The day when scan results are due are the absolute worst, and this one was up there with them. The six week break in chemo had done Simon good, it was a good recovery time and enabled him to feel relatively normal (whatever that is), but the lead up to his appointment has been incredibly tough. We resorted to going through scenarios, Simons glass half empty and mine half full way of coping gave us a wealth of “what ifs”, we knew that one of us would be right…….. in fact we both were right and wrong.
So yesterday we busied ourselves in the morning, went out for lunch and then made our way to Oncology. We get called, the usual weigh-in and we get shown into the consultation room. Let me put this room into perspective, small, hot and no windows. It consisted of a couch (examination variety) and two chairs at either end of the couch, so we were not sat together. With us two, Dr S and the Cancer Nurse specialist the room appeared very full!
My list of questions and notebook on my lap and we were ready. It started with the usual niceties and then ………
The P word
So initially we were told that the six areas of known cancer were the same size but still showed they are “active”, however there was a seventh which was a lymph node in his neck. We questioned what next and what were our options. Due to the location of the lung and abdominal lesions surgery is not an option, neither is ablation, radiotherapy and anything else we thought of.
We asked a question and got the answer, Simons treatment is not curative but has moved into the palliative stage. Just that word made my world stop. Simon and I had discussed this could be the case prior to the appointment, and so whilst it was not a surprise it was a moment in this nightmare that will stay with me forever.
So here is the plan, Simon returns to chemo on a few days, this will be the same regime, this will be until the cancer works a way around it, there are a couple of other drugs that can be used, and these will be discussed at some point in the future.
We learnt new things, from Simons initial surgery he was in the high risk range of patients, this increased with the first recurrence and increased more with the second, this information now drives the decisions made going forward. I am not sure why this was only told to us now, but made a lot of things clearer.
We were given the opportunity to discuss timescales and decided against it. Neither of us wanted to start that clock running as we know it would rule our lives.
Suddenly the game has changed. The world seems a different place today and our conversations have been different, final, sad and with a heavy heart.
The waves of emotion are those that have overwhelmed me, I am heartbroken. I am allowing myself a few days to collect myself and gain control of these feelings l.
We have practical things to deal with and a list of things we want to do together. It’s a list but not a bucket list. We know this blog will now alter as we deal with the future twists and turns of this disease and we will both be writing updates and our usual ramblings. We have the supportive arms of our family and friends around us, we will need them in the coming months.
Onwards and upwards Mr C.