I am now over three years post-stem cell transplant after being diagnosed with acute myeloid leukaemia (AML) in June 2017. Since my previous story submitted to Leukaemia Care, there have certainly been a variety of ups and downs while continuing my journey to recovery.
I began my slow return to work in 2018, despite many advisors saying: “Are you sure you still want to be a teacher?!” The obvious risk of infection is high in my job, particularly being a primary school teacher. However, I was very determined to get back into work and back to teaching – it is my passion and I love what I do! As expected, there were a few bumps in the road, and unfortunately dealing with infections, colds and illness is just a part of the next stage of healing – my body had no immunity and was almost like a baby. With every illness I had though, I knew my body was being taught how to try and fight against that the next time. So, even though it was tough and did result in a few hospital admissions in the end, I feel it has made me stronger.
There has been a lot of times where I have felt frustrated with my post-transplant body. I remember hearing the phrase ‘new normal’ a lot when I had my transplant, and boy is this true! It basically means that you shouldn’t be waiting for things to go back to ’normal’ because that is probably not going to happen. But just because I have had to adapt to my ‘new normal’, it doesn’t necessarily mean it’s a bad thing – it is just an adjustment.
One thing I have learnt during this period of recovery is that you need to be kind to yourself – in all ways! If you are feeling tired or weak, accept it and know when you need to rest. If you feel like having a big cry, then have a big cry! If you feel you need to speak to someone, reach out to people. Equally, if you need some time to reflect alone, take it! My fiancé Adam often refers to me pulling out my ‘leukaemia card’, which is obviously a joke between us. However, despite the joke, it really is something that everyone should feel able to do after battling leukaemia. I realised I should never feel bad or guilty for the way I feel, or what I want to do. Not many people know what has happened or what I have gone through, and it’s important to remember that, so if you need to bring up the fact you faced a life changing illness then do it!
By 2019 I was feeling much stronger, more confident with being around others and wanting to start my life again. I spent the year catching up on missed time and key parts of my life. I got engaged, went on holidays (including an amazing trip to Disneyland) and spent time with my family and friends that I had missed during the time I spent in hospital. I was back at work and feeling more human again, rather than a cancer patient. I began to plan my wedding for July 2020 which would be 10 years since I met my fiancé.
I also began to get all my new ‘baby’ jabs which I had been able to have after being two years post-transplant. These have all been fine; I have had hardly any reactions and it’s been quite nice to know I am protected against these more serious illnesses. I also have my flu jab every year, although I still caught flu one Christmas! I am sure that the flu jab made it much easier to manage.
Something I wanted to mention in this story is that my hair has not regrown after my transplant – even four years down the line. I think it is important to say this, as consistently throughout my treatment I was told, “Don’t worry – it will grow back!” These words can be quite damaging, and I would urge others not to tell cancer patients this. Yes, I am probably on the very unlucky side of this, and most people do regain their hair, but I feel it’s important to recognise that it might not happen for everyone. There have been a few positives to this though – especially not having to spend an extra 20 minutes in the morning sorting my hair! I have purchased a custom-made human hair wig which is pretty similar to my previous hair before diagnosis, and I enjoy wearing it. People always comment on how real it looks! I didn’t find this straight away, so it’s always worth having a look around at different wig specialists to find something that suits you.
After such an enjoyable year, at the start of 2020 it was easy to think this was the beginning of the next chapter of my life. However, the universe had other ideas! The start of hearing about COVID-19 was a scary time. It was new and unheard of, and at the time I was still at work and feared this new disease. In March 2020 our school was closed, and I began to shield as I was placed on the Clinically Extremely Vulnerable list. It felt like the biggest thump to the chest. After finally being free to start living again, it was yet another setback and another feeling of isolation which brought back memories of being in hospital. I didn’t go past my doorstep until June 1st when I was able to go out for a walk!
It was a difficult time and obviously we had to postpone our wedding too. It was another reminder of time lost, events missed and a feeling of unfairness – even if it was happening to the whole world this time. I did find things to keep myself busy though. I was enjoying drawing and calligraphy, I started sewing and did bits of exercise at home as well. I was determined to keep myself going and not fall into the trap of losing the strength I had built.
I can’t imagine what it has been like to have been through a diagnosis during the pandemic. It was hard enough as it was, without having to do it alone. It’s hard to give advice from my experience now, as I was lucky enough to have my family around me. However, my advice for anyone who is struggling or has been recently diagnosed is:
- Don’t google too many things! I know it is the most tempting thing to do and I’m 100% guilty of it but it is not always helpful. It can send your brain into overdrive thinking of the worst-case scenarios.
- Enjoy the ‘little wins!’ If you have actually managed to get out of bed, have a shower and get changed into fresh PJs give yourself a big cheer! This is a huge achievement – enjoy the feeling of pride!
- Eat what you like, when you like and when you can. Does it matter if you eat jelly or ice cream for breakfast? Not really! You need calories to keep your energy to get through treatment. And if it is only a spoonful, just be glad you managed that.
- Be honest with the doctors and tell them exactly how you feel. There won’t be any bonus points for being a hero!
- Find ways to fill your hospital days. After spending almost seven months in hospital, I know how long the days feel. If that happens to be sleeping, that’s also fine!
- Stay in touch with people. Ring, FaceTime, Zoom, WhatsApp are all ways to keep in contact with your loved ones. Let’s face it, that’s what the whole world has been doing this past year to keep in contact too, so people should be able to chat with you. I recently became a buddy for Leukaemia Care. This could also be a good resource for anyone diagnosed who needs someone to chat to who has been through a similar experience.
Lockdown has not been kind to us leukaemia survivors. It has been a reminder of time spent isolated from the world and has also put that pause button on our lives and recovery. But luckily, having a disease such as leukaemia builds up our strength and makes us full of strong stuff. If we can survive a bone marrow biopsy… surely, we can survive anything?
To end on a positive note, there is light at the end of the tunnel. I had a particularly difficult time during my treatment and managed to accumulate every infection going, but here I am – almost four years later and feeling stronger than ever. Yes, there are times when it feels a bit rubbish and those times where you say – why me? But if anything, being an AML survivor has taught me to appreciate the things that matter and has changed my whole outlook on the world. I am counting down the days until my five years post-transplant date, which will be December 2022. And yes, there will be a party!
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