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I had been having episodes of night sweats for a few months, and my periods had also become erratic. About six months prior to my diagnosis, I saw my GP and had an ultrasound of my pelvis to exclude any gynaecological reasons for the absence of my periods. I was then told that I was peri-menopausal; sadly, no blood tests were taken at this point.
About two weeks before my diagnosis I began to feel really tired and getting breathless going up the stairs. I put my tiredness down to it being the run up to Christmas, attending various Christmas activities with the kids and trying to juggle a demanding job four days a week. Looking back at photographs taken over the Christmas period, I looked awful—I was pale and just looked ill.
Thinking I had a virus or chest infection, I attended the GP surgery on 2nd January 2018 and saw a lovely nurse practitioner who examined me, arranged for my bloods to be taken and issued a prescription for oral antibiotics for a chest infection.
I remember the day exactly when my GP contacted me on the phone. I had literally just taken my kids to the local trampoline park. That afternoon, I had a phone call from my GP telling me that my blood results were deranged, my white cell count was really high, and that I needed to attend hospital that instant and see the haematology team. The word ‘leukaemia’ was not mentioned but the urgency set alarm bells ringing, and I remember asking him whether it had to be tonight going into hospital. Fortunately, my friend agreed to look after the kids and take them back to her house. I immediately phoned my husband who said to go home, and he would meet me there in 15 minutes.
I attended the GP admission unit that evening and was seen by a consultant haematologist and basically told: “We think you have acute lymphoblastic leukaemia (ALL), but we need to do more tests to confirm the diagnosis.” It was also mentioned that it might be lymphoma as some of my lymph nodes were palpable.
My husband and I were obviously devastated at the news. All I kept thinking about was my two children and how they would cope without having a mum. How could I have missed the signs and symptoms in front of me? I thought: You’re a trained nurse, did it never occur to you that you could become unwell just like your patients?
Going into hospital was weird; I used to work there and still knew a few faces. I hoped that no one I knew would be looking after me. I felt scared and vulnerable—I didn’t have my nurse armour in place, I was just another patient in a bed, ‘a statistic’.
That night I was admitted to a ward and the following day had my first bone marrow biopsy, an experience that I have conveniently forgotten about. I was then transferred to the haematology ward and then waited for the barrage of tests to follow, such as a whole-body CT scan, various blood transfusions, IV antibiotics etc. My diagnosis remained elusive as my bone marrow biopsy showed that the red blood cells were too compacted, so this delayed a formal diagnosis. My enlarged lymph nodes also indicated a diagnosis of lymphoma, so I was treated with chemotherapy designed for this.
I was discharged home and then attended the day ward for blood and platelet transfusions. I then got a phone call from my consultant to ask me to come and see her that day, and you just know when you walk into the room, there is a cloud of negativity hanging over the doctor and the nurse specialist, the furtive looks that they give each other and then the news you have been dreading it: “It is ALL, and unfortunately we cannot treat it here,” so those relationships you have made with the staff need to be replicated somewhere else now.
My care was transferred to another local hospital and my treatment began. I was put on the UKALL14 regime, which I have to say I felt quite well during it, although there were a few setbacks with infection, neutropenia etc., but all to be expected. During my treatment, my Hickman line became infected and had to be removed, so I had to have a PICC line inserted for the rest of my treatment.
One of the worst memories from the treatment is when I had my IT chemo in my spine. Unfortunately, some of my spinal fluid leaked out, leaving me with the most horrendous headache; I felt like I had a hangover without any of the fun that goes with it. I drank my body weight in Coke and coffee as caffeine helped and counted the minutes in between each paracetamol infusion which magically made the pain disappear.
The phrase “this is a marathon not a sprint” was used so many times during my illness that I feel I could scream if anyone says it to me. My analogy is: “leukaemia is like climbing a mountain: you feel that you have reached the summit but then someone drags your guide-rope back and you find you are nearly back at base camp and have to do all the hard work again.”
At the end of my treatment, my consultant informed me that I was in remission but my MRD (minimal residual disease) test indicated a high probability that the disease may return and that I could relapse—not the words you want to hear.
So, the next step for me was to have a stem cell transplant—sounds simple, eh! Both my brothers and sister were tested to see who gave the best match and thankfully it was one of my siblings—my sister, who immediately got the ball rolling and subjected herself to various tests and investigations and injections to boost her stem cells.
I was given a date to be admitted for the stem cell unit and the date for the stem cell donation from my sister was arranged. I was given yet more chemotherapy which made what hair I had fall out all over again (didn’t like it anyway as it was dry and frizzy!).
The actual stem cell transplant was a bit of an anti-climax—it just looked like a bag of platelets. Day zero had begun (they call it day zero so that they can monitor the development of your new immune system).
They weren’t kidding when they said that the transplant would make you very unwell. Post-transplant I had various infections. The worst one I can remember was six weeks after the transplant, which necessitated an admission to intensive care following an infected Hickman line which left me with life-threatening sepsis. I have never been so scared in my life. As a nurse you read all these stories about sepsis, and prior to my illness I was actually teaching about it to other members of the nursing staff within the Community Trust. I remember becoming obsessed with my hands and feet and kept getting my sister to check them to make sure that they weren’t becoming discoloured or black. I was so relieved when I got to ITU I cried; I knew I was safe in their hands. I spent three days there and then another two weeks in hospital to recover.
Following my ITU admission, my consultant decided that my immune system needed a boost and I then had to have IV immunoglobulins monthly. Also, my new immune system needed a top-up, so I had a further concentrated dose of my sister’s stem cells as my chimerism score had dropped to 3% (needs to be 100% to constitute a successful transplant).
Following this top-up, I encountered problems with skin Graft-versus-Host-Disease (GvHD) all over my body. My joints ached, I couldn’t sleep, my mood was very low at this point and I kept thinking: why did I do this to myself? But then I looked at my children and had my answer: because I want to see them grow up. The staff in the transplant day unit kept me sane—they listened when I was down and they picked me up and kept me going. They supported me through my symptoms post-transplant and also when my mum passed away suddenly following a short illness.
I think losing my mum was far more stressful than coping with the leukaemia. Part of my support network was gone, and I still miss the daily phone calls from my mum to check if I was okay. My dad and father-in-law kindly took me for appointments as I didn’t have the concentration to drive over to Liverpool from the Wirral, which was twice weekly for blood tests, dressing change and outpatient appointments. Just attending these appointments would leave me drained, but thankfully I now only attend every four weeks for blood tests and once a month for venesection (just like donating a unit of blood, but it can’t be used to help others unfortunately!) as my ferritin levels were extremely high (6,000). After seven months it is now about 1,000 and I hope that I don’t have to have any more as my veins seem to disappear on the venesection days despite drinking loads!
Post-transplant I have three monthly monitoring which entails a PET scan, lumbar puncture, IT chemo and a bone marrow biopsy (made more bearable by the gas and air – makes you think you have had a couple of glasses of wine so you totally forget about the fact that someone is boring a hole in your hip!).
Each time I have a scan or biopsy I am nervous to hear the results. My last scan in December showed some activity in my lymph nodes in my lungs so I am now under the care of the respiratory team. I am slowly working my way through all the specialities in the hospital, with my various complaints since my transplant.
I reached my two-year anniversary in July this year. I was hoping to return to work in May, but the pandemic of COVID-19 meant that I needed to shield, so I have been unable to return to work until an alternative role can be found which does not necessitate face to face contact.
Having had leukaemia makes you think differently about life; I now live for the present, the moment. One of my dreams when I was in hospital was to get a dog (too much time watching Supervet!), which we now have and she helps with my recovery, my fitness, my mental health and regaining my stamina. Gabbi (the dog) has also brought us together as a family. We all love her and relish taking her out for walks and seeing what trouble she can get into – which is frequent!
It is a well-known fact that GPs may only ever see a few episodes of blood cancer in their professional careers. It is important to heighten awareness with healthcare professionals and the public so that they have the confidence to go to their GP and ask for the relevant investigations and not be fobbed off.