Tonight before I get to the blog I'd really like to give special thanks to those who have donated via Justgiving to the sponsorship effort which is looking to raise £10,000 for MacMillan. It really is much appreciated and is giving me a boost to see how many people out there are supporting me through this story. The team has now amassed to over 40 who are looking to climb Ben Nevis in late April and the training is well underway with many summits of local hills recorded so far - keep up the good work team.
When I visited Dr Stewart, the surgeon at Ross Hall, he said that the journey I was on was unpredictable and to think of it more like shifting sands than something with a direction. What he meant was that things could change so dramatically and so quickly that it can feel that the whole landscape has changed overnight and I must admit his analogy is probably the most accurate way of describing the daily happenings of my life over the last few weeks. I've slowly but surely came to accept the transitory nature of the illness and how one day I can feel like the end is near and then a phone call or a meal later things are almost normal. The latest episode started a couple of days back when I noticed a strange pattern that had started to cover the right hand side of my body. From where the tumour under my right arm starts, a rich red spider's web of skin extended down my right side and all down the inside of my right arm. There was no immediate pain to speak of but the nature of the discolouration gave me concern as this looked like the chemo interacting violently with nerves and veins. When the MacMillan nurse visited, I took the opportunity to show her the issue and she agreed that this was a very strange thing indeed. Actually at every point each consultant has said exactly the same thing from the fact that I have no symptoms of oesophageal cancer to the fact that the tumours locating to lymph nodes under my arms is almost unheard of. We agreed with the nurse that this was probably due to the fact that I was using a hot water bottle and it was most likely to be a sweat rash or something similar so I decided not to apply heat to the area for a while. I stopped using the hot water bottle for a couple of days but the intensity of the pattern became deeper and the two of us became more concerned. After checking the chemo handbook about what you should do under certain circumstances and discovering that my symptom was not yet known, I decided to call Ross Hall just to see if there was something that I could cling on to which would suggest that I wasn't turning in to an extra from X Men the movie. I got through to Jennifer at Ross Hall who suggested that the pattern was weird and that it would be an idea to let Dr Yosef see it. The techie in me came out and I suggested that I could take a picture and drop an email to him to save him the hassle of interacting with the public and keep me tucked up in the house for another afternoon, at this point I hadn't been outside for 7 days. Jennifer thought that was a good idea but after 10 minutes trying to get Dr Yosef's email she eventually gave in and asked me to come into the hospital.
The journey to Ross Hall is around 25 minutes at the times we travel which is an easy commute we feel. We also end up passing Silverburn, Sainsbury's and M&S which helps address some of the shopping en route. We arrived at Ross Hall around 1pm and were shown into the original room I had the chemo. It brought back some memories but none of them were terribly bad. We watched the dog walkers and poo pickers again although this time the weather was a bit nastier and again my decision not to own a dog was reaffirmed. Jennifer came to the room and asked to see the markings and again I was told that this was very strange and that she hadn't seen anything like that before. She ordered us some tea and we waited for Dr Yosef who eventually appeared took one look at me and said that I had burned myself with a hot water bottle. Essentially the morphine had been working that well that when I was going to bed with a bottle under my arm, the morphine was doing a great job of keeping me unconscious at the same time dulling the pain receptors so that I was basically cooking myself whilst I slept and never noticing it. We agreed with Dr Yosef that it would not be wise to continue with the hot water bottle treatment and that the correct way to look at pain management for the tumour was to increase the amount of morphine I was now taking. As it transpires, the MST slow release I had moved to was only 10Mg per 12 hours which was effectively half the dosage I had become used to so I had obviously started to compromise with more heat etc etc. Dr Yosef offered me some cream to help with the burns and my typical male instinct again was 'no it's ok I'm fine'. He looked at me with a growl, something that he has perfected over the 40+ years he has been doing this work and I immediately changed my tune and said yes that would be great thanks. He then examined the tumour and reported that it had not grown anymore since the 29th which was probably the first piece of positive news I have received since the 5th of December. He left to get the prescription and we waited in the room for him to return. I haven't been emotional for a while but the generosity of Dr Yosef and his obvious desire to help someone in his 'flock' got to me again and the tears started to well up. Again, if I see a chink of goodness in people these days at all I tend to lose it a little bit. We are so programmed to expect the worst, to fight and compete that when people genuinely put others before themselves then I tend to find it difficult to reconcile and often end up in that sort of state. Dr Yosef came back, we went to the pharmacy in the hospital, picked up yet another bag of drugs and headed home.
It's pretty much just sleep, TV, food, TV, Internet, sleep, TV, sleep at the moment. Where I had interest in things before, most of that desire has been lost and tasks which I would have enjoyed or at least used to pass the time seem so pointless now and the thought of tackling them just drains me. In 2016 I was the President and Secretary of the local lawn green bowling club having been a member of sorts for over 34 years. As secretary, the first couple of months of the new year are busy whilst we prepare for the new season and I'm usually organising meetings, creating documents and sending letters. 2016 for me was a stressful year however both with working and non working life and the effects of both of these worlds collapsing on me for an extended period of time has in some ways contributed to my overall condition at this point. It's a strange thing to say but I always knew I would end up with this disease and in this condition as I often dreamt about it. I would dream that I would be sitting in my parents house telling them I had cancer and that it was advanced. These dreams had gone on for years and were a crystallisation of dreams I had when I was a child where I would often dream of death and dying. I know, it's a lot for a kid to think about but I think being presented with death at an early age and having been involved in a car accident when I was 7 probably had something to do with it. As I got older the worry, angst and fear of dying became more real as friends and family forever left and the dreams I had were a manifestation of both the fear and the accumulating symptoms of stomach acid and acid reflux. Working as an architect on the largest HSBC programme at the time, coupled with the stress and complexity of working with global and off shore teams meant that my work life was not a simple, stress free environment. As the bowling season commenced and problems started to become a weekly and daily occurrence, the stress combination and aggregation of work and non work life intensified as the months rolled on. I knew myself that my health was degrading but it was impossible to break the cycle either at work or within the bowling environment and I soldiered on whilst trying to work on a diagnosis for my uncontrollable acid bouts with my local GP Dr Kumar. At the same time the dreams continued and I felt that either my body was trying to convince my mind that it had cancer or my mind was trying to inflict the illness on my body. Either way when I was eventually told that I had the disease, I wasn't shocked, it was something that for years I had prepared myself for and it was almost a natural conclusion to decades of worry. When I look back now I understand the mode of operation and how things came to be however I now understand that it didn't have to be that way.
I still listen to my mate Ajahn Brahm now and again but it's got to the point where I now know most of his stories and I can usually get to the punch lines of his jokes before he does. In the initial days when I listened to him he often would talk about the scenario where people worry so much that the things they worry about come to fruition and his teachings can usually be summed up with things like 'why worry?'. In retrospect this is exactly where my mind should always have been. What is the point in worrying, what good does it do and how can you see this anything other than a negative emotion. For years this has been my primary emotion however. I worried about money, I worried about credit ratings and my health, I worried about my house and the car, my reputation my my my .... If I'm honest, although I would do anything for anybody, help those in need, go the extra mile, stand in other people's shoes .... I was singularly focussed on the perspective of me and nothing else. Again on reflection, this is entirely unhealthy and is so consuming that the reality of what was actually happening around was completely ignored. This is probably a lesson in life that I wish I had learned so much sooner but if I had learned to 'let it go' then I reckon that I wouldn't be in this situation now.
I've been reading Remarkable Remission over the last few weeks which documents cases of people with cancer who, for no known medical reason, go into remission. As well as things like meditation and looking for happiness during your day, the common aspect of 'letting go' comes through with all cases. Since this episode started, I've been of the opinion that there are things that I have done that have been the result of the 'process' or things I have fallen into that just keep the plates spinning while I watch the world go by. A lot of this stuff however has been stressful and does not contribute towards the need to be happy, to let things go and to be calm. For 2017 therefore I have decided that the conflict and stress generated by the various positions I've held need to be put on hold for a while. I have decided to take my life in a completely different direction which counters stress and promotes a level of relaxation that would make Garfield the cat look athletic.
Today was another day in the shifting sands as I attended a dental appointment that I had scheduled before xmas. I have a lump on the roof of my mouth which when I asked the nurse at Ross Hall about it she said yes that is a bit weird and that I should contact the dentist. The dentist suggested that this was not an abscess and was more likely to be related to the cancer that was going on elsewhere. Again if this is the case then this is another very rare occurrence of the metastasis but is symptomatic of the landscape completely changing over night again.
