Well hello everyone. Sarah here. I guess there are a lot of you out there waiting for a post as the number of hits has gone from 608 last night to 800 when I have just looked this morning. Now I am feeling under pressure to write something great. I am always aware that I do not have the flair and talent of him indoors with regard to writing although I do have many other talents (!).
What can I say about the last week? A desperately sad but profoundly moving experience. If I start from Emma and her letter. I was not here for the conversation she had with her dad, but I walked through the door as Dave was reading the letter on the screen and we both cried bucketloads. I felt as if my heart would burst with pride as well, as there cannot be many 14 year olds who can write such a loving letter and be brave enough to give their dad permission to die when he is their absolute best friend as well as their dad. The letter she wrote opened something up for both of us. We had both been struggling with telling her how bad we thought things were for fear of frightening her and a feeling of calm seemed to descend on the house after the conversation and her letter. Later that night Dave and I had a further conversation where I really fully gave him my permission to die, as to see him suffer as much as he is is so difficult to watch. We had had previous conversations along these lines where I had tentatively said it was okay, but because I love him so much and don't want to lose him it is incredibly hard to let go. Probably the hardest thing I have ever done as I will always want more time to be with him. Just like a great performer I think he will be leaving his public always wanting more.....
The next morning Dave asked me to stay at home with him as he was frightened to be left on his own with the breathing episodes. Later that day Caroline the Macmillan nurse came and we had a long conversation which was very emotional and extraordinarily powerful. Caroline asked Dave if he thought the panic attacks were related to a loss of control over his body and his illness. This led on to a further conversation where we realised that he had not given himself permission to die. There have been lots of comments like "you can beat it Dave" and "you're so positive if anyone can do it Dave you can" - all well intentioned but in Dave's world they had become a pressure that he was feeling that he had to live up to at a time when his body is really struggling with the burden of so much tumour. Caroline asked Dave whose opinions really mattered to him, to which he answered mine and Emma's. And Caroline then said "Well Sarah and Emma have given you permission to die". I think that it was in that moment that Dave gave himself permission to die. It was an extraordinary moment as his whole face shape changed in a moment. He appeared to relax and suddenley looked unbelievably tired. I think he had been fighting a wall of tiredness for so long that as he relaxed it hit him hard and he has been very tired ever since. We feel very lucky to have Caroline to support us and be with us as she has so much compassion for us as a family and can cry with us when it is appropriate. She is also very honest and said to me later in the conversation "Sarah I told you I would be honest with you and say when you needed to give up work and this is the time". This freed me up as I had been finding things increasingly difficult to manage at work, but was still going because Dave wanted me to in order to maintain the normality, but it was getting to be a situation where for me the cost was too great and the physical wrench I was feeling had been pulling me apart. I was finding it harder to leave him every day and would find my mind wandering from my desk and wondering how he was managing.
Since the conversation, Dave has so far had no further panic attacks so the conversation obviously shifted something. Caroline swung in to action and within 24 hours the house was fully equipped to nurse Dave at home and the usual fantastic friends helped to rearrange the furniture and take stuff away to be stored that we can no longer accommodate. Dave has relaxed further and is now allowing me to do everything for him which is a privilege.
Emma stayed off school Friday and Monday and we cosied up at the weekend with minimal visitors just to come to terms with everything that had shifted. There were a lot of tears and Sunday night was very sad as Emma asked Dave directly if he would be here for her birthday on the 8th April. He said " darling to be truthful I don't think I will" - within moments we were all in tears. She also asked if we would all ever go to Whitby again(another special place) to which we had to answer honestly again and say it was unlikely.
On Monday afternoon after the hospital we got out loads of old photo albums and looked through them all. I was really struck by how much we have lived life to the full. At the age of 14 Emma has already had lots of adventures with us - New Zealand, New York, Paris, Italy, Portugal, Spain, Singapore to name a few. And we have roamed the UK and seen so many beautiful places - Devon, Cornwall, Dorset, Scotland, Northumberland, Norfolk the Lake District and of course our special place the Yorkshire Dales. If our walking boots had pedometers I dread to think how many thousands of miles we have covered! I said to Dave yesterday that if we could do one last thing together my choice would be a long walk up a hill, probably one of our favourite walks ever which is in Swaledale (sadly not wheelchair accessible even if we could get there!). We have always been at our happiest miles from anywhere in beautiful countryside.
Yesterday we were at the hospital with Anne Garry. We had decided in advance that this would be our last appointment at the hospital as hospital visits are just too damned tiring and difficult when you are as poorly as Dave. Let alone the stress of the car parking! We had a very long chat with Anne who to my mind is one of the doctors all doctors should aspire to be. She is always very caring and attentive, observing Dave's general health, asking him lots of questions and actually listening (other doctors have often not listened to the answers we gave), explaining how drugs and treatments work in a way that we can understand, and she has endlessly supported us in dealing with a very difficult illness in the way that we have wanted. By that I mean keeping Dave mobile for as long as possible (something he has really wanted) and managing some very difficult pain in the best possible way. It was very sad when we said goodbye. It was also funny as I really wanted to give her a kiss and a hug but wasn't sure how she would take it,but in the end Anne stole the moment by kissing both of us as she said goodbye!
Part of Dave's lasting legacy is that Anne and Claire (her registrar)(by the way Claire if you are reading this you are also very gorgeous and have also been fantastic) are going to use the blog to train medical students. Anne also mentioned yesterday that she may also show it to the Cancer Care Centre Manager and other senior bods at the hospital as a way of showing the patient viewpoint and how patient care could be improved.
Leaving the Cancer Care Centre was very sad. We are so well known there from attending for the last two and a half years and have come to get to know the Reception staff, the nurses, the chemo nurses and, of course, the doctors very well. Yesterday may well be the last hospital visit as we are hoping that Dr Hall will come to the house to do the cassette change in future to avoid the trek to the hospital but that has yet to be confirmed.
So what else? Well we have had a lot of phone calls and quite a few visitors although visiting now needs to be restricted to around half an hour. Lots of help and support from Claire, Trish, Rob and Sue with many other offers of help from other friends. Just need to think of some things for all these other people to do!
The house is very calm and peaceful and has its own little aura of love. We are so far coping very well whilst being aware that things could change suddenly and we may need to call in some form of cavalry! Helen, one of our night carers, came in for the last two nights so I have had some much needed sleep. Quite honestly now I look back I cannot imagine how I have managed in the last few weeks since Dave was in hospital, getting up 3 or 4 times a night and working full-time!
For myself I feel calm and peaceful which I would not have thought possible. I am aware that this could change in an instant as the illness progresses. My one main fear at the moment is Dave deteriorating and becoming unconscious. At the moment I am helping him but we do things together and are still able to chat and laugh together, but I am dreading the day that that is no longer possible. It is at that point we may move to the hospice (if a bed is available). Yes, that's right, the hospice has a waiting list - only in the UK could you have to queue up to die!
With regard to the blog we may or may not post again. You can be sure that we will if we can so keep looking! There may come a point when things are just too damn private. Or the blog becomes just about the damned medical stuff. It was always our intention to share our lives in a moving and fun way via the blog and when it becomes about something else, in my view, it is time to stop!
And one other thing........are there any of you out there who have been reading the blog and thinking about donating but not got round to it? Or any of you who have donated but have another spare fiver or tenner hanging around? I think it would be really great if we could get to £3k by the end of the week. All you need to do is click on the button to the top left of the blog page or if the button doesn't work on your pc you can go to www.justgiving.com/davidfrench2 This may sound like blackmail but every donation gives Dave a little lift and we want to help pay for more angels like Caroline! The number of people getting cancer in the UK is increasing year on year and the resources definitely currently do not match the demand.
So bye for now and much love to you all. Hope to post soon......
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