ARoundWithRog - the idea
For those of you who have visited my profile, you will have read about some of the health challenges that I face, following a general diagnosis on Christmas Eve, 2004 and more specific diagnosis by the end of the second week in January. My world had suddenly imploded, the recent job promotion at work now had lost its significance, knowing that I had been presented with a far greater challenge.
The next six months were spent enduring tablet based chemotherapy, which was less onerous than I had expected. Previously I had associated treatment under this general heading as particularly severe, although I believe this is very personal as people can react in many different ways. Also, I appreciated that following reading the inspirational book 'It's not about the bike' by Lance Armstrong (seven times winner of the Tour De France), that there are many different chemotherapy regimes and associated intensities according to the cancer, the general state of health of the patient, age of the patient and the objectives of the treatment.
The decision I reached was, following chemotherapy, I would have a bone marrow transplant, using my own cells to try and consolidate and lengthen remission. This was the least risky of the three bone marrow transplant options open to me, in terms of the risk of not surviving the procedure and of long term side effects.
However, in the mean time, it was time to take stock of my situation. I was divorced, but now with a fantastic girlfriend with whom I had bought a house and lived with for several years, but who was not interested in marrying again. So, both being divorced, we just hadn't been particularly interested in marriage, although we had talked on the subject.
A devoted and united family of parents and two brothers, their wives, nephew and nieces was fortunately mine. A great 'extended family' who were also incessantly asking for news of my progress. Lastly friends, who were treating me as if nothing was up; just what I needed. One of my friends had been asking about my plans to celebrate my fortieth birthday, but had gone quiet after my devastating diagnosis - he had recently lost his elder sister to another form of cancer.
All of them were suffering on my behalf. This particular friend suggested we meet in London for a meal, two months into my chemotherapy. We met as arranged, followed by a whole procession of friends who happened to be 'wandering by'. A surprise party to ensure that if I felt unable to organise a party, they would not let me get away with it. What a tonic, particularly, as overcome with emotion, I publicly asked my girlfriend if she would become my wife. Needless to say, not a dry eye in the house as the champagne flowed, people who were halfway out of the door deciding to go instead for the last train, in order to savour the collective emotion of this unplanned proposal.
That at least gave us some good news to send out to our grapevines, as she had saved me any embarrassment by agreeing to my proposal. Plans for a wedding party were hastily made, trying to find a venue that was suitable and available at relatively short notice. Approximately eight weeks after the proposal we were married on 20-05-2005. There must be some significance in that number sequence. Hopefully it wil bring health and good fortune we thought.
It did provide all our family and friends with an extremely positive focus and kept us unbelievably busy pulling the plans together. It also kept the conversation away from cancer.
At the end of this period of chemotherapy, it was a good opportunity to rest and prepare ourselves psychologically for the procedure ahead. My wife and I decided on a grand motorcycling tour, despite the fact that she had never been a particularly keen pillion passenger, but knew that I was keen on this type of holiday. We spent eleven weeks that summer motorcycling around Ireland, Guernsey, Brittany, France, Spain and Portugal. It was a fantastic experience, but towards the end, we were both missing our sport; tennis for us both and golf for me. On several occasions, particularly in Ireland and parts of Spain, we had passed golf courses that were so perfectly designed to fit and integrate into the landscape, that I had wished that I had my clubs with me.
(Being 6'8'' tall, using hire clubs is not very practical - all my clubs are especially made 2'' longer to help me to reach the ground. It is particularly important to have such extended length to my clubs, as if playing a ball below my feet i.e. on a downward slope, it prevents me being unfortunately mistaken for someone going to the toilet in the open, such would be my almost seated stance with standard length clubs!)
But clearly with two people sharing a motorcycle's limited space for any additional luggage such as golf wear, let alone a set of golf clubs, the idea was put to the back of my mind - for now at least. On our return, we were straight back into the hospitals routine, with chemotherapy and daily injections to set things in place for the bone marrow transplant.
Disappointment and emotional stress returned. The amount of additional bone marrow and the associated minimum numbers of necessary cells for the doctors to harvest, had not passed the minimum requirement to enable me to go through with the rest of the procedure. So it was now down to watch and wait, as the risks associated with the other procedures were too big for me to get my head around at this early stage of my fight with the cancer.
We were about to leave for Switzerland where some very kind friends had offered us free use of a ski chalet for several weeks in January, when the cancer returned. It returned well inside the expected minimum time we had been given to expect. Desperate concern resurfaced in family and friends, so this was again a time to be strong for them, especially as at some point in the future I would need to rely on them to be strong for me. I firmly believe that is easier to be the patient in these circumstances than being a concerned loved one, who is powerless to determine a positive medical outcome.
Within 10 days, another biopsy (surgical removal of a tumour for laboratory analysis) had been taken and subsequent treatment started. But this time it was a regime that was intravenous and far more intensive. Also the decision to go for a donor transplant from my brother's matching tissue, was no longer a decision, but a 'Hobson's choice', if I wanted any chance of extending my future.
It was at about this stage that I realised that any chance I had must be down to research that had taken place in relatively recent times. My situation began to harbour in me ideas of what I wanted to do, should I regain reasonable health, following the procedure.
In just three months of tiring chemotherapy, this time with more side effects than I had previously experienced, with a five day hospital visit to deal with an infection caused by the drug induced neutropaenia (lack of white blood cells to fight off infection), I had once again achieved remission, which was by no means guaranteed, but is the necessary pre-cursor to any bone marrow transplant.
A short break and a first wedding anniversary party later, and it was more chemotherapy to provide the pre-conditioning to the transplant. Meanwhile, my brother had been having daily injections (five in all). I went into hospital for a final massive dose of chemotherapy, shutting down my immune system as far as was safe without killing me. Twenty-four hours later and I was given the cells harvested from my brother's blood the previous day.
Two weeks was the absolute minimum expected stay in hospital, with some having to spend up to twelve weeks, depending on complications. I was told that three to four weeks was typical. The problem for me was medical isolation (not in a bubble though) for the first 10 days until my blood counts showed some sign of improvement. This was the key evidence I needed, to confirm that I was now growing a new immune system courtesy of my brother.
My care was excellent as I had learnt through experience of our much maligned NHS. This period of enforced rest, solitude and relative inactivity really did confirm to me that I needed to have something to aim for. I did manage to wander about a mile and a half pacing up and down the main hospital concourse at four in the morning at a time that most were 'zonked' with the effects of the drugs and the general trauma and exhaustion associated with the procedure!
On this hospital walkabout in my dressing gown, I was escorted back to my ward by security as I had clearly been missed!
The two week time frame gave me an objective to aim for. Even before it had expired, I had been let out for what turned out to be three mile riverside walks with my wife to help keep me active and positive. I had decided that no germs were going to find me, in the same way as I had decided not to have any side effects from the chemotherapy (I had very few compared to many others). It would appear that so far at least, this positive mental imagery worked.
Two weeks and two days after the transplant, I was released from my voluntary internment. For those of us who take our freedom for granted, this type of experience surely confirms that we would not like to lose it. One cannot imagine an enforced loss of freedom, rather than, as in my case, a principally voluntary one. I suspect that anyone who has endured a similar experience as I have will have a new found empathy for the plight of prisoners, but particularly for political prisoners.
During my wife's daily visits, holidays were talked of and dreamt about. However, at this stage, the recommendation was to restrict movements to the UK only for up to a year after the transplant, so many of those thoughts came to nothing. But my mind wanderings returned to fundraising, as long as I could come up with a plan that sounded like it would be fun. Running a marathon, clearly was not forefront in my mind.
My interests in tennis, golf, skiing and motorcycling had to yield the answer, especially as some at work affectionately labelled me 'Action Man'! This was particularly the case in 1996, when I had persuaded a whole bunch of colleagues and partners to go white-water rafting down the Zambezi whilst on a sales incentive prize five day trip from work. One or two, who had taken a bath in the mighty Zambezi admitted that they perhaps would have preferred to spend the day in the bath back at the hotel!! However, as expected, I was on cloud nine with the whole adventure.
On returning home, a lot of time was spent resting, only playing sport as energy reserves allowed. It was at this time that rides on my motorbike were invaluable trips into my own world of child like escapism, freedom and enjoyment, free from the pressures of doctors, loved ones and traffic congestion!
Soon I started to formulate a plan based on a golf holiday format I had been part of with friends for the last twenty or so years - the Endurance Golf Tour. In its earlier years it comprised fourteen rounds of golf over eight days. Day one and day eight involved a drive from the home counties to Scotland (or return) and included a round of golf on the trip up and down. The other six days were spent playing two rounds of golf every day. All shots counted. With our advancing years and family commitments for some of the 'Endurance Boys, this format is now limited to eight rounds in five days, including travel, but in essence, the spirit of the format remains.
My initial fundraising idea was to play all the courses in the UK, but I soon ditched that idea, as it would take literally years to complete. The next idea was to play all the courses in nearby Surrey in three months, but that equated to almost one and a half courses every day - far too exhausting, knowing how tiring five days of this can be. The next development came when my wife was understandably unsupportive of me spending three months doing nothing but playing golf every day, but indicated that three weeks was a period she could live with.
In no time, the idea of one course per day for three weeks arrived, but that didn't sound difficult. Most people would struggle with this, but it somehow failed to capture the imagination. Cue thought buried in back of brain, from the bike trip last year - motorcycling, but having golf clubs with me. Brilliant!
This sounded perfect as in the days when private cars were not the norm, people went to play golf by travelling by train or motorcycle. Many of the early courses have railway stations or tracks running right next to the links. So it would perhaps appeal to traditional golf clubs, and combining two communities (bikers and golfers) who on the face of it could not be more disparate.
Next question was which charities to support. Clearly the idea of research in the field of blood cancers seemed relevant. Also, those charities close to the development of the resources and treatments to help people now. Quite quickly, I had a picture of the charities I wanted to support.
The next issue was where to play golf. 'Where would I like to play?' seemed as good a criteria as any, so with golf magazines and websites at my disposal, I soon came across listings of the Top 100 courses in the UK. Sounds a judgemental list, but most of the top courses had been on this type of list from whichever publisher had formulated it. Many were household names.
Three weeks, twenty top courses, by motorbike, with clubs on board for additional interest (and a problem to solve). As the top 20 courses were not appropriately located to make travel between them feasible in the timescale, the map came out to determine the target courses, all of which come from the top 100 listings. Being a UK challenge, playing courses from all four home nations, I selected national charities - Leukaemia Research Foundation and The Anthony Nolan Trust.
When? Perhaps not so much a decision, more like. . . . . as soon as possible. . . . . . .
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