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Stem Cell Transplant Journey

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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Day +59 Frustating and rewarding times in equal measure

The last couple of weeks have been incredibly frustrating, as I managed to pick up a cold and just as that was clearing up my stomach started to play up. Initially with the stomach, the consulting team and I weren’t sure if i was suffering from a bug or GvHD however after just over a week it cleared up, therefore we think it was a bug. I have to confess to being relieved it was a bug as they booked a laparotomy just in case and I wasn’t looking forward to yet another procedure. Now that I am over the worst of the cold and stomach bug, I can feel my strength coming back to me and the fatigue isn’t as overwhelming as it was a few weeks ago.

I don’t really have much to report regards what I’ve been up to, as I’ve most sat on the sofa and watching and endless amount of trash due to being unwell. I even had to cancel my plans to spend Easter with my family as I simply wasn’t well enough to travel and I doubt I would have been much company. Aster and Khan kept me company, Aster wasn’t too impressed with the reduction in walks and mad this known by being extremely mischievous.

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A whole box of tissues were shredded, no mystery who the culprit was!!

 

 

Every week I attend the hospital for bloods and then revisit for an appointment with the consultant to review my results and discuss any issues etc. For the first time in a while I bumped into a few patients and as we all had a lengthy wait for our consultations we had a good natter. I walked into the hospital that morning feeling rather blue but strolled out with a smile, there is no better therapy than to get have a good moan with fellow patients. No offense to friends and family, the simple fact is people can only sympathise with the issues a patient faces, where as other patients can truly empathise with all the problems. Also sitting in the waiting room is a dose of reality and shakes a person out of their moments of self pity because there is always someone worse off.

I am still on large doses of ciclosporine to suppress my immune system and help to reduce the likelihood of GvHD. The current plan is that around Day 100 depending on how I am, then, I will start to wean off the drug. By coming off the drug there is a high risk of GvHD, however in theory having passed the 100 Day mark the GvHD should be less acute. It’s around this period that I can commence having childhood and other essential vaccines. Although there is a long way to go, it does feel as if there is finally a light at the end of the tunnel now.

My chimerism test at Day 30 couldn’t have come back with a better result, 95% donor. My blood group hasn’t altered as yet but that is because haemoglobin lasts up to three months, therefore Rachel haemoglobin is still pumping around my body but it won’t be long before I change blood group. It’s crazy to think that my blood DNA is male and my blood group will be different, I would never have believed a couple of years ago that I’d have developed AML and undergone all that I have as a consequence. I saw a photo today that was taken two years ago when I visited Madrid with a friend, when I looked at the photo of me sitting outside a café (with a full head of hair) and it felt as if the photo was from another life. The last twelve months have literally shifted my life and set me on a new course physically and mentally.

£3880 is how much i have raised for Anthony Nolan on my JustGiving page, this is three times what I expected to raise. I’m so pleased and in total the walking group have so far raised £4926.24. I know a few people still have plans to raise more money, consequently it’s looking as if we could raise £6000 which would be awesome. To know that we are helping Anthony Nolan continue their wonderful work, all be in it a drop in the ocean of that money they require, is enormously rewarding. On a less thrilling note we don’t have much time to train and having been ill, I am way behind where I’d like to be. We have 54 days for we embark on our challenge. I am keeping my fingers crossed that I can get out and about for another training walk this weekend.

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

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

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

Day +13 Why I love eating NHS bedsheets

The griddle is smoking hot and a well-seasoned, lightly oiled steak is cooking away before my very eyes and when the steak is removed from the griddle with perfect seared markings. I’m just a big glass of red wine and a raspberry and chocolate dessert away from paradise. I pierce the steak with my fork and the knife glides through the meat as if it were butter, I lift the fork to my salivating mouth and then I’m awake and find it’s an NHS bedsheet between my lips. I’ve had a number of odd dreams this week, the most nefarious are the ones where delicious food is abundant but I have a nasty case of mucositis which makes swallowing a modern day form of torture.

Friday (Day +7) night I went to bed; I suspect I’d probably slept a few hours before the pain in my throat woke me and kept me awake for the rest of the night. In a few hours the mucositis had advanced so much so that it was excruciating to swallow my own natural saliva, any food / drink and without doubt ruled out my ability to wash down thirty tablets every day, some of which are enormous. Of course the blasted feeding tube was recommended at this point and I remained as stubborn as ever that I would get through the experience without yet another unwanted tube in my body. All my medications were are this point changed from oral to IV, along with an additional prescription for a bag or two of fluid to keep me hydrated. Unfortunately, administering the drugs by IV made me very nauseous nevertheless there was no other option than to soldier on intravenously. I won’t go into a blow by blow account of the last week because frankly, apart from when I was asleep there were no pleasant moments. For the record, if anyone has to go through what I’m going through and they are less phobic about tubes etc. then I think the feeding tube would have been the sensible way forward, however for me the stress of the phobia was more distressing mentally than the physical pain I was suffering.

Most days I can take a deep breath and hold back any stray tears but there are some people in life, for whatever reason, no matter how hard you try if you feel in the slightest bit teary you will overflow in that persons presence. With this in mind (as well as the fact it really hurt my throat to cry) and taking into account my druggie in detox look (puffy face, needle marks arms) I decided to cancel visitors during the worst parts of the last week. It’s been a very boring week, as it’s hard to focus when you feel utterly rubbish on even watching TV failed to grab my attention. I did look forward to the emails from my sister-in-law updating me on how Aster is, often with a photo or video attached. Thankfully Day +12 I started to feel sturdier and I seem to be gaining strength with each day.

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Therefore it’s just as well I’m not related to Samson because my hair has started to come out as expected. At the moment the ‘fall out’ is minimal and thanks to shaving the vast majority off, prior to admission, I am confident that I’m not going to find myself with a huge handful of hair when I wash each day. The first time I lost my hair was a very disturbing and although this time it is easier because it’s only one week of chemo and I’ve been here before, it’ll still be July before my hair can even be considered a severe pixie cut.

Naturally my fundraising balance hasn’t budged at all whilst I’ve been in hospital. The good news is that the Walkers with Style Group, of which only four have signed up so far, have to date raised £3747 (£402 of which is being raised for Crohns & Colitis UK) Three more members need to set up their JustGiving pages and crack on and raise a minimum of £300 per person. Therefore I think it’s safe to say that between us we will raise approximately £5000 for Anthony Nolan and £500 for Crohns and Colitis UK. Just like last week, when I’ve had moments to work on my fundraising plans I have and I’m extremely excited to announce that Hatfield Forest, my local National Trust venue has provisionally agreed to my organising a Charity Dog Show in May. Woof Woof!!!!

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

Day +6 107 opportunities

It’s been an incredibly tough week. I started to feel the effects of the high dose chemotherapy combined with the intravenous ciclosporine on Day 0. It was hard to muster up excitement for the arrival and infusion of the stem cells, as I fought nausea, hot flushes and stomach ache. Thankfully by the late afternoon I started to feel well enough to shower, put on my face and have enough energy to face visitors. The stem cell infusion went well and I was lucky enough to be treated to a big juicy burger, afterwards.

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Day 0 to day +4 I really struggled to cope with the volume of toxins which had and were being pumped into my body. Nausea, stomach aches and generally feeling unwell were my constant companions. Thankfully, the doctors transferred me from IV ciclosporine to oral tablets and since then I’ve increasing felt better. However, I’ve just been informed I will be returning to IV of ciclosporine because my levels on the oral tablets are up and down. To be honest, the very idea of the IV of ciclosporine fills me with dread. The antiemetic tablets aren’t cutting it with regards preventing sickness when I’m receiving the evil drug, I discussed with the doctor having an IV antiemetic prior to ciclosporine. It’s worth a try.

I’m renaming ciclosporine to siclosporine!

I also have a mild case of mucositus which is a common side effect of the chemotherapy. As my levels, including those all important neutrophils, are dropping there is a real risk this may worsen. Right now, it’s similar to having a sore dry throat and I’m religiously using the mouthwashes in an attempt to prevent it taking over my mouth.

Food and drink continues to be a daily struggle. I do yearn for food, the hospital food is rarely what I desire invariably I want moist, soft foods such as jacket potato with cheese and coleslaw, hearty soups with bread which has been throughly dunked and of course ice cream is always a winner. I have absolutely no desire to drink (and yes that includes champagne!) Every drink tastes insipid, I literally have to force myself to takes sips of fluid all day as a result I’m not taking on board enough fluids which isn’t ideal. Consequently, I’ve been prescribed sodium chloride which is administered by drip over several hours.

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I can confidently state that so far this transplant has been a good deal more gruelling than my last and looks set to continue that way. At times it’s hard to stay mentally strong when you physically feel so weak and zapped of all your strength, coupled with the reality of having had a previous transplant fail there have been a few moments when I’ve wondered if going ahead with a second transplant was such a wise idea. If only crystal balls worked, ‘would the AML return without a SCT?’

Todays good news stories. I had my final dose of methotrexate, a chemo drug, which means all the chemo drugs are behind me. My neutrophils are now 0.1 which suggests that the chemo has worked its ‘magic’ on my bone marrow, hopefully giving Dylan a decent shot at cracking on with the job before my bone marrow tries to make a comeback. The consultant is happy with my progress and we discussed the 3 Yorkshire Peaks today, she believes I should be up to the challenge which is 107 days away!!!

I have roughly a week to ten days of trying to avoid infection, coping with the ongoing drug regime (30+ pills on top of the IV!) and all its side effects whilst Dylan settles in and starts to make lovely new neutrophils etc. for me.

As the window of feeling okay is most likely a very small one, due to the IV of siclosporine commencing tomorrow, I’ve spent the morning progressing fundraising plans for Anthony Nolan. After all I only have 107 days left to fundraise! A quiz night early April is looking like a goer and I’m touching base with another organisation with an idea I have which I’m extremely excited about. I don’t want to spill the beans on the idea until it’s looking viable.

I’ve a late night ahead of me as the sodium chloride drip has another five and a half hours to go. So, I’m going to watch a movie or two a very kind friend brought in today.

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

Day 0 Take 2

Today is the big day! Yesterday, was the toughest day so far physically and mentally. If memory serves me well, I’ve the best part of a week feeling rough ahead of me (assuming I stay well) before I start to feel ‘normal’. As the Dr said, they have pumped some extremely nasty drugs into me this week and as a lessons learnt from my previous SCT the Ciclosporine (immunosuppressant) levels have been dramatically increased as well as administered straight into my vein.

All in all considering what I have been given this week I don’t feel, too unwell. I was rather emotional yesterday, I suspect thirty six hours of drips combined with feeling under the weather and missing my fur kids an awful lot, left me quite teary. At times I’m fed up with the needles, prodding, poking, the continual ‘what nexts?’. I was diagnosed eleven months ago and if I’m lucky by July 16, I should be starting to regain my life. Eighteen months is a long time to experience the levels of stress which accompany critical illnesses. My mortgage has had to be paid even though I’ve hardly worked, I’ve had to face some very horrid procedures over and over, as well as coming to terms with the silent failure of my own body and reality that the AML could return. One big cause of stress is seeing how what is happening to me impacts upon those around me. Unfortunately, it’s not possible to keep acute leukaemia hidden from people, I have often wished it was, to spare them the pain.

Yesterday, I felt this weight combined with my own fear of ‘what if I go through all this again and it doesn’t work?’ I believe it will work, certainly every effort is being made to suppress me and provide Dylan with every opportunity to take over.

After receiving Dylan’s stem cells, later on, I am looking forward to sending my friend off to buy me a big fat juicy burger and a portion of chips with skin on. I’d request ice cream for dessert but I suspect my cravings are greater than the size of my belly. I know the NHS have a tight budget for food and although it’s on the whole been edible it’s not been very satisfying. Every day I dream of food I crave, most of which is beyond the reach of my hospital bed. On Wednesday, the dietician visited to give me the warning ‘if you don’t eat we’ll have to insert a feeding tube’ conversation. It’s just their scare tactic to ensure you to eat when you least feel like eating. (I’ve heard other patients getting that pep talk, so I didn’t take it personally) Although I’m not particularly hungry, I eat what is served up and throughout the day I yearn for tastes and textures of foods. I told her there would be no need for a feeding tube.

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Culinary hospital delights 😋 They look are appetising in black & white

The physio also dropped by to give me a pep talk. I appreciate many people embarking on a SCT are in considerably worse health than I am therefore it’s a very relevant conversation under the circumstances. Even so I was taken aback when she asked me if I was able to walk. I didn’t mention that in less than four months I intend to trek the Three Yorkshire Peaks, I suspect she’d try to rein me in telling me to take it easy!!

The stem cells are being couriered as I type, I heard yesterday evening that the harvesting went well and a good number of cells were collected. It’s good to have the majority of the nasty drug regime behind me and to know that within hours my bag of hope will be infused.

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

Day -3 How to look good bald

Day Zero is drawing closer!  I’m nervous and I’m hopeful. SCT is a risky procedure and the likelihood of GvHD (Graft v Host Disease – rejection) is high, at the same time if it’s successful the benefits can hardly be justified with words. I didn’t share the letter I sent to the previous donor, Superman, because I felt it was a personal message between two people. I’ve reviewed and amended the letter ready to be sent to Dylan via Anthony Nolan. I’ve decided to share part of the letter, this time because if it inspires one person to register with Anthony Nolan or Delete Blood Cancer, to start giving blood or platelets to donate money to Anthony Nolan then sharing it will have been worth it.

Every day we say thank you, when a person holds open a door, makes us a cup of coffee etc. so to say Thank You to you for donating your stem cells seems to fall rather short when demonstrating just how grateful I really am for your stem cells. I wish I had the words to express the full depth of my appreciation for your selfless act of kindness. The ‘gift’ of your stem cells is the gift of life, there really is no greater gift a person could receive and I will be thankful to you every minute of every day for the rest my life.

I do not have children and I’m informed a cat and a dog do not count. I do however have five nephews and a niece, all of whom I adore. They are all old enough to appreciate the gravitas of my situation, I’m close to them and fully aware of just how much my illness frightens and pains them. Your donation gives them hope that I’ll be there to get them out of the many scraps they are bound to get themselves into and gives me hope I will be there to see them achieve their dreams and more over the coming years.

I doubt I’ll have children but with my growing menagerie of animals, nephews and niece I’m not sure I’ll have the time! Maybe I’ll marry or I might just travel the world….. All the options I have are due to your actions.

The likelihood of going on to live a normal life after having acute leukaemia is not something I was entirely convinced I would have, when I was diagnosed. With your stem cells and the help from my medical team I will get that chance. This isn’t just an opportunity to live a normal life; it will give me the ability to help others. Thanks to your kindness and generosity, I can go on to assist others who will be diagnosed with blood cancers through volunteer work and fundraising.

I was admitted on Saturday and no time was wasted, before I even had a bed I want given my first conditioning chemo. Sat, Sun and Monday I received Fludarabine, as a result I had a very mild headache otherwise I felt fine. Yesterday they started administering the Ciclosporine loading dose intravenously. I’m not receiving the normal chemo regime for an allogeneic transplant and the immunosuppressant routine is different, as well. Today, is a busy/long day. First of all I will receive Ciclosporine which we are aiming to do over four hours, then that will be followed by Fludarabine and Melphalan chemo along with pre and post hydration. Tomorrow is a ‘rest day’, I will receive Ciclosporine, no chemo will be delivered so that my blood isn’t too toxic when the Stem Cells enter.

I’ve kept myself busy with my mindful colouring book, reading, watching Breaking Bad and yesterday one of my visitors bought me a very exciting gift, Lego!!! I may leave that for my ‘rest day’.

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The chemo drug Melphalan will cause hair loss. I found losing my hair, last year, incredibly hard emotionally. Just as my hair was beginning to reach a length which could be styled, I found myself facing the loss of my hair again. This time I decided to have my hair shaved off, my local salon very kindly shaved my head and although it’s not a look I would ever choose, being the one taking control of the hair loss has helped mentally. I can look in the mirror without seeing a cancer patient, I feel confident enough not to wear the turbans socially which is significantly different to last April. I put most of this down to not having handfuls of hair come out in the shower, waking up to a pillow covered in hair and ultimately being forced to shave off the few remaining strands.

Here is my guide to looking good bald:
1. Confidence – just think you’re a Badass
2. Highlight your assets – slap on a fabulous lipstick, whip out the eyeliner.
3. Excuse to be more feminine – ignore those jeans and flats, pick feminine clothes. (Bit hard in hospital!)
4. Earrings – a trusty pair of danglers helps

I’m just looking forward to the rainbow of colours I’m planning to try as my hair grows and I inevitably go back to black.

 

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

3 ½ hours with changed my life

The second Stem Cell Transplant is only days away, therefore I’ve been extremely busy preparing. On Tuesday I received good news, my bone marrow aspiration was clear of leukaemia which I necessary for the transplant to go ahead. It also gives me peace of mind, as I do fear it’ll return even when I feel well, plus if you have to suffer an aspiration you want it to be for good news! On Wednesday I took Aster up to York where she will delve into her Yorkshire roots with my family whilst I’m in hospital. Leaving her was heartbreaking, she has been my constant companion for the last few months and at times the motivation to get out of bed, needless to say I feel a little lost without her.  Khan also missed her and he senses something is ‘up’ as he’s been extremely clingy so I am on a big guilt trip at the moment. Wednesday also brought the news that Dylan is fighting fit so the transplant is going ahead as proposed. Friday, I had a PICC line inserted so the nurses can take blood, administer drugs etc. As with all procedures I was a nervous wreck and I can’t say I’m too comfortable with tubes coming out of me, thankfully it’s for a short period this time.

My collection of programmes to watch has been topped up with Breaking Bad, Spirals, Dallas and Penny Dreadful. Naturally, my kindle is fully loaded with possible novels to pass the time away. I decided it would be a good idea to ensure my iPhone was busting with tunes especially as it might encourage engraftment if Tom Jones was crooning away to welcome Dylan’s stem cells into my blood stream, on Day 0. (It’s between It’s Not Unusual or Help Yourself, I’m not sure I am ready for listening to Green, Green Grass of Home on repeat, just yet)I’m practically packed; I just need to put the entertainment and beauty / body stuff in the bag.

Naturally, I’m both keen and nervous to embark on another SCT. A SCT is my best chance of a leukaemia free life that said the procedure isn’t without its risks which I am very aware of, thanks to have already heard and seen it all before.  The PICC line insertion was a big concern for me, with that behind me I feel a little less apprehensive about what I will endure over the next three / four weeks.  I just keep thinking about life post the transplant, July / August time when I should be in a position to approach life with a less bubble warp mentality and boy do I intend to enjoy what life has to offer!

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PICC Line and a bingo wing! (that’s thanks to nearly 12 months of no gym)

Monday morning I had a 9 a.m. meeting in the Westminster area.

  • 7.15 a.m. – drop Aster off at the dog minders
  • 7.41 a.m. – on train to London (managed to get a seat but did get an elbow or two en route)
  • 8.05 a.m. – change train and take the tube
  • 8.25 a.m. – change tube lines (stood most of the way)
  • 8.43 a.m. – get off at Westminster
  • 8.46 a.m. – admire the House of Commons
  • 8.47 a.m. – epiphany moment (O2 rush from the march to the office)
  • 8.55 a.m. – arrive at meeting venue

Seconds after my routine moment of admiring the magnificent House of Commons, I thought to myself ‘this is not how life is supposed to be lived’. What I am referring to is the fact that travelling to and from work on Monday consumed the best part of 3 ½ hours of my day. Had Brad Pitt been escorting me, had I travelled in a limo whilst receiving a foot massage then maybe I’d think it was acceptable to spend that amount of time traveling daily to work. Prior to being ill, I routinely made that journey or similar and I rarely questioned how ludicrous it was. I can only assume I had become accustomed to the entire trip, from the commuters who’d step on their Grandmother in order to get a seat, to the fact you see the same people daily and yet never say even smile at to each other. I don’t have any answers, as yet, as to how I reduce my commute when I eventually return to work full time but I am steadfast in my conviction that I will not fall into the trap of travelling such long hours to and from work. Time is precious; after all once you’ve lost it you can never get it back.

Speaking of time it’s time to finish packing and cuddle Khan before my busy week of chemo.

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Schedule for the week ahead.

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

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