Have you ever stopped and thought about what it is truly like to be the patient?
As a third year Elderly Medicine Registrar I’m not sure I had but in August last year I was thrown onto the other side. I was on holiday in California with my husband and developed what we initially thought was renal colic. Unfortunately it was not that straightforward and I ended up in an American hospital with an obstructive uropathy secondary to a pelvis full of an unidentified tumour. The Americans were all ready to chop me up there and then, but just wanted to come home. So after a retrograde ureteric stenting procedure we flew home with a provisional diagnosis of ovarian carcinoma.
Seeing healthcare professionals as a medical patient is difficult at the best of times, especially when as the patient you feel you know far more than your doctor about your illness. This was the case for me; I have lots of experience of Oncology, Haematology and Palliative Care. However my GP has never been perturbed by this and always wants to exploit my expertise, but will also just ‘doctor’ me when I don’t want to do the thinking.
After numerous scans and biopsies a diagnosis of Desmoplastic Small Round Cell Tumour (DSRCT) was made. I had liver and bone metastases at presentation so I knew full well I was in a palliative situation.
I think some doctors forget the rule book when dealing with other members of their profession. I remember being told by the most junior member of the medical team that I had metastatic disease without having a friend or relative with me, with no clarification of what I already understood and none of the ward nurses were aware I had just received such devastating news. If were not as strong as I am mentally, that experience could have caused immense harm.
It really is the ‘little things’ you appreciate as a patient; someone holding your hand when you’re upset, someone sitting down next to you instead of standing over you, a friendly smile, an open body posture. These behaviours are small and easy but make the world of difference to patients when they are in such a vulnerable place.
After five months of hard-core palliative chemotherapy and seemingly every side effect under the sun I decided on New Year’s Eve that enough was enough and it was time to stop the torture. I have since returned to work part-time and am playing hard completing my ‘Bucket List’. I am very matter of fact about dying, I cannot change what has happened to me, but I can stay positive and cheerful, and live life to the absolute full for as long as possible.