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Stem Cell Transplant Journey

Month

October 2015

Day +52 A breath of fresh air

Considering the week started with a bone marrow aspiration it’s been a very good week. As per usual the staffs at Barts were marvellous this week, by now they are all very much aware of my failure to cope with the bone marrow procedure in a normal calm manner. On arrival at the day unit ensured there was very little waiting around, slipped in the cannula without a song and dance, took routine bloods and packed me off to the torture chamber where the doctor was waiting with the good stuff, midazolam. 3ml of midazolam and I don’t recall a single thing about the procedure. I believe that is considered the VIP treatment!! As I will most likely have to undergo at least one more aspiration, I feel a little less apprehensive now I know the drug to demand!

Cannula, in left hand as I no longer have a Hickman Line
Cannula, in left hand as I no longer have a Hickman Line

Wednesday I was back in my, home from home, to meet with the consultant. He confirmed that as expected there were no signs of leukaemia in the aspiration sample and my bloods counts were all perfectly normal. Every time I have an aspiration there is an infinitesimal amount of fear that the leukaemia has returned, no matter how well I feel. I felt fine when the b*gger was developing in my bones back in January, therefore no matter how healthy I feel within myself I find it hard to trust my state of wellbeing.

The sample wasn’t taken with a view that the AML may have returned, naturally under the circumstances that is one of first things they check. It was taken to provide the consulting team with essential information to help them assess how the transplant is working / progressing. The bone marrow test along with the chimera tests will give an accurate indication of how successful the transplant has been up to this point. The test results take weeks to come through, I’ll probably be onto the next round of ‘significant’ tests before the results are in.

I was incredibly disappointed to hear of the death of the journalist, Sue Lloyd-Roberts, earlier in the week. She was a remarkable journalist who put her life in danger to provide a voice for those who would not have been heard otherwise. She tackled leukaemia in much the same manner, using her status and the problems she personally faced to raise awareness of AML and the need for stem cell donors. She was due to have a SCT in May 2015, regrettably the donor failed the medical. I can’t help but ask myself…. Had the donor have been fit enough would she have survived? Did the delay to her treatment contribute to this sad news? The news motivates even me more to work with Anthony Nolan to raise awareness and hopefully register more potential donors. From a personal perspective as a fellow AML and transplant patient, her death was a poignant reminder of the dangers involved with a SCT and how terribly blessed I have been throughout my treatment.

I also was given the all clear to not return to Barts for an entire week, which is a wonderful sign of my wellbeing as well as fabulous to have an week off. Whoop whoop!!! A few people have asked if I’m bored spending so much time at home when I’m used to working full time during the week and then being a very busy bee at weekends. I’m not bored at all and one of the reasons is that my family has expanded. My cat has a canine step sister who is keeping me extremely occupied and driving him insane. Her presence is a real blessing, it would be very easy to roll over and sleep for another two or three hours most mornings but instead I wake up to multiple missions such as clean up the ‘presents’ she has left me, fed her, persist with the toilet training etc. It’s also marvellous because she brings happiness into the home with her silly antics and excitable nature. After the gravitas of the last eight months her presence has brought a much needed breath of fresh air into the house as well as provided me with a pleasant purpose to the days when I’m not visiting the hospital.

Cute bundle of trouble :-)
Cute bundle of trouble 🙂
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Day + 45 Autumn spectacles

I was informed that my last blog made a friend teary so much so she sat watching Holby with Rocky Horror eye makeup; therefore I feel duty bound to make this a more cheery blog.

In my Day +29 blog I mentioned that I felt new doors were opening and I’m pleased to confirm that, earlier in the week, one started to ekk open. A member of the Anthony Nolan volunteer team responsible for organising donor recruitment events and who is in charge of delivering Anthony Nolan’s education programme in the area I live in and has confirmed I’m now a registered volunteer. Whoop whoop!!! He is organising events for the forthcoming year and will be in touch with me soon to confirm how I can be of assistance. I’m thrilled to have the opportunity to help them with their wonderful work.

I also received acknowledgement from a different department in Anthony Nolan of my registration for the Three Peaks Yorkshire Challenge in May 16. I’ve a form or two to fill in for them and once that is complete I will receive my Anthony Nolan t-shirt, fundraising pack and lots of helpful tips for fundraising as well as the all-important confirmation that I am officially raising funds for them. I have already made a start by setting up my JustGiving page and yesterday I was chatting to the local butcher and he has kindly donated a turkey crown to be raffled off for Christmas. It’s wonderful to feel I’m on the road to giving a little something back.

I’ve not spent the whole week emailing with Anthony Nolan, as per usual I’ve been gracing Barts with my presence. Over the last two / three weeks my cyclosporine levels have been rather erratic baffling the doctors. On Wednesday I meet up with one of the consultants who believes I’m having a few drug interaction issues which is preventing some of the drugs from being fully absorbed due to my liver being over stimulated as a side effect of some of the other drugs. The consulting team have taken the issue away to discuss and come up with alternate drug options. One of my fears has come true….I require another bone marrow aspiration. I had hoped to escape, what I believe would be an exceptional torture procedure, at the same time I expected sooner or later I’d be informed the team believe one would be helpful to them. My neutrophils have been low which could be down to the natural development of the transplant or it could also be a result of the drug interaction issues, whatever is happening in my bone marrow carrying out an aspiration will provide the doctors with an extraordinary amount of information which is why I have the misfortune of having to undergo yet another. I made them swear to sedate me one hundred and ten percent this time!

Life away from Barts and Anthony Nolan, is slowly progressing. The downside of life moving ahead is that I’ve have a few difficult decisions to make. The hardest decision focused on when to return to work and how to pay the bills until I’m back earning money. As my appointments at Barts are currently rather difficult to predict I don’t believe it would be fair to an employer to return to work until I am confident of a regular pattern. I am also very concerned about my lack of immunity such as measles, tetanus etc. working in a crowded office I could be subjected to germs which will ordinarily I’d have immunity however I no longer can be sure of that immunity. My final worry is the travelling to Barts, which in itself is a part time ‘job’, as well as the commitment of part time job would be equal to being full time and that may well be too much for me at this stage. Therefore I made the heart breaking decision to sell my car. Yes, it’s just a large lump of metal, it was a lump of metal I lusted after for two years, saved up. You could call it my dream car which I have had to sacrifice due to cancer still causing havoc in my life. The money will enable me to pay all the monthly bills and remain out of work for a few months, allowing me to focus on health.

Life isn’t all doom and gloom away from the hospital. This morning, I went on one of my little road trip adventures. I woke up ridiculously early and drove to Ashridge Estate near Berkhampsted for a wildlife walk which permitted me the opportunity to journey into the secretive world of fallow deer. As it’s the rutting season, I was blessed to watch them locking horns and calling for the females. It was a beautiful autumn spectacle which I will never forget.

The perfect morning to enjoy the beauty of nature.
The perfect morning to enjoy the beauty of nature.

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

Day +41 I’ve learnt more from pain, than I’ve ever learnt from pleasure

More bloods today to check my up and down cyclosporine levels and to see if my neutrophils are still low. About an hour ago I received a call to confirm my cyclosporine levels are still baffling everyone with their best impression of a seesaw, the good news is that my neutrophils have risen over the weekend.

I was recently asked if cancer had changed me and if so, how. Yes cancer has changed me, how isn’t such a clear cut answer. Fundamentally I’m the same person I love flowers, animals, the cold side of a pillow and I still harbour far too many pets hates such as overtaking on the inside to get all of one car length ahead, cashiers who chat away to each other whilst serving a customer, forgetting the magic words please and thank you.

I was brought up in the Thatcher era, my parents business succeeded during the Thatcher years and one way or another it was inculcated into me to always strive for bigger and better. Viewpoints along the lines of, once on the property ladder look to climb it. I find myself single in a three bedroom house (all be it small one) and that means hefty outgoings each month with two bedrooms I rarely set foot in. Since my illness this scenario has appeared ludicrous to me. I don’t need three bedrooms and if I had a smaller property, my bills would be less consequently pressures of finance would be reduced and I would have more opportunities to travel or change career etc. From here on, I propose to ask myself what do I need rather than striving to build ‘an empire’. What I’ve personally learnt is that bigger means more commitments therefore more complications and I desire a simpler life. When the opportunity arises I propose to downsize and simplify all aspects of my life.

On the subject of simple things, being ‘trapped’ in hospital has reinforced my appreciation of the simple things in life which are sublime and yet many of us don’t see, hear, feel them etc. The sound of birdsong, the luxury of a hot shower, simple fun of kicking up autumn leaves, the smell of fresh cut grass.

The kindness of a random stranger putting themselves out for me has reminded me of the importance of being selfless as and when you can. I’ve never been passionate about a cause before, of course I’ve had charities I’ve supported and believed in. Believing and supporting are entirely different from being passionate. Anthony Nolans hard work has potentially saved my life. I now consider it my duty to give back and help others. Prior to cancer I believed in that concept however I didn’t walk the walk, I always put it off because I was too busy etc. In a moment of reflection, I’d say my beliefs weren’t that fervent before as a result of being on the receiving end of such kindness and hard work I now have the drive to do something.

I touched on the next ‘change’ in a previous blog. I’m tired of hearing people complain, listening to their negative attitudes about very anodyne matters. I consider myself lucky to have access to the treatment I’ve received and to be fortunate that Anthony Nolan had a perfect match on their register. What I have been through has been physically and emotionally painful but then I read about refugees who have nothing and I realise as pooh as my life may feel at times someone somewhere is praying to have the life I take for granted.

If there was a magic wand to turn back time and prevent my leukaemia, naturally I would grab that opportunity but…cancer has opened my eyes to my good fortune, kicked my lazy butt to be a more giving person and put many aspects of life into a healthier perspective. I wouldn’t give back all I’ve learnt because I truly believe it’s made me a better version of myself. I’ve learnt more from pain, than I’ve ever learnt from pleasure.

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

Day + 38 Straight roads do not make skilful drivers

Monday 28th Sept was just another day in Barts having routine tests, cyclosporine levels checked, full blood count, kidney functions, CMV etc. In preparation for the routine visit I spent a few hours the day before baking cupcakes to take into the day unit as a small token of my appreciation, additionally I wrote a card saying how thankful I am to them for making what has been the worst experience of my life, tolerable.

Thank you, everyone likes to know their hard work is appreciated.
Thank you, everyone likes to know their hard work is appreciated.

Clinic confirmed a phone call I received on Tuesday stating that my cyclosporine levels had dropped as a result not only did I have to up my dosage, yet again for the second week in a row, but it meant a third visit this week to Barts for further tests. Unfortunately the tests, taken today, have confirmed that my neutrophil count has plummeted from earlier in the week when it was low but within the normal range to 0.3 which is considered neutropenic.

I don’t feel unwell; I do suspect that I’m slightly ‘under the weather’. The reason I think this is that there may be a very slight tickle in my throat. I drink so much fluid to keep my kidneys working efficiently to counteract all the medication even so I sense a slight irritation but it’s not in any way uncomfortable. The initial suggestion was that I inject myself with G-CSF (growth hormone to boast my neutrophils) however I’m not in possession of any because that causes me to suffer severe bone pain consequently I was taken off it after the first cycle of chemo. Frankly I don’t think I’ve reached the point of injecting myself in the bravery stakes either, never mind injecting myself knowing I’ll be in agony as a direct result.

Oh…the ups and downs of being post-transplant!! Next week, I will be hurtling to London on the train numerous times, yet again. I’m not actually worried, by now I know the hospital are being extremely precautious, as they are good at their job. I’m also abundantly aware how the counts in the body can go up and down; I had to have a blasted bone marrow aspiration once due to a dramatic drop in neutrophils and by the following week the tinkers had rocketed back up. I’ve come to the conclusion, worry when you have something factual to worry about. It’s hard to explain that as robust as I may look and feel, in truth, I’m as fragile as cut glass. Since my diagnosis I have become a hypochondriac, noticing every minor alteration in how I feel, marks on my skin etc. from one hour to the next. Additionally, I possess two thermometers one of which resides by my bed and the other can permanently be found in my handbag. I didn’t even own one prior to becoming unwell in February / March!

Between my numerous visits to Barts I was finally able to indulge in a decadent soak with Neal’s Yard bath oil and a refreshing gin and tonic, as my Hickman Line wound has healed. Very little can attune a person to the simple pleasures of the quotidian, until of course, those pleasures are removed for long enough to gain a true appreciation for them. It’s bliss to shower and bath without fear of causing an infection. Due to the inability to socialise, in the normal sense, I’ve had numerous conversations with my cat, all of which have been very fascinating!!! I’ve also made plans for a human friend to come up from London tomorrow evening and hopefully watch the English rugby team beat the Wallabies. For the occasion I’ve prepared damson and clotted cream ice cream, I had a sneaky sample before it went into the freezer and I have a good feeling that it is going to be divine.

Maybe we should just stick to one bottle tomorrow with my neutrophils being AWOL!
Maybe we should just stick to one bottle tomorrow with my neutrophils being AWOL!

I always knew this  would be a bumpy road, sometimes I have to remind myself that this bumpy road will ultimately lead to a better place and an improved version of me, as well. To quote Paulo Coelho ‘straight roads do not make skilful drivers’.

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