How long have I got doctor?

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.

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5 thoughts on “How long have I got doctor?

  1. Kate,
    What super piece of writing. If only some journalists Were to spend some serious time and trouble researching reality not basing headlines on the basis of having watched ER or Casualty, then perhaps we would have had this ridiculous det of articles in the first place.
    Good luck for the future.
    Martin Alder

  2. I purchased the two books from amazon and couldn’t stop reading them I got them yesterday and finished them today,what a wonderful ,realistic read it was ,I just had to look further to see if there were any more writings and found this blog,do continue keeping us updated.from Theresa .

  3. Hello Doctor Kate, I am full of admiration for you and perhaps share a little understanding. In my case I was diagnosed with malignant melanoma in June then our lovely son Mike came back to live with his parents and we found he had advanced bowel cancer at 31 years old. He came to live with us in July, his grandma,( my mother-in-law) also arrived to live next door in July. She is 90 and now is in hospital with heart problems – a “feisty old lady” the nurses say.
    I don’t want to take up too much of your time but was a nursing sister teaching the LCP to everyone from consultants to cleaners – anyone who would listen. I wish you all the best and hope that my situation perhaps gives you a little smile – what else can you do?? I feel we are a strong little unit and this blizzard of a year has reminded us of how little money and stuff matters but how much love and kindness do.

    • a doctor cannot tell you how long you have to live its an inexact thing also its not the media to blame the truth comes from ie professor patrick pullicino, professor peter millard. emeritus prof of geriatics at the london university and dr peter hargreaves palliative care consultant at st lukes cancer center in guildford surrey they say we are moving into a situation of economical factors to save money not discussing how we care for patients just how we pay to keep them alive the government is rolling out palliative care which is helping patients to die not live, and involves putting them into an induced coma of no return and is involantary euthanasia

  4. I’m now in my 30th year of cancer. It first manifested itself in 1985 and finally diagnosed in 1986. It was colorectal cancer and I had a radium needle implant to the back passage, but had to have a colostomy in 1987 when the cancer recurred. In 1989 it was discovered I had carcinoma in situ of the cervix and in1990 the original tumour metastasised to the bone and my pelvis fractured. There followed conventional radiotherapy, surgery (when vaginal cancer was also discovered) and chemo that finished in the summer of 1991. After that treatment my consultant called my partner and me into his room and said, ‘we have done everything we can, but I know you and how you coped when you were first diagnosed, so it’s up to you now!’ I knew exactly what was implied, but he threw down the gauntlet and I accepted the challenge. I am eternally grateful that he didn’t give me a time limit.

    I didn’t have time to concentrate on my secondaries as I was in my final year of a degree at the time. The staff at Christie Hospital even let me use the Interview Room in which to write up notes for my dissertation.

    Try to be positive and treat the wretched cancer with disdain. As a doctor you will know all about the holistic approach. I wish you well.

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