Hi, Sarah again. Just a quick update for you all. Not being able to sleep well at night means I am able to sit down with the laptop for a short while.
Yesterday was a very emotional and draining day for all of us. We were all very upset when the ambulance arrived to take Dave to the hospice. We all know in our hearts that it is probably the right decision and the best thing for all of us, but it was heart renching to see him go. Emma, in particular, took it very hard and I had to cuddle her for quite a while before I set off to the hospice leaving her in the care of Claire. Emma hates hospitals from her previous experiences with her Dad and although she understood that the hospice would be slightly different, she did not want to come and see the place until I had got Dave settled in and we had seen the doctors and got all the medical stuff out of the way. Highly sensible decision I would say!
The initial admission by the doctor and the nurse took ages and left me wondering whether it was an appropriate way to deal with people as poorly as Dave, as we had to provide a full medical history going right back to when Dave was first diagnosed wth cancer and full details of his current drug and other medication regime. This took from 11 o'clockish to nearly 2.00 p.m. The doctor and the nurse were absolutely lovely people and the conversation did help to build a relationship with them, but looking at the system as a novice and an outsider I did wonder why the majority of the information (especially the drug regime) could not have been transferred via notes or conversations between doctors. I wondered about this even more today when the doctor on duty for the next four days turned out to be the lovely Claire Ruddock (from the hospital), who, knowing us so intimately, could probably have admitted us in half the time had she been there or had we been allowed to come in on Thursday as we would have liked!
That aside we are very pleased with the hospice. Dave has a lovely room with a balcony looking out on to open fields and hedgerows. There are lots of birds, rabbits and squirrels to be watched and apparently in the early mornings deer and foxes can be seen in the field. The view is a lot more pleasant than the view from our dining room! Dave had little time to enjoy it yesterday as he felt terrible as he was awake from 7.00 a.m. to 2.00 p.m. when they finished admitting him and by last night he looked terrible when I called back for a very short time with Emma and my brother who was visiting from Shoreham. Our GP, who called in briefly said it would probably take Dave at least 24 hours to recover just from the transfer to the hospice.
I had a lot of mixed emotions about Dave going in to the hospice. As already said, we know it is probably the right decision, but it was hard to give up caring for him at home. Although it has been really hard work, I feel that I have done this job well and that he has been really really well cared for in a practical and emotional way. Giving the medical history in full to the doctor yesterday (I did it to save Dave's breath) almost overwhelmed me as I had a full realisation of what we have been through. The doctor seemed amazed that we had managed virtually independently for so long and I did feel a sense of relief at handing him over to the care of the hospice. As often happens this relief was immediately followed by guilt at "giving up". I also found it difficult during the day to see the staff doing things for Dave not quite the way he likes things due to unfamiliarity and had to force myself to relinquish care. In the afternoon, I made the decision to leave him in the care of the staff for the evening so they could get used to him, but when he looked so poorly (and tired and emotional) when I visited with my brother I found it very difficult to leave him. Emma, Steve and I went out for a quick bite to eat but when I got back I found it hard to settle. I tried to phone the hospice to check Dave was okay but could not get through so I went to bed very unsettled.
Today has been better as Dave had a relatively good night so is less tired. He is still getting used to the new regime which is a lot more regimented for obvious reasons and has less flexibility than being at home. Dave is happier without visitors and is getting more time with me and Emma as he wants. Emma is quite happy with the hospice and, as of today, we have a handy supply of Calippos and chocolate for her and her Dad on tap. The doctor and nurse had also listened well to Dave yesterday regarding his lack of appetite and the catering staff had very kindly made him a lemon meringue pie today! Today has been busy with a seemingly endless army of various "workers" through the room, sometimes interrupting some quite important conversations. We hope that this is just a settling in thing but if it is not we shall be placing the handy "do not disturb" sign on the door on a frequent basis! Although we are still settling in, I think the hospice will turn out to be a fantastic decision where Dave will be really well supported and looked after by the staff and where Emma and I will also be taken care of.
Still don't know whether we will blog again so we will continue to keep you in suspense...........
Thursday, 29 January 2009
Tuesday, 27 January 2009
And it's goodnight from him and it's goodnight from me....
Hi there. Sarah here. An inability to sleep is leading me to do the typical womanly thing and try to have the last word......
What a few days these have been. A whirlwind of people visiting which although it has been nice to see people has left us with virtually no time together as The Three Musketeers - our preferred state. Time has flown and our little house seems to have turned in to a medical ward and visitor waiting room rather than our home, which has not been easy for Emma although, as usual, she has not complained very much about people hijacking time with her dad. We realised enough was enough with that when she was either permanently slumped on the sofa or hiding in her room. I am at the stage where I feel exhausted from looking after Dave (even with the night support), this combined with tending to all the visitors and having to act as a bouncer for Dave when people outstay their welcome has not been easy. Even loud voices have become painful to him and constantly ringing phones have become extremely irritating to him.
The move to the hospice has been difficult in some ways as we would have preferred to move there at the end of this week or at the weekend. We had hoped to have Tuesday, Wednesday and Thursday together just the three of us after all the hubbub. Unfortunately hospice beds at the hospice in York (St Leonards) are currently very much at a premium. The hospice normally has 20 beds but due to building work to extend the hospice only 6 beds are currently open. We were offered a bed today thanks to Caroline's hard work, but were told that if we declined this one it would be uncertain when another one would become available. I did ask if they would hold the bed till Thursday, so we could have our quiet time at home but was told this was not possible. For a few hours this really upset me as to think that Dave will walk out of our house, never to return, first thing tomorrow morning I find heartbreaking and to have so little time to adjust to this idea was very difficult for all of us - we shed many tears together. We went for a walk by the river to clear our heads - the Two Bridges walk as we call it will always remind me of this time as we have had so many conversations about Dave's illness on this route over the last two and a half years. It started with Dave and I walking at quite a pace, slowed down as he had to slow down (at one point to such an extent that I wondered if he would complete the circuit without an ambulance, to Christmas Eve when he first needed the wheelchair to get round. Many people have accompanied us on the route at various times.
It was cold yesterday but we made it and chatted all the way which cleared our heads. I decided to readjust my interpretation of going to the hospice "too soon and being cheated of the time together" to the fact that we are lucky to have the bed as I'm sure there are currently many people waiting. As I calmed down I decided that it is better to go now whilst we can still cope at home, than to start to be unable to cope at home and then not be able to get a bed which would be very stressful and could mean a lot of panic ensuing. Going now whilst Dave is still conscious means that he can organise his room as he wants it and have time to settle and get to know the staff.
Once again I must mention Emma who in the conversation with Caroline in the morning was asked what her opinion was on the move to the hospice and said "It needs to be whatever is best for you Dad". Typical of her astounding generosity. She too, was very upset and hates the thought of him going but just wants the best for him. Her capacity to deal with this on a daily basis still astounds me, particularly in the last few weeks when Dave has deteriorated so quickly. Our current coping mechanism is based almost entirely on cuddles and hugs.
For myself now I think life will be a lot easier for us as a family at the hospice as Dave will get the peace and quiet to make his final preparations for death that he craves. He really does want quiet time and does not want to be surrounded by lots of people and I hope that people will understand this and give him the space he needs. As popular and well loved as he is, he sees the time at the hospice as time to be with Emma and I - real quality time for us as a family. I also hope for myself that I will be able to take less of a carer role with so many people to help and be able to go back a bit to being just simply his partner in life.
It is clear to me that Dave is ready to die. His body is struggling so much and he is simply too tired and exhausted to struggle on any more. He gets more and more weak every day and wants to go now. I believe that the hospice will give him the dignified end that such a brave and courageous man deserves. He really has given this disease his best shot and made such a difference to so many lives through the blog and also by just being himself. We are still receiving emails every day from people acknowledging what a difference he has made to their life just by talking and listening to them. He is one very special man. I am unbelievably sad that our life together is being cut so short. It had been my plan to be with him for at least another 30 years but clearly that is not to be, so at this stage I can only look back at a wonderful 27 years together and all the fantastic and fun memories that we have of life lived to the full. I think I am truly ready to let him go as I don't want him to suffer any more.
So will the blog end here? Not really sure. We always said we wanted to have it be a fun thing and an expression of all the love and laughter and amazing relationships that we have in our family and in our life, so if that life becomes all about the medical stuff and Dave's bodily functions in the immediate future it probably is time to call it quits and just be in peace together. We shall have to see.
In the meantime, much love to you all. Thanks for all the support. Sarahxx
What a few days these have been. A whirlwind of people visiting which although it has been nice to see people has left us with virtually no time together as The Three Musketeers - our preferred state. Time has flown and our little house seems to have turned in to a medical ward and visitor waiting room rather than our home, which has not been easy for Emma although, as usual, she has not complained very much about people hijacking time with her dad. We realised enough was enough with that when she was either permanently slumped on the sofa or hiding in her room. I am at the stage where I feel exhausted from looking after Dave (even with the night support), this combined with tending to all the visitors and having to act as a bouncer for Dave when people outstay their welcome has not been easy. Even loud voices have become painful to him and constantly ringing phones have become extremely irritating to him.
The move to the hospice has been difficult in some ways as we would have preferred to move there at the end of this week or at the weekend. We had hoped to have Tuesday, Wednesday and Thursday together just the three of us after all the hubbub. Unfortunately hospice beds at the hospice in York (St Leonards) are currently very much at a premium. The hospice normally has 20 beds but due to building work to extend the hospice only 6 beds are currently open. We were offered a bed today thanks to Caroline's hard work, but were told that if we declined this one it would be uncertain when another one would become available. I did ask if they would hold the bed till Thursday, so we could have our quiet time at home but was told this was not possible. For a few hours this really upset me as to think that Dave will walk out of our house, never to return, first thing tomorrow morning I find heartbreaking and to have so little time to adjust to this idea was very difficult for all of us - we shed many tears together. We went for a walk by the river to clear our heads - the Two Bridges walk as we call it will always remind me of this time as we have had so many conversations about Dave's illness on this route over the last two and a half years. It started with Dave and I walking at quite a pace, slowed down as he had to slow down (at one point to such an extent that I wondered if he would complete the circuit without an ambulance, to Christmas Eve when he first needed the wheelchair to get round. Many people have accompanied us on the route at various times.
It was cold yesterday but we made it and chatted all the way which cleared our heads. I decided to readjust my interpretation of going to the hospice "too soon and being cheated of the time together" to the fact that we are lucky to have the bed as I'm sure there are currently many people waiting. As I calmed down I decided that it is better to go now whilst we can still cope at home, than to start to be unable to cope at home and then not be able to get a bed which would be very stressful and could mean a lot of panic ensuing. Going now whilst Dave is still conscious means that he can organise his room as he wants it and have time to settle and get to know the staff.
Once again I must mention Emma who in the conversation with Caroline in the morning was asked what her opinion was on the move to the hospice and said "It needs to be whatever is best for you Dad". Typical of her astounding generosity. She too, was very upset and hates the thought of him going but just wants the best for him. Her capacity to deal with this on a daily basis still astounds me, particularly in the last few weeks when Dave has deteriorated so quickly. Our current coping mechanism is based almost entirely on cuddles and hugs.
For myself now I think life will be a lot easier for us as a family at the hospice as Dave will get the peace and quiet to make his final preparations for death that he craves. He really does want quiet time and does not want to be surrounded by lots of people and I hope that people will understand this and give him the space he needs. As popular and well loved as he is, he sees the time at the hospice as time to be with Emma and I - real quality time for us as a family. I also hope for myself that I will be able to take less of a carer role with so many people to help and be able to go back a bit to being just simply his partner in life.
It is clear to me that Dave is ready to die. His body is struggling so much and he is simply too tired and exhausted to struggle on any more. He gets more and more weak every day and wants to go now. I believe that the hospice will give him the dignified end that such a brave and courageous man deserves. He really has given this disease his best shot and made such a difference to so many lives through the blog and also by just being himself. We are still receiving emails every day from people acknowledging what a difference he has made to their life just by talking and listening to them. He is one very special man. I am unbelievably sad that our life together is being cut so short. It had been my plan to be with him for at least another 30 years but clearly that is not to be, so at this stage I can only look back at a wonderful 27 years together and all the fantastic and fun memories that we have of life lived to the full. I think I am truly ready to let him go as I don't want him to suffer any more.
So will the blog end here? Not really sure. We always said we wanted to have it be a fun thing and an expression of all the love and laughter and amazing relationships that we have in our family and in our life, so if that life becomes all about the medical stuff and Dave's bodily functions in the immediate future it probably is time to call it quits and just be in peace together. We shall have to see.
In the meantime, much love to you all. Thanks for all the support. Sarahxx
Transmission has been Restored
An unfortunate hiccup has left me unable to post even after my self imposed break! The internet connection failed at home, and took a little more genius than I possess to put it right. Now it is I can get back to blogging - for a while at least.
For the last few nights I have been enjoying the comfort of a hospital bed in my dining room, and the various adjustments I can make to it have let me have nights of relative comfort, if not entirely pain free. There's still the shortness of breath, which gets worse as the night progresses, but if I am a predominantly sitting position, even this is diminished to the point of mild irritation as opposed to serious disturbance or worry.
However, with the disruption this causes to both Sarah and Emma, the general upset caused by having me around in a very poorly state, added to the fact I am getting progressively worse in my need for oxygen and for pain relief, has lead to the decision for me to move into the hospice. This morning, Sarah, Emma and I sat down with Caroline, our MacMillan nurse, and we told her that, in our opinion, the time had come for me to move in. Having visited the place, I know I can expect peace and quiet, combined with a high level of personal care and attention whilst at the same time, Sarah and Emma will be allowed to live lives at home in relative normality - obviously missing me, and having to get used to life without me around. But, let's face it, that's going to have to be the way of their lives for the long term future; not the one we had all wanted, but the one nonetheless we all have to face.
So at this point, I do not know what further entries I shall make; being a philosopher and self appointed guru to the lay people of York, I'd love to prattle on about the various possibilities that exist for my future (from nothingness to everythingness, and a few stops in between), but in truth, to paraphrase Wittgenstein, whereof one cannot speak, thereof one should be silent.
But thanks to all of you who have taken us way over the £3k, to all of those of you who have sent your loving messages, and to all of you who have and will continue to be loving resource.
I may write again: I don't know for sure.
For the last few nights I have been enjoying the comfort of a hospital bed in my dining room, and the various adjustments I can make to it have let me have nights of relative comfort, if not entirely pain free. There's still the shortness of breath, which gets worse as the night progresses, but if I am a predominantly sitting position, even this is diminished to the point of mild irritation as opposed to serious disturbance or worry.
However, with the disruption this causes to both Sarah and Emma, the general upset caused by having me around in a very poorly state, added to the fact I am getting progressively worse in my need for oxygen and for pain relief, has lead to the decision for me to move into the hospice. This morning, Sarah, Emma and I sat down with Caroline, our MacMillan nurse, and we told her that, in our opinion, the time had come for me to move in. Having visited the place, I know I can expect peace and quiet, combined with a high level of personal care and attention whilst at the same time, Sarah and Emma will be allowed to live lives at home in relative normality - obviously missing me, and having to get used to life without me around. But, let's face it, that's going to have to be the way of their lives for the long term future; not the one we had all wanted, but the one nonetheless we all have to face.
So at this point, I do not know what further entries I shall make; being a philosopher and self appointed guru to the lay people of York, I'd love to prattle on about the various possibilities that exist for my future (from nothingness to everythingness, and a few stops in between), but in truth, to paraphrase Wittgenstein, whereof one cannot speak, thereof one should be silent.
But thanks to all of you who have taken us way over the £3k, to all of those of you who have sent your loving messages, and to all of you who have and will continue to be loving resource.
I may write again: I don't know for sure.
Friday, 23 January 2009
Hanging in there.....
A short post and a quick update from Sarah. We are currently still doing fine although I am very sad to report that we see little changes every day in terms of Dave's health and wellbeing deteriorating.
It has been a very busy week one way and another. We have had lots of visitors and people calling in to love and support us and have lots more people coming over the weekend. Visitors now need to be limited to half an hour max as Dave is finding himself very tired. It feels like a bit of a topsy turvy world where the time just flies by with visitors, phone calls, medical professionals visits. Two major achievements stand out this week. On Wednesday Rob, Trish, Claire and I took Dave for a walk by the river in the wheelchair and yesterday afternoon Dave and I actually incredibly managed a walk in to town with Dave in the wheelchair again but we ran a few errands and even managed a trip to Costa Coffee for a coffee and a caramel shortbread! It is really a case of seizing every moment, so if the sun comes out and it is not too cold and Dave is feeling reasonably okay we are off in a flash still trying to squeeze every last drop out of life.
This week we unwittingly gave some people a terrible fright as on Wednesday night, unbeknown to us our phones stopped working and quite a few people tried to call us apparently. On Thursday morning we realised the problem and fixed the phones but a lengthyish chat with Caroline and the trip to town meant that we were again not answering the telephone. Late that afternoon I spoke to Howard who by this time sitting down in Bicester was beside himself worrying and I had to reveal that whilst he had been worrying incessantly we had, in fact, been out enjoying ourselves in Costa Coffee and oblivious to his angst. Stuart, stuck in Berlin and even more worried had immediately booked a flight back to the UK for this weekend, rather than the visit he had planned for later next week!
In the midst of all this we have had a plumber in for a couple of days fixing our upstairs shower. He had an accident this morning where a large ceramic tile fell off the ceiling on to his head creating a 2cm gash on his head which bled profusely. I found myself torn between my two patients and thought I would have to rush him off to casualty but managed to stem the bloodflow in time thankfully. Aside from this most of the remaining time has been spent looking after Dave and still chasing the DSS to try to successfully claim benefits. We have now been waiting since the beginning of December for some money which is very frustrating and when your clock is ticking in the way that ours is, time spent in call centre queues is absolutely infuriating.
I am getting more night care support as of today. Night times are the toughest times particularly with Dave's shortness of breath. I have found going to bed upstairs and listening for Dave through the baby monitor impossible. I was becoming fixated by listening for his breathing and anxious that he would not be able to call me over the monitor if he was short of breath. So, on the nights when we have had no carers I have been sleeping downstairs on a mattress on the floor next to his bed. This is tough as it is distressing enough anyway, but when you add the earsplitting noise of the oxygen machine, the whirring of the hospital bed and the cat trying to sleep on my head it becomes very difficult. I have been up and down with Dave a lot during the night and then at 5am Hermione has been deciding it is time to get up and constantly pouncing on various parts of my anatomy or chewing my hair. So yesterday I asked Caroline for more support as it is my intention that I get enough sleep so that I can fully support Dave during the days and make the most of the time with him. Yesterday, we were offered night carers 7 nights a week but Dave and I are not ready just yet to relinquish what we see as all of our independence, so we have accepted care every other night as a compromise and a way of retaining a bit more of our private space.
So, in summary, we are still doing okay. Still lots of love and laughter in the house but with a fear in the background that everything could change in an instant.
One other thing to mention is that if you are calling us the phones may sometimes be switched off while Dave is asleep at night and during the day. We need to do this for him to get some rest. If you don't get through please try again or leave a message but do try not to worry too much or call someone else who will know the current situation. I'm not promising to return your call unless it is urgent as our clock is definitely ticking...
Dave does still like phone calls and will talk to you if he is well enough, otherwise you will need to make do with me! Dave has also been receiving lots of lovely emails acknowledging him as a person which have been great and very moving for both of us. My thought on those how lovely to be acknowledged while you are still here rather that just at your funeral as happens with most people. The cards various people have also sent have also been great.
Finally, we would like to say thank you to those of you who contributed to take the fundraising over the £3k mark - we made it by Thursday night which was fantastic. And for those of you who are still thinking about donating - for God's sake get on with it! And if you can think of anyone else who would like to read the blog, forward the address on. We are starting to hear stories of people distributing the address to people they work with to stop those everyday moans and complaints and also of people using the blog on training courses as a way of inspiring people.In addition to the doctors using the blog at the hospital, Caroline also asked yesterday if it could be used as a training tool for Macmillan staff. If you have any other ideas, please let us know!
It has been a very busy week one way and another. We have had lots of visitors and people calling in to love and support us and have lots more people coming over the weekend. Visitors now need to be limited to half an hour max as Dave is finding himself very tired. It feels like a bit of a topsy turvy world where the time just flies by with visitors, phone calls, medical professionals visits. Two major achievements stand out this week. On Wednesday Rob, Trish, Claire and I took Dave for a walk by the river in the wheelchair and yesterday afternoon Dave and I actually incredibly managed a walk in to town with Dave in the wheelchair again but we ran a few errands and even managed a trip to Costa Coffee for a coffee and a caramel shortbread! It is really a case of seizing every moment, so if the sun comes out and it is not too cold and Dave is feeling reasonably okay we are off in a flash still trying to squeeze every last drop out of life.
This week we unwittingly gave some people a terrible fright as on Wednesday night, unbeknown to us our phones stopped working and quite a few people tried to call us apparently. On Thursday morning we realised the problem and fixed the phones but a lengthyish chat with Caroline and the trip to town meant that we were again not answering the telephone. Late that afternoon I spoke to Howard who by this time sitting down in Bicester was beside himself worrying and I had to reveal that whilst he had been worrying incessantly we had, in fact, been out enjoying ourselves in Costa Coffee and oblivious to his angst. Stuart, stuck in Berlin and even more worried had immediately booked a flight back to the UK for this weekend, rather than the visit he had planned for later next week!
In the midst of all this we have had a plumber in for a couple of days fixing our upstairs shower. He had an accident this morning where a large ceramic tile fell off the ceiling on to his head creating a 2cm gash on his head which bled profusely. I found myself torn between my two patients and thought I would have to rush him off to casualty but managed to stem the bloodflow in time thankfully. Aside from this most of the remaining time has been spent looking after Dave and still chasing the DSS to try to successfully claim benefits. We have now been waiting since the beginning of December for some money which is very frustrating and when your clock is ticking in the way that ours is, time spent in call centre queues is absolutely infuriating.
I am getting more night care support as of today. Night times are the toughest times particularly with Dave's shortness of breath. I have found going to bed upstairs and listening for Dave through the baby monitor impossible. I was becoming fixated by listening for his breathing and anxious that he would not be able to call me over the monitor if he was short of breath. So, on the nights when we have had no carers I have been sleeping downstairs on a mattress on the floor next to his bed. This is tough as it is distressing enough anyway, but when you add the earsplitting noise of the oxygen machine, the whirring of the hospital bed and the cat trying to sleep on my head it becomes very difficult. I have been up and down with Dave a lot during the night and then at 5am Hermione has been deciding it is time to get up and constantly pouncing on various parts of my anatomy or chewing my hair. So yesterday I asked Caroline for more support as it is my intention that I get enough sleep so that I can fully support Dave during the days and make the most of the time with him. Yesterday, we were offered night carers 7 nights a week but Dave and I are not ready just yet to relinquish what we see as all of our independence, so we have accepted care every other night as a compromise and a way of retaining a bit more of our private space.
So, in summary, we are still doing okay. Still lots of love and laughter in the house but with a fear in the background that everything could change in an instant.
One other thing to mention is that if you are calling us the phones may sometimes be switched off while Dave is asleep at night and during the day. We need to do this for him to get some rest. If you don't get through please try again or leave a message but do try not to worry too much or call someone else who will know the current situation. I'm not promising to return your call unless it is urgent as our clock is definitely ticking...
Dave does still like phone calls and will talk to you if he is well enough, otherwise you will need to make do with me! Dave has also been receiving lots of lovely emails acknowledging him as a person which have been great and very moving for both of us. My thought on those how lovely to be acknowledged while you are still here rather that just at your funeral as happens with most people. The cards various people have also sent have also been great.
Finally, we would like to say thank you to those of you who contributed to take the fundraising over the £3k mark - we made it by Thursday night which was fantastic. And for those of you who are still thinking about donating - for God's sake get on with it! And if you can think of anyone else who would like to read the blog, forward the address on. We are starting to hear stories of people distributing the address to people they work with to stop those everyday moans and complaints and also of people using the blog on training courses as a way of inspiring people.In addition to the doctors using the blog at the hospital, Caroline also asked yesterday if it could be used as a training tool for Macmillan staff. If you have any other ideas, please let us know!
Wednesday, 21 January 2009
That was the week that was....
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......
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......
Monday, 19 January 2009
Probably
I am getting pretty spaced out by a combination of drugs (some very interesting experiences could be had on a little too much of what I am taking, I'm sure) and tiredness. For example, we weren't really certain I'd be able to make it to the hospital to get my cassette changed today because of the occasional need for oxygen and my ability to fall asleep in the blink of an eye - I find the trip to the bathroom is a tiring half marathon!
Sarah will fill you in on the details of the last few days, and I will be giving the writing a rest for a while as I am far too easily confused and befuddled to be certain I am writing English and making any sense at all. I have no doubt I shall soon become ored and frustrated with the silence, but for the next few days at least, I am going to have a break.
All I want to say of the last few days is they represent, in one small way, a miracle. On Saturday, after the bed had been brought in (fully functional bendy in the middle and tilt you on your head hospital bed) and the downstairs rearranged to accomodate it and myself permanently, we sat down to dinner together, Sarah, Emma and I. Emma asked what the expectation was for me, and I stalled with a counter question "Expectation of what?" and she made it clear she meant how long did I have. And now she knows what Sarah and I have been told by both the MacMillan nurse and the doctors in palliative care, I can tell you the answer I gave her: it's probably a fortnight or so.
Emma cried, and said "You'll miss my birthday." And all I could say was "Yes".
What was amazing was after the news was broken, we were soon talking about memories we shared and we were laughing together and family-group-hugging together. I truly am stunned by the unit called our family; I know more than ever before we are wrapped in a love that is invincible.
And if I don't actually get bored with remaining silent, there are only a few more things I would want to say. The first is what I have gained from the experience of
two and a half years of cancer; it is that I am loved in a way I could never have dreamed was possible, I am more resourceful and resillient than I thought possible, and life lived truly day by day becomes something more beautiful, vibrant and filled with miracles than a life lived from concerns for the future.
The second is what I'd like to tell my Grandchildren about their Grandfather; he gave more to the World than he took out.
And the third is what I would recommend as a philosophy of life to anyone foolish enough to ask me for it; in today's world, it may not be entirely true to say that love is all you need, but if you live life like it is all you need, then maybe even the shittier things work out in the end.
I'll speak to you soon, probably.
Sarah will fill you in on the details of the last few days, and I will be giving the writing a rest for a while as I am far too easily confused and befuddled to be certain I am writing English and making any sense at all. I have no doubt I shall soon become ored and frustrated with the silence, but for the next few days at least, I am going to have a break.
All I want to say of the last few days is they represent, in one small way, a miracle. On Saturday, after the bed had been brought in (fully functional bendy in the middle and tilt you on your head hospital bed) and the downstairs rearranged to accomodate it and myself permanently, we sat down to dinner together, Sarah, Emma and I. Emma asked what the expectation was for me, and I stalled with a counter question "Expectation of what?" and she made it clear she meant how long did I have. And now she knows what Sarah and I have been told by both the MacMillan nurse and the doctors in palliative care, I can tell you the answer I gave her: it's probably a fortnight or so.
Emma cried, and said "You'll miss my birthday." And all I could say was "Yes".
What was amazing was after the news was broken, we were soon talking about memories we shared and we were laughing together and family-group-hugging together. I truly am stunned by the unit called our family; I know more than ever before we are wrapped in a love that is invincible.
And if I don't actually get bored with remaining silent, there are only a few more things I would want to say. The first is what I have gained from the experience of
two and a half years of cancer; it is that I am loved in a way I could never have dreamed was possible, I am more resourceful and resillient than I thought possible, and life lived truly day by day becomes something more beautiful, vibrant and filled with miracles than a life lived from concerns for the future.
The second is what I'd like to tell my Grandchildren about their Grandfather; he gave more to the World than he took out.
And the third is what I would recommend as a philosophy of life to anyone foolish enough to ask me for it; in today's world, it may not be entirely true to say that love is all you need, but if you live life like it is all you need, then maybe even the shittier things work out in the end.
I'll speak to you soon, probably.
Saturday, 17 January 2009
Rearranging Furniture
It's been an eventful few days in the French household, such that now, as I write, the dining room now has a few extra accessories: a hospital bed groaning and creaking as the inflatable mattress keeps adjusting itself, a baby monitor for Sarah to listen to my breathing at night, and an oxygen cylinder with 20 metres of tubing to allow me to make a trip to the bathroom without having to remove the oxygen mask (it is anticipated I may come to need it all the time at some point), and, if I can'be bbothered to make it to the toilet, a flask designed to accomodate my nocturnal urinary production.
This all came about after a conversation with Caroline Allison, our MacMillan Nurse, on Thursday afternoon. I knew immediately after that conversation I would never have a panic attack again, which may be a strange thing to say (but backed up by evidence today). The conversation had been about me, and why I seemed to having these attacks, and we began from assuming it was not just based upon the fact I had experienced the severe shortages of breath. I had already decided, I would not let the panic get me, because what was the worst that could happen? Probably death, which was not such a bad thing. Caroline said, "It may also be david that this is the first time you have experienced any loss of control throughout your illness, and many people will have been telling you to fight it and keep on going."
That was certainly true. Many people, in an immense compliment to me have said "If anyone can beat it David, you can!" And while that is a great compliment, it can also become a burden, as I began to take on the responsibility for making sure all these people remained calm and reassured.
Caroline asked "If you look at these attacks of shortness of breath through that, what does it mean, do you think?" That was the kind of question I was taught to ask during my psychotherapist training. I said, "The fact I'm getting them, and some of them are based in panic, means I am letting down all those people. When in fact, the worst that could happen is my death, and that wouldn't be a terrible thing for me - Sarah and Emma might have a horrible time, but I would be at peace."
It was then, Sarah tells me, that she my face relax, and my body do the same thing as if some huge weight had been lifted from me. and I knew it had. I no longer had to fight to survive, I no longer have to prove myself as anything, and I have no qualms about dying as both Emma (in her amazing letter to me, and Sarah ( in her amazing way of being completely straight with people) had given me permission to go, and to not put myself through any more pain or undue trauma.
Last night I slept in the bed downstairs to ensure it is comfortable and all the equipment works. Fortunately, the bed makes so much whirring and hissing nomye, the cat decided to steer well clear of it and hence I did not at any time wake up with a cat on my head. I have been given some tablets to help with sleeping too, as well as calming my nerves should another panic occur, but given today I made the trip to the shop at the top of our road without carrying the portable oxygen, and not having taken a relaxant tablet beforehand, I honestly feel it is all a thing of the past.
Caroline's speedy actions also led to us getting the hospital bed and the miles of extra tubing for the oxygen. The former due to the probale fact i will eventually be unable to tackle the stairs due to immobility, and the latter because it is possible I will always need to be on oxygen as the lung tumour has greater impact.
It may seem strange, especially to some, that the content of our meeting was all about the negative potential impacts of the illness, and not the positive elements. But as I have said before, I believe the discussion to have given me the power to choose for my self either life or death. In that choice the only two people I really have to consider other than myself is Sarah and Emma, who my death will most profoundly effect. If I am basing my choices on anything other than my own power to choose, I am losing personal power in the matter and allowing considerations I really have no responsibility to interfere with the process.
This all came about after a conversation with Caroline Allison, our MacMillan Nurse, on Thursday afternoon. I knew immediately after that conversation I would never have a panic attack again, which may be a strange thing to say (but backed up by evidence today). The conversation had been about me, and why I seemed to having these attacks, and we began from assuming it was not just based upon the fact I had experienced the severe shortages of breath. I had already decided, I would not let the panic get me, because what was the worst that could happen? Probably death, which was not such a bad thing. Caroline said, "It may also be david that this is the first time you have experienced any loss of control throughout your illness, and many people will have been telling you to fight it and keep on going."
That was certainly true. Many people, in an immense compliment to me have said "If anyone can beat it David, you can!" And while that is a great compliment, it can also become a burden, as I began to take on the responsibility for making sure all these people remained calm and reassured.
Caroline asked "If you look at these attacks of shortness of breath through that, what does it mean, do you think?" That was the kind of question I was taught to ask during my psychotherapist training. I said, "The fact I'm getting them, and some of them are based in panic, means I am letting down all those people. When in fact, the worst that could happen is my death, and that wouldn't be a terrible thing for me - Sarah and Emma might have a horrible time, but I would be at peace."
It was then, Sarah tells me, that she my face relax, and my body do the same thing as if some huge weight had been lifted from me. and I knew it had. I no longer had to fight to survive, I no longer have to prove myself as anything, and I have no qualms about dying as both Emma (in her amazing letter to me, and Sarah ( in her amazing way of being completely straight with people) had given me permission to go, and to not put myself through any more pain or undue trauma.
Last night I slept in the bed downstairs to ensure it is comfortable and all the equipment works. Fortunately, the bed makes so much whirring and hissing nomye, the cat decided to steer well clear of it and hence I did not at any time wake up with a cat on my head. I have been given some tablets to help with sleeping too, as well as calming my nerves should another panic occur, but given today I made the trip to the shop at the top of our road without carrying the portable oxygen, and not having taken a relaxant tablet beforehand, I honestly feel it is all a thing of the past.
Caroline's speedy actions also led to us getting the hospital bed and the miles of extra tubing for the oxygen. The former due to the probale fact i will eventually be unable to tackle the stairs due to immobility, and the latter because it is possible I will always need to be on oxygen as the lung tumour has greater impact.
It may seem strange, especially to some, that the content of our meeting was all about the negative potential impacts of the illness, and not the positive elements. But as I have said before, I believe the discussion to have given me the power to choose for my self either life or death. In that choice the only two people I really have to consider other than myself is Sarah and Emma, who my death will most profoundly effect. If I am basing my choices on anything other than my own power to choose, I am losing personal power in the matter and allowing considerations I really have no responsibility to interfere with the process.
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