“I’m so glad I went ahead with a blood test as I’d started to feel better, but it turned out to be so important that I continued with the planned test. It was because I’d had an infection a few months back and my white blood count was still up so another test was due – the one I nearly didn’t have!
My family picked up what turned out to be my symptoms – my husband remembers tiredness being a factor and my daughter-in-law and her best friend started to notice that I would pick up any viral infection really easily, whilst I can remember cuts or scrapes taking longer to heal. I had been taking natural remedies for a while before diagnosis to help with these issues and boost my immune system. During the winter I would avoid public transport finding I’d often get a cold afterwards if I did use the bus or tram. I would avoid large gatherings and rearrange meetings if anyone had a cold. Most of the measures brought in with COVID-19 I was already doing, except wearing a mask.
At the time I was living in France and in the afternoon, after the blood test I checked my results online and it was by the evening that my GP rang to say they were looking into my results. I did further careful research into the results (it’s important to use websites such as Leukaemia Care) and realised from that that it could be serious. After I translated them from French and was asked by my GP to go and see her the next day. Her secretary spent all afternoon trying to get me an emergency appointment with a haematologist.
It was just three weeks later when I received my diagnosis, in mid-December of 2016. I was prepared, I’d looked up the possibilities, and it appeared to me that chronic myeloid leukaemia (CML) was one of the better types to have. It could be managed, and I could expect a fairly normal lifespan.
After our appointment with the specialist I asked my husband what he thought. He said it was easy to cope with, because I was coping.
I found that comment flattering – in that I was pleased I was coping well, but if I wasn’t careful going forward, I could feel an expectation on me to cope so it would make everything ok for everyone else.
My initial reaction was just that, to make everything ok for everyone else, putting them ahead of myself at this difficult time. Our daughter was in the States for a friend’s wedding, and we felt we needed to keep the diagnosis from her till she got back, so she wasn’t upset.
I called my brother in the UK, and told him, and asked him to go in person to tell my Mom and Dad, so they wouldn’t be shocked hearing the news over the phone.
A very dear friend had just lost her husband and, again, we asked friends to let her know in person.
For New Year, our son and his wife’s family were planning to spend a few days in the Alps in a chalet, which was about a four-hour drive away. At this time, I had been on my treatment for a couple of weeks, had undergone my first bone marrow biopsy, and was sitting at home not able to get warm despite the log fire roaring and being covered in blankets.
We were meant to be joining them and I delayed making a decision about whether I was up to it. I didn’t want to spoil everyone’s fun for New Year, but I was wondering how I was going to feel going out into the snow when I felt constantly chilled to the bone, and then having any energy to socialise when I was feeling nauseous and extremely fatigued. In the end I felt I wasn’t up to going and I said no. My family were understanding, and my husband and daughter stayed at home with me.
Looking back it has been a life changing journey. I responded very well to the treatment, mainly thanks to discovering the leukaemia quickly and then beginning treatment immediately. I also have faith and believe that my good results are an answer to prayer.
It’s not been an easy journey, the side effects of Imatinib were very debilitating. I am now almost seven years on and have been treatment free for sixteen months. I feel as though I am starting to regain my health and strength very slowly, although I’m not yet back at work. It is still a struggle to manage day to day, with foot pain predominantly stopping me from being as active as before. However, in some ways it is a blessing as it is forcing me to recuperate at a slower, steadier pace, which is probably better in the long run (no pun intended); even though I can feel really frustrated at times, not being able to do what I could do before.
I received a £200 gift from Leukaemia Care, which was really helpful last year with the rising costs of fuel and heating, helping me to keep the house reasonably warm, and use the car for appointments, as public transport was very tiring, and I wanted to reduce the risk of catching an infection. The Leukaemia Care website was particularly helpful during COVID-19 for advice, as well as all their booklets which were very helpful and informative.
To finish, I would say that going in to lockdown and shielding with leukaemia taught me some important lessons. Everyone copes in different ways, some want to ignore it and carry on as before, some want things to get back to normal as quickly as possible, some continue to shield with their life being very much reduced and changed. For the outgoing personality it was a hardship, for the more introvert or quiet person, it may have been a relief.
Being honest with ourselves about diagnosis and how we feel is important. I had several sessions with a counsellor, so I could get off my chest what was bothering me, without offloading it all onto my husband and family. It’s a really tough journey for them too, but I have to remind myself it’s not my job to make it alright for everyone else to cope with it. When I’m feeling sick, in pain, unwell, fatigued, it is what it is. It’s been a long road, but taking one day at a time, one situation at a time, being kind to myself and trying to be kind to others (even when I don’t feel like it), and prayer, have helped.
I follow a Facebook group for patients of Chronic Myeloid Leukaemia, and whilst I rarely post, I very much empathise with what a lot of patients are dealing with. The more people are able to say what they are struggling with, the more identifiable the symptoms become, such as fatigue, bone pain, nausea, stomach upset, etc. These forums are invaluable in putting a voice to how we are feeling and coping (or not) with the leukaemia, its treatment, and – as I discovered last year – withdrawal pains from ending the treatment.
As part of ongoing checks for my health, I have blood tests every three months, and a phone appointment with a haematologist to discuss the test results, and about how I am feeling. I hope my journey will help others on theirs.”
If you or a loved one needs advice or support regarding your diagnosis, please get in touch. You can call our free helpline on 08088 010 444 and speak to one of our nurses. Alternatively, you can send a message to our team via WhatsApp on 07500 068 065 (services available Monday to Friday, 9am – 5pm).
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