Emma Palmer: my leukaemia story

My diagnosis

“February 2024 is when my world changed forever. 

Due to previous blood clots, I would have yearly routine blood tests done. After my one this year, I got a phone call from 111 at 7:30 in the morning telling me to present to A&E immediately. I was confused as I didn’t feel unwell in the slightest, so I waited to speak to my GP. The GP told me my bloods had come back abnormal and I needed to see a haematologist immediately. I still did not think anything was wrong.

The following week was a blur. I went from working full time and being very involved as a Samaritan to being told I had acute myeloid leukaemia (AML). My only chance of survival was a stem cell transplant from a donor as I had a genetic mutation. My world as I knew it stopped within five minutes. I made the decision there and then that the only way to deal with this was to take a day at a time. 

I knew due to my job that Dr Google was not my friend, and I had to put my trust 100% in the amazing team at UCLH. At the appointment when I was diagnosed both my husband and friend Karen were with me. Having Karen there was a blessing because she was able to hear things perhaps David and I didn’t.

Treatment and support

Within a week I was admitted for my first round of chemo. Unfortunately, complications set in and I became very unwell and ending up staying in hospital for six weeks. I still had not had time to process anything, but I realised how lucky I was to have been diagnosed so quickly with no symptoms which meant I was strong enough to have the chemo, something that is not afforded to so many people. 

Everybody around me, especially my husband David, son Oliver and his partner Bea, and my amazing friends, were all thrown into this world that we knew nothing about with me. Without them, I could not have done this at all. I am so lucky to have had such support, and every person I met at UCLH were true angels. 

I then went on to have another two rounds of chemo, which involved spending a lot of time as an inpatient until my miracle donor was found. My DNA is quite mixed but, somehow, a 12/12 donor was found. I am so grateful to my CNS Jude and Anthony Nolan for giving me every chance at life.  

I was readmitted on 4th July for my next round of chemo followed by my transplant on the 11th July. This is my re-birthday, and what a day it was. My emotions were all over the place. The transplant itself was fascinating, and I felt like I was in a scene from a sci fi film. Little did I know what was to come. I was on a trial and unfortunately, I had a reaction to one of the anti-rejection drugs and had to spend another seven weeks in hospital. Fortunately, the team were able to sort it out and I eventually went home. 

My first week home was difficult. I had become so used to the safety of my hospital room and the nurses bringing my medication. I was scared. Then, at my first follow up appointment a week later I was readmitted with GVHD. Fortunately, I only stayed in for a week as steroids managed to sort this episode out. I have now been home for three weeks and only now has the reality and enormity of everything hit me. 

I think people believe that when your treatment is finished, you are okay. But, actually, you’re not. But because I have no “scars” visible like a solid organ transplant, people assume that it’s not as bad. This could not be further from the truth. I have the immune system of a newborn baby and cannot afford to get any infection. The mental health side of things has also kicked in. As positive as I have tried to be with taking a day at a time, I now have too much time to think about the future and what it looks like. 

Because we are coming into winter with all the bugs, I cannot afford to go into the real world until March and that frightens me. The fatigue is indescribable. It’s like nothing I have ever experienced before, and unless you have lived it, it is so difficult for anybody to understand. 

I try not to look back, but you can’t help it sometimes and it just hits me when I realise what has happened in the last 7 months. My weekly visits to hospital still fill me with dread but I know my bloods are, in the main, doing what they should and I’m on track to a (hopefully) full recovery. Every different outcome flies through my brain most days and I have had to have those difficult conversations with family and close friends. I try not to live with the ‘what ifs’ but our brains have a mind of their own, sometimes taking us to places we don’t want to be. My problem is I have no patience, which isn’t great when you are thrown into this world. It’s a long old journey. 

Leukaemia Care have been pivotal in supporting me from day one. What wonderful services they offer. In hospital, I had a Navigator visit me every week. She was so supportive and went through everything that Leukaemia Care offered.  

When I came home after my first hospital visit, I got in touch with them about any benefits I might be entitled to as I did not know how long I would be unable to work for. I had already checked about certain benefits and was told that as my husband still worked and we had some savings I was not entitled to any help, which shocked me. We have both worked all our lives, but we’re now expected to use our hard-earned savings to live. Cancer is the gift that keeps on giving! We still had to pay our mortgage and live whilst battling my treatment. I spoke to Lisa in the welfare department who was beyond helpful and told me I could apply for PIP. When I got the form, I was bamboozled. There were so many questions, and I had no idea where to start. Fortunately, I had quite a few phone calls with her, and she helped me answer them all. I was awarded PIP a couple of weeks ago which helps a little bit towards our bills, but I am quite angry about the lack of financial support available for cancer patients. The last thing you need to be worrying about is financial matters when in a nutshell you are fighting to stay alive. 

Living with leukaemia

Since I have been home my mental health has deteriorated and yet again Leukaemia Care helped me with this. They provide me with funding for six sessions of counselling with a therapist. They can provide this for not only the patient but immediate family, too. I am going to be starting therapy next week. I know everything happened so quickly with my diagnosis, so I never had the chance to process anything until now when I have 24 hours a day to think about it. I was also paired up with a buddy, somebody who has gone through this journey who has been wonderful. 

When I am recovered, I would love to be able to give back and something I will definitely do. I did a Facebook birthday fundraiser and surprisingly raised just over £1,000 which made me feel useful. That’s another thing cancer does to you, takes away your purpose. Although, a friend said something that has stuck with me, “you have the biggest purpose ever to stay alive”, which is true but when you are used to helping others as in my Samaritan role it is so difficult to have to step back. 

The last seven months have taught me so much about life and every time I have a wobble, I try to tell myself how far I have come and how fortunate I am despite the diagnosis to be able to tell my story. There are still so many unanswerable questions about the future but one thing I know for sure is that I will do everything I can to enjoy it. I know it sounds cliché but it’s true: you never know what you have around you until you nearly lose it.”