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Stem Cell Transplant Journey

Month

May 2016

Day +116 Tearful & proud moments

After months of fundraising and weeks of training on Saturday myself and six friends finally took on the Yorkshire Three Peaks Challenge. We all had to get up extremely early to ensure we were in Horton for a prompt 7 a.m. start. With smiles on our faces we immediately started the first ascent, Pen-y-Ghent (693 metres) which was tough but as we were all fresh and eager there weren’t too many hold ups, moans etc. After Pen-y-Ghent we had a very long trek to Ribbersdale for a pit stop, a brief moment to admire a stunning viaduct before starting the long and frankly hellish ascent of Whernside (736 metres) I will own up to having a few negative thoughts at times whilst walking up Whernside, along of the lines of ‘How do I get out of this bl**dy challenge?’ ‘Why did I pick this challenge?’ After a mouthful of Colin the Caterpillars negative thoughts were banished and I just trudged on and on and on until we finally reached the summit. Coming down the peak was a challenge for many but strangely enough I discovered my inner mountain goat and actually rather enjoyed the descent. The walk between Whernside and Ingleborough (723 metres) is quite short and before we had time to fully recover from Whernside we were on yet another slow steady climb. Just when I’d had enough of slow steady climbing we arrived at a dramatic vertical ascent which in my opinion looks more daunting then it is. Another 900 metres of putting one foot in front of the other we finally reached the third and final summit. The third summit is just the beginning of the end, after that we had another mountain goat descent followed by a five mile walk back to Horton. Everyone was amazing, hardly another moans and groans, in fact I recall a laugh or laugh (possibly hysteria) and a genuine team spirit.

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Not very glamorous but hugely rewarding experience

For me the challenge was a huge milestone in the journey I was forced onto with a diagnosis of AML. Treatment for acute leukaemia, two stem cell transplants have beaten and battered me mentally and physically over the last fifteen months. In fact I was only 112+ days post my second transplant when I under took the challenge. I have previously trekked large sections of the Great Wall of China and Kilimanjaro, I can honestly say the Yorkshire Three Peaks was a much more difficult challenge excluding my AML so when I take into account all I have endured I’m amazed at myself and achieving what I did at the weekend feels very much like two fingers up to cancer. I’m also incredibly pleased to have personally raised over £4500 for Anthony Nolan and I eagerly await the final group total. It’s not often I can say I’m pleased with myself, on Saturday I was proud that I powered through to complete the challenge and that there is a chance due to our blisters, aches and pain someone may have a chance at life.

It was an emotional event for one and all, for me, there were two moments when I seriously had to fight the tears the first was as I scaled the rocks approaching Pen-y-Ghent. A breeze was blowing, the view was spectacular and it hit me that I’d tolerated some horrific experiences in order to have the chance to live and at the moment I felt very much alive. The second was when our guide, Tom, told me he had guided many people over the years and that I was up there as one of the people he was most inspired by.

Challenge over, I am now looking to my next milestone in the journey towards a full and healthy life. Tomorrow I will reduce my cyclosporine to 125mg twice daily, no reactions to the weaning permitting, I should be off the cyclosporine around the 6th July. That will be a fabulous day in many ways as I do suffer a few side effects from the drug. I probably sound like a broken record, as wonderful as that milestone will be there are potential issues with coming off cyclosporine. I am at a significantly increased risk of GvHD (complication from stem cell transplant, the transplanted donor cells (Dylan) may attack the recipients (me) body) My consultant informs me that the first six weeks off the drug are the most critical and that after that the risk of GvHD drops dramatically. Therefore I’m keeping everything crossed that I can get through to mid-August with minimal complications, especially as it’s my birthday in July and I’m planning a few celebratory shindigs.

Although it’s not a milestone, I would be extremely grateful for my hair to get a wriggle on with regards growing. I do at least now have a covering of hair, that said I still very much feel that I look like a cancer patient, either that or someone who got carried away with the scissors. I’ve recently returned to work in a part time capacity, I am still wearing the turbans as I’m not entirely comfortable with walking round the busy office with my current ‘style’. Wearing a turban all day long can become quite hot so it will be a good day when I can be turban free.

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Day + 99 Decapitation in the Chilterns

This week has certainly been a week of numbers for me. Tuesday I had my +90 Day chimerism blood test which based on the +30 and the +60 test results, I expect to them to confirm I’m still around 95% donor. This is exactly where I should be at this point, in truth every being declared 100% is very doubtful. As I’m passed the 90 Day mark the consultant has decided to start to decrease my cicliosporine. I was taking 225mg twice daily, this has been reduced to 200mg daily and the current plan is to reduce my dosage by 25mg per week unless of course there are signs of GvHD. With each week, I feel life is becoming more and more my own rather than belonging  / being dictated to by my blood cancer. Coming off the cyclosporine is a titanic step forward, it carries a number of risks as the likelihood of GvHD rises, even so I’m staying positive that the team at Barts and I are making headway and moving in the right direction.

Whilst at clinic this week I was given my immunisation record sheet which I have to organise with my GP, now that I’m post 90 days. I start next week with the first of a number of vaccines to provide me with immunity to illness’s. These are vaccines which are normally administered to children, as my new immune system is in its infancy due to the loss of all my (old Rachel) immune system and the donor vaccines not coming over with the his stem cells I have to start again. Just as with the reduction of my ciclosporine this very much feels like a step in the right direction.

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The stabbing is never ending.

The fundraising efforts continue and my personal total is slowly creeping up, I’m utterly amazed and over the moon that I have raised £4490 for Anthony Nolan. It’s wonderful to know firstly that I’m giving something back and secondly that I could have helped provide hope to another person suffering from blood cancer. Along with the steady climb of my fundraising total I have also been training for the Yorkshire 3 Peaks challenge which is only 13 days away!!! Yesterday a friend, who was crazy enough to agree to partake in the challenge, and I walked 16 miles through the Chilterns.

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We even managed to smile through most of the walk!!

We did have a couple of minor detours due to misleading information even so we completed the walk in 7 hours and 30 minutes which according to the target time for that particular walk was a respectable time. Compared to walking with a random group in the Lakes, I found walking with a friend, putting the world to rights etc. was much more enjoyable. I also take lots of snacks with me to keep my energy levels up. I munched  a snack an hour and cleverly saved the jelly babies and colin the caterpillars until the last hour or two which very like a much deserved treat. As a result my energy levels were absolutely fine, my biggest bug bear was that my heels were fed up with carrying me for over seven hours and my abductors were feeling the effect or the constant walking. Today, I have 2 blisters and stiff abductors but otherwise I’m pleased to report I feel pretty good this has enormously boasted my confidence for the big challenge.

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Now….who was I thinking of when I decapitated this jelly baby?!?!

Day + 92 Swearing in German Three Peaks Training

Life has thankfully been pretty quiet and in a good way. During my last clinic visit I was bombarded with text messages mostly in German informing me that I’m dumb and to get stuffed. Naturally it was only right to reply which as juvenile as the activity was, was a great deal of fun. It was genuinely the first time I have laughed in a carefree manner in a long time without the nagging weight of results, tests, procedures etc. My friend and I devised a cunning plan to boast the light at the end of the transplant tunnel by booking a hotel in Berlin for a trip to the German markets in December. I’m not able to book a flight until around August / September when I’m hopefully off the cyclosporine however hotel reservations are easy to amend and having the trip to look forward to have been a real spirit booster.

I caught up with a couple of the lovely ladies walking with me in Broadway, the Cotswolds and we all had a charming Sunday amble up to the Broadway Tower as part of our training. When I say charming, what I really mean is that we gossiped and discussed the serious issues such as nails etc. so we weren’t aware of just how tough the uphill walk was!

My bloods have been regular over the last few weeks so much so I was able to take a ‘break’  from being stabbed and go up to the Lake District to train for the Yorkshire Three Peaks Challenge which is only three weeks away!!!

Sadly partly due to weather I was unable to cram in as much training as I would have liked. I can confirm that the weather is extremely changeable in the Lakes and because of the weather one of the guided walks was cancelled. For the main hill climbing guided walk the weather held so I was able to do some ‘real’ training. Buttermere is a stunning area and this is where Aster and I  climbed / walked up Rannerdale Knotts.

Proof Aster & I scaled Rannerdale Knott
Proof Aster & I scaled Rannerdale Knott

At times the walk was tough going partly due to the fact that I had to keep Aster on the lead (serious over population of sheep in the area) in part as a result of carrying a fully kitted out ruck sack and finally in part owing to the weather. With the Yorkshire Three Peaks looming I’ve started to walk with a rucksack full of the bits and bobs I will need for the challenge. i.e. gloves, hat, flask of soup, water, water proofs etc. I have never enjoyed walking with a ruck sack, as I find it very annoying most of the time but due to the fact it will have precious food and water in it, it’s an essential I have to learn to accept, hence why I’m training with it. The weather in the Lakes can be terribly windy, at times when we were sheltered and ascending I found I was hot enough to consider stripping a layer off but then moments later I’d be blasted with a biting wind. Are you getting the impression, I felt there were better things to do with my afternoon such as sip hot chocolate, eat scones, discuss the likelihood of Donald Trump becoming President of the United States?! Well, yes frankly there were times I did ask myself why I signed up to the challenge.

At the very top of the hill the wind was ferocious and I was thankful Aster was on a lead, otherwise I fear she might have blown away, once or twice I thought I might! The views were spectacular and the feeling of being virtually blown away was quite exhilarating, very nearly worth the hard work and it went some way to answering the question. ‘Why had I signed up to the challenge?’

Back in March 15 when I was diagnosed with AML, I wasn’t convinced I’d be alive for my birthday in July never mind over twelve months later nearly being blown away on a hill having climbed it without any great difficulty. Thanks to the work of Anthony Nolan I have every reason to look forward to a long leukaemia free life and I’m now able to climb up a hill whilst secretly moaning to myself and dreaming about hot chocolate. At times achieving a normal moment such as dreaming of hot chocolate, not thinking what are my neutrophils today etc. seemed a world away and day by day I am having more flashes of normality so I think a day or two of discomfort on my behalf to raise money for Anthony Nolan is a very small price to pay for what the charity has given to me.

By the way I did get a delicious hot chocolate with a flake and a scone after!

The other and possibly more important aspect of the challenge, the fundraising is going very well, so far as a group we have raised approximately £7000. Not all the walkers are signed up to collecting online, therefore my sums are ballpark that is approximately the cost of one transplant. Therefore we have potentially saved a life, amazing what 8 people can do without too much effort!!

Sponsor me now! Yorkshire 3 Peaks Challenge. All details can be found at:  http://www.justgiving.com/Rachel-Jackson13

 

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