My Cancer Diagnosis and The Plan – BLOG

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In January I attended a medical to see of I was fit enough to donate stem cells. Just before Christmas I had come up as a match for someone the Bone Marrow and Stem Cell Register run by The Anthony Nolan Trust. After some basic blood samples by my GP, I embarked on a journey to Sheffield. This just happened to be when extreme snowfall was occuring there.

After arriving at The Royal Hallamshire Hospital, I had my basic observations taken before being interviewed by a specialist consultant to go over my medical history. So far so good. After that, I had a large number of blood samples taken followed by an Electro Cardiogram (ECG), which was also all good. I then set off on my drive home which turned into a 12 hour ordeal due to numerous diversions as a result of the snow in England.

Abnormal Results

A fortnight later, my phone rang and upon answering ot was a Consultant for Anthony Nolan. She advised me that several of my blood test results had come back abnormal.

Firstly, I was extremely iron deficient and more worryingly, my Haematocrit was high. This is a measure if the volume of Red Blood Cells in your blood. I’m in a unique situation of knowing this isn’t ideal, as my father has the same issue. Read on.

My GP was contacted and the same day she was taking several more vials of blood to check my organs and to confirm that the Anthony Nolan results weren’t a one off.

A week later, I would receive from my GP that changed my life forever: I have a rare form of Blood Cancer that will be with me for the rest of my days. It’s NOT terminal, but careful management will be required.

I have a condition called Polycythemia Vera. It is not “usually” genetic, but in my case it might be as my father also has it.

As well as being diagnosed with Polycythemia, I also have Iron Deficiency Anemia and Very low Follate Levels. I have been started on iron & follic acid supplements by my GP.

Treatment

While Polycythemia is not terminal, it will be with me for the rest of my life. As my blood is much thicker than it should be, I am a much greater risk of Stroke, Heart Attack and Thrombosis. I am yet to see the Haemotology Department at my local hospital, but it’s near certain I’ll end on on some form of blood thinners to low my risk of clots.

Once the iron begins to kick in, this has the effect of raising my already high haemoglobin, (red blood cells), something that isn’t ideal. The first type of treatment for this is having 1 or 2 pints if blood taken over a month to lower my red cell count.

I have been feeling extremely tired for the past several months, but had put ot down to lockdown and being busy with my kids. It turns out I was wrong.

My Plan

For now, I’ll be taking things easy as my body adjusts to medications and treatments are decided and begun. J will still be reporting on Important issues, but it os more likely to be via social media, especially my Twitter, instead if on here.

However, this os not to say I won’t be writing in here, it’s just much less likely.

Meanwhile, Charlotte Hughes will continue to publish new stories on here, and I ask you all support her as much as you have me. You should definitely check out some of her articles.

As I really value this website and what we’ve built, I want to fundraise so I can take on some new writers and pay them a decent wage. There are so many writers who deserve a chance and I want to turn my diagnosis into a positive.

If you’d like to support me in this plan, please consider donating via the PayPal button further down. It really means a lot how much support you have given so far.

This is not a goodbye, nor is it the end. If anything it’s the beginning of a new journey on which I hope you’ll join me on.

Be safe, be kind and most importantly; love yourself. It may be difficult right now, but things will get better. We have good times again.

Alex xxx

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4 comments

  • So sorry to read this Alex. It’s good that your condition is manageable, but nevertheless life changing. I wish you well.

    I was diagnosed with MDS a couple of years ago and recognise the great work that the Anthony Nolan Trust and supporters carry out.

  • I’m sorry for the news. Please get more opinions. Healing hugs…praying for you. 💓🙏

  • So sorry to hear you are ill. Sincere best wishes for a great improvement and every success in managing your illness well. As your treatments kick in and you get used to your medication I hope you will start to feel physically more like your normal self .

    • You have my complete sympathy and understanding, Alex. I know exactly how it feels to be given a life changing diagnosis. I’m glad that it was found and a prompt management plan put into place. I have a blood condition too, which was found during a routine blood count during my last pregnancy. I have autoimmune thrombocytopenia – a bleeding disorder – which means I don’t have enough platelets for my blood to clot properly. It turned out to be caused by lupus. Since then I had the lupus diagnosis, and more recently, the insidious damage that it has caused to my lungs has become apparent. I have lung fibrosis and bronchiectastis. The lung fibrosis is terminal. My mother died of it – she had rheumatoid arthritis and that’s what caused her fibrosis.

      Then more recently – last February – I was diagnosed with EDS, which is congenital, I’ve had that from birth. I suspect I inherited that from mum, too.

      It’s difficult to maintain campaigning when you are ill. That is why I have needed to take regular breaks, too. We just do what we can, when we can, and in our own unique way.

      Wishing you my very best, Alex. Take good care of yourself. Love and hugs x