It’s the final countdown da da da da dadadadada!

Hello there,

Yes. The final countdown is ON. It’s five days until I start my stem cell transplant!! I can’t believe it’s actually happening and so soon! 

A lot of prep goes on behind the scenes before you go in for a transplant – heart and kidney function tests (amazingly, after all my treatment I still have ‘good physiology’ – to quote my new stem cell Professor).

You also need to have your gnashers checked out to identify any potential problems that could occur during transplant – which is great as I always enjoy a trip to the  dentist 😉

The other thing I’m doing is taking part in a clinical trial which could help me avoid some serious complications further down the line.

One of the biggest things to worry about during transplant is developing something called graft versus host disease (GVHD). This can happen if the donor’s stem cells (the graft) sees my cells (the host) as foreign and attack them. The result can range from skin, to digestive and liver problems and to be honest with everything that’s happened to me over the past 18 months, I can do without any additional complications!

So I’m at the amazing Macmillan Cancer Centre today, hooked up to an apheresis cell separating machine, which as I type, is pulling blood out of my body via a vas cath and separating it into plasma, red and white cells and lymphocytes.

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Meet Athena, the apheresis wonder-machine

A vas cath is a line into a big vein in my leg that’s then connected to the apheresis machine. I was feeling super anxious about having the vas cath put in but it went in like a dream. I didn’t even feel the local anaesthetic which usually stings like a bee – must be my lucky day!

The trial scientists are after a bag of my lymphocytes. They will take them to a lab and then separate them out to find my dendritic cells. These cells will then be mixed with my donor’s T cells. Any T cells that react badly to my dendritic cells will be removed and I will then be given the remainder at 30, 60 and 90 days. The benefit of doing this it to get my donor’s great immune system without it reacting badly with my cells and thus avoiding GVHD. Wouldn’t that be amazing? I’m so lucky to be treated at UCLH, it really is a fantastic hospital.

When my transplant treatment kicks off next Tuesday I’ll start with six days of chemo (delightful!) and then on the 7th day I’ll be given my amazing donor’s stem cells. Then it’s a case of waiting for my new immune system to grow – a process known as engraftment. I can expect this to take two to three weeks, during which time I won’t have an immune system so I’ll need to be really careful to stay away from anyone who might give me an infection. I won’t be able to leave hospital for at least three weeks. Time for lots of sleeping and hopefully a smooth transplant which will lead to a cancer-free life.

Here’s hoping 🙏

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12 thoughts on “It’s the final countdown da da da da dadadadada!

  1. You really are an amazing woman Rachael, such an inspiration. I hope everything goes to plan and you can get on and live your life to the max, you so deserve it. Good luck beautiful lady xx
    Mandie xx

    Liked by 1 person

  2. Well done Rachael. I am waiting for a super hero to emerge at the end of this process (you are one already of course) – but also supercharged and ready to fight crime over the roof tops of the capital……..much love Geoff xx

    Liked by 1 person

  3. Wishing you so much luck for the treatment Rach’!!

    Thank you for sharing your inspiring and deeply emotional journey with us. Your blog is so beautifully written.

    Xxx

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  4. Rachael, you are such a strong stoic and feisty girl, our admiration for you is so off the scale, well done you and keep on carrying on, we wish you all the luck in the world. Love from Derek and Jeanine (Charles’s Mum and Step Dad) xxx

    Liked by 1 person

  5. Hi Rachael, You don’t know me as I’ve only just started using the Anthony Nolan site and in the process of reading people’s stories I have come across yours’. As you are in the midst of going through your transplant preparation, I thought I would drop you a note to offer words of support and encouragement. I’m nearly fifteen months post transplant (12 March 2015 was my ‘new birthday’) and my lovely twin brother was my donor (being a twin didn’t actually increase his chance of being a match since he is male and I’m female so still only a 1 in 4 chance of being a match). I was diagnosed with MDS -5q (Myelodysplastic syndrome) a form of bone marrow failure in June 2011. There are five forms of the disease varying in severity and I was told that mine was the milder of them with only a 3% chance of progressing to AML, and was given a reasonable prognosis of 12 years and put on ‘wait and watch’ regime of three monthly blood tests, and annual bone marrow biopsies. However in November 2014 after a routine bone marrow biopsy I was told that it had unexpectedly progressed to AML and my prognosis was now very poor (18 months) and my only curative option was a bone marrow transplant. The rest as they say, is history. Everyone’s journey and experience will be a bit different and inevitably you will be warned of all the possibilities of serious side affects to the chemotherapy etc, and gvhd following the transplant, but all one can do is to be prepared for the worst and hope for the best and try and relax into that mindset and not overthink the process. I had quite nasty side affects (mouth ulcers, nausea, sickness,etc) to the chemotherapy but once my neutrophils recovered these started to subside quite quickly. I’ve also been lucky with only minor gvhd (skin rashes) which were treated topically with steroid creams and emollients. I’m now seen at hospital every six weeks and have just started to have my childhood revaccination programme (through my family GP at the instruction of the hospital) since my immune system is that of a new born baby and has to be rebuilt, and I assume that your protocol will be the same. I wish you well Rachael and I’m sure that with all the support and love of your family and friends, and the amazing support of your medical team, you will get through this.

    Liked by 1 person

    1. Hi Sarah, thanks so much – I’m currently going through the process…it isn’t easy but hopefully I’ll get through it all.

      Thanks for taking the time to read my site and for your words of encouragement.

      All the best xx

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  6. Hi Rachael,

    Lovely to hear from you and I’m pleased that you found my comments helpful.

    My advice would be that you try and take it a day at a time, and if possible do some relaxation and breathing exercises (mindfulness etc) and I think you will find that that will help you get through the not so good days. I found that trying to keep to some sort of routine did help e.g.: having a daily shower, getting dressed, sitting in the chair, knitting, etc, although some days this fell by the wayside and I just felt too unwell and the days passed in something of a blur. Thankfully these days weren’t too frequent and I was lucky that I left hospital on day +13 as my neutrophils came back quite quickly and so getting home to the comfort of my own bed and my husband taking care of me and offering me tempting food, was pure joy.

    You’ll get there, it just takes patience and determination and trying to keep as positive as you can, but you are allowed days when you feel very down and fed up but, that is all part of the process so try and not be hard on yourself if/when you feel this way. The support of your family, friends and of course your medical team is incalculable. And remember if you are in any way worried about anything, then do mention it to your doctor or nurse at the time; it’s what they are there for!

    Thinking of you.

    Sarah x

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