Bummer of a birthmark !

One of lees favourite cartoonists is "The Far Side" so we have some old collections on our bookshelves, one depicts two deer standing side by side with one having a target on its back while the other says "bummer of a birthmark Hal". Today I sort of know how the deer feels, with Lee off for a few days in Oslo I was contacted by the hospital to attend my "targeting" CT scan this morning. So Poppy, Holly and I all set off in a taxi to the Western General Hospital with a supply of colouring books and pens so that they (the medics not the childeren) could set up the reference points for the radiotherapy. So finally after 44 years of being pretty boring I now have some (actually really small) target tattos on my torso, these were set in place in the middle of a big polo mint (and without any of the nice anesetic cream used by professional tatto places). Apparently these small marks create reference points which the radiotherapy beams use to set their locations (up 10 down 2 shoot etc). The whole thing was over pretty quickly and the kids were fine so all in all we are getting pretty professional and blase at this hospital/cancer thing !

Tonight Lee has got back from Oslo I have been showing off my targets and making plans to buy Poppy her birthday present tomorrow ( a few weeks early ) she wants a trampolene so that is the main part of our day tomorrow, apart from a few conference calls. In addition I have a new back axel to fix onto the MG on Saturday so that I can drive to Northumbria, see my old mate Neville on Saturday night and then go to the MG show on Sunday. Unfortunatly having spent a few pounds on a new axel, after the old one made bad grinding sounds when I was out with Jeff last week, I find that the new axel does not come with half shafts, bearings or oil seals. In short what I expected to be a half day spanner job has become a two day detail alingment and complex shimming job and requires the removal of the full carberettor system, exhaust system and rear brake/suspension system on the car to get the access needed to put the new axel in place. All to be done and road tested by Saturday evening. So that may not happen as my current ability to concentrate and work is limited, at one point yesterday evening I can remember lying on the creeper (rolling thing that gets you under the car) looking at the sun setting for about 10 min while mustering the energy to look for the spanner I needed. So each day I think about spending 2 hrs or so on the job but actually work for about 30min before deferring the next task to the next day. I suspect I will go to the show in the Mondeo in the end, no doubt to some ribbing from my MG club friends, a dilemma will be if I should take a break for the England game Saturday, history in the making so I think the spanners will need to have a rest.

Over this last week I am seeing more of the symptoms of being disconnected from work for a long period of time, that means that my chances of interacting with people informaly and picking up hints and suggestions has been strongly constrained and so my "radar" has been compromised. Hence unexpected things happen and some concerns get legs which could have been dealt with earlier and more in the context of an overall plan. I guess there is little I can do about that which would not push my stress levels and/or work rates above what makes sense for me just now (still sleeping today despite work and MG crisis from 2pm to 4pm so it just shows how much fatigue I still have in my system). So we have suffered some setbacks and need to regroup in some work areas, I am firmly putting that in a box labelled "deal with that in September" although I have one or two discussions planned in the meantime. Overall the lesson of the six months has been that the colleagues have done a great job so my hope is to only come back in areas where I am acutally adding value and leave many of the colleagues who have "stepped up" to cover my absence with their new responsibilities, this should help them develop and grow as long as they have the time available to carry on.

The next period of time is basically going to be some family time camping and at the lodge which I am really looking forward to, then radiotherapy time for a few weeks which I will work part time through, and then some chill out time in Ireland with the family, kids and mum for rebuilding soul and getting my fitness up to the level where I can go a whole day without sleeping in the middle. I can say that this time has had the very strong benefit of building relationships with the family and in the local community as I am not always "away" as I was before. I will miss lunch at the cafe across the street and chatting to the local bucher about his holiday plans, its been a privilage to be able to experience a different type of life closer to a homemaker than my normal existance, and not without its emotional and perspective changing opportunities. However the balance to this is I had no idea how much of a family and a community my friends in Gore globally had become, and how much I had become personally engrained in their success and contentment with the committments they took in Gore. I have enjoyed the uninterrupted contact with my own family but missed more than I thought the contact with the family atmosphere in Gore.

So a lot of thought about how to balance the two in future will be needed over the rest of the summer !

So on that note, enjoy the summer, specially if you are from the USA have a nice 4th of July and remember to take your holidays, in the end you will make better business decisions and find better perspective, good perspective and judgement are the key to good decisions and good decisions are the key to good buisness.

Holidays make profit.........sounds good anyway !

Cheers

Gerry

Double Jet Lag

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

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

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

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

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

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

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

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

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