Predicting prognosis for anyone is a tricky, almost impossible business. When I was diagnosed with a rare and aggressive form of sarcoma in August 2011 I rushed to the medical literature to look at the survival statistics and was devastated to discover the median survival time for patients with my condition was 14 months. That prognosis takes me to this month. However, I am still alive and very much kicking so everything is pointing towards me being around for a good few more months yet.
As a doctor working in Elderly Medicine we grapple with dying and death everyday frequently being asked by patient’s relatives how long they have to live, particularly in the very final stages of life. I always respond to this question with the phrase ‘I don’t have a crystal ball’ because no-one can accurately predict exactly what the future holds and sometimes when we fully expect a patient to die they recover and the reverse. We can try as doctors to give ballpark estimates based on our previous experiences but in reality we are just guessing and this is a dangerous business. If we give a shorter than expected prognosis then we run the risk of the patient and their family feeling short-changed and angry. If we give a longer than expected prognosis then we end up in the situation that I now face.
I have worked very hard over recent months to prepare myself and my family properly for my death. I have attended to all the practical aspects such as making a will and Advance Care Planning. I have decided where I want to be. I have made Chris a ‘memory box’ filled with letters, photos, birthday and Christmas cards and I’ve written letters to all my nearest and dearest telling them how much they mean to me. My funeral is planned to the tiniest detail. I have also talked openly with my loved ones about what is happening hoping that this dialogue will help everyone come to terms with it while I am still alive and help with the grieving process when I do die.
I am however now left in a difficult place psychologically. I fully expected to be pushing up the daisies by now and it really feels like I have hit a brick wall mentally. I was always very accepting of my situation and just got on with living my life but now there is an overwhelming feeling of living on borrowed time. I also feel somehow inexplicably guilty. I cannot rationalise this feeling but it has contributed to some very tearful and irrational moments over recent weeks. This is most unlike me as I am usually rather calm and placid. How do I overcome this and carry on with living my full and productive life? I guess I just have to climb over that imaginary wall where on the other side more life with more challenges awaits me. I am sure those people close to me will give me a step up with their love and support.
I am not the only one who is unwell in our family at present. My husband’s Grandma, who I am very close to, was also diagnosed with incurable cancer recently. After wiping away a tear when she found out her initial response was ‘well I’ll just carry on then for as long as I can’. She didn’t ask how long she had left and I have never formally asked my medical team this either. I know they cannot give me an accurate answer so I do not put them in that position. It is a very difficult situation as a doctor to be faced with a question that you cannot truly answer but has such important consequences for your patient. So I am about to outlive the median survival for my cancer but I have to remember that medians are just that, medians. Some people do better, some people do worse. I am extremely lucky to be doing better than expected and I will continue to embrace life to the full.
If you want to read more about my story my books ‘The Other Side’ and ‘The Bright Side’ can be ordered from my website www.theothersidestory.co.uk. All proceeds from sales of the books are being donated to the Yorkshire Cancer Centre. You can also follow on Facebook www.facebook.com/theothersidestory or on Twitter @GrangerKate.