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Stem Cell Transplant Journey

Month

January 2016

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.

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Day + 146 Why I visited Southend on Sea

Chemo brain is a term I heard very early on in my treatment used regularly by other patients. During all the chemo consent forms I never heard mention of it affecting your brain, as a result I was initially baffled by the term. I quickly picked up that the term was used to explain forgetfulness. As I am a cynic and no doctor had stated a side effect would be ‘chemo brain’ I suspected people blamed normal absentmindedness due to their many woes or age on chemo brain. I’m either rapidly aging or my mind is heavily laden with problems because I suffer chemo brain. We all walk into rooms and ask ourselves, what on earth we walked into that room to fetch, we go to the supermarket to buy milk and come away with everything but, that’s perfectly normal. These incidences aren’t one off or even daily for me, they happen on an hourly basis some days. I’ve locked myself out the house, I’ve left my wallet on the front seat of the car, my water bill is bound to have increased due to the taps which are left running and I’m almost hourly standing in a room trying to recall what I was in there for!! I’m at the point where I’m very tempted to write a list and stick it on the back of the front door to remind myself to lock the back door, pick up my purse, my keys, check I’ve not left the oven on etc.

Thankfully, chemo brain didn’t affect my plans on Saturday I not only managed to leave the house according to plan, I had all I needed with me and when I returned home the back door wasn’t wide open or the tap running. Six, seven weeks ago my friend and I penciled in the date for a catch up and as the day drew nearer the weather report looked more and more promising. You may recall that I took a few days trips here and there whilst I was waiting to undergo my previous transplant, thanks to the shocking weather and the festive period I’ve not been able to get out and about lately. I scratched my head where to go to make good use of the weather, as well as see my friend and at the same time a location Aster could enjoy. As my friend lives fairly close to Southend on Sea and Aster loved the beach at New Year, I thought it was a great place for us to visit especially as I’ve never been.

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Chilly but gorgeous day with the beautiful Aster

I have to confess I had visions of ford escorts tearing up and down the main road by the beach and that really is the sum of what I expected from Southend on Sea. I was therefore very surprised as we drove in to observe a number of ‘high rise’ buildings clearly built in the 60s, judging by the quantity of concrete. I also hadn’t expected to see a fun fair by the beach but what surprised me most was that the walk along the beach actually had some very pretty views and some of the seafront homes were really very attractive Victorian buildings, as well as one very contemporary build in progress. It just goes to show how much reputation can influence your viewpoint and that to get a true flavour of a place; you really have to go yourself. I will certainly be taking Aster again before the beach is closed to dogs in May.

The adventures in Southend over, my mind has started to focus on my forthcoming return to hospital. I have literally just ordered a Picc Line waterguard so that I can shower without fear of getting the blasted line wet. (£23 for 25 disposable covers, one of the many hidden costs of illness) I also purchased a suitcase today to make lugging a months’ worth of essentials into and out of the hospital less cumbersome. As the cases were on offer, two for one, I purchased a matching cabin bag so I’m all set for a holiday when I get the green light. Mooching about the shops looking for a bag, I spied a t-shirt which made me smile and as I was all of £5 I bought it to wear on transplant day.

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Sheep in honor of the Welsh connection 

Speaking of Welsh connections, I had a number of good suggestions for a new ‘name’ for my donor. Welsh Warrior was winning until I accidentally put two and two together. I was reading a poem I love which I feel is entirely appropriate to what I am and have been going through, “Do Not Go Gentle Into That Good Night”. If you don’t know it, the essence of this poem is struggling to survive, pushing hard to live as long as you can in the face of death. Looking at what I have just written, is sounds morbid but I find the poem inspiring as to me it sums up the desire not to give up. Anyway, it was written by Dylan Thomas, Dylan is a good welsh name and it think Dylan the Donor is rather catchy!

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Bone marrow aspiration later this week, I’m off to psych myself up.

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Day +141, 3 Compelling Reasons not to Rise and Shine

Many mornings the alarm goes off and I think to myself ‘do I have to get up?’ The problem I face daily is that the alarm also wakes Aster and within seconds she’s ready to throw herself off the bed for adventures. As she’s still a puppy prone to the odd accident, I have no choice other than to hurry out of the bed and whisk her into the garden before her first ‘adventure’ is a present! This morning, my reasons for not wanting to rise and shine weren’t motivated by laziness. Today I had a clinic appointment but not just any clinic appointment, Stem Cell Transplant Consent Appointment.

I’m exceptionally happy to be moving forward with the transplant nevertheless the meeting to confirm and discuss the details of the transplant is pretty grim. As this was my second transplant I was going into the meeting knowing that what I was about to hear would not be music to my ears. Each form needs to be talked through and I have to demonstrate that I understand what is discussed, as well as at the end of the conversation sign on the dotted line. I learnt more about the new chemo regime I will undergo for this transplant and it’s side effects which is different to the previous regime. Once again my survival / relapse percent was discussed, I didn’t pay too much attention to this part because in the end of the day, I don’t want to sit and wait for the leukaemia to return therefore I see the transplant as something I have to do and no percentage will make the slightest bit of difference to my going ahead or attitude towards the procedure. My mantra to myself, before, during and after the meeting is that I am unbelievably blessed to receive such treatment and to have a donor. The meeting was the first of the day’s unpleasant chores and it wasn’t as depressing as I feared.

I also learnt that my new donor is possibly Welsh as the cells are coming from Wales, he’s A- and that is he 39 years old. Just as with the previous donor to keep calling him donor seems rather impersonal but at the moment I’m stuck for a Welsh Superhero name. Any suggestions?

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To face this morning I took Coco Chanel’s advise ‘Dress like you are going to meet your worst enemy today’

After what is nearly twelve months of being stabbed more times than Kim Kardashian has taken a selfie, I’m still not at ease with it. I look away, close my eyes or chat to another patient. I do try to think of everything but my blood being taken however as soon as I feel the pricking sensation, a strange sensation running through me. I’m not afraid of needles, an injection is not an issue, I can look at blood in the vial but blood being drained from my body makes me feel very queasy. Thankfully, as I was on a tight appointment schedule, my specialist nurse, kindly drained me so the second despicable deed of the day could be described as tolerable, too.

 

Prior to the consultation, I had to undergo a Lung Function test as part of the pre-transplant baseline testing procedures. A lung function test looks at how well your lungs work, you breathe in fully and to blow out as hard and fast as you can into a mouthpiece. You also breathe in a gas and then once your lungs are full the technician will ask you to hold your breath for a short period and then you have to breathe out. Post the consultation, I had to undergo an ECHO which is similar to the ultrasound carried out on pregnant women. It looks at the structure of your heart, the values and provides them with information on the function and pumping action of your heart.

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Images of my heart from today’s ECHO

 

The third and final reason not to Rise and Shine is still awaiting me and that is a huge pile of ironing. I hate ironing, I would rather scrub the toilet consequently I have a tendency to the put the job off until it absolutely has to be done, sadly I have to do it today as tomorrow is looking very busy.

There were definitely a number of incentives to stay in bed this morning. I spent a little time with Emily Dickenson on the train in this morning and as a result felt inspired enough to chant my mantra and keep my eyes peeled for a silver lining!

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Day +134 Hail Marys & Iggle Piggle

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Religion and politics are two subjects I invariably keep my opinion to myself or only share with those of a similar view; I’ve learnt over many a family meal just how provocative these topics can be! I was brought up as a Catholic, almost weekly I was escorted to church from birth until I was eighteen years old, even now I can rattle off a Hail Mary word for word without hesitation. Around the age of eleven I was Confirmed, which was perhaps the first time in my life I considered what my own religious beliefs were. I recall asking the obvious question, ‘if God created man, who / what created God?’ amongst many other questions during the Confirmation lessons. I was deeply dissatisfied with the answers and for the first time in my life I questioned the presence of God or a higher being. However, being Confirmed was not really a ‘choice’ I had any say in, therefore I was dressed up in a heavily embellished white dress which would probably have caught light had it come within five metres of a naked flame and Confirmed.

Over the years I have swung between believing in some greater existence and disbelieving entirely. I’ve not said one pray since I was diagnosed and I confess to being a little surprised at my lack of desire for religion at this time. Throughout my life, I’ve routinely found that those who believe have belief because they have faced trying times in their lives therefore I never doubted that it would be possible for me to find faith in such a circumstance. When the Chaplain visited me early on in my treatment, I sent the poor man way with an infestation of fleas in his ear!! I also recall a nurse, Lucy, who was very clear about her faith and how my being a ‘catholic’ would help me, I felt incredibly uncomfortable during that discussion.

I think it’s safe to say, that most of my life agnostic would be the correct term to describe my beliefs. Consequently I am a little baffled at recent thoughts I’ve been having. I have confidence in my medical team and I do believe there is a very good chance the next transplant will work, however I suspect the first one failing does leave a small niggle of doubt in my mind. I have been asking myself, ‘if everything happens for a reason, what is the reason for having to endure this twice?’ ‘If I do a deal with the ‘Big Man’ will this one work?!’

For all my theologising I suspect I’m still as agnostic as I was back in my confirmation lessons and I’m pretty sure God isn’t up for one off deals!!! Just this week an ex-colleague offered to pray for me and I informed him I’m not a believer but I would appreciate his prayers. I have a new found respect for those who do have faith and are able to find comfort in it during difficult times, I’d even go so far as to say I envy their conviction. I won’t be saying any Hail Marys as I am certain that would be terribly mendacious of and thus pointless.

Between theology debates, I’ve finally read a book I liked! 2015 I set myself a challenge to read a variety of books, forcing me to broaden my reading horizons. Sadly, I only enjoyed a few of the books I read, I’m also a member of a book club and the last two books have been hard work for me. I was beginning to speculate if I’m unable to become engrossed in a book because there is too much going on my in subconscious mind. I have been a passionate reader since I was a teenager, hence I was very relieved to finally pick up a book and read it cover to cover without feeling it was a chore. I’ve drawn up and downloaded a number of books for my forthcoming hospital visit, now I at least have hope that I will have more to do than gaze at the walls day and night or watch endless TV dramas. The book was Apple Tree Yard, if anyone wants an easy read to relieve the boredom of their daily commute.

I have been given a tentative date to go into Barts for my next transplant at the end of January. Anthony Nolan are yet to agree this date, if it alters it’s most likely to be by a week and it would be put back rather than forward. Due to the fact I will be having more intensive chemo I will be on a ward rather than in the hostel, I’m a little disappointed as I appreciated the freedom the hostel offered. I’m going to try to be uber brave and have a picc line rather than a Hickman which will enable the medical team to administer chemo, take blood etc. and for the actual transplant they will insert a cannula as the stem cells are too large for the picc line. Its a less invasive approach and as I should only be requiring a line for four or five weeks I would personally prefer that but it does mean i won’t be sedated, I’ll  be wide awake for the picc line install.

I’ve been busy making an Iggle Piggle themed cake this week. I advise you not to look up Iggle Piggle and definitely don’t watch any clips of him; it is sure drive a person insane and fear for the generation exposed to it!! Anyway, the cake was for my friend whose daughter turned one this week, instead of asking her to cover the cost I requested she make a donation to Anthony Nolan. She very kindly donated a generous sum which was the start of a few generous donations as a result the target of £2000 exceeded! I’ve revised the target to £3500 and welcome all fundraising ideas to help me surpass that target asap. Ideas please!! 🙂

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My Iggle Piggle cake topper ready for his big day

 

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Day +130 Happy New Year

I look back to New Year’s Eve 14/15 and if memory serves me well, I proposed to save up for a new bathroom. In fact I suspect 2015 plans were all focused on being sensible and saving for a longer term plan. The bathroom is still in desperate need of a facelift and as for the longer term plan…..what plan?! Life has altered dramatically and that has transformed me and my approach to the ups and downs of life. Currently I am only able to tentatively dream of reaching the next ‘big’ milestone and that will be my birthday in July. July seems a long way off right now as there are many ups and downs to navigate between now and then but I’m holding onto the idea of a fun celebration, hopefully one outside the UK.

I have always had a passion for mountain – scapes and look forward to going skiing in 2017 breathing in the mountain air, admiring the stunning views not to mention the adrenalin rush of bombing down the piste and of course the cheeky hot chocolate or two throughout the day. I would always choose visiting a mountain area over the seaside, lately I’ve discovered a hunger for the sea / beach, and therefore blessed with good weather I visited Holkham in Norfolk with my puppy on New Year’s Eve. We had a fabulous day and it very much gave me the fix I needed to face the forthcoming months.

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Cutest dog on the beach without a doubt

 

I’m now off the cyclosporine and have been for a just over a fortnight, I don’t miss the joint aches, the burning sensations in my hand and I’ll be very happy to see the additional body hair disappear. I was informed during my last clinic visit prior to Christmas that a new donor has been agreed upon by the team of consultants and on New Year’s Eve I received a call to confirm all the paperwork is complete. Now a date needs to be agreed with the donor and I have a number of tests to undergo to ensure I’m fit for the transplant.

I don’t know anything about this donor other than the fact it is another male. I just hope this one is man enough for me!!! Lessons learnt from my previous transplant mean that I will undergo a heavier chemo regime to ensure my bone marrow is suppressed sufficiently to ensure the donors stem cells have time settle in and populate my bone marrow amply before my bone marrow makes a comeback. Last time my bone marrow returned with gusto quickly, consequently Superman didn’t have the opportunity to become ‘strong enough’ to stand up to me. As to whether or not I return to using ciclosporine as the immunosuppressant drug or an alternative drug is used, is yet to be decided.

I imagine it’s odd to want to undergo such a risky procedure and yet I wish in many ways I was having the transplant tomorrow. I’m tired of living in limbo, I live in the house I did before I was ill, I am working for the same company in fact so many aspects of my life are exactly same as before. However, I am a changed person in many ways therefore the life I am living feels rather ill fitting. I am not able to undo what has happened and it’s not possible to create a brand new start nevertheless once the transplant is confirmed a success I will be able to start making amendments to the direction of my life, I’m simply itching to start making leukaemia a part of my past whilst using the scars from it to help others. As frustrating as the waiting is the idea of new adventures is exciting.

If one of your New Year resolutions is help others, give more to charity etc. then why not start with making a donation to Anthony Nolan, I’m £214 off the £2000 target. Thank you to all who have donated, every penny is appreciated and gives people like myself hope in the darkest of times.

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RIP Christmas tree. 2016 a new tree and good health to celebrate

 

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

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