I’ve rode my fair share of emotional rollercoasters over the past 18 months or so since being diagnosed with terminal cancer. Before this I had led a fairly sheltered life other than the usual family arguments and someone close to me suffering with significant mental health problems. I used to see people who had self-harmed on the Medical Admissions Unit and wonder sometimes to myself what could be so bad that could lead to such self-destructive behaviour.
Since diagnosis though I’m pretty sure I have felt every emotion a human being is capable of from the lowest lows to the highest highs. I am prompted to write about this now as the past few weeks have been particularly tough. It all started after being coerced by my Oncologist to have a CT scan to investigate the worsening abdominal pain I had been suffering, in the full knowledge that given the fact I have had no treatment for an aggressive cancer for over 11 months that the likely outcome was going to be worsening disease. This would mean facing or refusing more chemotherapy.
I unusually took a friend with me to the appointment to get the results as I was so worked up about it all. They kept me stewing in the waiting room for ages just to heighten my emotional turmoil even further or so it felt and could be likened to the queuing process at a theme park. When I did eventually make it into the consultation room my Oncologist got straight to the point though. My cancer was stable on the scan. Psychologically this news felt like the drop on Oblivion at Alton Towers. A huge wave of relief was followed by an overwhelming sense of why? Why am I up every night pacing around in pain? Why despite hefty doses of opioids can I not get comfy? Why is it still stable? How I am supposed to know when it is getting worse then? When I am overwhelmed with thoughts I retreat into quiet contemplation. This vacuum was filled by DtM pontificating that my pain may be ‘medically unexplained’ and he started to give us a lecture on the concept of somatisation. I do not buy this. I fully accept this is a phenomenon which exists – the idea that psychological distress can manifest as physical symptoms – but my pain has caused my psychological distress, not the other way round.
That afternoon I was admitted semi-electively for a procedure to fix my ureteric stents. The operation is successful, uncomplicated and miraculously cures the pain I have been so distressed by over recent months. Perhaps instead of being ‘medically unexplained’ it had something to do with the two ruddy great pieces of metal that were sticking inside my ureters and now they had been removed my pain was gone. I leave hospital that night with the knowledge that my cancer is stable, that my symptoms are much better and that I can continue to live my life. Christmas, the imminent arrival of my new niece or nephew and my best friend’s wedding were not going to be marred by health stuff.
So you’d think I would have been over the moon. Not so. In fact I was on the verge of bursting into tears for a few days and remain a little on the emotionally labile side even now. I feel completely irrational about feeling this way. I should be happy. But in my mind everything was getting worse and there was a path to follow even though that path was not going to pleasant. Instead I am left hanging in limbo, a state I have existed in for months. It feels a little as though the rollercoaster has broken down with me left hanging upside down. How much longer is my reprieve going to be? I have well outlived the median survival time for my type of cancer now. This is brought home to me by three active members of the DSRCT forum dying in the past week, something I feel inexplicably guilty about.
My way to survive the rollercoaster of the past few weeks is to try and restore normality. Level headedness is usually such a prominent feature of my personality. Normality to me means returning to work after my surgery and spending time with the people I love. And try as hard as it is to think about the future. So I have set the wheels in motion with the Deanery to go back to work full-time and I have told my Oncologist I will not be coming for routine follow-up appointments anymore. I can do without spending my Monday mornings sat in a clinic waiting room for hours on end surrounded by other people with cancer. I have lots of plans for further fundraising and we of course have a ‘Bucket List’ to complete. Planning is already in progress for a ‘Staying Alive’ party in April….