25
Jun
11

up the middle and turn left

I had a different title for this post yesterday and should have written it down at the time as either the chemo or the other drugs they give me seem to play with my short term memory, but I like this one which was the extent of our plan for a weekend caravaning trip. I have been started on yet another drug, amlipodine, which is for high blood pressure, something I have never knowingly had, but seems to be a side effect of the trial drug, regorafinib.

The time between my hospital visits seems to pass far too quickly but I have crammed a fair bit into the past two weeks including completing the judging of the Glasgow Institute of Architects student awards at Strathclyde University following from our visit to The Mackintosh School of Art the week before, a day out with Lanarkshire Business Group at Hamilton Races, my first CT scan since I started treatment and a weekend caravan trip up North not mention squeezing a bit of work in too through necessity.

I have landed in a 4 person ward again. They other patients are nice enough but as I had mentioned before there are draw backs. One noticeable one this time is one that snores pretty much all day and all night, I am sure I have my moments but nothing on this scale! Another thing I will grump about is toilet etiquette and in particular the leaving of floaters and hair in or on the toilet, I know folk are not well but even when I was at my worst and in a room of my own I wouldn’t want someone coming across that! some of the banter is real strange too, I wouldn’t like to elaborate too much as there is always the possibility that someone will read this and recognise who I am talking about but some folk can talk some amount of ‘floater’.

I was hopeful when my treatment started about 5pm this time around but this hope was soon dashed when a few hours later, just after I had seen a doctor, I noticed a numbness in my right arm where my drugs are being infused. I had a bandage over the area as it keeps the tubes in place and out of the way of harm so hadn’t realised that for about 6 inches up my arm a swelling had started, it was only when this crept beyond the area of the bandage that I got a bit of a fright. I hadn’t seen anything like it and I am hardly exaggerating when I say it looked like the bottom half of my arm was Popeye’s. What had happened was the vein my infusion was in had blown and the chemo was effectively building up under my skin. My I.D. strip was on this arm and had stretched so much it was cutting off my circulation and my hand was turning blue. I jumped for the nurse call who quickly acted and removed the drip and provided heat packs to dry and dissipate the swelling. This made for a bit of an uncomfortable night but has slowly reduced and it is almost back to normal now. I lost about 2 hours before being hooked up to the drip on my other arm again so will probably be a late escape tonight.

Last Wednesday I had an enjoyable day at Hamilton races with Lanarkshire Business Group. I have been a member of the group for a few years now and have gained work through involvement as well as meeting some great people. I had taken the role of vice chairman and was just getting into the swing of it when I fell ill. This applied to my role of convener of the education committee of the GIA, another role I was beginning to really get my teeth into.  Lanarkshire Business Group is always looking for new members so please have a look at our site and contact us if you are interested in coming along. I have been unable to attend much recently but have been overwhelmed by the support and well wishes offered by everyone there.The race day was great even though I didn’t win anything at all. It was a long day and I was feeling really tired around 5 but found a second wind and stayed out for a while longer.

lanarkshire business group race day June 2011

Last Thursday I was back at Rosshall Hospital for a CT scan. The CT basically shows up the extent of tumour growth or spread. It is one of those big donut shaped machines that I am put through after drinking what is called gastrografin which helps the image show up better. I knew I would have to wait until the monday morning to hear the result and was quite anxious so my my caravan trip was a welcome distraction. The result of the scan seems to indicate that growth has halted which is great news.This would indicate that the treatment I am on is having some effect. I would have preferred to hear that there had been a reduction in size but this may have been too optimistic after only 6 weeks. Generally scans are taken at 10-12 week intervals, but I get more due to being on a trial, so it may be after 12 weeks there is more sign of a reduction hopefully. I see my surgeon again in august and I want to fully understand what the possibilities are for further surgery to remove the areas of cancer which is the only way that I can ever get to a stage where I might be able to reduce or stop the treatment I am on and maybe have a chance that growth wont recur which will eventually happen without surgery or advances in treatment. I am looking into surgical techniques developed for conditions like mine which are at very early stages of development but if I can keep on track with treatment and keep getting stronger I can work towards trying to get accepted for this.

Martin and Jason are two great friends of mine that I first met on what I remember as a sort of introduction day for students starting the part-time architecture course at Glasgow School of Art in what must have been 1992. Martin infamously asked after the introduction day if we wanted to ‘go for a coffee’ which soon turned into something a bit stronger and from there our friendship has grown over the past 20 years. Martin being the real family man of the trio bought a caravan a few years ago and we started talking about taking it somewhere for a weekend trip some time ago. We met up in Glasgow a few weeks ago to do some meticulous planning and just came up with the idea of ‘heading up the middle and turning left’ which is effectively what we ended up doing.

martin, me, jason and molly

My vision of heading for the hills and basking in June sunshine sipping wine next to a river were soon dashed, I should really know better by now. After a supply stop and an 8 peice £4 breakfast at one of our ‘friendly’ supermarkets, we headed north past perth and and took our left toward loch tay stopping only briefly in Aberfeldy and some tea and coffee at the wonderful watermill cafe and bookshop, well worth a stop if you are passing through. Once reaching Crianlarich we headed north again towards Glencoe. A quick pit stop and pint in the Kinghouse and it was decided to head along Glen Etive and find a pitch. Undeterred by the ‘unsuitable for caravans’ signs we pressed ahead to find a spot to stop for the night debating along the way the pros and cons of each potential site we spotted. eventually settling for a roadside spot close to the river and near some stunning waterfalls. We ditched the caravan and scoped the area taking pics of brave deer and lonely trees along the way despite the incessant rain.

I took shelter in the caravan to try to get a heat while watching and gloating at the other two putting up the awning before we settled down to some food and a well deserved drink or two. A small break in the weather the next morning allowed us another photo stop at the Buchaille Etive Mor, probably one of the most pictured peaks in Scotland and featured in most Scottish scene calendars every year. It was my first Munro of many and a very enjoyable climb with hugely rewarding view from its peak. A high start and not a long walk in makes it very accessible although there is some steep scrambling required to get onto the ridge wich is spectacular once you get up there.

The Buachaille Etive Mor

A visit to the Glencoe Visitors centre by gaia architects along with some tea and cake was followed by a forest walk while the weather held. I hadn’t walked very far at all due to the fatigue I suffer but with taking my time and the fresh air I was able to get along. It is frustrating being in a place were I have climbed extensively over the years but everything seeming so out of reach right now. With the forest path I always know how far i have gone and how quickly and easily I can get back. I used to go off walking on my own without worrying about how I would get back but now I always need an exit plan!

The heavens opened as we finished the walk and we took shelter in the climbers bar in the clachaig. In the past you could camp in the field next to the pub and it was always busy on a saturday night with a mixture of climbers and bikers partying most of the night after spilling out the pub. The area is fenced off now and only official campsites encouraged. I can see the environmental benefit of this but there is some magic lost.

As the rain persisted, so did our stay in the pub sampling the huge range of real ale on offer and getting a good feed before our retreat to the caravan. I had a bit of a kip when I got back before a night of poker and banter and a relatively early night. A few years ago we would have lasted till the daylight hours, especially at this time of year. As expected the sun came out the next day as we were due to leave but we had a bit of time to explore the near by waterfalls and experiment with some more long exposure shots.

etive falls

Headed back to reality via crieff for some lunch and eventually got home on Sunday at a reasonable time and a good sleep, not that molly wasn’t comfy but you can’t beat your own bed sometimes. Plans are afoot for our next adventure already.

Due to the tracking on my arms from the chemo infusion it has been agreed that I will get a pic line inserted which is a semi permenant point were I can get my treatment plugged in. The real advantage to this will be that I should be able to get a portable pump that I can take home rather than being in the Beatson every fortnight. I will still have to come in as an outpatient to get part of my treatment but the part that takes 46-50hrs, I will be able to take home. The pic line will resolve the problem with tracking as it goes into deeper stronger veins an wont show up on my skin. Until I get the pump I don’t know how mobile I can be with it but it sounds reasonable enough and will help get a bit more normality back, so everything going well, hopefully I will be writing my next post from my sofa!

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9 Responses to “up the middle and turn left”


  1. June 25, 2011 at 12:46 pm

    Hey Jon! Enjoyed reading about your trip. Glad to hear your arm is better.

    And if you didn’t already know, you can download a free app for WordPress for your iPhone; just in case you find yourself in a position where you may be able to write with one hand or just with thumbs.

    Take care, feel better, and looking forward to your next post. 🙂

  2. 3 Michele Carver
    June 26, 2011 at 3:20 am

    Great post as always. Can’t wait for the next exciting chapter. Keep up the good work. love Me xxx

  3. 6 Isabelle
    June 30, 2011 at 9:49 am

    Jon-Marc (I am allowed to call you that!) your dad told me about your health and you have been on my mind. You have been included when we pray for our friends and our community at Cardinal Newman HS. I hope you dont mind. I enjoy reading your posts and marvel at your strength. Best Wishes, Isabelle Boyd

    • 7 scarpadog
      June 30, 2011 at 10:31 am

      Thanks Isabelle, many thanks for your thoughts and prayers. Hope all is well at Cardinal Newman, I miss my visits there! jm

  4. 8 marlene perks
    August 13, 2011 at 9:48 pm

    came across your post quite by chance!!!enjoyed reading it.you will be in my prayers.I will follow your posts on here now….wishing you all the best.Marlene Perks.


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