Cancer and neoplasms
‘Raising awareness of blood cancer symptoms saves lives. It’s as simple as that’
Sep
Life with Leukaemia: A family’s story of navigating the emotional, physical and financial challenges of living with blood cancer, by Amy Atkinson
September is Blood Cancer Awareness Month. Blood Cancer is the fifth most common cancer in the UK and the third biggest killer. Let’s work together towards a future that is brighter for blood cancer fighters.
There are plenty of ways to get involved this month. Start your own fundraiser, educate yourself about the symptoms and sign up to donate blood or stem cells! You could also do Leukaemia Care’s sponsored Step Out challenge – 10,000 steps a day for the whole of September. See lc-step-out.justgiving-sites.com.
Why is it important to write, talk and raise awareness of blood cancer? When Joel was first diagnosed, I was 28 and Joel was 30. We had no experience of cancer to draw from, we had no knowledge of what type of cancer was raging through Joel’s body and we knew no one in our lives that was on this pathway. We were left struggling to understand and accept this diagnosis.
The only way I could normalise and prepare for what was to come was by reading other people’s diagnosis stories. I was scared to google blood cancer and I didn’t allow myself to click on the horror-inducing links. My eyes skipped over the unfavourable survival statistics and I went straight to blood cancer charity websites and Macmillan to get more truthful accounts of what we were facing.
Sharing stories has an untold power, it brings comfort and allows people to have factual knowledge of the emotional and physical challenges of a disease or illness. This has such value when you’re in the early days of a cancer journey.
Additionally, raising awareness of the symptoms saves lives. It is as simple as that. Cancer can be hard to diagnose, waiting lists for scans and tests are simply too long. If you can save time by keeping a diary of your symptoms, going to the GP and saying ‘I think I’m presenting signs of cancer’ and asking for a blood test, it might just save your life.
Blood cancer is a type of cancer that affects your blood cells. Blood cancers are caused by mutations/changes in your DNA causing your cells to behave abnormally. More than 40,000 people are diagnosed every year in the UK and over 250,000 are currently living with blood cancer. There are several types of blood cancer – leukaemia, lymphoma, myeloma, myelodysplastic syndromes and myeloproliferative neoplasms.
Does remission mean the cancer treatment stops, does it mean that you are ‘cured’? Some people never get that end-of-treatment ring-the-bell moment. Remission means the cancerous cells have gone and testing cannot detect any cancer in your body. It is cause for celebration, but sometimes doctors cannot be sure that the cancer has completely gone after treatment. They may be reluctant to use the word cure. They may suggest that you have some type of long-term treatment.
Joel’s chemotherapy will continue for another year, perhaps longer. Some people find it hard to cope with the ever-present uncertainty, the lack of finality of cancer treatment. This is why it is important to seek help with these struggles. Locally there is the Hummingbird Cancer Support Group and there is Maggie’s Cancer Support at Addenbrooke’s Hospital in Cambridge. Cancer charities such as Macmillan and Cancer Research provide tools to support the mental health of cancer patients and those caring for them.
Going through blood cancer treatment can feel like a blur, a rush, as everything happens so quickly and so much changes in a short space of time. You keep telling yourself that once we get through this bit, life will be how it used to be. Just push through this next treatment and then we can get normality back.
The truth of the matter for many people is that cancer changes them, you get a new outlook on life. For me, seeing Joel go through three stays in ICU and being on a ventilator in Critical Care in the space of a few months, I know I will never be the same. I have a new outlook on life, I understand how precious and fragile it is. I have changed careers after my ex-employer fired me whilst I was at Joel’s bedside less than two weeks after his diagnosis. It opened my eyes to the lack of awareness of how to support cancer patients and their families. I decided I wanted to work in the charity sector rather than in the corporate world.
A lot of patients want to rush to get back to normal, but the truth is most end up creating a new normal. The mental and physical after-effects of cancer treatments mean adjustments must be made. You need to give yourself space and time to recover physically and mentally. Working hours may have to be reduced and easing yourself back into socialisation after the isolation of treatment can take time. Show yourself compassion, show yourself kindness.
What many people outside of the cancer community may not understand is that as well as the physical and emotional implications that come with cancers, there are financial ones too. It could be needing time off work for appointments or to recover from ongoing treatments, or increased heating bills and inflated food costs to maintain a healthy diet and environment for recovery.
The sheer loss of wages that life with cancer can cause needs to be addressed by the Government. There is a cost of having cancer, even when you are treated by the NHS. Make sure you are getting the financial support you deserve and need. There are benefit calculators that can tell you exactly what you need to apply for at www.entitledto.co.uk and www.turn2us.org.uk.
Lastly, here are some words I wish we had been told when we first heard the words “you have cancer”. To anyone battling this cruel illness, you are more than your cancer. Cancer is part of your life, but it doesn’t define you. Living alongside cancer is tough, but that doesn’t mean it has to be all your life is about. You can still be yourself, let your old self shine through the illness.
Sure, life has to change in certain ways. Benefit vs risk has to be weighed up a lot. There are many challenges and it’s not easy, but I promise you can still find ways to be happy. You can strive to not just simply exist but to actually LIVE with cancer.
