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Stem Cell Transplant Journey

Month

July 2015

Letter to Superman

Medically speaking it’s a very peaceful week, one appointment to be drained of blood for routine tests & a dressing change for my Hickman line. I had to go to the dentist for a clean bill of oral health prior to the transplant as chemotherapy damages the mouth, therefore as a direct result of chemo there is a likelihood of cavities and all potential areas of infection need to be nipped in the bud, due to the fact my immune system will be suppressed for some time after the SCT to reduce GvHD. (Graft v Host Disease, rejection in lay-man’s terms) I am still waiting for the phone call to confirm that my donor is happy with the proposed date.

My neutrophil (white blood cell which fight infections) rich break between the third cycle of chemo and the SCT has been a double edged sword. It has been lovely to wake up and hear the birds sing, cuddle my cat, get out and about without worrying too much about my levels of immunity. Conversely, the next twelve months may well be difficult and require significant life changes, the sooner I have the SCT the sooner the hardest part of the journey will be behind me. The prospect of earning some wages is also an incentive to progress with the SCT!

I’m getting fatter by the day! Since I was discharged I’ve been going out catching up with friends and family, the result of which is an expanding waistline so in many ways I’ll be relieved to return to Barts! To make matters worse within a five day period my family had 3 birthdays to celebrate (including my own) so it really has been a period of over indulgence and due to the shockingly poor weather I’ve not been able to stretch my legs.

Beautiful Birthday Flowers
Beautiful Birthday Flowers

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I’ve been drafting and re-drafting my letter to my donor, which will be passed onto him via my medical team and Anthony Nolan. I believe I’ve finally managed to convey my feelings, I can confirm that it’s a lot easier to write an articulate letter of complaint than to express in words your gratitude for such a simple action, yet one which is, profound in its impact. I don’t like referring to my donor as ‘my donor’, it seems rather impersonal considering I will receive his stem cells within 24 hours of them leaving his body and the aim is that for the rest of my life my blood DNA will be a replica of his. I suppose I ought to call him Superman, after all that is what he is, to me, even if it turns out he doesn’t wear a cape or his underwear over his trousers.

I hadn’t originally planned to celebrate my birthday, as my mind has had a couple of things weighing it down recently but then I kicked myself up my burgeoning posterior and decided at the very least I should acknowledge the occasion. I had a particularly scrumptious meal at one of the local pubs with a remarkable friend, who has been supportive from the moment I felt unwell. She, even, sat in on my initial bone marrow biopsy and when I say sat in, what I really mean is that she witnessed all of it but the bit I love her most for, was her buying me a large glass of vino after or maybe it was the fact she started to donate blood as a result of my diagnosis? She’s just one a handful of people I wouldn’t be without.

Scrub Nurse!! With her drink of passion :-)
  Scrub Nurse!! With her drink of passion 🙂
Yum, yum
Yum, yum
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A sober step in the right direction

Yesterday was a LONG day, at Barts, not entirely what I had expected. Rather than seeing my usual consultant I saw the top dog and he went through all the transplant paperwork with me. Being honest, considering what is about to happen to me, there aren’t that many forms to sign. They like to talk you through them in great detail and that means a very sombre conversation about mortality and relapse percentages, along with side effects etc. No matter how much you know, how confident you are in your team hearing a 20% – 30% relapse / mortality rate sobers you up and puts the situation into perspective. For months now I have been hemmed in people who have blood cancer, have had transplants and many who are suffering the GvHD (Graft v Host Disease) and I guess being surrounded by it can numb a person to the gravitas of the situation. All of that said, spin those stats around and it’s a 70% – 80% chance of a cure.

Being less morose, I was informed of the results of my recent torture procedure, known as a bone marrow aspiration and I was exceedingly pleased to hear that there was no sign of leukaemia. Crystal clear were his precise words. I also learnt that my donor has been notified by Anthony Nolan of the proposed date and I’m all primed to go in early August to start the conditioning chemo. All being well I should have the date confirmed next week. It’s a great feeling to have everything progressing. I’m incredibly nervous obviously, as having a transplant is another journey in itself but it’s a step back to living life.

I’m allowed to anonymously contact my donor and I think it only right to say, as big as, thank you as I possibly can, I shall take some time this week to draft up a letter. I’ve written and re-written the letter, many times in my head, each time I hit the same obstacle; just how do you express the depth of your gratitude with words when your gratitude is without limits?

I can’t believe the Great British Bake Off returns to our screens just as I return to Barts which has no Wifi. Very miffed!!! I shall have to escape and find a café where I can watch it on iPlayer. I rarely watch TV but that is one programme I watch religiously, missing Mary, Paul, Sue and Mel isn’t an option. My baking skills have gathered quite a bit of dust whilst I’ve been resident in Barts, I did try to dust them off a bit and by baking some cupcakes to take into clinic.

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Have a wonderful weekend. I’ve three birthdays to celebrate between now and Monday, so by Tuesday I shall be 3kg heavier and thinking about everything other than cake.

Thank goodness for 18 year old men

I’m off to haematology clinic tomorrow, when I will be informed of the date the medical team have proposed to the donor. Any day now that date should be confirmed or an alternate, agreed. The high resolution test on our blood tissues types confirmed the crude test results which suggested my donor and I, are a 10/10 match. Once the date is agreed the donor needs to have a health test, so it’s still a worrying time until I hear they’ve passed and the transplant is all arranged.

I discovered that my donor is an 18 year old male. Does that mean I’ll be 18 in a month or so?! My nephews are only a year or two younger, than him. To me they seem callow pups and to think this young man is prepared to put himself out for a complete stranger, at such a tender age. I’m dumb struck!! I have to say, I think he’s a hero and many people could learn from his selflessness. Thankfully, the procedure to donate isn’t too horrific, I’ve peace of mind he won’t be going through anything to unpleasant. Prior to donating stem cells, the donor is given a drug to cause the bone marrow to make more stem cells and release them into the blood stream. The stem cells are harvested from the blood over a 3-4 hour period, where a catheter is place in a vein in the donor’s arm, the blood travels through the catheter to a machine which separates and collects the stem cells, once the stem cells are removed from the blood, the blood is returned to the donor via another catheter into their other arm. Please note this is my personal description, I’m sure a doctor would explain in a more accurate and eloquent way!

I intend to volunteer for Anthony Nolan, when I’m back to full health as a companion for donors. Help calm their nerves, see to their needs as they are hooked up and hopefully be a living breathing reminder of the power of their ‘gift’.

Once I have had the transplant, I will have to remain close to London so I can access Barts should I need medical help, as there are many long term complications which can result from a SCT. Therefore I decided to use the current waiting period to visit my brother and his family. I had a divine weekend with them, a perfect combination of active and restive. We climbed Roseberry Topping, a rather steep hill in Yorkshire, my fitness levels were truly tested for the first time since I was diagnosed. I stopped a couple of times to admire the view (I may have caught my breath too!) but as others were also doing that I didn’t feel too out of shape. The views from Roseberry were stunning, when I reached the top, I confess I was a little proud that I’d managed to climb it after all the toxins and bed rest over the last 4/5 months. I may have been wearing a dodgy turban but I think that was the only sign that I am a cancer patient and if my hair keeps growing, I’ll just look really butch soon enough!

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My cat wasn’t too impressed with my weekend away. I do feel for him, I leave the house and don’t come back for a month so now I think he’s more confused than a chameleon in a tube of smarties. Still, he’s had a good day, tuna and ham treats aplenty.

Bedtime…..after all I have clinic tomorrow.

Bone marrow aspiration…..hopefully a thing of the past!!!

Woohoo….in theory (and I’m desperately hoping reality) I’ve had my last bone marrow aspiration! Once I’ve had the stem cell transplant the doctors will carry out chimerism tests on my blood, these tests confirm the percentage of cells in my blood which originate from the donated stem cells or from any of my remaining bone marrow. The ideal is to have a 100% chimera, as that would indicate my ‘faulty’ bone marrow is no longer present reducing the threat of a relapse.

I will confess that I’ve always been incredibly squeamish, the thought of giving blood would make me weak at the knees. The one time I walked into the blood donor van, with the very best of intentions, I chickened out as soon as I saw people donating. I’m completed ashamed of myself for not facing my fear, without blood and platelet transfusions I would not have survived the harsh intensive chemotherapy and now I am relying on a total stranger to go donate their stem cells. I can’t turn back the clock and donate, however what I am able to do is spread the word of the importance of giving blood, platelets, stem cells, registering to be an organ donor. I’m a perfect example of the person who thinks that this couldn’t happen to them and then it does. Initially I was reluctant to receive blood because the idea of someone elses blood in my body gave me the creeps but once I had it and subsequently felt one hundred times better I put my fears behind me.

I’m still making the most of my time away from Bart’s Hospital. Having recovered from a very busy weekend socialising (do you like my polite way of saying I drank a little too much!?) I dared to exercise, I’ve not exercised since the end of January when I first started to feel unwell so it was rather a shock to the system. I’m gutted at how much my fitness has been battered by the treatment programme, that said I didn’t collapse in a heap on the floor, so I’ve faith I will get my fitness back. In actual fact I’ve spied a challenge to motive me to get fit and raise money for Anthony Nolan, more about that another day.

Talking to challenges and Anthony Nolan. I’m incredibly touched to that friends have chosen Anthony Nolan as their charity to raise funds for when they Climb Toubkal. Please take a look at their page and if you can give a little, as its marvellous charity which I can personally assure you works very hard to help cure blood cancers. https://www.justgiving.com/Caroline-Powell5#

My hair is starting to grow back, it’s not growing in full force as yet so I’m still sporting the ‘turbans’. I will have more chemo, prior to my SCT, although I gather it’s milder so with a bit of luck, I might keep what has grown. It would be nice to have some hair when I return to work, it makes such a different to how I feel about my personal appearance. What I have is rather like baby hair, it feels incredibly soft, except I don’t think many babies have the odd white hair or that could be the light in my bathroom!

It goes without saying that I’ve been having lots of cuddles with my cat and spoiling him rotten. As Sigmund Freud said ‘time spent with cats is never wasted’. Have a fabulous weekend.

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Exciting news of a donor!

I received wonderful news towards the end of last week, it was confirmed to me that a 10/10  stem cell donor match has been found for me by Anthony Nolan. After lots of a pre-transplant tests such as lung function, a visit to the dentist etc. the update really brought it home that I will be having a stem cell transplant. (SCT) Now, I’m waiting for the donor to agree a date, which will hopefully be in the next few weeks as I’m keen to crack on with the procedure and ultimately start rebuilding my life having had months of intensive chemotherapy to treat Acute Myeloid Leukaemia.

No one every imagines they will be diagnosed with leukaemia and they certainly don’t expect to have a transplant. Thanks to the amazing team at St Bart’s, London I am in remission, I’ve managed to tolerate months of chemo, phases where I was neutropenic and I’m now in a position to go ahead with the transplant.

The next few weeks will be anxious ones as I wait for a date and confirmation the donor passes the health test. I’m making the most of my brief time away from the hospital, at the weekend I went to Holkham Beach in Norfolk with a truly fabulous friend who’d come to visit me from Ireland. As a SCT will in the short term limit my travelling adventures I’ve decided to finally explore more of the UK. Holkham was a gorgeous place to visit, and a great start to exploring the UK. As per usual on Sunday when a BBQ was planned the skies threatened rain, still we managed to BBQ and eat outside before the rain drove us in doors, towards the wine filled fridge! I’m enjoying a quiet day today relaxing at home, spending time with my cat who has missed me a lot over the past four months.

Of course, I have to visit the hospital this week and unfortunately it’s for the loathsome bone marrow aspiration, so I have my fingers crossed I receive more good news in the form of a SCT date to counter balance the extremely unpleasant procedure.

Beautiful Holkham Beach, Norfolk
Beautiful Holkham Beach, Norfolk
Fun in the sun
Fun in the sun

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