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Stem Cell Transplant Journey

Month

March 2016

Day +38 5 Arduous Km

I suspect my last blog was a rather frustrated one, I have been feeling under the pressure with the fact that on Thursday it will be the twelve month anniversary of my diagnosis. The last year has without a doubt been the most challenging of my life and not always in the ways one imagines sickness to test a person.

I discussed how I’m feeling with my consultation during my clinical visit last week and I have to say he was tremendously understanding and supportive. I was beginning to think I was turning into a big wussy ball but he reassured me I had every right to feel as I do and expressed his belief that the team are exceedingly hopeful that this time we have the right ‘recipe’ of chemotherapy and immunosuppressant for me to ensure the transplant is a success. Whilst in clinic I mentioned in passing to my clinical nurse specialist my desire to have my PICC line removed and bless her, she offered to remove the offending item there and then! Not only did I walk out of clinic feeling a good deal happier, I was minus a tube too so now it’s just a case of waiting for the all-important Day 30+ chimerism test result, which may take another two weeks.

I don’t recall which day, but one day last week was a marvel post wise. £950 worth of cheques came through my letterbox and I can assure you for the last year it’s very much felt that the money has been rapidly moving in the opposite direction, nonstop. One cheque was a very generous donation towards my fundraising efforts for Anthony Nolan. The second cheque was a grant from Macmillan Cancer Support to assist with the cost of my trips to Barts. I have to attend Barts a minimum of twice a week and each visit costs me approximately £30, as I’m not working this cheque was a boon. I’ve promised myself that once I’m back on my feet financially I will make a single donation to cover this generous grant so that Macmillan can help another patient, who like me is wondering how to make ends meet without getting into debt.  (I’m incredibly fortunate that my family have been extremely supportive through this process when and where possible)

Aster has been convalescing with me as she was neutered two weeks ago. However her recovery has been significantly speedier than mine. After a week she was eager to run, play and generally cause as much mayhem as possible. Thankfully, last Friday the vet gave her the all clear to cause trouble which also meant no more excuses not to train for the Yorkshire Three Peaks Challenge, for myself. Yesterday, we went for a 16km / 10 mile walk locally which was my first attempt at a ‘significant’ distance post-transplant. Where i live is a relatively flat area of the country so it’s not the best location for three peaks training however right now I desperately need to work on stamina and strength and confidence. Around the 11km point, I was secretly wishing taxis would randomly drive around the countryside, I pushed on to the end and I’m pleased to say I finished in one piece.

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Beautiful spring day perfect for my first training session with my faithful companion

It feels wonderful to finally be preparing for the Three Peaks Challenge, post my 16km fairly flat walk yesterday a little daunting as well as exciting. The good news is that the team fundraising total is now £4346.24 for Anthony Nolan and £652 for Crohn’s & Colitis UK.

Even though I managed to walk 16km yesterday, I am still suffering from fatigue, silly things such as running up the stairs after the cat when he’s escaped or running down them to answer the phone, knock the stuffing out of me. That said I’m having less impromptu naps which is a good thing, as I often feel far worse after these. Otherwise I have a slightly dry throat and runny nose , both of which I need to keep an eye on as these things as my immune system is still exceptionally vulnerable even if I do have a normal neutrophil count.

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

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Day +30 Reasons to be a Hermit

I’ve been home nearly two weeks now and I have to confess to playing the role of a hermit rather convincingly. I have literally only left the house to go to Barts for check ups. I’m a hermit for a number of reasons. Initially when I was discharged, I left incredibility physically weak so it seemed sensible to take things easy at home and gradually build up my strength and confidence in my muscles with quotidian actions. Rebuilding my strength isn’t helped by fatigue which is a daily challenge. For example, I will rise around seven thirty after eight or even nine hours sleep and shower maybe tackle the ironing and then by ten thirty I’m exhausted and genuinely ready for a nap. I’ve never really been a napper, in fact, I find naps draining therefore I’m still trying to come to terms with managing my chores, my ability and the fatigue. Aster, my puppy, has been an excuse to stay curled up indoors as she was neutered upon her return home. Today is the first day she has shown any sign of desire to be active in any way, until Friday she’s pretty much housebound to ensure her wound remains clean and that she doesn’t open it up. I also developed a rash overnight on my fact last weekend, it was examined on Monday by the doctors and although they don’t rule out GvHD (Graft v Host Disease) as it’s naturally started to clear up no biopsy was taken, it could after all be a drug reaction.

I think the main reason for keeping myself to myself is that I’m simply exhausted and drained emotionally by all that has happened over the last twelve months. At clinic the other day I meet a fellow patient and her words were ‘when will this end?’ her comment echoed my very thoughts. Here is a highlight of the last twelve months.

  • Being informed and accepting you have an aggressive cancer and within days entering hospital for weeks at a time
  • 40 days of high dose chemotherapy
  • Hickman line for 8 months
  • PICC line for 2 months
  • 6 bone marrow aspirations
  • Tablets….the number I have swallowed doesn’t bare thinking about
  • Blood and platelet transfusions, lost count
  • 2 Stem Cell Transplants
  • Lose of hair twice

I dream of the day I wake up and I don’t have a worry, as I can hardly recall what that feels like. An entire year of my life has been consumed with constant worry, be it my neutrophil count, how what is happening to me is hurting those around me, how to pay the mortgage when I’ve not worked for twelve months and of course now, the big question. Has this transplant worked?

For AML patients chimerism tests are taken at day +30, +60 & +90. Due to my history when I was in Barts during the week on Day +26 they carried out a chimerism test, rather then leaving it for a week. Last time Superman had only managed to take over 50% by Day 30+ which wasn’t enough to supress / hold back production of my potentially iffy bone marrow. The test sadly is not carried out in the fictional world of CSI and therefore it will take a few weeks for the result to come through. I suspect the next few weeks will be taxing emotionally as I wait to hear if all I’ve been through has been worth it or if once again, the transplant has failed. The good news is that compared to my last transplant my ciclosporine levels have been much more consistent as have my blood levels. My haemoglobin was 11.2, Platelets 270 and Neutrophils 3 at the beginning of the week all of which are perfectly normal. There is every reason to keep hoping that in a few weeks my consultant will say he’s at 70% which is roughly where they’d expect at the Day 30+ test. I don’t know how but when I first meet my consultant and she broke the news to me of my having AML, I managed not to melt down but I think if she tells me that the graft is taking over I may finally melt down on her! Until then I’m curling up with my little family.

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

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