It's been almost a week since I last updated the blog and to be honest, even though friends and family are heartened by my writings and try and encourage me to do more, the last few days have been really tough and I have had no motivation to get the keyboard out. Today is an especially tough day for me though and I felt encouraged to get something on paper in order to stem the emotional roller coaster that I will no doubt be on for the next few days, let me explain. I love the mountains and I love being remote with nobody around, just me and the elements. Since I was around 10 years old I have always skied, initially in the Scottish mountains but as I got older, like others, I took my skiing to the US and Europe. Although the feeling of remoteness and being alone doesn't often happen on a ski slope, I have found that at certain times of the year, you can almost have total solitude in some of the resorts in the US. The snow helps with the remoteness feelings as this helps dampen any sounds around you and also raises a barrier when the storms move in. For the last few years, the annual ski trip was really what I lived for although the last couple of trips were to Europe where the feeling of solitude never really happened. This year I had decided to book a trip to the US again and we were all set to return to Steamboat where Carol and I probably enjoyed our best ever ski trip. This is really saying something as the weather that year wasn't particularly good and on this journey Carol also fell ill towards the end of the holiday and missed a couple of days skiing. In saying that though, the resort was fantastic and the hotel was first class so when I booked to return this year, both Carol and I were really excited and couldn't wait to get back. In France last year, I had a new pair of skis stolen and I had even gone to lengths of getting a new pair of identical skis for the trip which I have still to test run. So as you can imagine when we learned of my illness and the plans for therapy, I cancelled the holiday. Today we were meant to fly to Colorado and the pair of us are pretty heart broken that we can't make it. I have hopes that one day I will be able to ski again as the feeling of total freedom it gives me was something that I really lived for although judging by my condition over the last few days I am starting to fear that I will never ski again.
Last week I visited our solicitors and started making preparations for my will but apart from this morbid adventure I actually felt ok and on Thursday I went for lunch with Jo and Darren in Bothwell and enjoyed a hearty bowl of pasta. On Friday I entertained Vince, Rich and Keith for a couple of hours and then on Saturday Mark popped over and we had another day of feeling normal. Sunday was however the start of a very bad cycle and I had organised to see Ramesh and Alistair but I had to call it off as I had been feeling rough all day. On Sunday morning I awoke with a really bad headache and I put it down to the fact that I had reduced my morphine intake and I felt that I was getting withdrawal symptoms from reducing my intake so quickly. The rest of the day I sat on the couch with a blanket around me and felt really horrible. Occasionally the pain in right arm would be so intense that I would be crunched up in a ball screaming in pain and the drugs I was taking didn't seem to make any difference. This continued on Sunday night and through into Monday where I also started to suffer from severe back pain. By this time I was taking any drugs I could in order to try and reduce the pain which at times was becoming excruciatingly severe. With little sleep on Sunday night, we awoke with the alarm as we had a scheduled visit with the Kibryde Hospice. I was referred by Lindsay the MacMillan nurse for complimentary therapies however I was interested in getting into the system with Kilbryde if it came to the crunch that I had to be tended to there. Kilbryde Hospice is a very impressive place however I was fairly shocked to learn that there is no end of life care at the facility as the NHS have not yet decided to allocate beds there yet. It seems fairly poor that the nearest facility is St Andrews Hospice in Airdrie and that there will be a limited capacity for service available, where as there is a fantastic facility in East Kilbride ready to start but is limited by NHS funding. We met with a staff nurse Sine (Sheena) at the hospice and we had a good hours or so going over the more nasty side of the process and cancer treatment. If I'm honest, Sine was just being truthful with us but the direction of the questions we were asked took us to some fairly dark places and Carol at one point became quite emotional as the information coming forward was not in anyway positive. I filled out some forms as did Carol and Sine suggested that she would be in touch with us with a recommendation for therapies that would help, things like reiki and aromatherapy etc. We decided that we would not be interested in any of the group therapy sessions. I'm not particularly anti social but my preference of solitude and remoteness certainly trumps any idea of group therapy.
The bouts of pain of Monday continued although the burning pains in my right arm had decreased considerably although I had decided to start taking the drugs for nerve pains on a more regular basis and I think this had the effect of minimising the pain before it actually happened. I had also decided that minimising the morphine consumption was not a great idea and I had also started to take these pills at more regular intervals. The overall effect was that Monday was not as bad as Sunday however Monday night was again another night of back pain and I struggled to get any sleep again. Whilst all of this was going on, I noticed that the tumour under my left arm had grown to about twice the size it was before chemo and the lump in my mouth was also growing. The effect of this and the pain combined with the low energy feeling was another kick in the head for me. I had started to figure that the chemo wasn't working, the pain was an indication of the increased ferocity of the tumours and the fact that I was starting to struggle to swallow food was an indication that the internal tumours were also on the march.
As Dr Stuart said, it's like a journey on shifting sands. Before I started chemo I felt that bad that I had basically convinced myself that the end was near and I wouldn't make the chemo cycle. After the first few days of the chemo cycle, I felt that low that I thought I wouldn't see the week out. Eventually things started to change and for a week or so I actually felt as if I was in a healing cycle and things were getting better. Then the illness grabs and slams you against the floor and you feel like you are back to square one again and having to deal with the emotions that this throws up. Carol and I have been in cuddle and cry mode for a few nights as we are again grappling with the realisation that there is an impending end to this story and it doesn't end well. The chemo cycles gave us some hope of recovery but the feeling I have now is that this is giving light to a very small period of normality and the price to be paid for this is probably 2 weeks of pain and sickness. How much longer we can persevere with this cycle is completely unknown at this point however I realise that there will be a time that either me or the consultant will make a call that further cycles of the poison are not worth it and we would at that point prepare for the inevitable.
Today we had another appointment with the solicitor to finalise my will. I started the day with a shower and immediately became aware of hair on my face and in the shower tray. As predicted I am now starting to loose my hair. I am not particularly upset by the fact apart from, the fact that I'll miss the three weekly trip to Danny's. If I can face it tomorrow, I'll make a trip to get one last cut in order to minimise the amount of casting I leave about the place but will see how things go.
The rest of the week is fairly busy. Tomorrow I'll visit Darren, it's his 40th and we have a card for him. I'll try and get a hair cut and then work with the guys from the bowling club to hand over some secretary tasks. Thursday I've got a visit from the pensions people as I need to sort some of that detail out and then on Friday we have another visit from MacMillan where I will look to optimise the pain management side of things.
