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I was diagnosed in December 2014 with acute myeloid leukaemia (AML). To say that the bottom of my world fell out that day is a major understatement.
I had recently celebrated my 50th birthday – and apart from feeling extremely tired, a couple of gum infections, and a very strange pounding in my head – I had no idea that anything that serious was wrong with me.
In September 2014, I started to have what I called a pulsating in my neck – like I could hear my pulse in my head. My doctor thought it may be tinnitus and referred me to the ear, nose and throat clinic. I received an appointment through for December 2014. In the meanwhile, I had two gum infections and was becoming increasingly tired. Everything was an effort – walking to the shops, attempting my gym classes; everyday life was more difficult. I also had a few minor nosebleeds, and my vision was affected. I was on holiday at the time, but when I closed my eyes it was like I could still see the dark outline of the sun. I subsequently learnt that this was a bleed behind the eye due to the leukaemia.
After visiting my doctor on 9th December 2014 with my general feeling of malaise, a blood test was deemed necessary. Fortunately for me, there was a cancellation early the following morning at 9.10am.
I had my blood test, then went to work. Later that afternoon I was at home getting the Christmas tree down from the loft with my daughter when my mobile rang (4.30pm) – I left it. The house phone rang – I ignored that – I wanted to sort the tree out! Then again, my mobile rang, and my daughter made me answer it. It was my GP, and he said that he had a call from Bournemouth Hospital; they had my blood test results, I needed to go in immediately, and to take an overnight bag as I would be admitted for several days as I was anaemic.
We were in the hospital by 6.00pm – more bloods taken and discussions with the consultant – to be finally given the devastating news that I had acute myeloid leukaemia (AML) by 9.00pm. Chemotherapy was to begin as soon as all the tests had been completed to make sure I was strong enough to cope.
Nobody can prepare you for the journey that you are about to embark on! From the side effects of the chemo, the bone marrow biopsies, having your Hickman line inserted and removed (three times in total for me), a PICC line, and the total isolation, loneliness, despair and helplessness of the situation.
I am a single mother to two beautiful daughters who were 19 and 22 at the time of my diagnosis – the impact on them was massive. My youngest daughter was living and working abroad at the time and gave up her job to come home and help look after me alongside her sister. It was a total role reversal – naturally as a mother you do the parenting – but I was unable to do so anymore, and that was very hard for all three of us. Such a difficult, demanding, emotional and uncertain time.
Sadly, I was diagnosed as being of high risk of relapse, so I would need a stem cell transplant. This took place in Southampton Hospital on May 20th 2015 – my new re-birthday. I received my new stem cells at approximately 6.30pm – my day zero, and my chance of survival.
I spent a total of 19 weeks and four days in hospital receiving treatment. I was euphoric at being discharged, home to my bed and familiar surroundings. Yet this was just the next important phase of my recovery.
Initially I had two appointments per week for the first month, then once a week and then once a fortnight, slowly diminishing the longer I got from my transplant. I am now on once every three months.
In the first 18 months post-transplant, life as I knew it was very much on hold. I was unable to mix with people, no shopping, no going out, as I had no immune system and normal coughs and colds could become life threatening for me.
Yet more isolation.
My hair began to grow back, and slowly my appetite began to return. I started to look and feel like my old self again, slowly resuming my life, albeit now with a totally different perspective.
Throughout the period after my stem cell transplant, my daughters and I regularly wrote to my donor, thanking them for saving my life. After the obligatory two years of anonymity with my donor, we finally met in September 2017 and we have become firm friends – she is my lifesaver!
The most special thing is that Annette, my donor, was a guest of honour at my daughter’s wedding last May (2018) and I was lucky enough to give my daughter away – a very special moment considering all that we had been through.
Annette and I have such a special bond; we message each other every day and we try to visit each other once a month despite living 150 miles apart. We are genetic twins.
I will be five years post-transplant on 20th May 2020. It is most certainly a very special day for us, as if it wasn’t for Annette, the fabulous doctors and nurses, I probably wouldn’t be alive to celebrate today.
Could you save someone’s life?
To join the stem cell register, head to:
- DKMS – www.dkms.org.uk/en
- Anthony Nolan – www.anthonynolan.org