Following the diagnosis on 18th September, we were bombarded with information from a lot of different people. Consultant, Lung Nurse, Pre-Assessment Nurse, District Nurse, Macmillan and others. To be honest our heads were spinning; we just couldn't take all the information in. This was the start of the "Smith and Jones chats", where we tried to make some kind of sense of it all, and it was here that we laid out to each other how we were going to try to deal with this.
Right from the start we were I think quite positive. This doesn't mean that we didn't have what I call "our moments" when there were tears and anger, but these were very short lived, and it was back to positivity. We sorted out a plan of sorts as to what we/I had to do and this plan included end of life arrangements. I was adamant that I wanted to go into a hospice, while my darling Tina wanted me at home. My reasoning was simple; I knew Tina would not leave my side 24/7 when the time came, and I believe that she will need a break from the stress then, when she can "get away" from it for a short time. I think this is more likely to happen with me in a hospice than at home.
So, when the District Nurse asked me "John, where would you like to die?", I was not totally unprepared. My first answer, "Cuba", was apparently not an option on the NHS! So I told her a hospice, and was a bit surprised by her reaction; she said that the local hospice was only a very small unit, and chances were slim that I would be able to get in. We discussed options, and the only other one which Tina and I would be happy about was at home (the others were hospital or nursing home). Following this I pondered the matter and decided to contact the hospice. So I rang St. Johns Hospice at Clatterbridge and asked a very nice lady how I became a member. She advised me to ask my GP to refer me, so I did, my GP did, and I ended up sitting in the outpatients for an appointment with the Hospice Consultant. This you understand was to get my name known, and thus increase (hopefully) my chances of ending up there.
After discussion of symptom control, I was referred to the Hospice Day Centre, and Tina and I went for a visit there and then. I was then signed up to be a Thursday boy, and started to attend. I wasn't overly enamoured of this, but it was still a means to an end. So on 13th December I walked in prepared to dislike it, after all, it was going to be full of dying people wasn't it?
Well, who'd have thought it? What a wonderful place! In calm, restful surroundings which always seem to have laughter bubbling just below the surface, the staff and volunteers go about their business in a professional, caring, yet happy manner. Yes, it is full of basically dying people, but there is little or no chat between them about illness or symptoms. Word games, quizzes, craft therapy, chair exercise (from which I excuse myself!), relaxation therapy, aroma therapy, physio if needed and a host of other things keep us occupied. There are social workers, counsellors and a padre for anyone who requires them.
It is a place which is greater than the sum of its parts, and the staff are helped by literally hundreds of volunteers. It is also the place which helped me during my one real wobble. As I said in a previous blog, when I'd finished my treatment I was feeling adrift, with nothing to focus on. But I had the hospice every Thursday, and I know it helped me through this rough time. I am not going to single out any individuals here, but if you happen to see this blog, know that each and every one of you, staff and volunteers alike, are heroes.
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