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Back in November 2017, I was diagnosed with acute myeloid leukaemia (AML). This came out of the blue and was a complete shock for me and my family. I was 35 and my life at that time was progressing nicely; happily married, two young girls, good job and a brilliant group of friends.
It all started in October 2017. I had been feeling tired for a few weeks and then suffered with headaches which progressively got worse over two weeks. They started off mild, mainly just in the morning on my left side. The headaches became constant, so I got an appointment at the doctors. At the same time, I started getting a pain in my bum, which felt like an abscess.
The GP stipulated that, even if the symptoms cleared, I needed to go back the following week.
I didn’t last the week before seeing the doctor again. The headaches went but the pain in my bottom got worse. I tried to see the GP but couldn’t get in, so went to a walk-in centre. They referred me to a department at A&E for a minor operation on what they thought was an abscess.
I arrived at A&E in the afternoon, was checked and asked to come back the following morning for the minor operation. It was at this point that they had taken some blood, which I believe was standard practice within A&E. I left at 7:00pm.
However, they identified there was a problem with my blood. When the A&E doctor phoned to first tell me about the blood results, he didn’t know about the planned operation the next morning. At first, he asked me to come back in the morning, but was adamant that the operation couldn’t go ahead and that there were specific instructions I needed to follow and inform the surgical team before anything happened. He phoned back after 10 minutes, having spoken to the haematology doctor, stating that due to the infection he wanted me to return immediately, which is what I ended up doing.
The operation never took place. No one has ever confirmed if there was ever an abscess there or not. Before going to the walk-in centre, I went to the toilet and was in a lot of pain, and having finished there was a lot of blood down the toilet. When I was at the Christie Hospital, through various scans it was confirmed there was a lesion or tear. It was explained to me that there could have been an infection developing that, if I had had healthy white blood cells, would have been an abscess, but it hadn’t developed into this and whatever it was had burst, hence the blood.
Equally, I suppose it wouldn’t have developed at all if my immune system had been functioning properly.
10 hours later, my leukaemia was diagnosed – this was at 11am on 9th November 2017, and by 1pm I was in the Christie Hospital, and what an amazing hospital it is.
At the point of being diagnosed, they told me my blood was full of blast cells, which they explained as underdeveloped neutrophils and that they were 10 times higher than what should be normal.
What was interesting was that when I was asked about other symptoms, I had suffered with itchy skin and sweating but, including the tiredness, they were not things that I would have seen a GP about as they had only lasted for a week or two and were over a month previous to my diagnosis.
My other symptoms included:
- Weight loss – In the two weeks that I had suffered with the headaches, I lost about half a stone. The A&E doctor was concerned by this, but I had put it down to not eating as much due to the headaches.
- Itchy Skin – Two months before diagnosis, I had suffered with really itchy skin, but it only lasted for one week and then went. I only had it at night after I had had a shower, but it would drive me mad. I didn’t go to the doctors as I thought it was just a skin irritation and it went away.
- Tiredness – Two months previous again, I could just fall asleep at any time, I would sometimes feel like I could fall asleep at the wheel of the car going to work in the morning. Again, I didn’t go to the doctors as I thought it was just because I had a busy life with work and a young family and needed to go to bed earlier.
- Sweating – Over the two months prior to getting diagnosed, I would be dripping with sweat. It came and went, and I put it down to being unfit.
- Sensitive scalp – I could touch only my hair and my scalp would tingle.
It took a long time to take in the news and all the information about my leukaemia, what the treatment involved and the associated risks. The hardest thing was that once treatment started, I would be confined to my room for five weeks. Due to the age of my girls, who were three and one at the time, I wasn’t allowed any physical contact because of the risk of infection! It was heart-breaking. Those five weeks were the hardest five weeks of my life and I missed so much, like Georgia taking her first steps and Francesca’s first nativity play. I had 10 days at home before Christmas so I could spend Christmas with my family before being admitted again on 27th December for 10 days.
After my second round of treatment, I was told that I had a marker within my leukaemia which they called NPM1. This meant that the test that they did to check my remission was much deeper and gave a better result.
I have now had a further two (four in total) rounds of chemotherapy which have all required being admitted to the Christie for 6-10 days at a time, but I am pleased to say that my treatment finished in April 2018 and I am in remission.
During my treatment, I elected to enter into two clinical trials. The main reason for this was to provide more information and results to the cancer research team so that treatments can be improved, and this cancer can be eliminated in the future.
Everyone at the Christie have been amazing! We are so lucky to have these facilities within the North West; they have saved my life. AML has been in the media recently due to some tragic cases where unfortunately people haven’t survived, but I want to get a positive message out there that it is treatable, and a lot of research is being carried out to try and eradicate this disease.
We arranged a charity dinner for the hospital which was held on the 9th November 2018 at The Lowry Hotel, Manchester. This was partly a celebration, but more importantly it was about raising as much money and publicity as possible for the Christie Hospital and, more specifically, blood cancer. We raised over £40,000 from the night and this has now been donated to the hospital.
I am still in remission, and as part of the clinical trials I have a bone marrow biopsy every three months for a total of two years after the end of my treatment. The NPM1 marker is still showing completely negative.
I am back in work full time and regularly attend the gym, and life feels like it is back to normal. Although I had dark days at the start, I treated this like a process always aiming for the next stage. Treatment, recovery, bone marrow test and result, and repeat. This is just how I coped with it mentally.