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I was diagnosed on August 5th 2005 with acute myeloid leukaemia (AML). A date you don’t forget.
We went on holiday with two friends to Bulgaria on the 19th June. We arrived on the Sunday and on the Monday I woke up and I just felt extremely tired. I didn’t feel well, and I just put it down to the travelling. As the days went on it persisted and then I had a really bad chest; coughing and my gums were hurting. I just put it down to the flu. We stayed on holiday for a week and came back, to cut a long story short. At the time, I was working nights as a nursing assistant, so I was actually seeing leukaemia patients myself. How ironic.
Because I was working nights, I put the tiredness down to that. My gums were starting to bleed more and more, and I was finding it difficult to eat. I really just thought it was the job and the stress that comes along with it. Eventually, it was actually my husband who picked up on it. He said there’s something wrong with you sleeping all the time, you need to go and have a blood test (this being about five weeks after first presenting with symptoms).
I just put it down to work. People just keep on pushing through and don’t realise when there is something very wrong, especially when symptoms are so vague. That’s why I think it is good I write this for other people to learn from. Everyone has different symptoms, but they told me mine were a textbook example of leukaemia, but I had no idea.
I went up on a Wednesday to get my blood tested by a nurse and then went straight back to work and didn’t really think too much of it.
The next day, I had a phone call from a locum GP in my surgery. He said, “Hello Mrs Bernadette Davies, are you by yourself?” I thought this was strange and he proceeded to say he had some not very good news but wouldn’t say outright what it was. He said my blood had come back and my white blood cells were abnormally high. I was told to go to the university hospital on the Friday at about 9 o’clock with my husband, my daughter and my daughter-in-law.
They immediately started blood tests and I was seen by a specialist. I didn’t have any lumps or swollen lymph nodes under my arms, which they seemed to think was unusual. At about 12 o’clock I had a bone marrow biopsy and it wasn’t until early evening when a doctor finally called us in. They didn’t beat about the bush, which is the best way in my opinion. I was sat down and told they’d had my bloods and bone marrow back and they said, “You’ve got acute myeloid leukaemia (AML).” The first thing I thought was, what are my chances – she said, “Because you’ve been bleeding around six to seven weeks, at this moment I can only say you’ve got less than 30% chance of survival.” She said that in front of my family.
She continued, “You cant go home now, you need to have some blood transfusions then I will let you go back home, but you have to come back tomorrow morning for another two units and then come back on Sunday to stay.” I did appreciate this as it gave me time to come home and think about what was happening and to spend time with my family.
I had to tell my son over the phone about my diagnosis, as he was in the Royal Navy at the time. It was a big shock for him, and they wouldn’t let him come home which made it worse. He found it very difficult. I went in on the Tuesday and had more blood transfusions and then they started four weeks of very strong chemo. I’ve got very long auburn hair and I had it all shaved because I didn’t want the agony of it falling out. It was very difficult.
Four weeks in and it was chemo twice a day, once in the morning and once in the night. I was sick and all the usual things that come with it. Then I got to go home for four weeks to rest and then back for another four weeks. Same process and all the while I’m getting weaker and weaker.
I was supposed to have had three complete lots of chemotherapy, but my skin at that time was really sore and blistering and starting to peel. They knew then that I wouldn’t be able to go through another session of chemotherapy. My husband and I looked it up – you’re not supposed to, but you do – and the best option looked to be a bone marrow transplant (BMT). I said to my doctor that I’d rather have a bone marrow transplant than further chemotherapy and they agreed. I’m one of seven, so the process then was to get all my siblings in – and you would think with so many siblings that my chances of a match would be pretty high.
We had to wait two weeks to see if any of my siblings were a match, after which point, they said we’ve got a match with your sister in terms of blood group but no tissue match. By then, time was running out for me; it was too late to find another donor and so it had to be done. It was done on the 22nd January in 2005. They put all these bags up, just like having a blood transfusion, only a lot faster. They turned it on and then it just goes all in and it didn’t take any longer than about 45-50 minutes.
They were harvesting my sister’s cells first on a machine, but it wasn’t working quick enough, so she had to go to theatre herself the day before to collect them through her bone marrow. After that, she had 12 holes in her back, believe it or not, so she had to stay in hospital with me. In the morning, when they tested my blood, my blood count had gone up and hers had gone down, something we both found rather ironic. You are supposed to stay in there for four to six weeks or something, but I was out after three weeks. I am a very determined, strong person, and I’m not saying it’s easy, because it wasn’t. It was very difficult between being sick and bowel problems, eating through a feeding tube and struggling to keep anything down. It was very gruelling.
Things went on, I seemed to get better and I thought I’d get my life back really. However, it must have been a year after the bone marrow transplant when I was out in the supermarket with my husband and all of a sudden my eyes were really hurting and I thought I can’t stay in here, I’ve got to get out. This continued for weeks and I didn’t know what it was. Looking back, I should have said something to the GP but I didn’t until I’d had an ulcer in my eye and it was really sore and I was screaming in agony. I had a specialist look at my eye who realised it was graft versus host disease (GVHD). I took a completely different journey from that point forwards, in and out of hospital with infections in my eyes. My blood counts and platelets remained pretty good after the BMT and always were after that. It was decided then to send me off to South Leeds Hospital where I started donating my own blood and they started turning my blood into serum drops to go into my eyes. I did this for about two years, and they would send them back to me in a little bottle in dry ice all the way from Liverpool.
I bring you up to last year now. Last March I suffered a lot of chest infections because I’d been on a lot of immune suppressant drugs to calm down my GVHD. I wasn’t getting better after large doses of antibiotics. And then it was again my husband (he’s saved my life a couple of times actually), when I went to bed that night sweating and talking gibberish, who took me into hospital, and they hooked me onto monitors and found I had sepsis. I had to stay there for about two weeks and it was absolutely terrible; I didn’t know whether I was going to live or die. On each occasion I have thought my time is not up yet. And when it is up, I think I’ll know. I’ve had a couple of rough incidences along the way.
After recovering, I went back to my own hospital and was put on a maintenance dose of antibiotics. My oncologist worked together with him and decided I couldn’t go through another bout of that. I now have extracorporeal photochemotherapy (ECP) every two weeks in Bristol Royal Infirmary, which involves putting me on a machine and taking blood out and then exposing the white blood cells to UV light, in the hope to sort out the GVHD reaction and therefore get me off the immunosuppressant drugs. The doctor has been quite pleased with my progress and has put me down to once a month. What was 90g in morning and evening is now down to 70/80, which is a big improvement and is gradually getting better.
I also don’t go abroad much for obvious reasons. My husband normally books a holiday home and we can take our dogs with us. I’ve got to be careful going out because I can pick up infections. I think when I’m out with people who don’t know me, that’s when I’m at my happiest. When I go into Bristol Hospital for my ECP, I’m happy then because I’m meeting people who are in the same situation as me and understand exactly what I need. I don’t want pity or to be felt sorry for. There is still a stigma around cancer in general. People don’t know what to say to you. It’s not that they are trying to be nasty or anything, they are more scared than us. But ignoring us is probably the worst thing you can do. Friends become strangers and strangers become friends. I’m still the same person, but they don’t see me as that same person anymore. Instead, they see me as some fragile person, and I’m so very not that.
All this time that has passed, I’m lucky to be alive. I saw my daughter get married in 2015. She has now got a lovely baby and I’ve also got another little granddaughter from my son. I don’t really need anything else or anybody else, I’ve got my own family, my husband, my children and my grandchildren and they are the ones that support me totally. I am so happy and grateful to be alive today and see the things I thought I wouldn’t get a chance to see.