended to work and catch up on some backlog but after an hour out of bed found myself having to lie down on the couch. Wobbled to lunch with my friend Nick but felt worse and worse as we walked 100ft or so back to the house and just made it to bed for the rest of the afternoon. Terminator 3 replay and a bite to eat was all I could manage tonight before typing these words and heading back to pit. Hopefully some energy will return tomorrow as this feeling sick is pretty boring!
I am jealous of Johns M5 as well, but not of David having to head off to china !
Cheers for now!
Gerry
Kitchen is beginning to look good and Lee is out shopping, worrying about accessories and stools, so we hope to be back close to normal by the end of the week on the house front. The most amusing element of the weekend is that Poppy had sex ed on Friday and has spent most of the time saying "Dad I know what you did....uugh" which has me in stitches.
Got through to Monday and this was the first day I had to listen to my body and take it easy, intended to work and catch up on some backlog but after an hour out of bed found myself having to lie down on the couch. Wobbled to lunch with my friend Nick but felt worse and worse as we walked 100ft or so back to the house and just made it to bed for the rest of the afternoon. Terminator 3 replay and a bite to eat was all I could manage tonight before typing these words and heading back to pit. Hopefully some energy will return tomorrow as this feeling sick is pretty boring!
I am jealous of Johns M5 as well, but not of David having to head off to china !
Cheers for now!
Gerry
Friday, March 17, 2006
Chemo 2 done
Thankfully blood counts went up nearly 10 times well into the safe zone and chemo 2 has just been administered. No issues and met some really nice people in the ward so the afternoon passed smoothly for mum and I. Probably on the "steroid high" as last time so I am taking the nausia meds just in case and looking forward to Rugby tomorrow
Gerry
Gerry
Thursday, March 16, 2006
Comments fixed
Hopefully the comments section is fixed it was accidently set to "team members only" now reset to anyone. Growth factor is working if the bone pain it has given me is any indicator lets hope the counts are up sufficiently tomorrow.
Cheers
Gerry
Cheers
Gerry
Wednesday, March 15, 2006
Neutrophils !!
Apparently my chemo is working, thats the good news, bad news is it has nuked my immune system to below the minimum Neutrophil count allowed. So no chemo for me today, instead I get growth factor injections for the next two days to boost my system up to the minimum. The other fact is that I am now really immune supressed so lots of hand washing and surface cleaning is needed to prevent infection.
Mum is here now and safely set up in a local B&B, as Holly is sick again (so needs to stay away from me) mum is helping out as Hollys nurse, we went out for dinner last night and had a good chat so I had a good sleep last night and felt very positive today going into the ward. In between tests mum and I went to the Maggies Center which is a really nice cancer support unit we have here in Edinburgh. That turned out really well as mum got some information which may be of use to one of her friends in Ireland about cancer support over there.
So back into normal routine for me, Lee has offered to do the injections for me as she is used to doing cows, however she seemed very pleased with the idea of sticking needles in me !
Let you know more on Friday
Gerry
Mum is here now and safely set up in a local B&B, as Holly is sick again (so needs to stay away from me) mum is helping out as Hollys nurse, we went out for dinner last night and had a good chat so I had a good sleep last night and felt very positive today going into the ward. In between tests mum and I went to the Maggies Center which is a really nice cancer support unit we have here in Edinburgh. That turned out really well as mum got some information which may be of use to one of her friends in Ireland about cancer support over there.
So back into normal routine for me, Lee has offered to do the injections for me as she is used to doing cows, however she seemed very pleased with the idea of sticking needles in me !
Let you know more on Friday
Gerry
Tuesday, March 14, 2006
Wobbling into the zone
Today has been an odd sort of day, not one of the cheerful type which has been typical of this blog so far. Getting my head together for the next chemo has been harder than expected mostly due to a fear of needles and getting a good line in. I went for the blood samples today and the nurse at the local doctors went right through one vein and then pretty comprehensively messed around with a second before getting the flow right. It may sound silly to you but the number of samples I have had taken over the last few weeks means good veins are in short supply, once they are blown out in this way they cannot be used again for 3 weeks or so. Leaky veins are no good for chemo as the chemicals cause real damage if they get into tissue in the concentrated form. The alternative is to have a line implanted in my chest however that in itself is another source of infection and needs a lot of maintenance so I prefer not to go down that path. I will be glad when someone invents the local anesthetic chapstick to numb the skin and a vein seeking imager so that folks do not miss so much. Its funny that Lance Armstrong also said that emotionally its all the invasions and needles that get to you more than the "big stuff".
So that has disturbed my harmony a bit this morning, it added to some bad news last night when I heard that Caity who posts on the Hodgkins board has died. That brought home firmly the reality of the 10 percent who end up on the wrong side of the line. The board is packed with good advice and really encouraging stories are by far the majority. What is amazing is the number of folks who go undiagnosed for so long. http://forums.webmagic.com/ubbthreads/postlist.php?Cat=0&Board=UBB1&page=0
So after the doctors I must confess I crawled under the duvet for a bit feeling sorry for myself, but then gave myself a good talking to, and now after breakfast and coffee am going to go for a run and some meditation to get it back together.
I got some nice CD's from my aunt and uncle including my favorite Puccini's great arias which is loading into my Ipod as I type, that should be good for the hospital tomorrow along with my meditation recordings.
Mum is due in tonight, it will be good to catch up with her and chat properly. When I was young I spent a lot of time in hospital and I always remember she would be there when I was put to sleep and when I woke up, every time, no matter how poorly or sick I was. When she found out about Hodgkins she wanted to come with me to the hospital for one of the chemos, Lee went for the first one and now mum is coming for the second, although the chemo is actually pretty boring (one they get a good line in) its kind of a ritual for both of us and I am glad we are doing it.
So that's sort of worked my bad mood out a bit on the keyboard, and I am feeling better now, time for a run in the fresh air and tia chi to build up the good mood before some work calls this afternoon.
So that has disturbed my harmony a bit this morning, it added to some bad news last night when I heard that Caity who posts on the Hodgkins board has died. That brought home firmly the reality of the 10 percent who end up on the wrong side of the line. The board is packed with good advice and really encouraging stories are by far the majority. What is amazing is the number of folks who go undiagnosed for so long. http://forums.webmagic.com/ubbthreads/postlist.php?Cat=0&Board=UBB1&page=0
So after the doctors I must confess I crawled under the duvet for a bit feeling sorry for myself, but then gave myself a good talking to, and now after breakfast and coffee am going to go for a run and some meditation to get it back together.
I got some nice CD's from my aunt and uncle including my favorite Puccini's great arias which is loading into my Ipod as I type, that should be good for the hospital tomorrow along with my meditation recordings.
Mum is due in tonight, it will be good to catch up with her and chat properly. When I was young I spent a lot of time in hospital and I always remember she would be there when I was put to sleep and when I woke up, every time, no matter how poorly or sick I was. When she found out about Hodgkins she wanted to come with me to the hospital for one of the chemos, Lee went for the first one and now mum is coming for the second, although the chemo is actually pretty boring (one they get a good line in) its kind of a ritual for both of us and I am glad we are doing it.
So that's sort of worked my bad mood out a bit on the keyboard, and I am feeling better now, time for a run in the fresh air and tia chi to build up the good mood before some work calls this afternoon.
Cheers
Gerry
PS I managed to change the settings so you do not have to join to make comments, hope it works, also worked out how to do photos as you can see below.
Monday, March 13, 2006
Freedom Fries
What do the Scots like best - England getting wasted on the field by Scotland, next best England getting wasted by someone else, in this case France. Personally I am a bit dubious about France, probably my American buddies have rubbed off some of their prejudice, which created Freedom fries instead of the traditional French Fries after they argued about the US invading the wrong country.
Speaking of freedom fries my self discipline collapsed this weekend, after a few months of not eating beef or lamb the lure of a hamburger caught me out on Friday, rapidly followed with a few beers/snacks to accompany the Rugby on Saturday and Sunday, capped off with a big piece of Kentucky fried chicken....My organic conscience is groaning in despair.
Sadly back to porridge, supplements, teas and grinding grass (really), jogging round the park (which I did keep up) and meditation this morning to atone for my sins. Hopefully three organic/meditation/exercise days is enough to detox in time for Wednesday afternoons infusions.
Mum is due over tomorrow evening, which will be busy with tests etc which are done the day before the chemo to ensure my immune system is strong enough to take the hit. Therefore the next post, hopefully from me, will be Wed evening.
Cheers for now
Gerry
Speaking of freedom fries my self discipline collapsed this weekend, after a few months of not eating beef or lamb the lure of a hamburger caught me out on Friday, rapidly followed with a few beers/snacks to accompany the Rugby on Saturday and Sunday, capped off with a big piece of Kentucky fried chicken....My organic conscience is groaning in despair.
Sadly back to porridge, supplements, teas and grinding grass (really), jogging round the park (which I did keep up) and meditation this morning to atone for my sins. Hopefully three organic/meditation/exercise days is enough to detox in time for Wednesday afternoons infusions.
Mum is due over tomorrow evening, which will be busy with tests etc which are done the day before the chemo to ensure my immune system is strong enough to take the hit. Therefore the next post, hopefully from me, will be Wed evening.
Cheers for now
Gerry
Saturday, March 11, 2006
Gentlemen prefer (to be) blonde
Post from Lee/Poppy/Holly
Overheard on the way back through the park after school last week.
Holly to Friend: "My dad has got to take some medicine that will make his hair fall out and he will be really baldy very soon..maybe even tommorrow"
Friend: "Thats terrible"
Holly: " No its OK because when his hair grows back its going to be blonde!"
Friend: "Thats all right then"
Ever cloud has a silver lining.
L, P and H
Overheard on the way back through the park after school last week.
Holly to Friend: "My dad has got to take some medicine that will make his hair fall out and he will be really baldy very soon..maybe even tommorrow"
Friend: "Thats terrible"
Holly: " No its OK because when his hair grows back its going to be blonde!"
Friend: "Thats all right then"
Ever cloud has a silver lining.
L, P and H
Friday, March 10, 2006
Tapas, rugby and Snow
Short update as all is well here. Kitchen is 50% complete and looking good but will not be operational for mums visit on Tuesday so alternate B&B accomidation is being sourced so she can be comfortable, and get a cooked breakfast, before joining me on the next chemical experiment on Wednesday.
Without kitchen the weekend is shaping up well, Spanish food tonight, Rugby international (Scotland vs Ireland) tomorrow with new Grand Prix practice system before. Lee is heading out to a concert so that will be a video/feet up night in for the rest of us. Then on sunday we have been offered Brunch by friends Jim and Sarah which may be taken up by me if the forecased snow cancels the MG club run to St Boswell and the first grand prix of the year to fit in around all that. Hopefully the run will be on and we will be sliding sidways on backroads before a nice pub lunch (must remember the tow rope and possibily the jeep just in case we have to pull anyone out!)
I think I will cheer for scotand this time as they did so well two weeks ago, have a nice one dont expect much blogging over the weekend as I am going to relax prior to getting my head together on Mon and Tue for the next chemo.
Cheers
Gerry
Without kitchen the weekend is shaping up well, Spanish food tonight, Rugby international (Scotland vs Ireland) tomorrow with new Grand Prix practice system before. Lee is heading out to a concert so that will be a video/feet up night in for the rest of us. Then on sunday we have been offered Brunch by friends Jim and Sarah which may be taken up by me if the forecased snow cancels the MG club run to St Boswell and the first grand prix of the year to fit in around all that. Hopefully the run will be on and we will be sliding sidways on backroads before a nice pub lunch (must remember the tow rope and possibily the jeep just in case we have to pull anyone out!)
I think I will cheer for scotand this time as they did so well two weeks ago, have a nice one dont expect much blogging over the weekend as I am going to relax prior to getting my head together on Mon and Tue for the next chemo.
Cheers
Gerry
Wednesday, March 08, 2006
Steering wheels and carbs
Bored with staying in the house and working for most of the day I got my old MGB GT out tonight and, risking the salt spray and the immune system, went to our monthly MG club meeting. Bad news was one of the stalwart club members had passed away recently which was sad and kind of a theme of this week.
Never the less managed to get a nice wooden steering wheel for the car in the second hand charity trade bin, and chatted with some folks who have done a lot of classic car rallying which I would really like to take up after all this stuff is over. I have been putting it off for years so I think this is going to be on my firm plan list for next year as a major post chemo treat. I was really jealous as tales of Le Man and Spa flat out in various old MG's were swapped across the table. Researching how to really get into this will be a good way to use some of the spare time not spent on British Airways or in Airports over the next six months.
The MG has been a great hobby for me mostly because it was a crap impulse buy when I came back from Hong Kong. I had one when I was younger and really enjoyed it so was tempted by an overpriced but pretty one on a garage forecourt. As soon as I got it the rear suspension collapsed and had to be rebuilt (by my own hand) once I did the rear I got stuck into the front to get the handling balanced. Four months after the suspension rebuild the engine blew a valve and one thing led to another so now it has new competition level engine, gear box and refurbished engine bay, carbs, ignition etc etc. Holly has been my helper from time to time as she enjoys painting the bits before I reassemble them, usually with much swearing from under the car, and encouragment to Holly or Poppy not to tell mum. However as an antidote to meetings, computers and powerpoint presentations rebuilding an old car is very theraputic. All I need is a cardigan with elbow pads and a pipe to be properly old.
Last nights post seems to have created a "gerrys nickname" competition in my work email tray - it seems like there are much worse ones out there than have been divuleged so far, may need to be a post all to itself, Yoda may have been too nice, Darth has been suggested as a better fit.
Perhaps we can run a sweepstake
Cheers for now
Gerry
Never the less managed to get a nice wooden steering wheel for the car in the second hand charity trade bin, and chatted with some folks who have done a lot of classic car rallying which I would really like to take up after all this stuff is over. I have been putting it off for years so I think this is going to be on my firm plan list for next year as a major post chemo treat. I was really jealous as tales of Le Man and Spa flat out in various old MG's were swapped across the table. Researching how to really get into this will be a good way to use some of the spare time not spent on British Airways or in Airports over the next six months.
The MG has been a great hobby for me mostly because it was a crap impulse buy when I came back from Hong Kong. I had one when I was younger and really enjoyed it so was tempted by an overpriced but pretty one on a garage forecourt. As soon as I got it the rear suspension collapsed and had to be rebuilt (by my own hand) once I did the rear I got stuck into the front to get the handling balanced. Four months after the suspension rebuild the engine blew a valve and one thing led to another so now it has new competition level engine, gear box and refurbished engine bay, carbs, ignition etc etc. Holly has been my helper from time to time as she enjoys painting the bits before I reassemble them, usually with much swearing from under the car, and encouragment to Holly or Poppy not to tell mum. However as an antidote to meetings, computers and powerpoint presentations rebuilding an old car is very theraputic. All I need is a cardigan with elbow pads and a pipe to be properly old.
Last nights post seems to have created a "gerrys nickname" competition in my work email tray - it seems like there are much worse ones out there than have been divuleged so far, may need to be a post all to itself, Yoda may have been too nice, Darth has been suggested as a better fit.
Perhaps we can run a sweepstake
Cheers for now
Gerry
Tuesday, March 07, 2006
Fast Summary
This post is intended as a fast summary for those who get the link for the first time and just want to get the basic story so far. I will try to edit it from time to time to keep it fresh.
I was diagnosed with Hodgkins Lymphoma which is a type of cancer, on the 20th of Feb 2006. The first indication of this was picked up on a CAT scan on the 25th of January which was done for an unrelated reason, checking for the aortal problem which killed my dad and can be passed on to male relatives. The consultant told me I had "swollen glands in my chest" on the 30th of Jan and grounded me while more tests and scans were done. By mid Feb the medics were talking about tumours instead of swollen glands and I had a rather painful biopsy ( ie big needle from collarbone to the tumour near my heart via the lung to get a sample). At this stage we had moved up to "lymphoma" but were growing cells to see which type. The final conclusion was Hodgkins Lymphoma, normal type (there are four), Stage 2A.
That means it was small, caught early and this is one of the most treatable forms of cancer in the modern day. Untreated it is deadly in pretty short order (18months mean time to death), but the paradox is that because it grows so fast and agressivily it sucks up chemotherapy very strongly and therefore has a high success in first treatment (around 80 percent). I am in the lower risk area due to my age and the early stage of the disease.
The treatment was chemotherapy which started on the 1st of March 06 and repeated six times every 14 days for the following three months. Initially the chemo went well and my reactions were pretty mild compared to the possibilities. After the three months there was a critical PET scan which could have resulted in that being the end of the treatment if it was clear. In an emotional rollercoaster I was first told it was clear and then later told that further expert examination had detected some small amount of possible residual cancer activity. This meant that I did not qualify for treatment to stop there and had to go on to further chemo and then radiotherapy. The good thing about radiotherapy in theory was that it halfed the chance of the Hodgkins reappearing (from one in five to one in ten or so) and the new techniques have minimised the chance of secondary cancers as a result of the treatment.
So that all went well, I found the radiotherapy easy going and treatment was completed by the start of August 06, following a few weeks holiday I was back at work pretty much full time from the start of September ( I had been working about half time throughout the treatment). I set off to visit the various factories I am responsible for around the world and at the end of November had just returned from visiting the team in Shenzhen when I went to the hospital for the results of my "routine" monitoring CT scan.
Much to my surprise I was told that the cancer was not gone, I was not in the clear, and the cancer had jumped to an adjacent node probably just before the radiotherapy started and had been growing there since the summer. So although the original site of the cancer seems to be clear I have a new lymph gland which contains the disease. Further tests showed that the cancer had spread to multiple lymph nodes and was quite serious, the doctor at that time gave me a 40 percent chance which was quite sobering.
So the treatment for this situation is "industrial scale" chemo (doctors words not mine) to get the cancer into remission and then stem cells are taken from my bone marrow and stored. As I write this in March 2007 this has occured and although I was pretty sick it seems to have worked the cancer has disappeared and the stem cells were extracted successfully. Next step is to up the chemo level with the dreaded BEAM chemo which will kill off any lurking cancer cells along with all my bone marrow and all the bits of me that make my blood/fight infection. At this time I will be in a special isolation unit in the hospital. Once the chemo has done its bit I will get my stem cells back and hopefully grow back a healthy blood/immune system. This is expected to take a few months the first of which is full time in the hospital unit. The good news is the cancer having reacted well to the chemo by dying, and the stem cells being successfully harvested, puts my odds up into a much healther region.
Now adding a paragraph some time later the BEAM chemo was really horrible as predicted, everything which can go wrong with your body goes wrong all at once and existance is hour to hour in the deep times when you have no natural immune system. Never the less compared to many I got through it well, the transplant took, the blood counts returned and I started the long slog of recovery which took four months before a gentle return to work and nine months until I felt properly well again. Now a year later than that and two scans clear I am in good shape feeling well and fully immersed in normal life again, about once every three or four months I update this blog to remind myself how lucky I am and to keep the story going for those of you who read these things as preparation for your own journey.
This is a journey which we have walked through step by step, thats still the orientation we are taking, hence until any other possible future occurs we are not wasting too much energy or mindspace on it. I have managed to have as some fun over the months of treatment and you all have been a great part of making that happen by being as normal as is possible and being patient when its not possible and resting is necessary.
Hope this saves you a lot of reading as the blog proper is getting a bit long, the other two links on the side of the page are a good start if you want to know more about the disease or how to help.
Cheers
Gerry
I was diagnosed with Hodgkins Lymphoma which is a type of cancer, on the 20th of Feb 2006. The first indication of this was picked up on a CAT scan on the 25th of January which was done for an unrelated reason, checking for the aortal problem which killed my dad and can be passed on to male relatives. The consultant told me I had "swollen glands in my chest" on the 30th of Jan and grounded me while more tests and scans were done. By mid Feb the medics were talking about tumours instead of swollen glands and I had a rather painful biopsy ( ie big needle from collarbone to the tumour near my heart via the lung to get a sample). At this stage we had moved up to "lymphoma" but were growing cells to see which type. The final conclusion was Hodgkins Lymphoma, normal type (there are four), Stage 2A.
That means it was small, caught early and this is one of the most treatable forms of cancer in the modern day. Untreated it is deadly in pretty short order (18months mean time to death), but the paradox is that because it grows so fast and agressivily it sucks up chemotherapy very strongly and therefore has a high success in first treatment (around 80 percent). I am in the lower risk area due to my age and the early stage of the disease.
The treatment was chemotherapy which started on the 1st of March 06 and repeated six times every 14 days for the following three months. Initially the chemo went well and my reactions were pretty mild compared to the possibilities. After the three months there was a critical PET scan which could have resulted in that being the end of the treatment if it was clear. In an emotional rollercoaster I was first told it was clear and then later told that further expert examination had detected some small amount of possible residual cancer activity. This meant that I did not qualify for treatment to stop there and had to go on to further chemo and then radiotherapy. The good thing about radiotherapy in theory was that it halfed the chance of the Hodgkins reappearing (from one in five to one in ten or so) and the new techniques have minimised the chance of secondary cancers as a result of the treatment.
So that all went well, I found the radiotherapy easy going and treatment was completed by the start of August 06, following a few weeks holiday I was back at work pretty much full time from the start of September ( I had been working about half time throughout the treatment). I set off to visit the various factories I am responsible for around the world and at the end of November had just returned from visiting the team in Shenzhen when I went to the hospital for the results of my "routine" monitoring CT scan.
Much to my surprise I was told that the cancer was not gone, I was not in the clear, and the cancer had jumped to an adjacent node probably just before the radiotherapy started and had been growing there since the summer. So although the original site of the cancer seems to be clear I have a new lymph gland which contains the disease. Further tests showed that the cancer had spread to multiple lymph nodes and was quite serious, the doctor at that time gave me a 40 percent chance which was quite sobering.
So the treatment for this situation is "industrial scale" chemo (doctors words not mine) to get the cancer into remission and then stem cells are taken from my bone marrow and stored. As I write this in March 2007 this has occured and although I was pretty sick it seems to have worked the cancer has disappeared and the stem cells were extracted successfully. Next step is to up the chemo level with the dreaded BEAM chemo which will kill off any lurking cancer cells along with all my bone marrow and all the bits of me that make my blood/fight infection. At this time I will be in a special isolation unit in the hospital. Once the chemo has done its bit I will get my stem cells back and hopefully grow back a healthy blood/immune system. This is expected to take a few months the first of which is full time in the hospital unit. The good news is the cancer having reacted well to the chemo by dying, and the stem cells being successfully harvested, puts my odds up into a much healther region.
Now adding a paragraph some time later the BEAM chemo was really horrible as predicted, everything which can go wrong with your body goes wrong all at once and existance is hour to hour in the deep times when you have no natural immune system. Never the less compared to many I got through it well, the transplant took, the blood counts returned and I started the long slog of recovery which took four months before a gentle return to work and nine months until I felt properly well again. Now a year later than that and two scans clear I am in good shape feeling well and fully immersed in normal life again, about once every three or four months I update this blog to remind myself how lucky I am and to keep the story going for those of you who read these things as preparation for your own journey.
This is a journey which we have walked through step by step, thats still the orientation we are taking, hence until any other possible future occurs we are not wasting too much energy or mindspace on it. I have managed to have as some fun over the months of treatment and you all have been a great part of making that happen by being as normal as is possible and being patient when its not possible and resting is necessary.
Hope this saves you a lot of reading as the blog proper is getting a bit long, the other two links on the side of the page are a good start if you want to know more about the disease or how to help.
Cheers
Gerry
Still OK over here
I took a few days off to let Lee have a shot at blogging (she is much better at it than me really) but some of you got concerned so this is just a post to say everything is actually OK here, I am feeling fine and have managed to work for the last two days pretty much 8am to 4pm, even back to jogging, gently, again.
I am not expecting significant updates in the next week so no blog means no problem for future reference. I managed to get the diagnosis post onto the link on the side as a lot of folk are reading this for the first time and that is a better place to start, tonight I will try to get the background stuff on Hodgkins over there too. If you are a new reader go to Feb archive to see the start of the blog and the background until I can get the link fixed.
On a totally prosaic note, because in reality life goes on, this last two days I have been mostly working on our compensation process. In Gore we have a very intensive system which takes the views of all associates in a group in making a rounded estimate of the relative contribution of each member to the success of our enterprise, with suggestions for improvement. Once we discuss and debate how each person is doing and how they can improve we "rank" the associates in order of contribution (you get to step out of the room when you are discussed). Finally, a smaller sub-group of experienced associates decide on pay, with this ranking as the major factor considered. So, in reality, with appropiate checks and balances to ensure fairness, our associates collectivily determine how well any one person is paid, and this in turn should bear a direct relationship, over time, to how much they contribute to the success of Gore. Its great to be able to still take part in these discussions as about half my working time is now spent on associate development and these forums are a great place to see how the folks I coach are really doing in the eyes of colleagues and internal customers (I will bore you all with Gore stuff from time to time, that was this weeks installment, but this sort of stuff is why we do so well as a company)
I am still learning lots each day about how this illness affects life in many unexpected ways, for instance it really helps other friends talk about their own problems and concerns, either personal or family. We have had a number of people, perhaps who are not very close to me personally, suddenly burst into tears at hearing the news and we have discovered that they have themselves some significant issues or concern just under the surface. Another effect is a lot of friends going to the doctors for check ups on issues they were putting off, which by the way is good advice as I nearly did not bother with the check up that caught this. More expensive is the "live life fully reaction", one close friend, John, told me today has gone out and bought a BMW M5 on the basis that "you only live once enjoy it while you can" brought on by my news (perhaps he just needed an excuse for his wife..). Good news is I am promised a test drive, lets hope its round Knockhill !
I had a lot of chats with friends who have just revealed that they have themselves been through chemotherapy, or who have family in the same situation. Its been very energising and a bit saddening to realise how common cancer is, and how many people go through all the ups and downs we are just working through, and still emerge from the other side, in many cases strengthened and more balanced. Its a bit humbling to realise just how many people have coped quietly with much more serious situations, just like seeing the young people smiling in the chemo ward last week. So while we find it good therapy to write things out in this blog, respect and admiration to all of you who cope or have coped in your own quieter way, and hopefully you dont mind too much the theraputic indulgence of these pages, I do really understand that many of you have been through much, much worse.
What has made this "sieze the day" feeling even more real to us is that Lee's friends partner died suddenly just a few weeks ago, with no warning, of a heart problem. She was a similiar age to us with a young family and both our families went walking for a day and had dinner together just days before, so its been a very sad and disturbing time. It very much reminded us of Campbell, Brids husband who passed away in similiar circumstances five or so years ago.
So I guess thats enough deep stuff for one night, we are off to our local italian resturant which Holly calls "pizza mans" but is actually called Genaros for some nice food, we still have to eat, and still do not have an operational kitchen, so eating out or microwave are our main choices for the next week. Hopefully we are near the end of that project and we can tell already that it will make a real difference to the flat to have a nice family kitchen. As usual the kids will bring us down to earth with earnest discussions about what Poppy should do about a friend who is flirting "outrageously" with her possible boyfriend, and how much Holly will get from the tooth fairy if her wobbly tooth finally falls out.....7 is a much more mercanary age in some ways.
Cheers for today
Gerry
I am not expecting significant updates in the next week so no blog means no problem for future reference. I managed to get the diagnosis post onto the link on the side as a lot of folk are reading this for the first time and that is a better place to start, tonight I will try to get the background stuff on Hodgkins over there too. If you are a new reader go to Feb archive to see the start of the blog and the background until I can get the link fixed.
On a totally prosaic note, because in reality life goes on, this last two days I have been mostly working on our compensation process. In Gore we have a very intensive system which takes the views of all associates in a group in making a rounded estimate of the relative contribution of each member to the success of our enterprise, with suggestions for improvement. Once we discuss and debate how each person is doing and how they can improve we "rank" the associates in order of contribution (you get to step out of the room when you are discussed). Finally, a smaller sub-group of experienced associates decide on pay, with this ranking as the major factor considered. So, in reality, with appropiate checks and balances to ensure fairness, our associates collectivily determine how well any one person is paid, and this in turn should bear a direct relationship, over time, to how much they contribute to the success of Gore. Its great to be able to still take part in these discussions as about half my working time is now spent on associate development and these forums are a great place to see how the folks I coach are really doing in the eyes of colleagues and internal customers (I will bore you all with Gore stuff from time to time, that was this weeks installment, but this sort of stuff is why we do so well as a company)
I am still learning lots each day about how this illness affects life in many unexpected ways, for instance it really helps other friends talk about their own problems and concerns, either personal or family. We have had a number of people, perhaps who are not very close to me personally, suddenly burst into tears at hearing the news and we have discovered that they have themselves some significant issues or concern just under the surface. Another effect is a lot of friends going to the doctors for check ups on issues they were putting off, which by the way is good advice as I nearly did not bother with the check up that caught this. More expensive is the "live life fully reaction", one close friend, John, told me today has gone out and bought a BMW M5 on the basis that "you only live once enjoy it while you can" brought on by my news (perhaps he just needed an excuse for his wife..). Good news is I am promised a test drive, lets hope its round Knockhill !
I had a lot of chats with friends who have just revealed that they have themselves been through chemotherapy, or who have family in the same situation. Its been very energising and a bit saddening to realise how common cancer is, and how many people go through all the ups and downs we are just working through, and still emerge from the other side, in many cases strengthened and more balanced. Its a bit humbling to realise just how many people have coped quietly with much more serious situations, just like seeing the young people smiling in the chemo ward last week. So while we find it good therapy to write things out in this blog, respect and admiration to all of you who cope or have coped in your own quieter way, and hopefully you dont mind too much the theraputic indulgence of these pages, I do really understand that many of you have been through much, much worse.
What has made this "sieze the day" feeling even more real to us is that Lee's friends partner died suddenly just a few weeks ago, with no warning, of a heart problem. She was a similiar age to us with a young family and both our families went walking for a day and had dinner together just days before, so its been a very sad and disturbing time. It very much reminded us of Campbell, Brids husband who passed away in similiar circumstances five or so years ago.
So I guess thats enough deep stuff for one night, we are off to our local italian resturant which Holly calls "pizza mans" but is actually called Genaros for some nice food, we still have to eat, and still do not have an operational kitchen, so eating out or microwave are our main choices for the next week. Hopefully we are near the end of that project and we can tell already that it will make a real difference to the flat to have a nice family kitchen. As usual the kids will bring us down to earth with earnest discussions about what Poppy should do about a friend who is flirting "outrageously" with her possible boyfriend, and how much Holly will get from the tooth fairy if her wobbly tooth finally falls out.....7 is a much more mercanary age in some ways.
Cheers for today
Gerry
Sunday, March 05, 2006
Crashed and burned
Post from Lee
It is now Sunday evening and I have time to sit and write this post and reflect a little on a rather stressful week. I am relieved that G has got through his first chemo treatment OK but I know there is a long way still to go. It has only been 4 weeks since the doctors told G that they had found something abnormal on his scan but it seems much longer than that somehow as your normal routine is blown out of the water. The worst part for us was waiting to get the definitive diagnosis as you stress about the worst case scenario (the more you read the worse it gets) and you hope and hope that maybe they have made a mistake or that they will find out that it is something benign and harmless. G did not sleep very well at nights and I coped by using the denial technique (which I am quite good at!). We agreed not to say anything to the children until we knew more, but as you may have read from Poppys post, she had already guessed there was something up. G insisted that we sort out Wills etc (which I know is sensible and pragmatic) but I don't mind admitting I found it very difficult emotionally. G told people at his work his situation and they have been brilliant and so supportive which was a great relief to us both. My colleagues at work have also been really supportive and have offered to help cover projects if neccessary if I need to be off.
When G came back from getting his biopsy done he could hardly move and was clearly in a lot of pain. This was when my denial technique started to crumble and reality began to hit me. He went to bed to try and sleep and I spent most of the night clearing out our kitchen and packing to go up North. With typical bad planning we had already arranged that the builders were coming to dismantle our kitchen and dining room and build a stairway to our attic and we were due to be out of the house for the week. I had arranged that we would spend the week in Orkney and, as I was still dismantling our kitchen at 4am, I was determined that we should go. I think both G and I needed to get away from Edinburgh and have some peace for a few days and where better than a beautiful house overlooking the sea at Scapa Flow.
G got a phone call from the doctors near the end of our week in Orkney to give him the diagnosis and we whooped and celebrated to find out that it was Hodgkins and it was at an early stage, therefore the prognosis was in our favour. I know it sounds odd to celebrate a cancer diagnosis, but if you have cancer this is one of the better ones to have to deal with. During this whole time G has never questioned why this has happened to him he just puts it down to random chance and therefore does not waste any time or energy worrying about speculative cause and effect which is a really good philosophy and one that I too believe in. When we got back, G saw the consultant and discussed treatment and volunteered to go on a clinical trial. He started telling more people and set up this blog to let everyone know how he was doing. He greatly enjoys reading the comments and it has been an important source of positive energy for all of us.
As you have already read, the first chemo was this week and we dropped the children off at school and went on to the Western General Hospital and the Haematology ward. As they loaded up more and more poisons to drip slowly into G's arm the last remnants of my denial strategy crashed and burned. I am not very good at hospitals (which I know is a little odd as my father was a doctor and my sister is a nurse) and the staff treating G were very nice. I just hate the smell of the place, like old school dinners and disinfectant. I also find it quite hard to accept that they are pumping him full of these poisons which will make him sick to make him better. I understand the logic and thank god that they can do this, but emotionally it is difficult to handle. Anyway having pestered the nurses several times about air bubbles in the lines (I've seen too many episodes of Taggart, clearly) I left G reading Shogun and took myself off the the Maggie Centre to get some air. The Maggie's Centre is for anyone who either has cancer or who may be caring from someone with the disease and their primary role is to help people cope by providing information, courses, someone to talk to, cups of T etc. The design of the building is really interesting and there are lots of primary colours, it reminded me of Rudolph Steiner inspired places and it had a good positive atmosphere.
G coped really well with the first chemo despite a few wobbly moments the first night and next day and now 4 days later is feeling a lot better. We have to be careful of infections as G's immune system is zapped so I have been extra cautious with cleaning etc (no mean feat with no kitchen and living in bedsit land in the front room). We also have to be careful with the kids as Holly seems to have gone down with a bug today so we are keeping G out of the firing line as best we can.
On Friday, I'm afraid I crashed and burned a bit myself and thought I was going down with some bug as I felt really shivery and flu-like and took to my bed. I think it may just have been cumulative stress as I am feeling a lot better after hiding under the duvet for a bit. I expect you can tell that this post has been a bit of therapy for me :].
We really appreciate all the post comments and letters so thank you all so much they really help.
I'm signing off now to do the usual Sunday night things, forgotten homework, baths, wash hair stories and bed.
L
It is now Sunday evening and I have time to sit and write this post and reflect a little on a rather stressful week. I am relieved that G has got through his first chemo treatment OK but I know there is a long way still to go. It has only been 4 weeks since the doctors told G that they had found something abnormal on his scan but it seems much longer than that somehow as your normal routine is blown out of the water. The worst part for us was waiting to get the definitive diagnosis as you stress about the worst case scenario (the more you read the worse it gets) and you hope and hope that maybe they have made a mistake or that they will find out that it is something benign and harmless. G did not sleep very well at nights and I coped by using the denial technique (which I am quite good at!). We agreed not to say anything to the children until we knew more, but as you may have read from Poppys post, she had already guessed there was something up. G insisted that we sort out Wills etc (which I know is sensible and pragmatic) but I don't mind admitting I found it very difficult emotionally. G told people at his work his situation and they have been brilliant and so supportive which was a great relief to us both. My colleagues at work have also been really supportive and have offered to help cover projects if neccessary if I need to be off.
When G came back from getting his biopsy done he could hardly move and was clearly in a lot of pain. This was when my denial technique started to crumble and reality began to hit me. He went to bed to try and sleep and I spent most of the night clearing out our kitchen and packing to go up North. With typical bad planning we had already arranged that the builders were coming to dismantle our kitchen and dining room and build a stairway to our attic and we were due to be out of the house for the week. I had arranged that we would spend the week in Orkney and, as I was still dismantling our kitchen at 4am, I was determined that we should go. I think both G and I needed to get away from Edinburgh and have some peace for a few days and where better than a beautiful house overlooking the sea at Scapa Flow.
G got a phone call from the doctors near the end of our week in Orkney to give him the diagnosis and we whooped and celebrated to find out that it was Hodgkins and it was at an early stage, therefore the prognosis was in our favour. I know it sounds odd to celebrate a cancer diagnosis, but if you have cancer this is one of the better ones to have to deal with. During this whole time G has never questioned why this has happened to him he just puts it down to random chance and therefore does not waste any time or energy worrying about speculative cause and effect which is a really good philosophy and one that I too believe in. When we got back, G saw the consultant and discussed treatment and volunteered to go on a clinical trial. He started telling more people and set up this blog to let everyone know how he was doing. He greatly enjoys reading the comments and it has been an important source of positive energy for all of us.
As you have already read, the first chemo was this week and we dropped the children off at school and went on to the Western General Hospital and the Haematology ward. As they loaded up more and more poisons to drip slowly into G's arm the last remnants of my denial strategy crashed and burned. I am not very good at hospitals (which I know is a little odd as my father was a doctor and my sister is a nurse) and the staff treating G were very nice. I just hate the smell of the place, like old school dinners and disinfectant. I also find it quite hard to accept that they are pumping him full of these poisons which will make him sick to make him better. I understand the logic and thank god that they can do this, but emotionally it is difficult to handle. Anyway having pestered the nurses several times about air bubbles in the lines (I've seen too many episodes of Taggart, clearly) I left G reading Shogun and took myself off the the Maggie Centre to get some air. The Maggie's Centre is for anyone who either has cancer or who may be caring from someone with the disease and their primary role is to help people cope by providing information, courses, someone to talk to, cups of T etc. The design of the building is really interesting and there are lots of primary colours, it reminded me of Rudolph Steiner inspired places and it had a good positive atmosphere.
G coped really well with the first chemo despite a few wobbly moments the first night and next day and now 4 days later is feeling a lot better. We have to be careful of infections as G's immune system is zapped so I have been extra cautious with cleaning etc (no mean feat with no kitchen and living in bedsit land in the front room). We also have to be careful with the kids as Holly seems to have gone down with a bug today so we are keeping G out of the firing line as best we can.
On Friday, I'm afraid I crashed and burned a bit myself and thought I was going down with some bug as I felt really shivery and flu-like and took to my bed. I think it may just have been cumulative stress as I am feeling a lot better after hiding under the duvet for a bit. I expect you can tell that this post has been a bit of therapy for me :].
We really appreciate all the post comments and letters so thank you all so much they really help.
I'm signing off now to do the usual Sunday night things, forgotten homework, baths, wash hair stories and bed.
L
Sickness with style
Post from Lee inspired by Holly!
Holly, our youngest daughter, has always distinguished herself by being the best person at being sick in our family in terms of accuracy, style and minimal fuss. Therefore she was on hand to advise dad when he came back from chemo-treatment on how to cope with "being sick". She selected a suitable bucket and towel for him and helped to position them correctly at the side of the bed. She then sat on the bed to give him a few tips. Fortunately, G was not too sick but Holly thought it best to leave him with the bucket...just in case. This proved to be a good tip from the sickmaster as a small voice woke me up this morning saying " mum, I be sick" and the bucket and towel were now in Holly's room where she had scored straight sixes in terms of technical skill and artistic impression!
Holly, our youngest daughter, has always distinguished herself by being the best person at being sick in our family in terms of accuracy, style and minimal fuss. Therefore she was on hand to advise dad when he came back from chemo-treatment on how to cope with "being sick". She selected a suitable bucket and towel for him and helped to position them correctly at the side of the bed. She then sat on the bed to give him a few tips. Fortunately, G was not too sick but Holly thought it best to leave him with the bucket...just in case. This proved to be a good tip from the sickmaster as a small voice woke me up this morning saying " mum, I be sick" and the bucket and towel were now in Holly's room where she had scored straight sixes in terms of technical skill and artistic impression!
Friday, March 03, 2006
Gore Best Again
Funny after Brids comments but Gore has just won the Sunday Times Best Company To Work for award in the UK for the third time in a row (I wonder if we keep the trophy). The award was presented last night in London and we are all well pleased.
Today I came down off the steroid high and slept for a solid 12 hours till lunchtime while the snow fell, woke to a white world and a feeling just like concentrated jet lag (Dot was right again). I think concentration and energy levels are dropping as the steroids wear off, but basically I am all right still in a kind of flu/virius sort of way. Hope to be able to work part time from home next week seems that should be very manageable.
Cheers
Gerry
Today I came down off the steroid high and slept for a solid 12 hours till lunchtime while the snow fell, woke to a white world and a feeling just like concentrated jet lag (Dot was right again). I think concentration and energy levels are dropping as the steroids wear off, but basically I am all right still in a kind of flu/virius sort of way. Hope to be able to work part time from home next week seems that should be very manageable.
Cheers
Gerry
Thursday, March 02, 2006
Feel good - didn't know that I would yeah !
As the (probably hoplessly optimistic) title says I am actually feeling pretty good today, could be that I am still on a steriod high from the treatment and will crash over the next days but for today I have been to the cafe, two conference calls, multiple other calls and 20 or so emails all dispacted from the comfort of the sofa or bed with my cool new hands free bluetooth wireless headset. It plays me music or podcasts from Itunes and when the phone rings it switches to phone automatically without me needing to go near the computer or the phone, excellent ! My work computer is fully wireless as well so its no more stressful than reading a book for me to sit in bed and hammer this out, in fact it passes the time better. Felt good enough to walk to the school to get Holly today, it was such a fantastic blue sky cold winter day with no wind I could not bear to sit inside all day, felt a bit wobbly afterwards and retired under duvet but feeling better again now.
The funny thing is all of this is going on around scaffolding, demolition, cement mixing and brickwork as we knock our kitchen into the dining room and the dining room into the attic. The folks doing the job have been great, tidy and considerate, while we are camping in the other rooms. Hopefully major building works in the kitchen will be done by tomorrow and assembly of the new kitchen will start and take about a week or so before we have an operating kitchen. A few weeks later we should have intact and decorated walls in the dining room. That means mum will be camping with us when she is here for the next chemo on the 15th which should be fun ! .
I have made contact with a friend of a friend who is 2 months ahead of me on the same program with the same cancer, she reports feeling fine after the first chemo and then progressivily worse as later ones occur, the theory is that the chemo has plenty of cancer to get at in the first treatments so is soaked up quickly, but in later treatments when it is scavanging the residuals there is more to concentrate on creating symptoms. Baldyness is predicted after chemo 2 for the same reason. Just shows that everyone and every regime of chemo is different, I am just pleased this one went so well so far as a lot of other folks have the worst reaction to the first chemo. Step by step.
Cheers for today, enjoying all the comments and the family banter, keep it up !
Gerry
The funny thing is all of this is going on around scaffolding, demolition, cement mixing and brickwork as we knock our kitchen into the dining room and the dining room into the attic. The folks doing the job have been great, tidy and considerate, while we are camping in the other rooms. Hopefully major building works in the kitchen will be done by tomorrow and assembly of the new kitchen will start and take about a week or so before we have an operating kitchen. A few weeks later we should have intact and decorated walls in the dining room. That means mum will be camping with us when she is here for the next chemo on the 15th which should be fun ! .
I have made contact with a friend of a friend who is 2 months ahead of me on the same program with the same cancer, she reports feeling fine after the first chemo and then progressivily worse as later ones occur, the theory is that the chemo has plenty of cancer to get at in the first treatments so is soaked up quickly, but in later treatments when it is scavanging the residuals there is more to concentrate on creating symptoms. Baldyness is predicted after chemo 2 for the same reason. Just shows that everyone and every regime of chemo is different, I am just pleased this one went so well so far as a lot of other folks have the worst reaction to the first chemo. Step by step.
Cheers for today, enjoying all the comments and the family banter, keep it up !
Gerry
Wednesday, March 01, 2006
Over the top !
When I just got home after the chemotherapy I just felt like I had the flu a bit, seemed like "no big deal so far". Good news is the treatment went well and I did not react badly to any of the drugs, at least not yet. I was able to walk to the car afterwards, about .5 mile with no problems.
Now the premeds are fading the wheels are coming off a bit more and things are a bit wobbly, specially my tummy. Eassic tea in combination with "normal" drugs are keeping my stomach from jumping too far up into my throat, just, and I am forcing myself to eat little bits and drink water glass by glass. Just begining to realise that getting out of the hospital feeling OK is just the start, better than the opposite, but not yet the main battle.
I will keep you all posted tomorrow full reaction should be clearer by then, but overall so far so good.
Cheers
Gerry
Now the premeds are fading the wheels are coming off a bit more and things are a bit wobbly, specially my tummy. Eassic tea in combination with "normal" drugs are keeping my stomach from jumping too far up into my throat, just, and I am forcing myself to eat little bits and drink water glass by glass. Just begining to realise that getting out of the hospital feeling OK is just the start, better than the opposite, but not yet the main battle.
I will keep you all posted tomorrow full reaction should be clearer by then, but overall so far so good.
Cheers
Gerry
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