It has been nearly six years since Simons initial stage 3 diagnosis, and for those years of twists and turns we have dreamt of outcomes to see us going on with life, we have dared to dream. In July 2019 stage 3 turned to stage 4 (meaning his cancer had spread to “other areas”, in Simons case mostly his lungs), this meant palliative chemo commenced, and no longer a curative option. In all of this hope flickered in us that this would give us time, now in November 2021 another big decision was made, to stop all treatment.
This decision was not taken lightly, in fact the conversations went backwards and forwards many times, and we knew that the next oncology appointment was a big one. A so the conversation was had, Simons CEA and climbed again, his side effects of chemo were getting worse, and the benefit gains very little. Many times we have read or heard about people taking the option to stop treatment and to opt for a quality of life compared to a length of life, I now have an upmost respect for anyone making that decision. The ultimately had to be Simons decision, this is his life, it was down to Dr S (Oncologist) and myself to help him navigate this decision.
One of our biggest worries was “what happens next”. We had visions on the Oncology team waving us goodbye and asking us to close the door on the way out, this scared us. Its a team that we have grown to respect and appreciate greatly, they have seen us through these years and we are not ready to leave their care yet, and so Dr S saying that we would for now stay under his care for now, and until such time as Simon needs the Palliative care or end of life teams. This was a game changer for us, and I cannot reiterate enough how important the relationship is between patient, carer and medical teams. We have been incredibly fortunate to have this with our hospital and GP teams.
For the first time in nearly six years we actually know what the future holds, we do not know when that future will hit, but we know whats coming. One of the things we are absolutely sure about is NOT asking for time scales, we never have and to be fair I think if we had asked that two years ago we would have blown that date out of the water. Its a very personal choice about asking am oncologist “how long do I have”, some people will want to know but we do not, its a bit like ringing the bell when you finish chemotherapy or radiotherapy, this is something we did not believe in and the cancer community is absolutely split on, but for many it brings comfort and a true meaning. One thing we have learnt through all of this s*$t is that how you deal with things is down to you, do not be swayed into acting a certain way, or being like others we are all different and you need to be happy with the information you have and how you deal with the situation. Trust me there are dark days in our house, days when we don’t want to open the curtains and face the world, but we do. There are times when we drive each other mad, but also know when the other one needs extra care and support. Its a juggling act of emotion.
So, what now………. we do not have a medium or long term and so it’s the here and now. Firstly, Christmas, it’s going to be celebrated this year, Simon has struggled the past two years with celebrating Christmas but this year we will have the house festooned in lights, we are having the families with us and we will celebrate being together. The other thing we are doing is getting into our van before Christmas and travelling, currently the trip looks like it will take in the North of England and Scotland, seeing friends and family, and we love Scotland and so we want to see some of our favourite places with hopefully some snow thrown in.
How we are doing
Since our appointment and decision last week for all treatment to be stopped the range of emotions have been pretty out there. Firstly, it was letting everyone know what was going on, we had pretty much kept this to ourselves (bar a few very close to us), we didn’t want other people emotions to sway any decision. So, saying to family and friends this decision had been made was a hard one. It has been emotional, but with this emotion it also feels like a weight has been lifted from us.
Simon has found a peace about him, he amazes me every single day, and every day I know why I love him.
Nighttimes are for me the worst, I am finding my anxiety hits me in those hours of darkness and I spend hours awake listening to Simon sleep and worrying abut him. Why are the hours of darkness so difficult, and why does your brain work so hard at night. I worry, I worry about Simon, how this is all going to unfold, worry about making sure he has the people around him he needs. One thing that we know is Simon wants to spend his last days at home, this is going to be and we will move heaven and earth to make sure he has the care he needs at home. This actually does not worry me, I want him to be at home forever. I worry about “the after”, being without Simon, coping with grief, coping on my own, no matter how people will say that they will be there to support me, they won’t be really there. My “worries” are following me like a mist and I am trying to shake them off, I do not want to waste time grieving and worrying when Simon is still here and we are able to make memories and have great days doing “stuff”.
So I need to get my big girl pants on……….
It’s time to make plans, pack the van and get on the road, get the Christmas tree up and live a little.
Onwards and upwards Mr C