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It was July 2010. I didn’t feel well but that was not unusual. I had always been sickly but for some reason, medical professionals did not seem to take me seriously. I knew something was wrong when I started having to crawl up the stairs to get to my second floor flat and it seemed to take longer each time. I even had to lie down on the stairs, a couple of times each flight on some occasions. As well as this, the night sweats I was having turned to acute fevers. But when I mentioned it to anyone they seemed to confuse my symptoms with the menopause.
I tried to secure two medical examinations with a view to seeing a GP, but neither attempt was successful. On one occasion, I sat on the floor of the GP’s surgery and called an ambulance. I was taken to hospital, given antibiotics and sent home. Two days later, I collapsed whilst shopping.
After I collapsed, I was back in hospital and given blood tests and x-rays. I thought I was going to be given antibiotics and sent home, the same as last time. However, a nurse came and told me I had no immune system so I was wheeled into an isolation room and told I couldn’t leave. I didn’t understand. I thought I was having a nightmare and that I was going to wake up at any moment. A relative rang to check how I was and was told I was not expected to survive the next 24-hours. I’d got sepsis.
However I did survive and, after one week I had improved and was told I would need a bone marrow biopsy. The next day there was a phone call from the hospital asking to go back in to see them. When I went back, I was told I had acute myeloid leukaemia (AML). At first I was just glad to know what was wrong with me as years of ill health had really got me down. However, further tests revealed I had myelodysplasia (MDS) a rare blood disorder usually found in men over the age of 65. The MDS had progressed to AML.
There was so much to take in and even though I didn’tknow it then, I was about to meet three very special people who would brighten the darkest of days.
Still in shock, I was referred to another hospital where I was given blood and magnesium. It was there I met Hayley. She was having treatment for relapsed acute lymphoblastic leukaemia (ALL). She was depressed with her curtains pulled around her bed. We chatted for ages and exchanged email addresses so we could keep in touch.
One day, I was speaking to some friends who put me in touch with Michelle who had had AML four and a half years earlier. They thought it would be good for me to chat to her about what I was going through. However, Michelle didn’t want to talk about her illness initially as it had been an ordeal for her, but her husband came and spoke to me, which was a real comfort. Michelle eventually opened up and we became great friends.
Still in shock and disbelief I was eventually admitted by my GP in Sussex as an emergency case to the local hospital where I used to live. From there I was sent to the District and General Hospital in Eastbourne where my chemo began. Within a few weeks Michelle had relapsed so we ended up being treated together.
We formed a strong friendship and I don’t know what I would have done without her. A rare disease is a lonely island and it felt like only we really knew what we were going through. We’d talk endlessly, share experiences and relate to each other’s problems. We both went on to have bone marrow transplants at King’s College Hospital in London. On my return home I went to the Pinehurst Centre who runs the Friends Thru Cancer support group. It was through this group that I met Sarah, who had been diagnosed with chronic myeloid leukaemia (CML). We were introduced and really hit it off. I felt that the three friends I had met following my diagnosis were a real positive in the midst of everything we were going through.
The four of us had a connection, a bond, something that united us. We also all loved singing so we decided to form an all-girl group and record a song. We called ourselves ‘The United Blood Sisters’ as we felt that this summed up what we were about. The single is called ‘New Hope’ as we wanted to be positive and give hope to those who receive any similar diagnoses.
Sadly, Michelle died in October 2013. She had visited me before she went back into hospital and she looked different. She was paler than normal and her weight loss was clearly evident. She didn’t want any more treatment and she didn’t want to go back into hospital. When she left I walked her half way home and she hugged me so tight, a sort of ‘I won’t see you again’ hug combined with ‘don’t give up’. I knew it was a last hug, and it probably drained her. We turned and went our separate ways, the tears falling from my cheeks and most likely, hers too. I will always remember Michelle for her sensible motherly ways. Though younger than me, she had a calming effect and I miss her deeply.
Throughout all of this, Leukaemia CARE has been wonderful. I don’t remember how I found them but I do remember phoning the 24-hour Care Line in the middle of the night, not knowing how to cope. A nice man answered the first time who had hairy cell leukaemia. When I went to King’s College Hospital for my transplant, LC sent a very nice lady who came to visit me in the hospital and kept in touch on the phone regularly. It is pretty harrowing being in isolation in a strange town for weeks, but the support from this lady was just the tonic and I can’t thank LC enough for sending her.
I’m so pleased to still be here and I’m looking forward to hopefully meeting my donor this year. The rest of us are doing well. Of course ‘doing well’ does not mean ‘normal’ but we are alive and take each day as it comes.