In December when I had my first endoscope at Nuffield and Dr Simon Dover and his nurse came into the room and told me I had a tumour, he said that I had a long road ahead of me. It was difficult at the time to really understand what he meant by either 'long' or 'road' but it was easy to realise that things wouldn't be the same and there would obviously be big life changes along the way. Since then, what has become abundantly clear is that the road is not a long straight path or a motorway but is more in line with Dr Stuart's analogy of a set of shifting sand dunes that will change remarkably from one day to the next. It's a difficult thing to describe unless you are in the midst of the journey trying to navigate the road however this last week has been a time where I've become more aware of the long haul and the physical and psychological effects that this is now having upon me. If I'm honest, this is probably the best that I have felt for many months now and this has had both a positive and negative effect on my emotional state. Physically I'm still weak and have fallen to 67 Kg, I shake and wobble a bit however paradoxically I actually feel better than I did way back in December when I was being diagnosed.
My chemo on the 24th February coincided with the Bowling Club AGM. As president and secretary I would have been expected to be in attendance and keep the show going however due to the chemo procedures on the day I obviously could not attend. I was delighted however that the AGM attendees recognised the work I have done for the club over that last 6 years or so and awarded with me an Honorary member status and was pleased to see David inaugurated as the new president, June with the secretary role and Darren with VP responsibilities. My sickness taking me away from the club had left a number of unanswered questions and vacant roles so it was a relief that those problems were now being addressed and a normal service could resume. On that Friday when I returned from the hospital there were no real major side effects from the chemo apart from a slight amount of nausea. I think I probably had night sweats and had to change clothes through the night but there was nothing too serious happening. On the Saturday, I was up and about and just a little more lethargic than usual. Eating was not as much as a problem as the last rounds of chemo but the volume and calorific content of the food stuff was probably not great. At this point we were probably reflecting on the last chemo cycle and fearing the worst when I really never consumed any food for over a week. On the Sunday I spent the day in bed and again through the night I was changing clothes two or three times due to the sweat. On the Monday I was up and about but mostly sitting watching TV in a vegetative state. On the Tuesday I was back in bed for the day again due to the lethargy however was still building up food intake in order to recover some of the lost energy obtained through the ordeals of the previous 3 weeks. Shona the district nurse visited me on Tuesday whilst I was still in bed. I have a weeping sore now from one tumour under my arm and this is being dressed and attended by the district nursing service. At the time I was alert however was too shaky and wobbly to really get up. Shona is fantastic, as are all the district nurses, and as well as dressing the wound gives me the encouragement to dig in and keep going. On this occasion I think I realised that there was a lot of work to do in order to replace the lost energy from the last three weeks and I knew at that point that the long road was about to come into view again. On the Wednesday I was up, had an appetite, was eating and actually started to feel normal again. I think by this point that the chemo side effects had largely gone and that I was starting to resume a normal existence. I was still wobbly and weak but I started to realise the positive impact on my well being that a quick snack would have and immediately starting looking for any rubbish in the kitchen that I could consume in order to boost the calories. I took delivery that day of a server that I had agreed to build for a project that Darren was working on and spent the day doing some hobbyist work to keep me interested in something. It's something that has become a little hard for me recently as there has been a huge drop in my engagement with the rest of the world whilst not being involved in HSBC or the Bowling Club or anything else so having a mini project land was something that I really needed in order to keep my mind active and my body actually interested in something that was not sitting as a vegetable sitting in front of TV.
By Thursday I was feeling pretty human again and had an appointment at the new Queen Elizabeth University Hospital for a a bone scan that was organised by Dr Yosef. This was due to the fact that the tumour in my mouth is more normally associated with bone cancer progression than that of lymph node spread. The visit would consist of two appointments, the first one would be to receive a nuclear injection and then four hours later I would be scanned. On the morning, Carol and I got up pretty early as the routine to get up and out of the house at this point is a fairly stretched episode. We were en route early and took the M74 with no major hold ups or issues. We got to the hospital and parked easily in car park 2 with no hassle. We walked the short distance to the main atrium and I was amazed at the building that we were now in. On arrival the hospital feels more like a new mega shopping complex. As you walk in there are coffee shops, a Marks and Spencer's, pharmacies and other shops and eateries. There are terminals on the wall offering 'Self Service Check In' and a variety of people dressed in colourful clothes offering 'Assistance'. This was something that I didn't really expect as I have this hospital phobia thing and a set idea of what a hospital visit looks like. We were scheduled to visit the Nuclear Medicine centre on the first floor and headed for the elevator where we were confronted with a queuing system. You press the floor number you want on the outside of a set of three lifts and the console tells you where to queue - A,B or C. I'm not entirely sure how effective this type of system would be as it seemed that every lift would stop at every floor when things started to get busy. Obviously I missed the subtly of the lift design as I just walked in expecting to see a panel of numbers for floors but there were none. We shot passed the first floor, up to three then back to ground again to exit the lift, realise the folly of our ways and then renter after selecting the appropriate floor we were heading to. The world is an amazing place, I love technology but sometimes I think that we are running away with ourselves by engineering stuff for the sake of it with no real purpose or meaning. Sometimes it feels like this is just a means to an end and whilst the mega corps inject these ideas into our lives, things just get more complex to deal with. On this particular day I wasn't up for re-wiring my brain about how lifts should work but went with the flow anyway and eventually got to level one where I presented my invitation written on recycled paper to the receptionist who took my details and asked me to take a seat. Within a few minutes a well tattooed male nurse came to attend to me and took me to a room where he searched repeatably for a vein. Eventually we both settled on a vein on my right arm and he progressed with filling me full of the nuclear material. On reflection I'm not entirely sure how these guys can deal with this material five days a week as there were no protective shields or clothing but at this point it's too much to consider on top of the new elevator systems and the hospital that was more like a shopping centre. I had the painless injection, got my coat and headed back home with Carol to have some lunch.
At home I had a few interchanges with the pallet shipping company that was installing software on the server that I had commissioned for Darren. I had some soup and then was back on the road again for a 20 minute journey back to the hospital to get my scan. This time we knew what we were doing and managed to get to the first floor without a major diversion via the lift systems. We sat in the sub waiting area for a few minutes and the nurse I had met in the morning came by and picked me up. We entered a very pleasant industrial like room with a variety of major looking pieces of equipment in it. The nurse asked me to lie on a bed which had a grey canopy over it with the letters Seimens emboldened in the traditional light blue. I realised at this point the difference between private and NHS care. At Ross Hall there is nothing near the equipment levels of the NHS. They have a CT scanning machine and a few other pieces of equipment in the radiology lab where I have been going, but this one facility in the NHS Nuclear Medicine hall was probably larger than all the machinery that I have seen at the private clinic. Ross Hall however has a brightly lit ceiling with pictures of birds and trees and doctors and assistants who have their radioactive clothing styles in pink and blue kilts and if you want a coffee or a tea there will be someone there to assist. It's a facade really and you only realise the importance of the NHS when you are confronted with machinery and equipment that can only be afforded by such major institutions. When dealing with cancer you realise that the NHS is a fundamental part of treatment and without this service it is difficult to understand how a population would have these possibilities of health assurance. I did wonder however about the practicality and validity of such a huge piece of investment and how future generations would be serviced when life expectancies and demographics have progressed beyond where we are today. Even though this was my first real encounter with NHS hospitals, there is no doubt in my mind that the service is absolutely vital for the population and my overall perception of how Scotland has grasped the emerging health problems with the QEUH is no doubt first class. The only downside to the visit was the smokers hovering about the outside of the hospital, most is gowns and pyjamas even though it was only a few degrees outside. This and the amount of cigarette butts piles in the bushes makes me think there is a policy that is missing here. In summary this is a fantastic facility and I don't think Scotland praises itself for having such a great facility to service the population. I get the travel thing and distance it may enforce upon those who now need to travel but in reality the site is well serviced by the M8, M77, M74 etc that the balance between travel and opportunity for paid for service should not be that much of a great debate.
So the hospital visit went fine, I'll get the results in a week or so and I was home on Thursday afternoon feeling fine. Again I slipped into TV mode after finishing the software installation with the pallet guys. I have hooked onto a History Channel show "Mountain Men" and have become a bit obsessed with the adventure and solitude side of the various characters that go off into the wilds of the US mountains and live from the land. I love the acts of solitude and adventure and it amazes me that people can actually make a living off grid. I know there are thousands of examples of this in the US however trying to reconcile my life until now with those who actually need to make a living to survive is a bit difficult for me. I suppose what has been happening is a complete review of my life to date, the accomplishments and then a comparison with others about where they got their own life to. To be honest this isn't something I feel like delving into too deeply as the results aren't very good however I tend to have a couple of trains of thought at this point in time. Firstly on the accomplishment side, the way I look at this is more from a Karma perspective i.e. doing the right things, doing it well and feeling a notion of calm from the way I went about it. From this perspective I feel I get a few ticks in the box and can use this to feel a little more settled than looking at physical awards won or buildings built. The other side of this realisation is the feeling that no matter what happens next, this isn't the end. I imagine that at the end it's up to your mind to take you to the next waypoint on the journey. Lets face it the universe is so extremely misunderstood at this point that literally anything is possible and who is to say that the mind is not strong enough to determine what happens when the physical container decides to give up. This feeling does not contradict religious teachings and again this helps me round the background of my life with the science and learning that I have accumulated over the years. I know this is a bit abstract but what gets me through the day is the thought that at the end I will be able to choose to either come back for another throw, lounge about in a new heaven or decide enough is enough and have a final sleep. My opinion at the moment is that I'll come back for another shot but will definitely take a different view and approach than I've had this round. To be honest this round I've not really seen my true potential as I have been a little bit lazy and probably more confused than I should have been. Anyway, these thoughts help me and are getting me through the day.
By Friday I was surprised that my voice was returning to normal, I was feeling like I had to get up and do something and my appetite was getting better and better. I went with Darren to the yard and met the guys there after dropping off the server. John, Deek, Martin, Billy and Del were all in attendance and at times it was difficult to hold the tears back whilst we chatted about club stuff and the general situation. I could see my presence was welcomed but also made the guys a little uncomfortable as I was obviously a lot thinner, fairly gaunt with clothes hanging from me. Shona had told me that most people need to have a defence mechanism when dealing with terminally ill people. She said that the realisation of impending death was not something that the human brain deals with very well and that the constant assertion of 'Are you ok?' is something that helps the counterpart of the conversation to reaffirm that there is nothing to panic about. I could see that there was this realisation in the office and the fact that I didn't look ok was something that made the guys uncomfortable and there was no possibility of the 'Are you ok?' reaffirmation being of any use in this particular situation. I suppose this is the general trend that I will see as things progress. There will be less and less ambition for contact from people as the 'Ok' affirmations will become fewer and fewer. Anyway, it was good to see the team again and get out and to be almost normal for a while but at some point I had to get out of the office before the water works started and Darren took me home.
When I got home on Friday Carol was waiting patiently, worried about my first venture out. I went upstairs to change into looser clothes that would actually fit and whilst changing I was emotionally overcome by the new situation. Realising that the path was now open again left and right and that I wasn't careering towards a bed in the local hospice I had a welling of emotion that forced the flood gates open again. Carol was there to comfort me and that itself caused yet another wave of emotions as I started to really understand what hell she had gone through over the last three weeks or so. It was all a bit much coming to terms with the fact that I was recovering and life was starting to look normal again as well as accepting the fact that this was probably temporary and that things would absolutely change as the journey through the shifting sand dunes continued. I spent the rest of the day and night in a fairly confused place. Happy that I was feeling well however not entirely sure of what the future now held. I had a few forms to fill in for HSBC and used this to take my mind of the subject and a few hours later the emotional aspects had gone but I was now left with an empty feeling of 'What now' which I am still trying to deal with.
Today (Saturday) was a lazy day getting out of bed and showered for around lunch time. Dawn was due to visit however called off as Alan had been suffering from a cold all week and didn't want to run the risk of giving me anything nasty. Although we were looking forward to the visit it gave me a good chance to update her on events over the phone as well as play back in my own mind the progress that had happened throughout the week. Shona had noted on Friday that the tumour under my left arm was not as active as it once was. I had noticed that the tumour in my mouth was shrinking every morning when I awoke and that my teeth had now started to solidify to the point that I was becoming more confident chewing. This on top of the fact that my right arm tumour now seemed a lot smaller and the mobility of my arm was coming back made me describe a more reasonable physical state to her and made me realise myself that we may actually be looking at progress from where I was say three weeks ago. I know myself that the morphine requirement itself has almost completely gone and I am being pain managed alone by the fentanyl solution. Whether I actually need that at this point in time is difficult to tell as the way I used the morphine was when I was actually experiencing pain. Currently I have no pain or pain breakthrough events so again I'm looking at this in a very positive light. I have also been eating well and have not experienced any food sticks for a while. Again this is a slight indication of progress and hopefully this could be leaning us towards shrinking rather than growing tumours.
I'll sign off now. I realise it's been another rant and congratulations to those who saw it though. It looks like the dedication of Carol to get me nourishment and be by my side constantly for the last few weeks living a real ordeal has got me to this point. For this I am eternally grateful and will probably never realise how much pain and suffering she has personally had to endure over the piste. It also looks like this round of chemo is more suited to me and the realisation has been made that if the chemo regime had not changed, I would not have completed a 3rd round of EOX and would probably be looking at a short period before the end by now. Fingers crossed that the trend continues and we get more results from the current process.
As the song goes, one day at a time, that's all you can ask for.
