September 2010

9 months post transplant

At last – September – I had been looking forward to this month for so long. My next goal was now in sight.

When I was in hospital recovering from the transplant and becoming tired after a few simple stretches and yoga exercises, the thought of climbing on 400ft sea cliffs seemed light years away. The docs had stopped me climbing back in early summer of 2008 so with the loss of fitness combined with the transplant and my advancing years there had been times when I thought that returning to climbing would be out of the question. But never say never. Back in December my climbing partner rang up when I was in hospital to see if I was interested in going climbing on Lundy in September 2010, I said “Yes”.

After my first attempts at climbing back in the summer I thought I’d still be going along but only really as a tourist with perhaps a crack at the odd very easy climb. I had assumed that the timing of our trip was to coincide with the climbing club meet which would provide a pool of climbers with a wide range of ability and that I could join the novice section. However this was not to be as our group’s visit was arranged for two weeks in advance of the club meet (at the request of someone who subsequently dropped out of the trip – but that’s another story...) So in the end there were four of us, two blokes who climb at high grades, the wife of one of them who doesn’t climb at all ...and me. I began to worry that either I would get into situations that were beyond me or that I might not get any climbing done at all. Based on my climbing progress so far I thought that with the best will in the world, even if the weather was favourable, I would probably only be strong enough to climb on alternate days.

As I was supposed to have my first infusion of donor lymphocytes just before the Lundy trip and it was possible that I might have a reaction from it, I was able to negotiate that it be delayed till we got back.

As it turned out, we had excellent weather for six days. I climbed for five and a half of those and really enjoyed it. The best day in achievement terms was the one when I got to the crag only to discover I’d left my climbing shoes back at the accommodation. Paul kindly lent me his extra pair of shoes which were 3 sizes too large. (To get the best out of climbing shoes they should be worn very close fitting so that your feet engage well with the rock). I then led all three pitches of a 400ft route. It was The Devil’s Slide – a Lundy classic which was on my “must do” list. At least it was only a middling grade. However the next climb was the highest grade I’d ever climbed and there was a stream of water running down it! Having abseiled down to the bottom of the cliff and with the tide coming in (very fast as it does in the Bristol Channel!) there was no alternative but to give it a go. I have to say I felt pretty pleased with myself when I completed that in my clown shoes!

There was an extra bit of adventure at the end of the trip when the weather deteriorated and neither the boat nor the helicopter could get out to the island so we had an extra night and were helicoptered off the next day – Great! I’d never been in a helicopter before AND I got to sit up with the pilot! – just as well there wasn’t a medical emergency!

As the date set for the lymphocytes was the same as the extra one we had to spend on the island, it meant that there was a delay with them too. However, the hospitals were very good, adjusted the date and it all went through without a problem. Although they had said it would be fine for me to drive myself there and back, I’d been given piriton in case of any reaction to the lymphocytes. It was only the lesser oral dose but I felt scarily sleepy on the return journey so I think next time I’ll have to either counteract it with caffeine tablets or take someone with me. Other than that there were no negative effects.

On the Sunday following we watched the Great North Run on television and as always with these kind of events I felt inspired by it. Nick and I ran the GNR 25 years ago – could we run it again next year? I discovered that the Aplastic Anaemia Trust has a few places in the event and so another goal began to form in my head – Team Lyness could take part next year! This is still just an idea though and since I haven’t run for something like twenty years I’m not really an obvious candidate – never mind the transplant! Nick has run the London Marathon 4 times (though not in the last few years) and number 2 son has just completed his first triathlon so I think the onus will be more on them.

Something I have decided to run for the Aplastic Anaemia Trust is their quiz which takes place in November. It is a national quiz with the same questions being asked in different venues around the country at the same time. So if you are reading this and live in Dorset get in touch and make up a team!

On the activity front, I have now signed up for a block of yoga sessions rather than just the odd one and have managed a couple of sea swims this month as well as a twenty three mile bike ride and a few shorter ones. I went to the climbing wall for the first time in months. It is quite different to outdoor climbing, more athletic and requiring more stamina as the pace is faster. I think it will take a few visits before I can claim “wall” fitness.

A bit of a breakthrough at my monthly hospital appointment – I was at last given permission to dye my hair! Woop! Woop! Actually my hair is not too bad . It’s short and very curly but it is also very grey. ... And I can also at last have the massage I was given as a present a year ago! So it’s all booked for the beginning of October. Whereas I had expected to be told I could return to work after a year (i.e. after Christmas) the consultant told me that my immune system is still low and that it will be at least April before I can return to work. This puts a new slant on things so I will have to begin to consider my options - work, retirement, different kind of work/ business.

August 2010

8 months post transplant

My climbing continued to progress with some multi pitch routes at the beginning of the month where I took my turn to lead. This boded well for September when I would be going off with friends from my climbing club for a week’s climbing on Lundy. This was a trip which had been booked back in December when I was in hospital having my bone marrow transplant. At the time it had seemed difficult to imagine being back rock climbing again but it had become a goal and now looked as if it might just happen. The only problem was that the other climbers who were going like to climb the harder grades and I wasn’t near that level yet.

Another goal, first visualised in the hospital back in December was to climb Suilven – a mountain in Scotland which had been on my wish list for many years. Not the highest of the Scottish peaks at 2,400ft it nonetheless is an iconic mountain, rising as it does straight out of the glacial, lochan strewn wilderness of Sutherland, a striking landmark for miles. Nick had brought a postcard of it into hospital, one that had been sent to me by my sister some time previously and from that time it had become fixed in my mind. It had become the focus for our main holiday and so it was that we set off once again up to Scotland in mid August.

We took our bikes with us and following a suggestion from number 2 son (a keen mountain biker) we set off on a bright day (but with a poor forecast) to cycle to a loch up behind Kinlochleven. He had mentioned that there was a bit of uphill to start with but after 2 miles of pushing the bikes up the very steep track the novelty was beginning to wear off. And then it started to rain..... ...I found a discarded rain jacket several sizes too big for me which I put over my shower proof jacket and that kept the worst of the rain off for a while until it set in to a steady downpour. We were sure the loch couldn’t be too far away and pressed on determined to have some reward for our efforts. We were now up high enough to see what weather was coming our way from the west – more rain and plenty of it in sagging black clouds. By this time we were drenched to the skin despite the extra jacket, the light had faded to a gloom and the temperature had dropped considerably. Up ahead we saw a building which we took to be linked to the dam which we expected at the end of the loch and so we continued on. However, on reaching the building we only discovered a level, concrete covered conduit running beside the track which was still climbing upwards. (We discovered later that had we cycled along the conduit at this point, we would have had a level ride right to the dam at the end of the loch).We set ourselves a turning point, a tree on the skyline and headed for it. Still no sight of the loch but a distant view down into a very deep valley – had we really come up that far from sea level? We decided we really needed to have a map next time and with our minds full of what we might say to our son, along with the frustration of not reaching our goal; we turned around and headed downhill. It was so steep and twisting that at times it was too dangerous to cycle – even more frustrating having to push the bikes downhill as well! However on the straighter parts we managed to reach quite a speed, hurtling over bumps, the bikes rattling, literally a bone shaking ride without the benefit of suspension. It was with great pleasure, that we eventually reached the car, dry clothes and warmth.

We had intended to take the kayaks with us but when we were offered the chance to borrow a friend’s campervan (which had a domed roof and so could not transport them), we decided instead to make use of that and leave the kayaking to another time. Our arrangements involved meeting up in Fort William and swapping our car for their VW camper. I’m not sure that Morrisons completely approved of our transferring mountains of clothes and dirty washing between the two vehicles in their car park but I think we balanced it out with stocking up on supplies in their shop. Our friend and her sons had just completed a Highland tour and were now going to take our car back to where they lived in Northumberland. We would swap back after around 10 days.

We had quite an adventure touring round the remote but beautiful north west of Scotland in the campervan, choosing lay-bys to park up in at night with beautiful views to wake up to in the morning. The weather was variable and as we drew closer to Suilven we carefully chose our day for the ascent. Reading up on the route we discovered that although the mountain itself was not terribly high in terms of Scottish peaks, there was a very long walk-in. We had parked the night before as close as we could to it and had chatted to a couple who had just returned from it. I asked how far they had walked and they produced their pedometer. It showed an eleven and a half mile round trip – and that was only to the bottom of the mountain! We had decided we would cycle as far as we could before having to walk and hoped to save ourselves a few miles walking. The day dawned - superb weather with a gin clear sky. We set off around 9.15am past a loch with Suilven perfectly reflected in the still water. After about a mile and a half it was clear that Nick’s bike was not going to make it. Steep uphill pulls on the rough track caused the chain to come off and so we had to abandon the bikes and strike out on foot. About half of the walk-in was on a this track, the other half was across rising tiers of very boggy ground where it was possible to sink down a foot or so in to sucking black peat.

Suilven has three summits and the tops are reached by first climbing to the saddle between two of the them.This climb is relatively steep but does not take very long. It was some time since I had climbed anything so steep and I did have to pause from time to time to “look at the view”. When the saddle is reached, the summit rises almost a mile to the right. The views from here are amazing, miles and miles of moorland scattered with hundreds of lochs and further views out to the west to the Outer Hebrides. We decided that since we had made it this far we should do all three summits. This was not as easy as it seemed as Suilven is around 3 miles in length and there is a considerable dip between the summits. The final summit also demands rock climbing skills and care is needed if you do not have a rope.(We did not have a rope!) Having completed all three tops we returned to the saddle and began the descent. Another half dozen people were also on the mountain that day but we were the only ones to attempt the three summits so were last to descend. It was a long trek back but eventually we reached the bikes and cycled back to the van. It was a great day out and had taken us nine hours of pretty much continuous walking – a memorable day and well worth the effort. It felt really good to have achieved a goal set back in the hospital in December at a time when it was an effort to get out of bed to go to the toilet. Those daily spells pedalling the exercise bike were the start of the long road to this moment. We were a bit creaky for the next couple of days but gradually recovered and continued on our tour but kept to short cycles and fairly gentle walks from then on. We were tempted to climb another mountain – Ben Hope. It is attractively situated, right by a road but when we passed it, it was already mid afternoon and too late to start out. – Perhaps another time.

On return from the holiday I had my usual hospital check-up. Because of the way the system works, the blood results are often not back from the lab before I see the doctor and so some months I don’t know my blood results until four weeks later .However, in August the Haemoglobin was 131!, the White blood cell count was 4.8, the Neutrophils 3.8 and the Platelets 200 . Apart from the platelets which were down slightly, all the others had improved significantly! The following day I went to my local hospital for my usual monthly dose of pentamadine which is given by nebuliser (not very pleasant- mildly caustic and makes you dribble). Although the nurses said that it is often only given for 6 months, the docs apparently want me to keep having it.

July 2010

7 months post transplant

After my college friends left my sister and I had planned to have a few days camping. We set up the tent and went to see my brother who has a caravan nearby. We had a very sociable evening with him and his wife and their neighbours. My brother’s neighbour mentioned that hurricane winds were expected but we didn’t take much notice as the evening was so calm. When we returned to the tent around midnight we tightened guy lines just in case then went off to bed. However, sometime in the small hours the hurricane did arrive, complete with horizontal rain. Now there is something cosy about rain when you are wrapped up nice and warm in a tent but this was a bit different with the tent fabric blowing right on top of me. This was not a good sign. By 7 am I couldn’t bear it anymore and got up to discover that two, if not more, poles were broken. After vainly trying to rectify the situation we packed all our kit into the car and gathered up the tent as best we could in the howling wind. By this time we were soaked through so carried on to help some other people struggling with their tents. One couple in particular attracted our sympathy as they had two toddlers and a massive tent. We managed a cup of tea in the cooking shed which also contained another twenty people all in dripping waterproofs. That phase of weather passed through quite quickly but July continued to be unsettled.

Life continued with a lot of work put into the garden and leisure time spent on short (4miles) cycle trips. I also ventured into the sea accompanied by son number 2 who was back home to finish writing up his PhD. He was training for his first triathlon so we were hardly a matched pair – me swimming breaststroke sedately and slowly and him zooming up and down doing front crawl. I expected to be tired very quickly but found that I could swim continually for some time without a problem. We also went out climbing and although I was mainly top roping i.e. following my son, I was beginning to feel a bit more confident and thinking it would not be too long before I would attempt some more leading.

By mid month my cyclosporin was stopped completely with a view to having my first lymphocyte infusion in mid September.

I had another trip up to Scotland with a friend, staying in my brother’s caravan. We did a bit of cycling and walking and even managed a little bit of hill climbing though only to around 1000ft. but an achievement nonetheless . The going was very rough with no path and tussocky heather underfoot but the wonderful views made it worthwhile. We also managed a bit of running and speedy dry- stone- dyke- climbing when chased by a herd of bullocks! That wasn’t on the agenda but did keep us on our toes!

Towards the end of the month I went out with a friend to do some trad climbing at Swanage. This was a little more cerebral than the climbing I’d done since the transplant in that it involved choosing where to place gear and which gear to use rather than clipping into the insitu bolts. I started off top roping middling grade routes but by the end of the day we had upped the grades and I managed to lead a fairly respectable route so was very pleased with myself.

June 2010

June 1st Day179 - June 30th Day 209

We went off to Scotland for a week to stay in the beach hut we go to every year. It is an old fisherman’s hut but has been extended to have three bedrooms. It is still very rustic though and only 10 metres from the sea so ideal for kayaking. We had quite a few outings getting to know our new boats and going further than we had done on previous trips.

I found that my arms were a little tired after the first paddle but I quickly settled into a steady pace and by the third trip had no problem at all. We also did some cycling, a real pleasure on the empty back roads of the south of Scotland. I even took in some off road cycling though some would say it was cheating a bit as I was taken to the top of a hill by car then cycled 12 miles back, pretty much downhill all the way, to the shore. Although the weather was kind the sea was still rather cold so I didn’t get round to swimming.

On our return from Scotland I spent a lot of time in the garden, digging a new flowerbed in the lawn in the back garden, preparing it and planting it. I must admit to Nick doing most of the heavy digging but I did do my fair share of moving tubs of flowers around, all the time being careful to wear gloves to avoid the possibility of picking up bacterial infection.

Around this time I had my first attempt at cycling “the loop”. This is an eleven mile route which, over the years, we have cycled regularly and it takes in three significant hills. It was whilst attempting this route in the spring of 2008 that it became clear to me that I was not well because I could not manage to pedal up the least of the three hills. It was therefore a bit of a benchmark. I did manage the first hill but had to dismount about three quarters of the way up the second hill and struggled on the third hill, gasping for air at the top. However I had acquitted myself better than expected and felt pleased with the result.

Another short trip to Scotland towards the end of the month was to meet up with two friends from college and my sister. We hadn’t really spent time with each other for probably thirty odd years. However, we walked and talked and laughed and cycled and the high point of the break was when two of us had a go at zorbing.A local farm had diversified into adventure activities including grass ski-ing, archery and zorbing. Before being allowed to take part in the activity we had to fill in disclaimer form, detailing our state of health and listing any medication. My form required extension paragraphs and I was rather concerned that I would not be allowed to go. However, they read it over and waved us on – we had after all absolved them of all responsibility.

“Zorbing” involved the two of us appropriately dressed in swimming costumes, climbing into a huge transparent plastic ball about 15ft in diameter which already had a pool of water sitting in it. Once in, with cameras strapped to our wrists, we were pushed downhill while the water sloshed around and we sloshed and tumbled around in it. My sister took a video of the ball rolling downhill and the screams and laughter emanating from it could be heard loud and clear. There is something faintly surreal about two women in their fifties being pushed downhill by three young lads. The ball came to rest at a grassy bank and we were helped out by these same three lads. I don’t know what it looked like but the emergence, plopping through the plastic tunnel into the outside world felt like being birthed.

Blood levels at the end of the month were more or less the same as they have been for some months with minor fluctuations. Haemoglobin was 108, White blood count was 3.0, Neutrophils 2.1 and platelets 214. As a reminder the normal levels are Haemoglobin 110 - 140 , White blood count 4.5 - 11.0, Neutrophils 1.8 - 7.7, Platelets 150 - 450.