Planning the end

Sorry for our absence on here and for not keeping everyone posted. We have over the past few months been doing stuff and kicking up our heels, but as I am writing this, it is Bank Holiday Monday, I am in our snug at home and Simon is sleeping fitfully in a hospital bed provided by the Hospice who are now delivering Simons care and I have decided to update you all. In fact I have written two unpublished blogs in the past few months but they never seemed right or worthy or publishing.

Let me rewind you slightly and tell you how we got here. As ever we have been making the most of every day, these have included several trips away in our beloved van, camping, day trips and a Norwegian Cruise, yes you heard me correctly, with fast but careful planning we got on a cruise ship in May at Southampton docks and cruised for a week in Norway.

We have had a ball!

Simons health had been holding up, a bit of fatigue and breathlessness, and this has given us the opportunity to live a bit and enjoy life, families etc. In fact our last trip was only 14 days ago, and now we are where we are, it seems unreal.

Simon was diagnosed with stage 3 cancer six and a half years ago. It moved to stage four four years ago, he has been on Palliative treatment for over three years. In the 2373 days since his diagnosis he has fought to live, taken every operation, every round of chemo (over 90) and fought this disease. I have never seen such courage, determination in someone to plough through this. And now I see someone who I simply adore who says he is ready, and that he has lived a great life, and in his words “we have knocked the arse out of the last few years”.

When we got back from our last trip we realised that Simon needed additional help, he was already on oxygen, which he was getting more dependant on, but this was not enough. So on our return we contacted our GP practice and within 24 hours we had the team from St Lukes hospice here to offer help and advice. Simon had been struggling with the stairs, it was taking us an hour to get him to bed in the evening, and so a bed downstairs was organised. When this arrived, I cried, this was THE bed….. I did not want to consider what was happening, but I shook myself off and we planned. We made the room look cosy, new bedding, tartan throws, and a campbed for me, we took the first night in our stride, treating this as an adventure, as well as knowing Simon would now got ever be going back upstairs. In the three nights we have been downstairs we have watched movies, chatted and readjusted to the new norm. When I go upstairs there is a strange feeling of emptiness up there, like he has already left that part of the house, is very weird.

Simons ability to move round the house has diminished quickly, four days ago we went to see the cottage his daughter Merryn is buying, it was a trip he was desperate to do, he could only see downstairs but he did it. His order of service has been written, (with the exclusion of a date), he is part way through writing his eulogy, he trusts no one else with this task as he says they are inevitably boring and read like a CV normally, I am hoping he finishes that today.

How much time do we have? I don’t know, we don’t ask, but the house has a peace within it, apart from the radio playing which is a firm instruction “I don’t want to die in a silent house with the sound of a ticking clock, I want noise music and life around me”, so the radio plays, the whoosh of an oxygen machine and fans whirring are the noise for today. I have waves of emotion and grief, but there is time for those and today they are being batted back.

You were my best hello and my hardest goodbye Mr C.