(written during #bloodcancerawarenessmonth 2020)
Why is raising awareness of blood cancer symptoms so important that we need a whole month to talk about it?
For one very good reason…
My lack of awareness nearly cost me my life… my blood cancer needed immediate treatment, it was critical for my survival. That’s why raising awareness is so important… others haven’t been as lucky as meAnna Mamwell – survivor
I am lucky that my Leukaemia was caught just in time, literally, because another 48 hours and I would not be here now writing this. My diagnosis came by luck or chance rather than any knowledge of mine or that of the medical professionals that I’d seen running up to it. This just doesn’t sit well with me and whenever I think of this fact it makes me so uneasy because to me luck isn’t something you rely on to keep yourself alive. Would you place your life in the hands of luck? No? Me neither, yet I found myself doing exactly that without even knowing.
Back in April 2015…
- I didn’t know what the symptoms of blood cancer were
- I didn’t know how deadly it could be
- I didn’t know that my life was in danger because of my lack of awareness
- I didn’t know that I had 6 of the main symptoms of blood cancer
- I didn’t know that the decisions I was making running up to my diagnosis were life or death
- I certainly do now...
I had been feeling unwell for about two weeks, which started with an awful headache that I couldn’t get rid of. This then developed into flu-like symptoms but I also had a very painful neck, a rash and some bleeding which were worrying as they weren’t usual for flu. However, I still didn’t think there was anything seriously wrong with me so I didn’t visit my GP thinking that a few days rest and I would be well again, it usually was and I was never really ill. That was until I needed a sick note for work. (I had been to another GP about the rash and neck pain to rule out meningitis and after that consultation the doctor thought it could be a virus).
At my doctor’s surgery I had a consultation with their nurse for my work sick note… after giving me antibiotics to treat an infection even though she wasn’t sure that was what I had, as I was about to leave she suggested I have my bloods checked to “see if anything would show up”… (This decision undoubtedly saved my life because by the next day I had 95% bone marrow failure, 35% leukemic blasts in my blood stream and sepsis. Another 24-48 hours without treatment and I would not be here today.)
After the blood test, that night, my GP rang me and told me I needed to go to hospital immediately. He even suggested he’d call an ambulance due to the urgency. All the way to the hospital, which is 50 minutes away, I kept thinking “what can be wrong with my blood?” and leukaemia or cancer never once crossed my mind.
My medical notes state that I was admitted with “deranged bloods… query acute leukaemia” because I had Auer rods (cells specific of AML) in my blood stream, my white blood cell count was way above the normal range (another leukaemia sign) as was my red blood cell count and platelets. All of this meant that my body was close to organ failure, potential life threatening internal bleeding and when I reached hospital I was treated for sepsis. I know all of this sounds alarming but unfortunately it’s not uncommon for blood cancers because of their nature and hence why many are diagnosed through A&E because patients present with bleeding, shortness of breath, sepsis etc.
I was so unaware of leukaemia’s that when my consultant, with tears in her eyes, told me that I had one of the deadliest forms my first thought was ‘what even is that?’. It sounded completely alien to me, I knew nothing about it, at this point I didn’t even know it was a type of cancer. When the consultant had come into my room that morning I had expected to be told that I had some kind of infection, at no point in the lead up to this had cancer crossed my mind, I was totally blindsided.
Currently 84% of the public do not feel confident in naming any of the common blood cancer symptoms (Over half of Brits don’t know symptoms of blood cancer – article by Blood Cancer UK And 30% of patients are diagnosed via accident and emergency routes
Raising awareness is not just about the signs and symptoms;
- Low awareness means delays to diagnosis which in turn has a devastating impact patients lives because they’ve often spent months unwell leading up to it with no answers. This takes its toll on mental health
- People report feelings of anxiety and isolation due to lack of services specific to blood cancer Difficulty finding information and support because it’s not available in the right places
- Quality of life and treatment options can be severely impacted
- At the moment charities and individuals are doing the majority of awareness campaigning whereas other types have been part of NHS England’s and the Department of Health’s campaigns ‘Be Clear on Cancer’. This is partly due to lack of understanding by those who are responsible for these
- More awareness will help many aspects of the patient experience; reducing lack of understanding of their condition, the treatment and after effects of treatment amongst medical professionals and peers therefore reducing social and psychological issues, feelings of isolation and helplessness
- Currently the specific needs of blood cancer patients are not being met; blood cancer is different to that of solid tumour cancers and because of the lack of awareness about this amongst decision makers general cancer services are not always effective in meeting their needs.
Here are a couple of personal patient stories on why awareness will save lives;
“I feel very strongly that if my sister Laura had been diagnosed earlier, perhaps her outcome would have been different. Laura died when she was 30 years old. She really felt she was let down by her late diagnosis.” – Sarah Watch Sarah share her story
Speaking on ITV’s This Morning alongside the Oxford haematology consultant who treated his wife Gemma, Simon highlighted the urgent need for better awareness of blood cancer symptoms among GPs and the general public CLICK HERE for full story and clip https://bloodcancer.org.uk/news/simon-thomas-gives-first-tv-interview-following-wifes-death-from-leukaemia/
If GP’s undertake a blood test for people presenting with one or more blood cancer symptoms many more lives will be saved
Symptoms on their own may seem non specific but put them all together and it’s a lot more obvious… unfortunately mention only one or two in isolation then not as much, this is the problem.
If I’d been aware of blood cancer symptoms, I would have gone to my GP armed with this information, I would have been able to list them and ask for blood cancer to be considered (I did indeed have 6). This is something far too many blood cancer patients haven’t been able to do either and it has cost them their lives. It’s not because they didn’t go to their GP several times with health issues… ‘They had been to their GP with recurrent infections several times but as these were looked at in isolation and the patient themselves were unaware that some of the other things they were experiencing were symptoms so they didn’t mention them all blood cancer was not picked up at all or until it was far too late.’