In 2015, I had problems with my back. I had osteoporosis and had broken several vertebrae. I had seen a few different doctors and was eventually referred to a metabolic bone specialist. She carried out various blood tests as part of her investigations. And following one such blood test in 2017, I received a call from my doctor, saying I needed to go to hospital urgently as the results had shown my haemoglobin and platelet levels were dangerously low.
It was just before Christmas and I was due to be flying to Germany to spend the festive period with my brother and his family. I remember asking my doctor if I’d still be able to go and he said he didn’t think so. But I did not realise at that point exactly why, and I certainly never imagined I had blood cancer.
I had been in pain for a while and was unable to walk very far, but I had put my aching limbs and bones down to my back problems. I was also feeling very tired all the time, but having lost both my parents recently in a very short space of time, I had assumed this was all down to grief and depression.
On 16th December, I was admitted to hospital – and stayed there over Christmas and into New Year. That was my first Christmas spent in hospital. Little did I know at the time that I would be doing the same thing the following year.
Christmas in hospital was a lot better than I imagined it would be. I was in a bubble in an isolation room, but it was a novelty to hear the Salvation Army band playing carols in the corridor and to see someone dressed as Father Christmas walking around the unit. The staff really do a great job of trying to make it all special.
On Boxing Day, I was allowed out for a few hours – and I felt like Cinderella! I managed to get home, have a shower, dress up a bit, and made it to my cousin’s house for a bit of Christmas dinner, before rushing back to be in my hospital clothes and back on the ward by 6pm.
In my first few days in hospital, I was still in the dark about exactly why I was there. I remember noticing leaflets about cancer around the place and wondered why on earth I had been admitted to a cancer ward. I was having regular blood transfusions, but it was not until I had my bone marrow biopsy that I fully realised what the doctors were looking for. I was still waiting for these biopsy results when I left hospital in the New Year. On my discharge paperwork, the notes said ‘MDS unconfirmed’. I didn’t know what this meant and was nervous to Google it. I just figured I would wait for my results and let my consultant explain everything to me.
A short time later, my biopsy results came back and my consultant confirmed my MDS diagnosis. Life immediately changed and I never returned to work. I started treatment straight away with a view to having a stem cell transplant. It was a rollercoaster of emotions as my brother and nephew were both tested, but neither were a suitable match for me. And no match could be found for me on the national database either.
Since then, I have continued with chemo and weekly blood and platelet transfusions. I have investigated several clinical trials, but none have so far been suitable for me. I have been pretty lucky in terms of the side effects of my treatment. It does make me feel sick, but although I was originally told I might lose my hair, this hasn’t happened. Because my blood is so thin, I do suffer with bleeding. In the past, I had experienced nose and mouth bleeds, but more recently I have had a few subdural haemorrhages which have led to long stays in hospital – though luckily they have not affected my brain. A stem cell transplant is no longer an option for me as the risks are simply too high.
At times, things are difficult. While many of my friends are enjoying their retirements and travelling, I have to plan the rest of my life around hospital visits. And it feels as if the world is getting smaller for me. Two of my hospital friends have just gone into palliative care which is tough to see.
And while it is wonderful for people to say, ‘you look so well, you look great etc’, it can be really frustrating. They don’t see me on the days that I am me on the sofa or not feeling great. People forget that not all disabilities are visible… I have that sticker on the back of my car.
Despite this, I am determined to stay positive. I feel lucky to be supported by family and friends and to be helped by the various support groups available. I live by the mantra that ‘I am living with cancer, not dying from it’. I also believe ‘you have to be well to be ill’ – you have to be on top of things to manage all your appointments, keep across all your medication, and make sure you know exactly what’s happening with all your treatments.
As Christmas approaches each year, the hospital staff always have a laugh with me and joke about which room I’ll be booking for my stay. But hopefully, this year, I will be able to enjoy the festive period away from the ward…
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