Peeing in a bottle brings good news.

Yesterday I had the odd task of collecting my urine for 24hrs in a big container to establish a baseline for treatment, this led to the odd problem, for a man, of having to take your rucsack everywhere with you and specially to the toliet. As we went to some friends for the evening yesterday I had to bring my rucsack with me and drink a lot of water along with the two glasses of red wine I allowed myself.

The good news is that we went to see Dr Scott today and as we had specially booked the last appointment of the day we were able to have a long chat about the way forward and the latest results.

Most important result is that the disease is contained in the nodes and as far as they can tell the other signals from the thymus and the liver are false positives, which is a problem with PET scans. There are about six other prognostic factors which are used to determine probability of success of the treatment such as general fitness (+), time from last treatment (-), stage 3 rather than stage 4 (+), anemia (+), albulum level (+), physical symptoms (+) and type of Hodgkins (+). So in summary I am positive on five of the six prognostic factors at this stage and look to be in good shape for the treatment.

The next most critical thing is if the cancer responds to the new IVE chemo, if it does we are in pretty good shape, percentage wise 70%, compared to our current level of around 50% with the good factors above (these being disease free progression in five years time). After a long chat with the doctor where Lee and she exchanged views on cytokines and CD30 antibody activation, all over my head but this is the area Lee works in so they had a good discussion, I felt that they (a) really understood their stuff, and (b) the treatment plan was a very positive and balanced way forward. So, coming out of the consultation I felt much more positive than I have done for the last few weeks of waiting and I can feel my "fighting head" getting in control of things and starting to create positive energy for the treatment.

The first chemo treatment, given through the implanted Hickman line, is IVE ( Ifosfamide, VP16 Etoposide, Epirubicin ) the first one is a continuous infusion over 3 days, the second is two hours each day for three days and the last is a one shot deal on the first day. These are given with a mix of anti nausea, antibiotic, and kidney protecting drugs along the way so is a four to seven day hospital event. Then I go home to rest for two weeks trying very hard not to get infections as my neturophil counts plummet and I am vulnerable, even more than before, to the slightest infection.

There will be three cycles of this treatment, (three sets of three weeks) and within this treatment two critical things will happen.

1 I will get CAT and PET scans at the end of the second cycle, these need to show reduction of at least 50% in the mass of the disease to indicate it is reacting to the chemo and hence predict that the later chemo really will kill it, this is the single most important prognostic factor and either pushes the success probability up or makes it unlikely that the treatment will work.

2 I will get stem cells harvested from my blood at the end of chemo 2, this is usually straight forward for Hodgkin's patients but we need to get a certain amount of the stem cells to make the later treatment successful and a small minority of folks do not manage to "mobilise" the stem cells for reasons the doctors do not understand.

Total time for this stage, all going well, will be around 9 weeks or so from the 4th Jan.

Presuming that both of these things have gone well, and the signs today are pretty positive, (mind you we did say that before) then that will set me up for the heavy duty chemo to kill off the immune system completely and then the replacement stem cells will be put in to grow it all back, which should be some time around mid March or April and will be a month or more in hospital on close support, followed by a few months of recuperation. So if we are lucky some sense of health could be restored by about June - after which I will need a holiday!

So that's a plan and I feel pretty good about it, I now have a list of things to do while I still feel well enough to handle a drill and move furniture about the house, and another list of things to prepare for the hospital stay, phone, DVDs, pyjamas, books, supplements etc. From what I understand I will be hooked up to a chemo line 24 hrs a day and either be trying to be sick or being bored so the west wing and the sopranos will be some comfort on DVD when I am to tired to read. I will try to get a personal web enabled phone so I can stay in touch with blogs and emails in the hospital, I think chatting into phones is verboten, but quiet texting or email seems to be OK. I will need to work out how to get my home email from the remote if that is possible for us technically challenged folks.

We had a very nice christmas by the way, we went to Ireland to see my family, which was really nice and helped everyone set up for the next challenge, then we had a selfish quiet christmas with just us, presents, traditional dinner and falling asleep watching a movie. We had planned to visit Lee's mum and dad but her mum has the flu so I needed to steer clear of any chance of catching her flu. I had hoped to get her set up on the internet as I did with my mum when I was in Ireland so hopefully once the connections is finalised I will be able to chat to both homes on email and the blog.

So off for more nest building and sorting out of the house, I hope you all had a great Christmas and look forward to a very Happy New Year!

Cheers

Gerry

Great reference site

Hi folks,

I found a great reference site/blog at http://www.cancerismybitch.com/ this guy keeps a list of survivor stories and blogs which has been very helpful to me as it reassures me that this is all very survivable and it prepares me for the experience buy giving me first hand accounts of what I will probably go through (although everyone is different).

On the preparation side you will probably not hear much on the blog for the next week or so as we are off to Ireland on Wednesday, back just in time for Christmas, then we have a Doctors appointment on the Thursday after Christmas to go through the treatment in depth with the transplant team. Following that we are probably going to scoot off for a few days in the MG and the Aston Martin to tour scotand and hopefully stay in nice hotels as we tour with the kids (hence the two cars as both are really two seaters).

Plan is to get the Hickman line put in on the 3rd start chemo either then or on the 4th which will be a hospital stay for me for a few days. Once the details are clear I will post them in the blog but that may be a few weeks away. In the meantime we are nest building, present buying, card writing, visiting relations and enjoying the holidays, I hope you all are too !

Cheers

Gerry

Treatment Plan

Just a quick update on the medical consultations today, confirmed as feared the dive into stem cell therapy, with conditioning chemo.

This week and next I will have a series of tests on lung, heart and kidney function so that they team can judge how far they can push my chemo and establish base lines for those functions. Hickman line will be implanted between Christmas and New Year (direct line to the vein above my heart which dilutes the chemo so enabling high dosages and avoids damage at the point of injection). This will require regular visits to the hospital to keep it sterile and clear.

Chemo 1 of three preconditioning chemos will start on Jan 3rd, first day after new year here in Scotland, when they have a full crew on at the ward to deal with high dependency patients, each chemo cycle will be one week in hospital and two weeks recovery, there will be three cycles of this preparatory chemo, which will knock back the disease and get my stem cells into overdrive. In this case I will be very sick and then very vunerable to infection when I am at home. We have already developed a plan for me to have the bedroom/bathroom/study upstairs as a "controlled isolation zone" for my recuperation during the weeks at home to keep the interactions with the kids, and transmitted infections to a manageable level. Hopefully Poppy will be OK with that as she has her heart set on that bedroom.

At the end of Chemo 2 they will rescan to ensure that the disease is responding to the chemo properly (as it, or a clone of it, ducked AVBD chemo we need to make sure it is not resistant to this chemo). Presuming that the chemo is working, then the team will harvest stem cells from me at the end of chemo 2 and chemo 3 to set up for the deep chemo, which should be around mid-march depending on infections and response of my blood counts. During these chemos I am likely to need platlets, blood and antibiotics plus lots of medical support. This is a different world from the cruise of AVBD chemo.

I then go for the deep dive of the stem cell replacement therapy, this is six weeks in hospital with "industrial scale" chemo as the nice doctor Scott put it today. Basically this means that they will try to kill all my immune system, bone marrow and cancer while, just, helping my heart/kidneys and liver to survive. The good news is that they are pretty good at managing this balance, as hard as that may seem, and the doctor said today that they only lose 1% of the patients - which is great given the wobbly and near death situation of many of the patients is a really good record. So bottom line this treatment is going to be tough but its not likely to be fatal.

That was some of the good news, some of the not so good, or sobering news, was that the success of the treatment is totally eliminating the disease in the whole population that make it this far - is around 50% - for subsets of the population like the ones who are responsive to chemo and have the right prognostic factors (like I may have, depending on the results from London which are not yet available, and those in the Mayo study) then this rises, but we need to be realistic here this is a tough fight, and while its not likely to get me in the short term, there is some reasonable chance it, or complication of the treatment, may get me in the mid term. Clearly I am setting up for the fight here and have my mental light saber out and ready for the fight. Lee was quite funny today as she said that the only thing that worries her is that this is Gerry Mulligan vs Gerry Mulligan's immune system - in any fight of me against the world she would back me which is sweet.

So we have a plan, its all a bit sobering, but at the same time it is a plan and I can get my head around it, Lee and I came out of the hospital and decided to go to lunch, the strange thing is I am fine, symptomless and fit, so we had a really nice lunch (excellent Pinot Noir with pigeon) and just made it back in time for Holly, in fact I had to jog for half a mile up the road to catch her and I am supposed to be the sick one ! So after some nice wine I only had the energy to call Mum and Philip my brother before resorting to blogging and music, so far the Valkyries, Dexys and Dire Straights have made the list while I type the blog to keep you all updated.

Lee has poured me a nice Pinot, and is selecting the music as I type this, though I have cut in with a request for the Cowboy Junkies, we have had a deep heart to heart over lunch and have sorted out how we are going to handle things, both good or bad, this experience has continued to help me realise how much we are entertwined, and how deeply I love her. Just before she remembered as we were listening to some music, a lake we had been on in Germany and I interjected "Konigsee" as she had forgotten the name. I realised, and foolishly said, that I am the only person in the world who would know the answer to that question. As you might imagine that was "a moment" in our oscillation up and down in the emotional stakes. Now we are listening to Mozart, the Marriage of Figero, which I would not have come to appreciate without her. So we are having all sorts of mad thoughts of what to do prior to chemo start, we know we will go to Ireland to see my family, and to Aberdeen to see Lees family, but in between we may have a few indulgent days away taking the car up north with the kids and staying in some castle/spa for a few days before I dive into the vortex of treatment.

So kids are sitting doing their homework behind me, tea is cooking, Mozart is on the stereo, strangely I am chilled out now that I have a plan and that lee and I have agreed to sort out the practical details ahead of Jan 3rd, so I feel that "my back is covered" and I can concentrate on beating the disease - which I fully intend to do. In the meantime I recommend Mozart's clarinet concerto 2nd movement, remember Poppy plays the clarinet and it is a beautiful instrument.

Enough blogging for now, some real life to live as well, for the gap between now and then the best feeling I can use to describe it is the scene in the movie "the perfect storm" where they find themselves in the eye of the hurricane. Myself I would have dumped the fish and used the GPS to stay in the centre of the storm, George Cluney on the other hand did not take these precautions, so I have confidence that my more practical approach will lead to a better outcome. Oddly that scene has haunted me since the start of this adventure, I have often mentioned it to Lee, I guess I somehow knew that this would be a fight, and it will be a fight. The good news is that I think I have got my mind and head out of the zone of uncertainty and into the zone of facing the challenge ahead. In between I will try to combine being sensible in my build up and enjoying things as much as possible.

As I type Poppy is trying to organise her friends to come round for a pre end of term-disco pizza and dressing up, she is so excited about the whole event, which is really sweet.

So cheers for now, with a plan we are more comfortable and indulgent, I hope the world is good with you all, just now its fine for us, after 3rd Jan I will be in a different world where each day will count as a step forward.

Cheers

Gerry

Nest building in the phoney war

We are in a funny situation right now, I still feel fine, yet we know I am going to get this horrible treatment, at least that should be confirmed on Thursday. So I can still go to work, have a beer, go out to dinner, and do domestic stuff, until I get the next consultation and hopefully soon after a firm timetable for the treatment. The reason for the short delay is that the doctors wanted to check some more on the PET scan results around my liver and thymus with the real experts in London (if they are false positives, which is most likely, that is good, if they are real hot spots that is bad as it means the cancer is outside the lymph nodes). The additional reason is that the top haematology consultant in the cancer center, Dr Davis, is in New York at a conference until tomorrow, lets hope he is learning about great new ways to deal with my situation.

So in the meantime I am concentrating on two fronts, getting rid of my job and sorting out the house ready for the next few months. I have made the big decision this time to cut the ties with work much more firmly than the last time, all I have read over the weekend has indicated that I am going to be very sick and will not have the mindspace to worry about work stuff - and I am a bit fussy about my work so I would try not to let people down. I found a good blog from a woman in the USA who when through the same treatment and blogged it pretty much day by day http://journeytobabeland.blogspot.com/ this and other similar blogs has helped me get my head around how sick I will be - and that once you bear it you can be all right. The other thing I found was a good summary of the medical side of the stem cell treatment on http://www.cigna.com/health/provider/medical/procedural/coverage_positions/medical/mm_0188_coveragepositioncriteria_stem_cell_transplant_hodgkins_disease.pdf
this is an insurance company webpage so it is a bit more negative on stats but has a good overview. Finally for those of you who like myself have been bombarded by stories of alternative cures, or causes for cancer the very well organised Quackwatch website is a source of apparently balanced information.

Given the focus needed to get the mental side of things right, and to be honest the difficulty I have had in trying to work over the last few weeks, I decided to talk to the leaders of the division yesterday and formally disengage from work for the next 5 or 6 months. They were super supportive as they have always been from the start and will now start a process to get someone else to do the elements of my job, so I do not need to worry about this dimension. At my suggestion when I return I will return to a different commitment - in fact we have a lot of really good strategy options and challenges which are just starting to emerge, and I would be well suited to those, so I think this is a good opportunity to take a break and make a bit of a change. I know I would worry about the job too much if they just held it open for me so I think this is a really good way for me to concentrate on the main task at hand. It will also challenge some colleagues to stretch into all or parts of my role which will be really good for them.

So my plan now is to take some vacation time up to the start of the treatment, apart from a few phone calls to help with the transition, and to concentrate on nest building, keeping fit, eating well and resting well ahead of the ordeal - I may have the odd night out with too much beer occasionally, as compared to the damage the chemo will do a night out will be a walk in the park.

On the nest building front we are getting the carpets fitted to the hall and the new rooms upstairs today and tomorrow, so I should be able to have my study with computers, phones, music and TV all set up over the weekend - this can be my retreat when I am well enough to be home and recuperating. I have about half of the West Wing and all of the Sopranos to fall back on for entertainment. On the spiritual side I have dug out my old Tai Chi manuals and videos along with some Chi gung exercises guides that lees mum gave me to start into a proper daily meditation routine. The new study has 10ft glass window along one side so is a great airy space for that sort of thing, with great light and connection to the sky.

Lee has also gone for the classic trick of finding the front room drab in comparison to the newly painted hall, study and kitchen so you guessed it we (ie the painter Graham) is starting on the front room tomorrow as well. So we all have been moving furniture all night, seems weird to be doing this and yet the doctors telling me I am really unwell, I still feel very few symptoms just a bit of discomfort from time to time in my chest. So its all a big rush up to Christmas and the presumed start of treatment just after, it will be good to get the timetable clear and the path fully confirmed.

Hopefully we will find out more about the treatment and the timing on Thursday, if it starts after Christmas we have a trip to Ireland planned just before Christmas and a nice Christmas in our newly sorted out home organising TVs, networks and stereos systems on my side, basically playing with the boys toys. Quite a few friends are around so I think we may have a pretty sociable time. However if the doctors say the slot is before Christmas we will just have to go with the flow I guess.

As always I will keep you all posted here.

Regards

Gerry

Getting it back together

After continuing the tone of the previous blog, by taking a day off and hiding under the duvet for a few hours this morning I eventually kicked myself out of bed and walked to the doctors to organise a sick note and discuss support over the next few months. That was the start of the turning point in my mood, the sky was blue and the folks in the park were jogging or strolling around, I stopped for a coffee and the girl in the kiosk was really pleasant asking me how I was (non-committal reply from me) and what I had on for the day. It cheered up my mood greatly so I walked back had lunch and set to sorting out the house, getting my cancer books and audio tapes out, buying vitamins and minerals to restart my diet, and generally starting to get organised.

By the time it came to pick up the kids from school I was in good form again and the bleakness of yesterday was beginning to fade. I had to take poppy to the shop to get a new top for her friend Lucy's disco, which is taking place now in the church hall beside our house, I wandered over with the digital camera and in the background now I am downloading the shots to email to Jim and Sarah. Poppy and Holly are enjoying the fun, going to a disco with boys is a cause for lots of gossip for Poppy at her sleepover tonight. I stayed only for a little while as I did not want to cramp her style too much by hanging around.

In between times I have had a good chat with my other friend Jim and the boys rugby watching group will be getting together this week for a pint before I am chemoed, my two brothers came on at the same time and we had a good chat about the treatment, Philip seems to have done even more research than me at the moment. So overall moods are lifting, social and family teams are reconfiguring into the great supportive mode we had before, and I am getting my own head around the challenge while still having fun. So things are looking up and we have a nice weekend of events to look forward to including a night out with our friends Nick and Bernise so that might be a a bit of an evening !

As an update I have found some research from the Mayo center in the USA which is claiming a 90 percent successful outcome as long as the disease recurrs in the lymph nodes, which we think mine has, and its within 12 months of the end of the previous treatment which mine is ! Those are odds I can deal with and are actually pretty similiar to those I faced the first time around. The downside is the fatal rate is about 6% so its a kind of russian roulette situation with a lot more chambers in the gun. Mind you to put this in perspective I am sure the deal for open heart bypass surgery is pretty close, so its a major procedure, and it can go wrong, but the odds are on my side still in comparison to many other poor souls who have cancers which are much more difficult to treat, medical advances are a great thing !

So that leaves me in a positive mood, with good hope for the future and the desire to enjoy things over the next few weeks ahead of the deep dive into chemo.

Holly and Collette are tucked up in the living room, sleeping for the night in a den Holly has made for them of blankets, bookcases and sofa backs - camping with central heating - and I just opened a nice card from Jim and Sarah, Collettes parents, who are hosting the other girls and thinking of me. Respect to you guys as you have to deal with beautiful and innocent Collettes problem with Crohns disease, and yet you think of us, its great to have such good friends.

Kids taking their first steps to adulthood, cats and younger kids curled up in the front room, good wishes and good chat with friends and brothers, and 90 percent from the mayo clinic - not quite a Lou Reed perfect day, but good enough for me.

Cheers

Gerry

Non medical update

I am not sure if I will post this entry, perhaps I will just keep it in draft form, but I want to write it anyway as it helps me think and rationalise my situation, and in some way this may be a record of my thoughts and feelings that Poppy and Holly can at some time in the future access and help them understand this time in our lives.

Today was a difficult day on many fronts.

Firstly the doctors information was not good at all, in reality they found the disease has beaten the AVBD chemo and got outside the radiotherapy zone pretty quickly, so that some of it missed the radiation. Having "escaped" it has grown aggressively, not passively, the new main tumour is already half the size of the original, now dead tumour, and the disease has spread to multiple other nodes. My consultant, the very competent Dr Yulle, who previously was a very positive and cheerful person, was almost depressed, because if the field had been a bit wider she might have got it, but we took those decisions together and I spent a lot of the time in the consultation telling her I understood the risks, and the percentages and we could not have foreseen this outcome, in fact looking at the charts with her she would have missed even with the higher field.

The key thing is the radiation missed, the disease beat the chemo, and we really have to go after it now with all guns blazing. I think she hoped that it would be in one place, and she could get it with radiotherapy, and save the day, but I could see today that the negative consequences of that would be too high, and the technical complexity did not look good, and even then it may jump to the next nodes, so I would be back to the same position in six months time, which even I would find a bit tedious.

One thing that was helpful was that Lee was with me this time, in the past I have gone myself but she wanted to understand this more serious situation in a greater depth, so we went together, I got her to drive the Aston Martin over so that she would get used to driving it, which seemed to work well. As we walked down the road afterwards we were both a bit upset, understandably, and we were talking about the doctor and the different type of lymph cells when she stopped the conversation and said "this is not helping is it?" and I said "no" so she stopped me analysing gave me a big hug and helped me switch focused on how to manage and cope with the path forward. This was another example for me of how personal coping strategy's are, and how difficult it is for Lee, who has to cope with equally significant emotional challenges. My way (like in this blog) is to focus on what needs to get done, no regrets, no feeling of unfairness, no complaining about the doctors, no what if, no if only - because selfishly that is what works for me - but its not what works for other people necessarily. So I need to be careful of that and be supportive of Lee and other family members so that their needs for coping are also met so that they do not have to take too much of the strain.

This evening was a really tough one, the kids had their school Christmas concert, for their school this means taking over the Usher hall for the night, one of the main concert venues for the city, and they put on a fantastic show. The three of us went out for an Italian dinner while Lee was battling her way back from a meeting in Glasgow, half way through the starters Holly asked "Dad did you say your cancer was back?" so that was the opening I needed, we had a great chat about how it was back, which I had told them a few weeks ago in a low key way, and how I would need to get some more different chemo to sort it out. I told them that type of chemo would need some time in hospital, and it would take until about Easter, as before they both seemed fine with that and we got down to eating our pizzas before going to the show.

The show however hit a nerve, when 400 kids including Poppy and Holly started to sing "have your self a very merry Christmas..." I was standing the the middle of this thankfully dark concert hall, with tears coming to my eyes (Lees as well), I hope no one noticed, but even now it brings a lump to my throat. The thing is that if I think about the possibility of missing the kids grow older I feel really sad because I think, perhaps we all think, that I could help them a lot to find their place in the world and I would like to see them be happy. So that is going to be part of my new motivation strategy - Christmas with Lee, Poppy and Holly, next year, then one year at a time for hopefully a long time after that.

So I need to start to build up the reserves of strength that I will need for this next fight, getting fit physically is part of it, diet is part of it (but being moderate as we do not want to stimulate the cancer to grow faster), but most of it is getting my fighting head on mentally so I can get myself prepared for the worst, in a kind of "bring it on" mentality, then when I feel bad in the middle of the chemo, but I can still smile or make a joke (which I have never been any good at so maybe that's not a good part of the plan) then each smile will be a victory and a part of the path to recovery. It was this type of attitude that helped me through the previous chemo and I skipped before one chemo with bad results, so this mental strength is what I need to build up next. This evening when I came out of the concert I had a number of messages from family and friends but I did not feel up to answering them, perhaps tomorrow I will get it back together.

So this was not one of my upbeat posts, my old friend Brid once said I was a bit like Pollyanna, which I think meant so optimistic that it was not real, and to some extent I do not want to dump on the readers of this blog, quite a few of whom are colleagues as well as family members. But tonight I think it is OK to say this hurts, and its not easy, and it is the mortal dilemma that we all face as part of being human, we only have a short time on the stage of life and we never know when it will end. I could have all this trouble and be fine, while someone like Brids husband Cameron died in his early 40's with no warning at all. Its just random numbers.

So this is a late night blog, perhaps a dark night blog would be a better title, its been a difficult day for me and that's OK, its OK for some days to be difficult and for some songs to cause us to leak a bit in these circumstances.

However I was in a cafe, just after the hospital, and I phoned Mum to tell her the news - she was as always a rock of support, as she has always been since she would sit by my bed until I woke up after every operations I had after my accident that I can remember. I would always come round, often feeling very sick, and she would be there. She is a real hero of my lifes story. However as I finished the call the record changed and Van Morrison came on singing "sweet dreams of you, so real and so true.." I felt it was an omen and a good one at that.

I am an extrovert, I guess you can tell, and that means I get energy and strength from being open about my situation, I worry sometimes that this blog might be seem as a bit indulgent or attention seeking, I don't mean it that way, its just that typing this stuff out at night helps me get it "off my chest" and it saves me repeating the same story again and again to folks, or the phone ringing all the time for the same reason. In the end no one has to read it, and I do not expect anyone to read it, but for the next months I think I want to keep it as real as I have tried to do in the past, so I think I will probably post this blog rather than bury it in draft.

The good news is that I have been doing a bit of research on the up to date statistics on the treatment I will get next, and it is pretty good, and getting better by the year as the medical teams gain experience - 10 years ago this would be a much worse, like terminal, situation and it was this disease that killed my natural mother Pat in the 1960's despite the best efforts of her doctors. Today the success rate is very high, better than 60 percent including all the "last ditch" folks who are very ill before the treatment is attempted, so I have a great chance of getting through this, and when I do the disease free 10 year progression is back up in the 85 to 90 percentage - those are odds I can work with.

So today we have had some bad news, and leaked a bit, understandably, but this is a game we can play and win if I can get my "game head" on, so that is going to be my main focus from here on in, not work, or downsides, but winning the key game here. That will be my focus, along with smelling the roses, if you want to know what I mean listen to Coney Island by, of course, Van Morrision and remember I cycled along the roads he spoke of, in the sunshine of summer days when I was 15, on my granddad Malones old bike, painted yellow, sailed a dingy with my father on strangford loch and escaped to an island in the same place with my girlfriend when I was 18 so its a special place in the world, and in my heart.

To all of you, hug your children, listen to your partners, give your colleagues the benefit of genuine motivation and respect, don't honk your horn, wave instead, they probably just had a bad day, there is no time for trivial stuff, but stand up for what you believe to be true, as that is a measure of the weight of your personality, right or wrong, popular or unpopular.

Later blogs will look at how to get my head, fitness and diet together I think the first one is the most critical, for now let me sign off and please dont worry as a result of my directness, I will get a game head on, and we will beat this thing, but I hope it is OK to be honest about the bad days as well as the good days

Cheers

Gerry

Medical Update

Well I am going to try to keep this entry focussed on the medical stuff. The news is not good. The PET scan shows active disease in the enlarged node (which is now half as big as the orignal tumour) and small traces in multiple other glands up towards the top of my chest and neck. This seems to rule out any quick radiotherapy route for me. There is also a positive result below my chest near my liver but there is a fair chance that this may be a false positive picking up the small intestine - the UK PET experts in London are going to give a second opinion on that over the next few days. So its confirmed that the disease beat the AVBD chemo, got outside the radiotherapy zone before it was applied, and is growing agressivily now (although was killed in the original tumours). Simply extending the radiotherapy more broadly could just see the same thing happen again and starts to reach loadings which bring significant possibility of secondary cancers.

So it looks like the heavy chemo and stem cell route for me, I will meet with the chemo team next thursday to get a more intense briefing on the program but the outline so far is something like 2 cycles of chemo each of three weeks each requiring a week in hospital, somewhere in there they do the harvesting of the stem cells, followed by the actual stem cell replacement chemo which will put me in hospital in isolation for three further weeks and then some significant recovery period to follow. Roughly that feels like it will take me out completely for about four months from a work perspective from the start of the treatment but I will get the full details from the stem cell guys next thursday. It seems like as next thursday is already the 14th that the treatment may start just after christmas to allow for a nice christmas with the kids before we jump into the hospital cycles.

I am setting off now to do my background research on the treatment, the side effects, how to manage the side effects and how to set myself up mentally and phisically for the task. The good news is that this treatment is improving all the time and the doctors are pretty confident that they can get the disease with the treatment and that it is not likly to come back once they nail it properly this time. Lets hope they are right !

Once I have researched things a bit more I will get back to you with an enhanced overview.

Regards

Gerry

PET scan done

I continue to be impressed by the speed of our national health service here in the UK when you have a really critical, and somewhat time dependant, illness. Today I was in Aberdeen getting my PET scan done (this is the only scanner in Scotland) from a diagnosis which we just got on Thursday last week. I think I was slotted in over lunchtime, in reality due to the good work of Dr Yulle and her secretary. So it will take about a week for the results to be assembled, looked at by the PET experts, sent back to London for double check and then ready for a discussion with my team in the Edinburgh cancer centre on Thursday 7th december. I guess in the USA you may get things quicker that than but I feel comfortable with the checking here as we did get a mistaken all clear last time, which was correctly caught by the experts. So by the end of next week we will know if I am heading down path A (radiotherapy to the affected node, easy street) or path B (stem cell replacement plus maximum chemo, opposite of easy street). That will be a big day in the whole story and I think Lee wants to come along as it is such a critical discussion.

Until then there is nothing I can do, I feel fine and I have a lot of stuff to sort out so I am heading off to the USA at 5am tomorrow to try to work through what to do with my backup for my job in either path A or path B. In the first part of the trip I will be with the IT community in Gore and the manufacturing leaders of the other divisions to cover our new IT system project and the plans for operations in China. Then I should have a days break in Manhatten just to indulge in a bit of shopping, cocktails and a broadway show - kind of a last extravagance before getting back into the closed world of hospitals and recovery. On Monday the leadership team of our Fabrics division, were I work, is getting together to discuss the plans for the next six months and some big investment decisions, so I am really pleased to be able to join them for that and a discussion about what to do about my work over the next months depending on path A or path B.

I am however feeling lucky again today as I spotted the police car lurking in the bushes before he managed to get a lock on my speed, and more importantly just caught a flash of movement in my mirror as he pulled out after me in the far distance. I guess these guys really wanted to bag an Aston Martin, because I sat right on the speed limit for 15min, in the dark, with cars speeding past me until finally he got fed up hanging back for me to let rip and cruised up beside me, pulled in front of me, and just sat there for a few miles.... before pulling off and setting up a new trap.

I had a nice trip up to Aberdeen in the car as it constantly gets good reactions from people, I think because they are rare, pretty and an English icon. In my old Porsche or the faster Impreza turbo I had guys would race you on the road to cut you up. In this case I was in busy traffic with an Impreza and a souped up clio all with 2-3 young guys in, so we played tag in and out of the traffic - no silly stuff just accelerating to about 85 when there was an opening in the traffic. I could accelerate more quickly than them, so was in front, but did not want to go too fast so they caught me up. Much to my surprise they just pulled up beside on an open road and made "go for it" signs - they just wanted to hear the engine and see the car squat down and go ! As it was a dry open road I did drop to third and boot it up to about 110, then dropped back down to a safe 80 when the others just tucked in behind and we went about 20 miles in convoy until they pulled off. I have never had a reaction like that on a road before I must admit it did make me smile.

I had a nice time up at Lee's parents house, Lee was so worried that I might miss the scan that she insisted I went up the day before. Her parents live about 200 meters from the scanner as her dad was a consultant at the hospital before he retired. She calls them Silvia and Gengus after a far side cartoon which featured Silvia and Gengus Kan at home, but actually her dad Dr Innes (or Sandy) is a great character who has a load of insightful stories about his time as a doctor, Silvia is a bit of a hippie, in some ways, who really has done a lot of research and gained qualifications in alternative medicine through a lot of study, so together I get a really nice balance of advice, crystals, books, diet, good conversation and good wishes from every trip up to see them. This was no exception and I feel emotionally built up by my conversations with both of them over the last two days.

When I returned I found that the missing windows for our loft conversion have finally arrived and they look excellent, I think Tim (the builder) and the guys, who have been with us now for about four months, have kind of become part of the extended family. They have done an excellent job on the work and also in interactions with the family. Hence the news was leaked to one of them and now everyone is being very kind and supportive, specially to Lee. To be honest I think this has been a really tough blow for Lee, I understand, as I think it is actually harder to be the partner in this type of situation, as added to all the issues you have the problem of powerlessness to deal with. At least I can chose how to face the music so I have some feeling of control, but for Lee she sees all the potential consequences and yet cannot herself grab any of it and make it different. I would be useless if our roles were swapped, and I feel terrible for the trouble I am causing her. She tried to go to a work event on Monday and could not get past meeting some friends to go together before the stress popped up in tears and the guys covered the base and sent her home. I hope once we get a plan for the treatment some of the uncertianty can be resolved and we can plan even in the short term to have some oasis of calm just for a few days to enjoy some of the normal things of life along with all this fuss.

So in summary, the scan is done, I feel fine, and all the sensible things to prepare for the next months and weeks will be put together in the next six days, and I will tilt my hat to the world with a trip to manhatten while waiting for the A or B decision. In the meantime Lee will go to a conference, kids have sleepovers with friends, homework will be done, decorating will be finished and life will go on much as before - which is how it should be. My feeling is that even in these extreme circumstances there is no where I would rather be based than here, with the occasional adventure to China or the USA just to remind me of how much I like being home, but also how much I enjoy working with such interesting colleague from all across the globe.

Well thats enought for tonight I am sitting down to watch a program about the Tusanmi disaster in a few minutes. I can remember getting off a plane from a skiiing holiday in heathrow and seeing the news (at that point a day or more old) and ringing the plant in China and colleagues around the world to see who was there, fortunatly Andy and Karen who were in the region had other plans, none of the Shenzhen team were there, and the UK folks Gordon et al were all right having moved hotels the day before (this was confirmed as we saw him on the TV news arriving at the airport in Edinburgh). Just goes to show how wide our team is spread and how your thoughts turn to the team in those cases.

So see some of you in the USA, thanks to lees parents for their hospitality and advice, and lets see how the consultation goes next week.

Cheers

Gerry

Sunny sunday afternoon

I am surprised that the weather has been so good over the last three days, its seems like fate is conspiring to bring beautiful winter sunny days to combat my tendency to be depressed by the relapse news. Last night I decided that clean living could wait for a few days and polished off a bottle of wine in the course of the evening - which had the desired effect of knocking me out for the count and I slept solidly from 10pm until 7 this morning when the cat wanted out. Even with all that sleep I managed to creep back under the duvet and fell into one of those half awake half asleep comfortable naps, Lee calls this "hotting" as you are warm and cosy and have no special things to do or no work to go to, anyway whatever it is called it worked for me as I got up at nearly lunchtime feeling really relaxed and quite happy with the day.

In the meantime Lee had got up to look after the kids and they have gone off to Jim and Sarah's, when talking to Lee on the phone Sarah had asked how my check up went only to be met by tears from the other end of the phone as the question released some of the pent up emotion in Lee, she is feeling a bit better now and distracting herself by watching "The West Wing" under a blanket on the couch. I decided to get the MG out this afternoon and went for a little run just to keep the engine lubricated and to fill up with petrol, the weather forecast is for rain over the next two days before I may be on the way to the USA so this was the last chance for a while to get the car out and cleaned.

Google have taken over blog spot so I have had to transfer this blog over to their system (you should not notice any difference) and set up an account with them. You can see how some of these mega companies really do get everyone into their net, it seems this is not a good thing but I doubt if any country government is really capable of splitting up these monopolies. That would get me on to the need for a global government and we would be here for hours so we will not go down that rabbit hole.

Anyway my next job is to rewrite the short update section of the blog, delete cured add in relapse sort of thing, compose a note to my colleagues in work to let them know of the problem to see if anyone wants to help cover parts or all of my job, and then get into serious research on the stem cell treatment. I did discover a blog from a young man who had the treatment and survived so far for many years cancer free (http://www.davesite.com/hodgkins/mobil.shtml), he describes his feelings during the extreme chemo in the following words.

But I felt awful, and I was alive. I just had to find a way to kill the time.
I was scared, with all the antibiotics I was on. Then I realized, as long as I maintain homeostasis -- I'm not going anywhere. So I made a checklist in my head...

Am I breathing
Is my heart beating
Do I feel any real pain, or do I just feel like shit
Am I capable of telling someone I feel like shit

If those are true, I am alive. And I'm fighting.
And I knew I was going to make it.

So these kind of thoughts capture both the hope that I have (seems like a lot of folks are all right after the treatment) and the fear that I have (seems like this is going to to be really ugly on the way, which is weird as I feel 100 percent fine, and yet am going to have to subject myself to this horrible path even though I do not feel unwell at all). So I guess this is a small illustration of what I am thinking on the downside, however most of the time you just have to get on with the normal things of life. Monday I will go to work as usual, try to get my presentations and reports prepared for the meetings over the next week and chase up the hospital on the date for my scan. If I am very lucky (don't laugh I know, I know that's a stupid turn of phrase) then they may find the cancer in just in the one lymph node and direct radiotherapy may be a possibility, that would be my only way to avoid the ugly path. Lets keep the fingers crossed for that for now but I am preparing my head for the stem cell treatment as that is the most probable way forward.

Anyhow that's enough for today, I hope you all are enjoying the nice weather if you are in the UK or finishing up a happy thanksgiving if you are in the USA, soak it up and appreciate it because bad things can happen in life!

Cheers

Gerry

Two days in...denial, depression and bravado

Just got back from taking Poppy to Hockey practice almost exactly two days since my unexpected diagnosis of Hodgkins relapse. The very odd thing about this condition is that I feel perfectly fine (at least phisically) so I can jump out of bed get the Aston Martin out and go to Hockey just like all the other parents, if I felt inclined I could run round the park and be the sweaty picture of health I thought I was until thursday. So in many ways I dont want to take it easy or stop doing things as that just gives me more time to be distracted and think negative thoughts about the future.

So on Thursday I worked away at home talking to colleagues in Germany, as the US folks are all out on thanksgiving holidays these two days. On Friday I went into work as normal and actually sorted out a few problems with some tax and transfer price questions in China and managed to unblock a new supply agreement which will save the company a lot of money with some German colleagues. I sat back after that and a few meetings and thought "damm, damm, damm" because since I have been back, possibily due in part to the maturity brought on by the previous treatment, I have felt like I have been playing "at the top of my game" in work. Just as that starts to really show benefit and I was really enjoying being back - slam - back into the world of doctors, scans, worry and feeling crap. My friend Nick texted me and asked me if I had stopped thinking F*** every few minutes yet, in reality I think that will take a few weeks.

I had hoped to get a date for my PET scan on Friday but I did not hear from the hospital so I will chase them up on Monday. I hope to still make a business trip to the USA at the end of the week for about six days as I am presenting the outcome of a lot of work we have done over the last four months and it will give me the chance to work out a handover/cover plan for the next steps of the treatment with the leadership team who will all be in the USA at the same time. I also hope to make a day trip to New York on the Sunday for some Christmas shopping which would be a nice pre-treatment treat. However I will cut this short if the scanner is available of course but while I am waiting around I can wait in the USA (and be more distracted) just as well as moping around here before I am grounded for another six months at least.

Another strange thing about feeling fine is looking through the papers on the stem cell treatment and the other options and realising that although I look fine, and the next steps in treatment are great new inventions, the statistics are not anywhere near as good as before. Whats working in my favour is my age and general health but the treatment has significant risks if we end up in the stem cell replacement route so that is all pretty sobering. Then of course the only stastic that counts is my own, and that can be on either side of the line, so good attitude and fighting spirit are the only sensible options to stack the odds in my favour once again.

I do find myself walking around in a semi-daze from time to time, like time has somehow stopped, I think my head just wants to go back to the doctor and say " so that was the other guys notes right - you got me going there !", somehow no matter how much I think it, the reality does not change back to the previous "recoverd from cancer" status. What a pain in the but this is, really not a good way to make your day.

Good development is that the kids have taken things pretty well, I managed to tell them in a low key way that the doctors had "missed a bit" of the cancer and I would have to have some more treatment over the next few months. They reacted in the usual kids way of "OK dad" and then got back to their homework and arguing over eating sprouts or not for tea ! They continue to be a great source of normality as for them these days are just like the days last weekend and that helps me to move from hour to hour along with their normal routines and interests in who was evicted from the gameshow they like in the jungle.

So I guess we will be in limbo for a few weeks while scans and treatment plans are worked out, hopefully by the case meeting planned for the 11th of December we will know which path we are heading down and the rough timetable for the start of the treatment, till then I will keep the blog up to date with any appointments and test results as they become clear.

I will need to go back into my health oriented routine to build up my strength for the treatment but I think I will allow myself a few beers this weekend before diving into the green tea, exercise and diet preparations.

Well the leaves still need to be swept up in the garden cancer or no cancer, and its a nice sunny dry winter day, so I may as well make the best use of it !

Cheers

Gerry

Back in the game

Well so much for the end of Gerryscancerdiary, today is the 23rd of November and at 9.15 today I met with Dr Yulle at the Western General Hospital only to hear her say "I am afraid its back" the words none of us want to hear specially so soon, this was my first full scan since the end of the treatment in August. So this morning has been a bit of a dazed muddle for me, I texted lee from the hospital and she met me back at the house, after a coffee and a cry we put our brave faces on and I started to call family and friends while she went to the Airport to pick up a visiting colleague. Now I have told mum, brothers and sister and some key folks at Gore I have got the story pretty straight in my head, so for thouse of you catching up here is the summary situation.

Originally my tumour was on the left side of my chest, the chemotherapy got most of it but they saw a small amount left behind so hit me with more chemotherapy and radiotherapy focussed on the tumour area. Normally this would be enough to eliminate the cancer completely, however in my case a piece of the cancer migrated from the left side to one of the nodes on the right side (hence ducking the radiotherapy) and has been growing since the chemo stopped some four months ago. So it seems like the rest of my body is cancer free, the orignal disease has been distroyed, but we have one lymph node on the right side of my chest which is showing signs of the disease ie is a tumour rather than a lymph gland. Bummer !

So next step is I need to get the very accurate PET scan done to see if the cancer cells are really contained in the one lymph node or if there is activity elsewhere. If it is contained in one lymph node then there is a chance that specific targeted radiotherapy in this region may be possible to distroy the cancer, as I had a lower dose last time I have some "margin" left which we can direct at the offending tumour, to add too much radiation to my system needs to be avoided as the chance of creating other cancers becomes significant in the longer term.

On the other hand if there is found to be active cells in other parts of the lymph system, and these have survived five months of the standard chemotherapy and are on the move again we may need to move things up a notch. This basically means going for a very severe chemotherapy which wipes out my immune system completely, essentially nearly killing me but not quite. Then having killed all the immune system cells, including the cancerous ones, they put back into my body stem cells which were previously harvested from my bone marrow which grow a new immune system for me while I live in a bubble to avoid infection. The dangers are that either I get an infection, which could be fatal as I have no immune system, or they harvest cancer cells along with the stem cells in which case both will grow back together ( this is less likly as this type of cancer is localised and does not spread eaisly to the bone marrow).

So all in all a pretty grim day for a thanksgiving holiday, at the moment my sensible head is in full control and pushing me to do all the necessary things to deal with life which of course continues ( I have just interrupted this to help holly with her maths homework for instance ). It seems like the PET scan will take a week or so and then the doctors will get together on the 11th of December to decide the treatment plan. Treatment is likely to start just before or just after Christmas and to last for a few months depending on the type of treatment.

For those of you who are not in regular contact we have made progress on some of the dreams and aspirations from the last generation of the blog. I did in the end buy my beautiful Aston Martin, I should work out a way to post a picture on the blog, we have nearly completed the roof conversion on the house the last windows are going in and the painter is working away on the rooms, we were hoping to spend the holiday sorting out all our stuff into the new rooms and furnishing the house so that it would be really comfortable for the future, lets hope we can still get that done and I have every chance to enjoy it during my recovery.

Well thats all for now, I guess its enough for anyones day, speak to you all as things unfold.

Cheers

Gerry

The End of Gerryscancerdiary

After 6 months of blogging I think it is time to end the run of gerryscancerdiary as part of the transition back to our normal life. As things stand now all my treatments are complete and I am expected to make a full recovery back to normal health over the next six months.

Since the end of radiotherapy I have had nearly two weeks of holiday time to help my body recover, which will come to an end when I walk back into work on Tuesday next week for my first full day back in the office. So far the recovery has gone well, I do from time to time have some level of chest pain, as there is a reasonable amount of "collateral damage" to the tissue in my chest but its no more than you would feel if a footballer had head butted you at the end of the match. I do not yet have my usual energy level but I was blessed with a lot of natural energy before, so me at 75% can manage pretty well, and may even appear to be normal for a change.

Medically I am done with Hodgkins unless I am one of the unlucky 10 percent who gets the relapse, we will only know that in 1-2 years time, so for now the advice from the doctors is to get back in the game and just be a bit careful for a few months, I am not allowed to travel until mid September and, oddly, not allowed to go to my normal dentist until November so the hospital dentist is going to work on the abscess which made chemo 2 such a misery. I still sleep more than before, but that's no big deal, and my ability to concentrate seems to have returned to something close to normal.

Over the last weeks I have traveled with the kids and my mum to her house in Donegal for a week of playing on the beach, reading books and chilling out, despite the weather, which was not so favorable, but that did not keep Poppy and Holly out of the sea. Lees big conference in Glasgow went very well and she had articles published in the papers here and was on radio quite a lot, for a little while I felt like a press secretary for her as folks from the Sunday and daily newspapers called the house. Then I had a week with Poppy as Lee chilled out up in Deeside with Holly and Poppy had a watersports course at Queensferry, that gave me the time to do three critical things, reassemble my axel, sort out the loft for the builders who start tomorrow and to develop an obsessive interest in series one of "The West Wing" which my friend Charlie lent me and has been captivating all week, in fact I just finished the last episode.

Yesterday was spent at the farewell party for a friend who is going to Oz for a few years, Ken was Lees flatmate at university and introduced us when he worked at ICI Dumfries, so lots of old friends were at the afternoon garden party, which then developed for our group into a dinner party at our house - a great crack, as we say in Ireland, and a fantastic way to end this journey.

So I would once again like to thank all of our friends, family and colleagues who have managed to make our cancer journey a real journey of discovery, friendship, warmth and support which I could not have imagined in the whirl of my life before of this time - you have all been fantastic and we are privileged to know such a great group of people. In many cases you probably did not even realise how supportive just having normal conversations was when underneath I was sometimes not in as nearly a good a shape as I would let on, but all those interactions, even the phone calls from the couch for work, gave me targets day by day to help keep me going. It all really helped. Many of you have been great friends and comfort to us but to start to mention anyone would just keep me here all night, however the unsung hero of this whole time has of course been Lee, she had all of the worry inside but never wavered in her belief that this would work out fine and never allowed me to look on the dark side too much, I am an unreasonably and undeservedly, lucky man.

For the moment I am really looking forward to getting back to normal, though I think in reality normal will be different from here on. It seems to me we spend a short time on this earth and we forget that too often, the friendships we make and the positive difference we make for family, colleagues and friends is more important than all the other games which have different names like politics, results, blame, anger, frustration and winning. I feel have have learnt or relearnt that our work is the game, and an important game, but our relationships and the difference we make are the true reality, so I still hope to play well and with all the skill I can, because its fun and rewarding to do things well, but hopefully with more of a twinkle in the eye and more empathy for the difficult things which all of us face. So next time I ask "how are you" I will mean how are you really, underneath, with all the worries, crap and stresses attached I look forward to seeing a lot of you again face to face for that and many other conversations.

I will have a lot of nostalgia however for the good parts of the time I have spent at home with the family and our friends here in Edinburgh, it has been a very nice time for me and when I walk down the road here I now speak to two or three people every time, I hope I can keep a lot of that up. Spending so much time with Poppy and Holly has been just brilliant and has developed our relationships on many different levels, we have some plans to expand our vacation time in future to make the most of that while they still want to talk to "the old man"

So there it is, the end, I wish you all every blessing in the world and if I can ever help any of you as you have all helped us, it would be a privilege, just call, anytime.

Thanks

Gerry

Fully cooked - no more cancer boy !

As the title indicates I have now officially been fully cooked by my radiotherapy and my treatment for Hodgkins disease is finally, after six months, over ! :-))

It feels good just to write that.

I reality its all a bit of an anticlimax, I went in for my normal zapping and brought a nice big box of chocolate for the staff in the radiotherapy suite. They were pleased with the present and happy that my side effects, other than being a sleepyhead, are so small. We parted with the traditional "hope to not see you again" which is the happy ending greeting the staff all use for both chemo and radiotherapy patients. In reality one in ten of us which this disease will have to troop back into the game but we will not know who that is for about two years. For now we are cured unless someone tells us otherwise and plan to jump back into normal life with gusto, and a bit of a yawn occasionally.

Plans for gusto did not survive well today as I had to do the mundane stuff of picking up the kids who were playing at Jim and Sarahs. I did manage to pick up a cold bottle of bubbly on the way and Sarah and I opened it to celebrate the last treatment, Lee was at the airport picking up some friends from Brazil but phoned in to join the festivities and Jim came home from work just in time to raise a glass. Lee is off entertaining tonight as her big conference is winding up and we have a bunch of the great and the good over for dinner tomorrow so in an interesting role reversal I will be executive's wife for the day cooking (in between sleeps and looking after the childeren who I will press gang into setting the table and helping with the cooking).

So tonight I am sitting on the couch with Poppy, Lucy and Holly watching the "princess diaries" and doing my blog on the laptop - content domestic bliss actually, which I am sure I will miss once I get back into the swing of things at work. They seem to have stacked up a raft of nasty problems for me on my "return" (though as one colleague said - I never really went away) which will keep me going for at least six months to get things back on the even keel that I have taken a bit for granted over the last few years but which unravelled surprisingly quickly once I was out of the line.

So the next two weeks I am regarding as holiday, the consultant said my fatigue should peak around 7 days after the end of the treatment and then slowly get better over about a month, though I am on the robust side as far as my response to the treatment went - I just hope my cancer is not as robust as me !

The first part of the holiday I will take the kids to Donegal with Mum to her holiday house there, hopefully the weather will hold and we will enjoy days on the beach building sand castles, playing football and even the occasional swim. We will set off on saturday and meet most of my family in Bangor before heading to Donegal which will be great fun, we will try to organise a family dinner together. Lee unfortunatly will be stuck back here running her conference ( I have been fielding calls from the local and national papers all week as they are running publicity articles in the science sections of the papers and sunday magazines)

Once we get back then Poppy has a sailing course and I have a bunch of projects (including the much delayed back axel which is still sitting in bits on the floor of the garage) to finish in order to be ready for the building work on the house which starts on the 21st of August. Hopefully we will have on more weekend at the campsite in Aberdeen before we take the tent down for another year.

I will not be blogging when I am in Donegal so I will probably make possibily a final entry or two into the blog to outline how the recovery and the first few weeks in work goes before shutting it down hopefully not to need it again.

For now I would really like to thank all the friends, family and colleagues who have supported us through this whole experience and made what could have been a very difficult time actually a very fulfilling one. Your practicle help, cover in work, friendship, support, humour and taking us away from the grind have been wonderful and inspiring for me. Thank you all very very much you really made a difference, I hope I can be there for you all as much as you have been there for me and the family.

When I look back at this experience I would never wish it on anyone, specially at the start when we thought it was a 50/50 deal ( the odds for the most common types of lymphoma), looking at your childern and your wife and thinking "crap I probably only have a few years left" is not a good experience for anyone at any age. However having lived through the ups and downs and so far being one of the lucky ones, which has its own guilt edge attached having met many who did or will not make it, I can say that the experience will have changed me at a very fundamental level. I feel much less inclined to anger or annoyance, have more time and tolerance for people, and get less stressed about the normal "crises" of work and life. Lets hope I can hold on to that perspective when I am back in the flow of work and normal life, this can be a great learning experience if I am smart enough to learn and act on the lessons.

So back to the couch, the princess diaries, chocolates and childern curled up together, what could be better.....

Cheers and thanks


Gerry

Madonna and woodsmoke

We have had an interesting weekend the highlight of which was Madonnas concert opening her European tour. Along the lines of seizing the day Lee and I bought some tickets for Madonna just after I was diagnosed with Hodgkins and then with all the fuss about the treatment we completely forgot about them. Thankfully Lee had written the date in her diary and remembered that the concert was this Sunday just a few weeks ago.

At first, given all the other things that were going on, we thought of just giving them away to friends but after some discussion we felt that we would try and make it as my immune system is pretty much back to normal after the chemo. So Lee set off to Aberdeen for a bit of a break with the girls while I was having my radiotherapy last Thursday. I was rescued from watching back episodes of the West Wing (thanks Charlie) by Lees friend Lorna who took me out for dinner at a nice resturant with a terrace where we could see the sun set. A great evening where I was feeling the end of the treatment approach.

Lee then left Poppy and Holly with her sister (which they loved as Dot and Gordon took them to the Moscow state circus) and came back to Edinburgh to pick me up along with Gary and his cousin Maxine for the Madonna concernt. Sunday we headed off and had a great time at the concert staying over in Cardiff for the evening, fantastic show, but very tiring so on the way back on Monday I slept in the back seat of the car for about four hours while lee drove home chatting to Maxine (Gary had a meeting in London so could not travel back with us).

I then went to the hospital for my radiotherapy on Monday feeling pretty rested so afterwards I was able to go to Aberdeen to get the kids, staying over for the night in our camp and driving down in the afternoon to get the next dose of radiotherapy so now I am "medium rare" and have two more treatments before I am "well done". However after the treatment today I had to call my friend John and then just crashed out in bed for three hours exhausted. It seems like the fatigue which had been predicted as a result of the radiotherapy is now arriving and I have that old double jet lag feeling again, I can keep going when I have to but once I stop I fall asleep at the drop of a hat!

So tonight we are all home, Holly is sorting out the mail beside me, and all is well in the world, talk to you all tomorrow !

Gerry

Maintaining Zap Fatigue

I managed an unplanned day off radiotherapy yesterday as the machine was down for some sort of maintenance for the day. However it seemed to be making all the right whirring and clicking noises today when I was on the table so I guess they fixed it properly. As before the radiotherapy is still a pretty easy ride compared to the chemo regium however I am begining to notice a drop in my concentration and stamina levels now. Each evening I am sleeping about two hours more, which was predicted, and I can tell I am not myself by the pile of undone things such as bill and ferry bookings, axel rebuilds which are progressing at a much slower rate than I would manage if I was 100 percent. Never the less I am feeling fine if a little tired and a nap can always sort that out.

So today Lee, who is in a mad panic about her big exibition in Glasgow next week, has set off to Aberdeen for a few days rest in the forest (probably with mobile phone going constantly) I am feilding calls from journalists and scientists like a seceatary, and not a very good one at that, who all seem to want to speak to her for deadlines (three calls so far tonight as I write this blog). She has not yet succumbed to a hands free headset for her phone like me, but I see the day is not too far away. Unfortunatly, due to the daily visits to the hospital, I have been left behind to potter on my own - which actually I am looking forward to as I have been doing most of the parenting for a few weeks so a break when I can potter at my own speed and perhaps catch up on my backlog is a nice idea.

The kids were a little sceptical about going camping with mom as I have tended to be the one to take them camping in the past. Poppy had a long list of things she had to be reassured about like "who will take care of spiders", "who will light the fire" and "who will make sure trees dont fall on our heads when we cut them down". After answering the questions I did feel a bit more appreciated and useful than before.

Exercise has been a bit hit or miss over the last week as Lee was working so hard she would just get home in time for me to head off to the hospital so cycling was not on. Hopefully I will make up some time when she is away and I dont have the kids around, tonight I managed a jog around the park which was very nice in the great summer weather we are having here. Later tonight I am going to meet some friends for dinner in town and will look forward to the festival crowds building up. Lee has booked us some tickets for Sunday night to see Madonna in concert (which is OK now my immune system is back up to normal levels) I only hope that I do not fall asleep in the seat !

The axel has been properly dismantled now and all the bits are apart and being slowely painted, mostly by Holly, so that they can hold off rust for a few more years. The only bit I am stuck on is how to "press" the bearings off the half shaft and "press" the new ones on without damaging the splines on the shaft or the new bearings. I think I might visit the local garage and see if they will do that part of the job for me while I watch and learn. I then have to "drift" some bits together which I have discovered is not the gentle glide of a sailboat as I thought, but involves hitting things very hard with a rubber covered hammer to get them to go together. Perhaps "pressing" involves some big vice like contraption as pushing with thumbs, hands or hammer has not shifted anything so far.

In between this emails, conference calls and catching up on the daily paper will keep me amused between naps !

Cheers for now

Gerry

Still zapping away

Today I got my third "zapping" after a break over the weekend and so far I have not felt any effects at all which is good, however it seems from talking to the doctor today that the effect of the radiotherapy is cumulative and the fatigue can get a bit stronger later in the treatment, even that would be fine compared to the trauma of chemotherapy.

Looking back on the chemo now, when I am not having to be tough and stay in the zone, is pretty scary. Quite a lot of the time I was really feeling pretty rough but trying to appear as normal as possible so we could all get on with our lives and not "suspend fun" for the months it took to complete that part of the treatment. Mentally it was hard to put out your hand to get the injection which you know was going to make you feel terrible for a week, and then go back and do it again. I think some form of denial is needed to get through all of that and not be miserable, which actually we managed quite well. There is no doubt that I am very very pleased that the chemo is over.

Radiotherapy treatment itself is pretty easy, everyone gets to know you quickly as you have to get the same thing done every day. It is a bit odd to be shifted around like a slab of meat by three young ladies who draw on you chest each day but the banter is good and they are friendly up to the point where they all scurry out of the way of the radiation. The machine shoots the radiation from three different angles and has to be alinged within a millimeter or so and checked after each zap to make sure I have not moved but the whole thing only takes about 15 min or so. That means I can leave the house around 3pm and be home for just before 5 pm.

The big challenge of the weekend was the disassembly of the rear axel of my MG which is now spread over the floor of the spare garage ready for cleaning and painting before being reassembled with the new differential sparkling in the middle. The usual amount of cursing huffing and puffing was required to get it apart as many of the nuts had not moved for 30 years but after two days of fairly casual work while doing other things as well it succumbed to the pressures of releasing oil, brute force and occasionally a blowtorch. Lets see how it goes back together once its painted before we celebrate.

One of the things I have learnt from my illness is to be a lot easier with myself than in the past, partly out of necessity and partly out of a general feeling of less urgency with task completion and more enjoyment of doing the task. Hence when I got a bit puffed out having managed to get one half shaft, bearing and oil seal levered out of the axel I came in had a cup of tea and decided to water the garden rather than get the other side done leaving that to the next day. The old me would not have backed off until the whole job was done. Well its done now and I enjoyed doing it much more by taking my time getting it done.

That can be my "thought for today" Sitting in the garden the other night we did list four things as key learnings from the experience, the other three were:

1 Wanting to spend good quality holiday time with Lee, Poppy and Holly when the children are still young.
2 A feeling that any of us can die or be incapacitated at any time so to do things now that we want to do, if we can afford to (still rules out the Aston).
3 I was surprised how much I missed the connections with my colleagues and how I am looking forward to seeing them all again in September.

No great philosophy there I am afraid, but the summary is I have enjoyed being here full time for a change and actually I am pretty happy with my life, just pleased to have more of it to look forward too !

Cheers for now

Gerry

First Zapping done

The big event of the day was the start of my radiotherapy treatment at the hospital. That turned out to be pretty easy and much less of a trauma than the chemotherapy. I turned up to the hospital 15min early and they took me right away straight into the treatment room where I had to lie out on a bed while they moved me around to get the alingment lasers on the machine and the tattos on my chest to line up. Once that was done they all got out of the way and the machine moved around me adjusting its shields and then applying the treatment. I was quite pleased to see that the shields are quite complex using interlocking rods to create a very exact shaped apature for the radiation which is adjusted for each angle to protect the heart as much as possible. In any case I did not feel a thing this first time and as I write this blog a day later I have not had any side affects.

As a precaution I am keeping up some light exercise, drinking lots of water and keeping up a vitamin regium to protect the heart as best as possible from damage. My plan to cycle to the hospital was not carried out as I left the bicycles in Aberdeen without thinking I needed one for the hospital run so today I think I will try walking to the hospital and jogging back (just because I dont want to be sweaty when the radiographers are drawing things under my armpits !).

Apart from that event everything else is going well, I had a flurry of work just ahead of the radiotherapy, including meeting with some colleagues in the UK which sorted out what I would focus on when I returned to full time work. Poppy has just had her birthday party which involved four of her friends staying for a sleepover, I ended up trying to get them to sleep at 2am, 3am and 4am so I was a bit of a grumpy Dad this morning as you might imagine. My friend Shaun came over last night to updated me on the gossip from work and we swapped tales of growing up families while enjoying the warm evening in the garden.

So overall things are going well here in Edinburgh, it looks like the radiotherapy will be an eaiser run than the trauma of chemo, the sun is shining, and the demands of work are a bit lower as colleagues take time off for their summer holidays.

Cheers for now

Gerry

Idyllic break in the mountians

We just got back tonight from our holiday break up north and a great time was had by all. Initially we went to Lees parents cottage in the woods, set up the Mulligan family tent and spent our time cutting trees, making fires, and just enjoying the view of the hills. Lee was still working so myself holly and poppy joined in with the grandparents and had a nice time around our campfire. Lees parents house is in a wood with a small stream flowing by and you can walk out into the moorland and mountians so it is a fantastic place to camp as we have the backup of the cottage and yet have our own big tent in the woods and campfire. We left the campsite set up and will probably visit over the next few weeks, Lee and the girls may head up when I have to stay in Edinburgh for my daily radiotherapy treatments.

Once lee came up we had a few days together in the camp and then we headed off to Jim and Sarahs lodge at Loch rannoch in the highlands. I was looking forward to a wooden cabin with primitive facilities by the lakeside but the place was fantastic and as big as our flat overlooking the lake with lots of things to do in the surrounding area. As it happened some other friends, Pete and Jane, were staying nearby totally by accident so we had a great holidy. As we had three families together we were able to split up on different days to take care of those who wanted to go to the tea shop and those who wanted to climb a Munro (scottish mountian over 3000ft high for the US readers). My friend Jim climbed his first Munro and caught his first fish on the lake when "the Boys" went fishing and returned at 10pm with (my) large (3kg) trout which the whole family was able to have for a late tea. The good outcome was that all the boys managed to catch a fish over the two nights. Even little Collette the youngest of the group managed to climb a pretty impressive mountian overlooking Loch Rannoch. So a great time was had by all, my stamina has been really built up just in time for the radiotherapy and I no longer need to sleep in the afternoons.

So this week is planned for some work activity starting on sunday night through to tuesday then I go in for the "set up" session of the radiotherapy. The radiotherapy should take about 3 weeks and I should be able to catch up on some work during that period, once it is over the kids and I will set off for Donegal and I will build up my strenght for getting back to work at the end of August.

So I will let you know how the radiotherapy set up works out on tuesday and what the final timetable is for the treatments. We are all chilled out an relaxed here I hope your holidays are going just as well.

Cheers

Gerry

Thanks to Jim and Sarah

Plans fail in a nice way

As expected I could not muster enough energy to repair the back axel of the car in time for the trip down the A68 to see Neville so the boring family wagon was used instead. In reality that worked out well as it allowed me to listen to the agonising end of the England game on the radio which I would have not been able to do in the MG. I was sad for the England team as they played well and to go out on penalties is always disappointing. However the drive down to the south of Edinburgh on the old A68 is one of the nicest in the UK, but not covered in speed cameras which means you have to stick strictly to the speed limit (which actually helps enjoy the views).

It was nice to see Neville again as we had not met up since I had been in Hong Kong so we had some dinner and sat in the garden watching the sun set, Neville has a great view over rolling countryside which looks directy to the setting sun. We then watched "Shaun of the dead" which is a kind of cult british comedy movie which Neville loves and I had not seen. A few glasses of red wine were consumed and lots of good chat resulted though Neville complained of a sore head this morning.

Today off to the car show to help the team set up the stands, ribbed as expected by the guys in the club for not getting my car there but it was a super summer day so I enjoyed looking around the cars with some buddies and comparing notes on the merits of Weber vs SU carbs etc. After the drive up and down I did have a sneak sleep for a couple of hours but I think the fatigue is gradually lifting, I think as I am eating well my digestive system is stabilising and that is giving me more energy. Hopefully in a week or two things should be more normal.

Tomorrow I am off to work for the morning as a colleague is visiting from Germany, poor man has started working for my team a few months ago and has only met me once, so its worth making the effort to talk through his plans for the next six months. On tuesday we hope to set off on our camping trip to the cottage Lee's parents have near Balmoral up north, I will go up with the kids first and Lee will join us once she has finished some work she has to do.

So there may not be too much blogging over the next two weeks

Cheers

Gerry

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