On Friday 1st May 2020, life was turned upside down by a phone call from my GP.
We were already in the middle of the first lockdown due to coronavirus; I was continuing to work as a practice nurse in a GP surgery, my husband was working from home, and we were home-schooling our two children aged six and nine. I had been unwell for a few days with tonsillitis which was unusual for me as I had never been off sick in over seven years. After a course of antibiotics, I was starting to feel better, but then I developed a strange ‘rash’ on my face, arms and chest which appeared like tiny bruises. I felt fine, and even with over 20 years’ experience as a nurse, I didn’t think it was anything serious. I had thought I would wait until Monday and show one of the doctors at work.
I don’t know what changed my mind, but for some reason I decided to make an appointment with my own GP that day. I had a telephone consultation initially and was asked to come down to the surgery. The GP had a look at the ‘rash’ and thought it might be a reaction to the antibiotics I had taken, but while I was there she asked the nurse to take some bloods. I went home not thinking much about it and got on with helping the children with their schoolwork. About three hours later my phone rang and it was the GP. She just said she was very sorry, but the blood tests had come back and unfortunately it was bad news as the results showed it was likely I had leukaemia.
I couldn’t even take in what she was saying – I just remember that I started crying and she was saying that I needed to pack a bag and go to Ward 33 at the Freeman Hospital and she gave me the name of the consultant. I ran into the study where my husband was working and was trying to tell him that ‘they think I’ve got leukaemia’ while trying to write down the information the GP was telling me. I put the phone down but then my husband had to ring the surgery back just to clarify what was happening because we couldn’t quite believe it.
So, within half an hour I had packed a bag and we bundled the children into the car and drove to the Freeman Hospital, which is about 20 minutes from where we live. I just remember crying all the way there. We didn’t know what to tell the children because we didn’t know what was going to happen. I think one of worst moments of the whole ordeal was being dropped off at the front entrance of the hospital (my family weren’t allowed into the hospital due to the coronavirus restrictions) and having to say goodbye to my husband and the children, not knowing when I would come home or what would happen next. I’d never been to the Freeman Hospital before and I didn’t even know where I was going, so walking into the Northern Centre for Cancer Care alone was a terrifying moment.
I found the ward and was taken into a treatment room where I was briefly left on my own, but before long a doctor came in to take some blood samples. Soon afterwards, the registrar and consultant came in to confirm that I definitely had acute myeloid leukaemia (AML) and that I would be in hospital for about five weeks initially. It was a big shock, and I don’t really remember much about what they said after that – all I could think was that it was my son’s birthday in five days and I wasn’t going to be home for that. I just couldn’t comprehend how a couple of hours earlier I was hanging the washing out and feeling fine and the next minute I was sitting in hospital being told I had blood cancer. Even now I still don’t think I’ve fully processed how that could have happened and how, because of COVID-19, I had to sit there and hear that news on my own.
So, I ended up on the ward for five weeks, which was an extremely long time when no visitors were allowed due to the lockdown. The staff on the ward were utterly amazing and I don’t know how I would have coped without them. They became like family to me during those long weeks when my own family and friends couldn’t be with me. They even organised a visit to the Maggie’s Centre in the hospital grounds for my son’s 7th birthday so that I could spend a couple of hours with him on his special day. He said it was his best birthday ever, and during the course of the next many weeks I spent in hospital he would often ask, ‘Can we go to that Maggie’s place so I can give you a hug again?’
Despite being physically separated from my friends and family, I rarely felt alone. I was constantly receiving texts, phone calls and having video chats with everyone. As a Christian, my faith in God also played a huge part in helping me through this time. I knew that so many people (even some that didn’t know me personally) were praying for me and thinking of me. This made a massive difference to how I was able to cope with the long periods of time I spent in hospital. I also knew that my family were being supported at home by so many amazing people who would drop off shopping, presents for the kids and meals three times a week on the doorstep.
Genetic testing had identified that I had ‘good’ genes, so I would ‘only’ need intensive chemotherapy and immunotherapy (Mylotarg), rather than a bone marrow transplant. I remember feeling incredibly guilty about this at many stages of my treatment, surrounded by other people who seemed to have a worse prognosis than me and being aware that in the end I would ‘probably’ be OK, especially as the bone marrow biopsy showed that I had gone into remission after induction chemo. I sometimes felt that maybe my leukaemia wasn’t that bad after all seeing as though I didn’t need a transplant, and maybe I was just being dramatic about the whole thing, but over time I have come to the conclusion that no-one’s experience is ‘nice’ – in fact, the whole thing is physically and emotionally traumatic regardless of your treatment.
Initially the chemotherapy didn’t seem too bad, but the side effects were the worst thing. You tell people that you’ve got a sore ulcerated mouth and imagine they are thinking back to the time they last had a mouth ulcer, but it’s hard to explain that oral mucositis is so much worse than that. I clearly recall telling the consultant one day that my mouth was so painful, and she suggested trying some oral morphine. I remember being horrified because as a nurse I know that’s a painkiller used for people who have severe pain and I actually said to her that I thought that might be a bit drastic for a sore mouth! She assured me that it certainly wasn’t, and even after taking it the pain didn’t ease that much. I also had problems with bleeding gums due to persistently low platelet levels which was awful, and I ended up having platelet transfusions at least every other day as well as regular blood transfusions.
Losing my hair wasn’t as bad as I thought it would be. It started coming out in big clumps about a week after I finished the first round of chemo. I felt so sorry for the poor cleaner who had to sweep around my bed every morning; it was worse than being in the hairdressers! On the day I was discharged after spending five weeks in hospital I asked one of the nurses to shave off my remaining hair before I went home. I had chosen a wig online, but because of lockdown restrictions there was no opportunity to go and have a wig fitted or cut to your own style. I couldn’t see that I was going to have any opportunity to go out and see people in the near future due to the COVID-19 pandemic, so in the end I decided not to bother with a wig and just wore headscarves instead. It took a while to get used to my new look and my children said I looked a bit like an alien!
I was so relieved to get home from hospital and sleep in my own bed, but COVID-19 restrictions meant that I couldn’t go anywhere or see anyone, and when I was neutropenic I had to isolate from the rest of the family which was really difficult. We couldn’t hug each other, I had to use a separate bathroom, sleep in a separate room and eat meals away from my husband and the children in case any of them passed anything on to me. People came round to say hello on the doorstep and everyone always said I looked really well, but there’s a lot you can hide behind a head scarf and a smile. No one saw me on my worst days, when walking from my hospital bed to the bathroom and back would wipe me out for the whole day, or the times when my gums wouldn’t stop bleeding for hours and I couldn’t eat and felt terrible.
I’ve heard that people with leukaemia find it difficult to explain their experience because it’s hard for others to understand what it is like. For me, this was made more difficult because of the COVID-19 restrictions, and even now there are people I haven’t seen since before my diagnosis. I used to joke that by the time I saw them my hair would have grown back and it would be like nothing had ever happened! However, it can be hard to accept that people’s lives have moved on when this has been such a major event in my life.
I was back in hospital a week later for the second round of chemo. This admission was straightforward, but even when I was discharged home, I was in outpatients every other day for blood and platelet transfusions, and then got an infection in my PICC line so was back in hospital for another week.
The third round of chemo was postponed several times as I was either still neutropenic or my platelets hadn’t recovered enough. After being sent home four times in two weeks, my platelets had finally recovered enough to stay in hospital for the third and final round of chemo. A week later, after completing the last course of chemo, I was back in hospital again with another infection.
This time I was admitted for almost three weeks. I had been able to remain positive and upbeat during the previous weeks of treatment, but I was starting to struggle by now. The effects of the intensive chemo were taking their toll and it was taking longer to recover each time. I spent my 42nd birthday in hospital alone, not being able to see my family or friends. I felt like I was never going to get back home or back to ‘normal’ life again – whatever that would mean in the midst of the pandemic.
After I was discharged, I had my end of treatment bone marrow biopsy which came back negative. The day I got those final results should have been a day of happiness and celebration but when the doctor told me that I was in complete remission I felt nothing. I couldn’t accept that after everything that had happened over the previous five months he was now saying I was fine and that was it. I really struggled emotionally for quite a while after that. I think the rollercoaster of my diagnosis and subsequent treatment, plus the additional complications that COVID-19 added into the mix, had finally hit me and it was as if in that moment my brain had suddenly caught up with what had happened to my body.
A friend described it perfectly when I told her how I had been feeling: she said it was as if you’d been away to war – everyone thinks you should be happy to be back alive but no-one really understands the trauma you’ve experienced while you’ve been there.
Soon after this I started counselling which has been really beneficial in helping me to make sense of my feelings around everything that has happened. Again, due to COVID-19, the initial sessions had to be telephone consultations which was hard, but eventually I have been able to have face-to-face sessions which have been invaluable. I would definitely recommend post-treatment counselling as it has really helped to speak to someone who understands the situations you have been through. I have also found virtual support groups really helpful in speaking to other leukaemia patients and having the opportunity to support each other whether you are in the same situation or further down the line in terms of treatment or recovery.
I returned to work in December 2020 which was a major step forward in my recovery. My first day back was a very emotional experience but it felt good to be doing something ‘normal’ again. Some of the patients who hadn’t seen me since my diagnosis just thought I’d had my hair cut!
This whole experience has really inspired me to work with people going through a diagnosis of leukaemia or other blood cancers, and in the future I hope to go and work at the cancer centre which saved my life. I think if I can use my own experience to help even one person with leukaemia to cope with their diagnosis, treatment or recovery, then it will bring something positive out of the last few months.
Spot Leukaemia raises awareness of the signs and symptoms of leukaemia. It is so difficult to identify because many of the symptoms could be caused by so many other less serious reasons, and in many cases such as my own, the symptoms come on so quickly that there is little warning. Even as a nurse, my diagnosis came completely out of the blue to me – I would never in a million years have expected to be told I had leukaemia.