Gillian Rackley

It took months for Gillian’s symptoms to be recognised as leukaemia, and they were even confused for another kind of cancer before the diagnosis of acute myeloid leukaemia came. Here, Gillian recounts her road to diagnosis.

I’m a teacher and I had a pretty grotty academic year (2016-17), picking up every cough or cold that was going around and not seeming to shake it very easily. I knew that I had some auto immune issues going on (this had been for a few years) and I put the problems of shaking off the viruses down to this, but during the Easter term everyone at school seemed to have this horrible flu/cough thing that was going on for weeks. By the Easter holidays I had had a cough for over a month.

I then started to get really bad chest pains overnight on the Easter Monday and went to my GP the following day. He thought I had strained my chest with all the coughing and just needed pain killers and rest. The same day I noticed a lump on my face which I thought was an incredibly bad spot (‘very odd’, I thought, as I don’t get spots, but thought it might be because I was so run down).

A few days later, with the chest pain not subsiding and coming in ever increasing waves and more spots appearing on my face, I went back to my GP. We both agreed the spots looked more like lumps and he suggested I contacted my rheumatology consultant. By the time I saw my consultant (a couple of weeks later in May) I had lumps all over my face and torso and the pains had spread to my back and neck. I was told it was probably a post-viral reaction and was put on steroids. These did not do a thing, so a month later (June), I was put on methotrexate. By this point the pain across my back and neck was so bad that I could not get up without someone helping me and me squealing in pain. None of the prescribed painkillers were making a dent on the pain. I was also experiencing night sweats and spikes in temperature.

My husband, Kevin, came with me to the next appointment in July as I felt by this point I was not being taken seriously. I was admitted to the hospital the same day and over the next couple of days had a barrage of tests. An MRI on my back showed up ‘tumours’ and I was diagnosed with metastatic bone cancer – i.e. I had cancer in my body somewhere, but they couldn’t find it and it had spread to my bones. Basically, it was terminal, and I was told this on day three of being in hospital without anyone I knew with me. Kevin was a three-hour car drive away on business; we really had not expected this as a diagnosis!

The next 24 hours was a barrage of more tests to locate this mysterious cancer which was alluding the rheumatologists. Nothing. Kevin and I asked why we had not been referred to Oncology and asked to see someone who was a cancer specialist. This was our first glimmer of hope as a clinical nurse specialist (CNS) and consultant came to see me and this was the first time anyone had mentioned the lumps and the probability that it was a blood cancer. It was also the first time that anything had been done for the extreme pain I was in. I had a bone biopsy and one on a lump.

Four days later, it was confirmed by a different consultant in Haematology that I had acute myeloid leukaemia (AML). Kevin and I looked at each other and both asked at the same time if it was curable. ‘That’s our aim’, was the response. We actually smiled at each other and said, ‘Let’s get on with it then!’. I think the consultant was a little surprised, but after the first terminal cancer diagnosis we had some real hope.

The next few days were a flurry of more medical intervention – a bone marrow biopsy (very unpleasant) was done immediately, a PICC line was put in (not as unpleasant as the biopsy!), constant blood tests, discussion of a medical trial (I joined up for AML19) and finally the chemotherapy started. I had all the side effects they had mentioned, but I responded to treatment, the back pain and lumps disappeared, and I was in remission. All told I was in the hospital for about five months. My bloods took a long time to make any kind of recovery after the second round of chemo, so I was in longer than expected, but in December I was told I was officially in remission and that the chance of the AML recurring was low.

I was very deconditioned after being in hospital for so long and had lost a lot of weight. I also had problems with the ligaments in my foot and a shoulder issue. It took about another five months after discharge to actually feel human again.

Unfortunately, my blood results have never properly recovered, and further cytogenetic testing has shown some mutations and I have now been diagnosed with myelodysplastic syndromes (MDS). I was told five days ago that this increases the risk of AML returning and/or constant problems with infection, so I will need a stem cell transplant. As I am very well in myself at the moment, this is planned for October/November time.

After such a long 15 months of feeling so ill, then misdiagnosis, then gruelling treatment but with very positive results, then so long to recover from the treatment but preparing to go back to work, this has come as a real blow. Psychologically I am struggling to pick myself up yet again, but I will and face this in the same positive way I’ve faced everything else.

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