"Cancer does not conform to working hours and school holidays."

I have mucosal melanoma, diagnosed three years ago, which has since metastasized to my lungs and brain. I have undergone major and life changing surgery, three different immunotherapy treatments (including a stage I trial), stereotactic radio surgery and I am currently on palliative chemotherapy, which has been the only treatment that has stabilised the disease, although this may be short lived.

My story is about anxiety, how I feel and how a recent experience at the Gartnavel Hospital has caused me further concern. In early February 2018 (CT scan day) I explained to the radiographer that my Oncologist at The Beatson requested the scan and the results were required in time for my appointment with him the following week and that my next chemotherapy depended on it. The member of staff assured me that it “should” be reported by then, as it that it was “plenty of time”.

I should explain how I feel around scan times. For weeks before, I gradually become more anxious, I put plans on hold and find getting on with normal life difficult. Prior to results day, my sleep suffers and I wake worrying about what the scan results will mean. On results day, I feel extreme tension, I take diazepam before I leave to go to the Beatson. I find the waiting room at the Beatson badly designed, cramped and with little natural light. On a busy day at this clinic I have counted 35 people (patients and family members) waiting to see one consultant and have had to wait up to 10 minutes for a seat. The time delays for appointments generally run 1-3 hours late, I don’t blame the Oncologist or staff for these delays, indeed, I sympathise with them as it is an oversubscribed clinic.

Back to my story – I arrived at the clinic on results day (6 days later) and the clinic, unusually was not too busy and I was taken promptly. I felt extreme tension as I spoke to my Oncologist and I was left very disappointed that the scan results were unreported. The Oncologist thought the radiographers might be away on half-term holidays with their families. I am given the option of returning in two weeks for results and then a resumption of chemotherapy or to take the chemotherapy prior to results (my blood tests were normal), with my Oncologist calling me with the scan results whenever they were available. I decide to go for the latter option, as it is too much for me to have to do a repeat journey with the associated anxiety build-up.

When I get home, I call family and friends who are anxious to hear the scan outcome too. When my son gets back from work it is the first thing he asks me about, so I am not the only one feeling this awful tension and anxiety, it is shared and ongoing as I am still awaiting scan results. This scan was especially important. The previous scan appeared to show my tumours had not progressed and the chemotherapy (Temozolomide) is palliative with only a very small chance of improving things and then only for a short time.

I am trying to make the most of my remaining time but; not getting results causes more anxiety and disrupts any prospect of planning quality family time. All cancer sufferers deserve better and more resources and patient focused policies should be the norm.

Cancer does not conform to working hours and school holidays.