Settling in........

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...........

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

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.

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!

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......

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.

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.

Tears

Well, two posts for the price of one today! Sarah has let me on again!

I wanted to post today because last night was a very special night for me. You may have all noticed that Emma has not blogged, although we have mentioned her a few times. She isn't going to blog today either, but this entry is predominantly about her and the amazing woman I truly believe she is going to be.

In the last few days (possibly even weeks) I have noticed my relationship with Emma has been somehow diminished by the fact Sarah and I have had many conversations about my illness and the things we may have to decide upon in the not too distant future from which Emma has been excluded. We have told oursselves the reason for this is, of course, the future is truly unknown and to tell Emma some of the doctor's thoughts and predictions could well result in her experiencing stresses and worries that are proved ultimately to have been pointless and unfounded. The result of which has been a lack of integrity for me and a feeling I am placing a barrier between the two of us, and Sarah has felt the same way. Last night, I had the opportunity to talk to Emma as Sarah was out having a massage, and she and I were alone in the house. SHe'd just done some homework on her new Christmas laptop, and sat in the wheelchair to have a little spin around the front room.

I asked her "A lot has been happening in the last few weeks with hospital appointments, and the oxygen arriving and the wheelchair and all that, and I know you've not asked anything about what's been going on, but I wondered if you had any questions about it?"

She told me she didn't, and then added "I know that the doctors gave you three years Dad, and that you are obviously not well, but you're looking ok." I said that waws true about the doctor's opinions, and that they had, over a year ago now given me two to three years. But then I added, "And right now, sweetheart, they think I am very poorly."

"Well, I know you said yuo are not going to give in, and I can see that you have been doing your best to keep going," she told me. Then she added, "What will happen, Dad? I mean, when you get very poorly, what will actually happen?"

I told her that was a very good question, and laid out the facts Sarah and I had been discussing, namely, if I did not recover, being nursed at home (as I would get more and more tired and need to be in bed almost 24 hours a day), going to be nursed at the hospice (again for the care to be 24 - 7 but for me to be out of the way of both her and Sarah's day to day activities at home). I told her the hospice was very different to the hospital, being without visiting times presribed, private rooms which you can personalise, and a facility for them both to sleep over if they wanted to. The last option was the hospital itself, and I told Emma that would probably only happen if I fot a serious infection, or had to go in for something else.

"I know you talk about the possibility of getting better, Dad," she said, "But what do you think about your illness really, without the miracle cure." So there it was, the opening for me to tell her the truth about what had been going on in all the appointments and discussions. So I told her this. "Darling, in the opinion of the doctor's, if I were listening only to what they said, then next Christmas is a very long way away. In fact, even Summer is a very long way away, becuse to their eyes, I am very poorly indeed." Still sitting in the wheelchair, she stopped the slight back and forth rolling she had been doing, and her eyes began to tear up. I said nothing, knowing I should not speak. "And," she said, "are you scared?"

"Scared? Well, in terms of dying, no I am not scared, because my beliefs and my thoughts about what happens when we die are nothing to be frightened of - in fact, the Buddhists say that death is such a wonderful experience, it should be seriously celebrated by all the people who know the one who has died." Then I paused to see if she had anything to say about that before adding, "In terms of whether or not I am going to die, I have to be really honest with you, Em, and tell you I am really worried about it, and that I am very poorly as you can see with all this stuff around us."

She said nothing for a few seconds, and I was just about to say if she had anything else to ask when, with poor timing, the phone rang. I could have ignored it, but I didn't, and it was my GP. As we spoke for a few minutes, Emma went back onto the laptop and began writing away, her fingers tapping out very quickly (she is a quicker typist than I by far!). When I got off the phone I asked if she had anything else to say or ask, and she said, with a smile a few millimetres from tears, "No, that's ok!"

After double checking, and getting the same response, I decided not to push it, and I went into the kitchen to put some cooking stuff into the dishwasher. Less than five minutes later, Emma came out to the kitchen and said, "I am just going to the shower." Her eyes were still red, and I reached out and gave her a hug. "can you switch my laptop off please, Dad?" And she went upstairs to shower.

On the screen of her laptop was a document, entitled simply "Dad". She had written a letter to me and knowing I would read it if she asked me to shut down her computer, ahd left it in full view for me to read. I would love to reporodice it here for you all, but I am treating it as confidential until she tells me otherwise. I can tell you this much: in it I was given permission to die, by her saying "please do not think you have to put yourself through any more pain than you are for my sake. Although I am scared shitless, I know I will be OK, and me and Mum will do fine". There were other things even more amazing, even more insightful, and even more thoughtful. Recalling it now, I am in tears, mostly of pride and awe, with more than a hint of sadness. I have no idea what whe will grow to be and do. I only know she will be an amazing woman, because in my world, she already is.

I should probably end there, but another thing happened last night which is that when going upstairs to bed, even though I was carrying oxygen, I became short of breath again. I do not know if it is panic attacks, or if it is based in something physical, but it took me twenty minutes to get into bed, and with the oxygen still on, try to get some sleep. Then it happened again when I woke up once in the night. How I stopped it this time was to ask myself what is the worst that could possibly happen? The answer is, "I die by asphyxiation." After my conversation with Emma, and having to be honest with myself, I then said, "And that may well not be such a bad thing. Better than fear, pain, and slowly falling further and further into a deep sleep I know nothing about." It stopped the panic almost straight away. In the morning, however, I told Sarah that I wanted her to stay home with me, that I did not want to be parted from her and that I would be scared if she was not here. And that is how we both get to blog on the same day!

A doctor is coming round soon to check on my lungs, so we shall see if there is more physical reasons for my shortness of breath, or if it is all me playing mind games with myself. I know that for some people, contemplating my death and saying "it may not be such a bad thing" is the equivalent of a Cardinal Sin! However, one friend of mine sent an email to me a while back, and it is one I have read a few times now: the words are from a woman with cancer, who had a near death experience when she was a child and was close to death again now. She writes: "People keep talking about the miracle, and how I will be cured. For me the miracle is death! For far too long I have been kept from that feeling of love I felt when I "died" as a child." So perhaps, I can take a lesson from her book, and say just this: I am not dead yet, and all the time I am not, I will be giving it my all. But death is not a big scary thing to me either.

More about meaning

Sarah here again. Am staying home again today as my boy is really struggling and needs me around. I was just reading back over Dave's blog about the meaning of life and all that and wanted to add my thoughts.

I look back at our life together and see that we have been on a continuous quest for meaning for the last 20 odd years which has led to a lot of fun experiences and a few strange looks at times! I have spent a lot of very powerful weekends and evenings on Landmark Education courses, did the Alpha course which led me to get clear that I was definitely not a Christian and more recently the Quaker Quest to see if I was a Quaker. Being a Quaker did call to me in certain respects but I'm afraid that without being offensive the dress code did put me off a bit especially the bad jumpers and tweedy skirts! I have also spent a weekend at a brilliant Buddhist monastery with my friend Shari on the pretense of learning meditation. I did make people laugh when I came back and said I was surprised to find out that meditation did seem to involve staring at a wall for most of the weekend, but that it was a very nice wall! I have also read endless books and have to say that even at the age of 45 I am still god damn curious about life and the miracle of it all. These days I would probably say that Buddhism and Quakerism are the things that call to me most but my enquiry is definitely not over. A couple of months ago I was looking at a Facebook page of a gorgeous man who used to work at Landmark called Nick Klyne and he had written against his "religious views" that "there was something out there somewhere a bit like the X Files". I can only concur with this view. To me all the different religions are all different ways of getting to the same thing and they are all equally valid - it is just a shame that so much of the time is spent arguing in the world about who is "right", but then that's human beings for you!

Because of what has been happening recently with Dave I have been reflecting back over my life and was this morning remembering when I did the Landmark Advanced Forum in about 1999 I think. In those days (I don't know about now) the course was about generating a purpose for your life based in possibility rather than your stories and interpretation of yourself. I think the course lasted 3 or 4 days then and I struggled to find a meaning for myself other than my commitment to be loving towards people for the first couple of days. However, at a certain point I invented a new possibility for myself. Because of the time that has passed I cannot remember the exact wording I used but it was something like "I am the possibility of being bold and courageous, an unstoppable stand for people". I can remember standing on the stage and saying this out loud to the 100 or so people on the course and the course leader (a phenomenal guy called David Ure) said that he really got a sense of it and how powerful I was. I was shocked because at the time, he seemed like an extraordinarily powerful person and I thought of myself as a very small insignificant person. The reason I was thinking of it this morning was that the actual phrase came to me out of nowhere at the time and yet now I can see how I have been that a lot in the last ten years around all sorts of things happening in my life and especially the current situation with Dave's illness. Even more reason to have the thought that there is something out there somewhere!

And back to the meaning of life. I can see now that as Dave has already said my life with him and Emma has given me all the meaning that anyone could ever need. There really is nothing else to go and look for that could make it any more special than the relationship that we three have. Nothing to do and nothing to be - we have all that we need. This doesn't mean that I will stop being curious about life because that is a big part of who I am and no doubt I will go exploring all sorts of things in the future but for now all we need is each other. That's quite enough meaning and purpose for anyone.

Pink Elephants

Yesterday was the day to change the cassette and increase the clonadine by 2mg in the hope this small change would increase the effectiveness of the pain relief as it did a few weeks ago. With my appointment at 3.15, Sarah and I left early in the hope of getting a coffee and avoiding the madness and mayhem of the hospital car park at "visiting time". So eager are the relatives and friends of York's aged and infirm to see their loved one(s), they will, it seems, stop at nothing to ensure they get to a parking space first. All consideration and polite niceties go out of the window, first in the queue to get into the car park (those turning right from the main road have no alternative but to attempt to squeeze their way into a gap left by the person suffering a momentary lapse of concentration causing them to leave a gap of more than 10cm between their front bumper and the rear of the car in front of them!), and then in the car park itself, where the arrows on the floor indicating the required direction of traffic flow are seen as little more than an intimation of general preference as people in people carriers and four by fours attempt to get into car park spaces designed when the hospital was built and the average customer had a Ford Anglia or a Moggy Minor. The resulting lack of space means that many a car is going to get its fender scraped, its wings clipped and, one day I am sure as the tide of frustration breaks in a fit of car park rage, will simply be squashed by the person who has decided to beat the system and come by Chieftain Tank.

Slightly delayed, we sacrificed coffee, and although when I intially arrived at the Day unit I was told there'd be a wait, Dr Hall saw me very quickly (I suspect bumping me up the list due to the fact my procedure is so quick). Although it is impossible, the change had immediate effect, and my left leg went totally numb. This is impossible because there is still about 2ml of solution left in the tube from where it leaves the pump to when it enters my spine - which should obviously take about an hour and a bit to go through, dragging the new solution behind it. But my leg was so numb, Sarah and I had to go for a coffee before I could attempt getting into the car for the return trip home. If we hadn't had the foresight to load the wheelchair, I would have been stranded or, worse, having to use a hospital wheelchair which has the comfort of a bed of nails.

The result of all this is, on 18 hours or so evidence, the pain has been reduced by the increase of clonadine, and my mobility seems not to have suffered.

In addition to the hospital visit, there was another development yesterday. On Monday night, I got out of bed to go to the toilet and my moving about disturbed Sarah, and she got up too. As I take so long to pee these days (I have been known to hit an actual 6 minutes of weeing time) Sarah went first. I then began to suffer from shortness of breath, and my breathing became shallow, laboured and was turning into the experience I'd had when I visited the recycling centre. With my walking stick, I somehow hobbled-ran to the bedroom where the large oxygen cylinder was waiting and, sitting down on the bed, my shaking hands found the canula (hospital word for "tube") to insert into my nose and I turned the tap on to six, three times my usual dose. Very quickly, my breath came back. I gave Sarah several reasons for the sudden onset of my shallow breathing - like the coldness of getting out of bed late at night hitting my body taking some breath away, and the fact there is some liquid still on the lung which will be moving about and perhaps is causing problems when I stand up. She accepted the reasons, and we both returned to bed and slept - me with the oxygen close to hand and the nasal canula hanging on the bedstead.

Sarah woke at her usual time to go to work (6.15 or so) and, as usual, I slept on. I got out of bed at 7.30, and when I walked towards the bathroom, I had a return of the shortness of breath once again. This was something I had never had before - waking up to a warm room (Sarah will have turned the heating on when she got up), and yet still getting such an attack. When I returned to the bedroom, it began to stop even before I had put the canula into my nose. I called Sarah once my breath had returned and asked her to bring up the small portable oxygen cylinder so that I could go to the bathroom once again. When I told her what had happened, she obviously wanted to stay home with me, and was not happy until I reassured her I had everything I needed.

And sure enough, when I got downstairs and had some breakfast (7 tablets and a bowl of porridge) I was absolutely fine. I placed the small portable oxygen tank on a chair in the dining room, and went about all my usual activites without a hitch or even a hint of any shallowness of breathing. At 11.30, I decided to do my usual trip to the shop to buy myself a newspaper. I left the house having put on a coat to ensure I didn't feel any ill effects from the cool air outside, shut the front door to the house and walked slowly up the street. By the time I'd gone 50 metres or so, I began to feel my breath getting short again. I told myself "this is stupid! You've been fine all morning, you're going to be fine now. This is not going to make you short of breath!" You see, even a person such as me, well trained in hypnotherapy and the art of suggestion, at such a time forgot one of the most basic facts of the human mind - you cannot think a "not". If you say to someone "don't think of a pink elephant" you can guarantee they think of a pink elephant! If you tell a child, "Don't run into the street!" they start thinking about running into the sreet! So saying I am not going to get short of breath makes me think of getting short of breath! Before long, I am at the top of our street having a full blown attack of the kind first experienced before Christmas when the fluid on my lungs had yet to be drained. I stood still, and although my breath was laboured, I told myself "Relax", and then I began the simple Buddhist meditation called twenty one breaths, where you count 21 breaths in and 21 breaths out - it doesn't sound like much, but it's very easy for people to lose count, and when you do, you have to start again. Fortunately, this time, it had the effect of taking my mind off the shortage of breath, and back onto the breath itself, and within a few minutes I was breathing normally again. I decided, however, to come home rather than go to the shop as had been my intention. Once home, again there were no more issues with breathing at all. So now I realised I was having a panic attack about not breathing which brought on an attack of not breathing. The clearest example of this was when Sarah came home to take me to the hospital, she loaded the wheelchair into the car, and then took the portable oxygen to put into the car too. The moment the portable cyclinder was out of my reach, and only the cylinders upstairs remained, I began to fear needing oxygen, and became short of breath once more. When Sarah brought the oxygen back, I recovered without needing to use it. I was, in effect, conditioned to be near oxygen for fear of not being able to breathe without it.

Thankfully, Sarah is an extraordinary person and she immediately recognised the problem for what it was, and told me "Don't be so hard on yourself all the time! This is the first time anything like this has happened to you and you have been through and coped with so much. Go easy on yourself." On the way to the hospital, she continued talking to me, and gradually, she was able to get me to laugh about it and not be so serious and, as she had rightly said, so hard on myself. "So what if you go to the paper shop with a can of oxygen on your back. I should think most people with oxygen don't try to go walking anywhere anyway! If you are worried about leaving oxygen behind, then what's wrong with taking it with you!"

And that, in a simple nutshell, gave me a choice again. Once again it was my power to choose to have the cylinder with me or not, and when I had the choice, it seemed to me I could do without the oxygen or not, and it didn't really matter one way or another. The fact I panicked about not being able to breathe was something I could easily forgive myself for: after all, I had been scared I would die when the first one had happened, and that is bound to have some effect!I have yet to go to the shop today to buy a paper, so I don't yet know if I'll choose to take the cylinder or not. The thing is though, it is now my choice. By allowing me to laugh at myself and to not be serious herself, Sarah gave me back freedom to choose. She truly is a remarkable person, and gets more remarkable in the face of this horrendous situation as each day and new challenge arrives.

More than cups half full or half empty

Sarah here. Not posted for a while as been too busy back at work and taxiing Emma every night whilst she has been in her show!

Apparently the first Monday back at work in January after the Christmas break is the most depressing day of the year. I know this because Dave's lovely cousin Jane rang me on Monday 5th to tell me that she had seen this on the news that day and was calling because she thought, "if it's the most depressing day of the year what must poor Dave and Sarah be feeling like with everything they have to deal with". Bizarrely at the time, when I ran a check of myself I could honestly say that I felt great, which led me to ponder why some people like myself and Dave tend to stay upbeat and positive (most of the time!) even in the most difficult of circumstances and why many other people who appear to have very few problems or difficulties in their lives are so downright miserable.


When I sat down later that night I was reading the Independent magazine from the day before where a guy called Lawrence Shorter had written a book and an article about optimism which was more food for thought on this topic. Lawrence as part of writing his book had done some research in to the historical meaning of the word "optimism". It turns out that the word optimism comes from the word "optimum" meaning "the best possible" and was first coined by Leibniz, the 18th century philosopher to signify the perfection of the universe as it is. In other words, optimism has nothing to do with the future - it is a description of reality now. The world and the universe are already "optimal" - they couldn't be any better. As I type that he can hear you muttering, but I found this an interesting situation to contemplate as I oten get a sense that this interpretation of the world is correct.


Later in the article, Shorter talked about the fact that in his view it is not events e.g. losing our job, our partner dying that we are afraid of but it is our reactions to them - that we are afraid of our own feelings. I find this to be very true of my current situation as the thought of Dave dying and what that will mean for me can be very confronting. When I look at the other (and sometimes strange to me) reactions that some people are having to Dave's illness and future demise, I can see that a number of people are simply afraid of their own feelings, so they get caught up in themselves, a sometimes unwittingly selfish pursuit. It is my aim to allow my feelings to arise and fall freely, a bit like changes in the weather, but I see this as far healthier than suppressing those feelings which are more difficult to deal with. This can mean that one minute I am tearful about what is happening, the next I can be laughing out loud. I think sometimes this can be disturbing for people, although I obviously don't mean it to be! Particularly at work, I see people looking at me and wonder if they are thinking, "how can she be so cheerful and bright and breezy when her husband is dying?" . The truth is I do feel joyful for a lot of the time because Dave, Emma and I are squeezing every bit of life out of the time we do have together and are living very much in the present, as that is all that is available to us with such an uncertain future. I have times when I am very very sad about what is happening to Dave and I struggle desperately when I see Dave in pain, but I can hold this on the one hand alongside my pleasure at some of the simple things in life that happen on a daily basis.

To take this weekend for example. Yesterday we managed the remarkable feat of getting Dave to see Emma's show - he managed to sit through the whole show in his wheelchair and took great pleasure in seeing her singing and dancing her heart out in a musical version of the Lion, the Witch and the Wardrobe. We later managed to watch an entire film together whilst Emma was out giving her evening performance, something we enjoyed but is again no mean feat. In contrast, in the very early hours of this morning, we were up together with Dave struggling for breath and panicking because he could not get his breath at all. This is very unpleasant for both him (for obvious reasons) and for me, especially as I can do little but help him with the oxygen and sit with him until things calm down. But we got over that and then today we have had a lovely day. Some friends, Dave and Jeanette came with their baby Molly for Sunday brunch this morning and this afternoon, Auntie Sheila and Uncle Tony and Auntie Barbara and Uncle Norman called in for a cuppa - no mean achievement when you consider that they are all in their 70s and had travelled from Bracknell for that cuppa! Whilst they were there, Julia called in and after Julia and the aunts and uncles had gone we had Claire and Hattie for a roast dinner and a neighbour Becky later called in. So a very full day but fun! And yes Dave was tired after such a full day, but to feel all of that love and support and chat with people was great!

So my life these days tends to be a vast melting pot of fun, laughter and love interspersed with periods of upset and despair, but at least in allowing myself to experience all these feelings I am free of the fear of experiencing them.

Another part of the article about optimism that I really liked was the assertion that happiness is a choice/decision - something I have believed for many years now. It is possible to decide to be happy right now. Most of the people I observe are waiting for happiness to happen some time in the future when the conditions are right. I find that really sad as often people think that when they get X amount of money or the right job/partner/house then they will be happy and then they get whatever it is for them and realise that isn't it either! What a waste of time......! (Sorry, I'd better get off my soapbox now).

So I have been sitting with a new way of looking at optimism this week and it has been very interesting. A lot more interesting than the usual interpretations of cups half full and cups half empty. My thinking process was also aided by some training I organised for my team at work that happened at the beginning of the week. I organised the training because my team are great people, but as is often common with women at work they lack confidence in their abilities, although they are very able. Our training session was called "Positive Belief" and was run by a lady called Jules Wyman who really does practice what she preaches, so was full of fun and enthusiasm. As I had heard most of the ideas before in other training I had done over the years, the training was more of a refresher for me, but given what is going on with Dave it was a very timely refresher. One of the things I took away that I will remember is an equation that Jules put on a slide which said:



EVENTS + REACTIONS = OUTCOME



The example given on the course was of two people having a car crash and having different reactions - one person panicking and another person going to pieces and how that ultimately influences the outcome. This is ultimately how I see Dave and I dealing with his illness. We may have no choice about the Events that happen but by choosing our reactions we can influence the outcomes. Maybe not the biggest outcome i.e. him not dying, as that is in the hands of fate, but there are hundreds of other outcomes that we can influence and are influencing on a daily basis.

Now before I go, a couple of other points............

We are curious as to how many people are reading the blog these days. We have an idea that blog readers are now in their hundreds from the emails, donations and phone calls we are getting. One way to help us in establishing this is if you could make yourself a "follower" of the blog if you have not already done so. You can do this by clicking on "follow this blog". It would help us if you could do this as we are contemplating having a go at turning this in to a book that is published so it would be good to have a clearer idea of the numbers.

The other thing is that a number of friends who are aware of our current situation have asked whether they could give us as a family money in addition to, or instead of, donating to the blog as they would like to help us in this practical way. Our income has drastically reduced since Dave has not been able to do much work and we are in the process of claiming benefits and living off our savings. This is not a request for money but if you would like to support us in this way we definitely would not be offended!

Going Rambling

As there is little of any medical stuff going on, I'm going to ramble on about something I have been thinking of a lot in recent months.

Actually I have been thinking about it a lot longer than that really - I've even spent time in a Buddhist Monastery, done the Alpha Course that's advertised on all the buses, and generally speaking, chewed it over a lot for a long time. It's not unrelated to what I do, which I think is one of the reasons I enjoy what I do so much. As I have said, what I do, in the simplest of terms, is write and run training courses. The ones I used to love most to deliver were the ones where I didn't have to tell people anything (well, not much anyway), and they would learn and develop for themselves. These were "open bound" type courses, where teams of executives would have a series of tasks, and get feedback on their leadership and team style, and all that jazz. After running these courses, the people who attended would often tell me it had an amazing impact on their lives, because they were clearer about what they wanted to do and how they might go about doing it: another reason I loved running them. But my absolute favourite was a course called Future Mapping, which I wrote a few years ago now, and is still run on a regular basis by a friend of mine. What the course does is give people the opportunity to discover (or design) a purpose or meaning for their life. Now I know that sounds a bit grand, but I swear to you on all I hold dear, that is what it did and still does. The reason I raise it here is not to show you what a fantastic guy I am (that, after all, is a given), but because it relates directly to this thing I have been thinking about a lot - namely, what does it all mean? What is it all about? Why am I here? And all those thorny existential problems most of us don't talk about much. Actually, one close friend of mine believes that I am the only person he knows who has been in a mid-life crisis since he was 18! And what's worse is, I agree with him! If that is the case, then I have been working on this thorny issue for 29 years now, and should have some answers, or at the very least, some informed opinion about it.

I was given a book recently (I think I mentioned it in an earlier post) called Man's Search for Meaning by Viktor E. Frankl. Frankl was a holocaust victim, and in his book he writes about the experiences he and his fellow inmates had in the concentration camps, and his observations of what helped people survive. One of the key things, he determined, was that the person had to have a meaning for their life, a meaning or purpose for which they would survive this experience. Without it, he says, people in the camps would die very quickly. Most importantly though (for me, anyway) was the fact that he says people could discover or create this meaning or purpose for their lives themselves - he believed this so much, that after the war, he went on to create a school of psychotherapy called logotherapy, where he helped people determine this meaning for their life as a way of resolving current problems in their life. He even goes so far as to say that people have to discover a meaning for their life, for to not do so leads them to a life full of problems.

Even before I read the book, I was thinking a lot about my cancer, and what the purpose my having it could be, and it also had me think about what the purpose for my life had been to this point. I'd actually already decided I had one purpose, namely to assist others in expanding what is posible for them in their life - hence the training courses I loved to write and run were all about increasing choices for people, in whatever walk of life they were in and whatever their current job title. But I have, in the last couple of years realised I also have had another meaning and purpose for my life. Frankl reports in his book people who could conjure up the face of a loved one in the direst of circumstances in the camp, and this loved one, and the eventual reunion with them after the camps, was their reason for staying alive. This loved one, and the times they would share together, was the meaning for their life. For me, Sarah and Emma have been the meaning for my own life, my purpose having been to love them as much as possible, to give Emma the best start in life possible, and to give Sarah as much love as I could. For years now, having a wonderful life with my wife and daughter has given my life all the meaning it could ever have needed.

And now, with cancer potentially taking me from the two of them, and the knowledge I have of the grief and pain my death would bring, they represent more than enough reason for me to survive. Yet if I don't, my illness will have still had meaning for me, and that meaning is twofold. First, I have been given the opportunity to know life is not about the small and trivial concerns most of us make it to be: it's not about what job you have, what status you perceive you have, or about what you own, or even what you have learnt. It is simply about living life and knowing how miraculous it is that you are living it, how amazing it is you exist at all, and that something like love is available to you to experience. Although I might have known that in theory before my illness, I have been given the chance to be it and live it fully as a truth. Secondly, I have been given the opportunity to tell people about my cancer experience, and to thereby serve either as an example of how to survive it, or as an example of how to die with grace, having given it my all, and in some peverse way enjoyed myself in the face of it. (Actually, not perverse at all, as I have enjoyed being the recipient of so much love and care, of being told by people I have contributed to their lives, to do anything other than have enjoyed it would be the perverse thing.)

That does not take away the fact I would much rather not be going through this, but with such a context for it, it is made easier for me to bear.

Stubborness and Fame

The cassette change with Dr Hall went without a hitch yesterday, and much as I suspected, I will have another change next week (on the Tuesday) when the clonadine will be increased in an attempt to combat the increased pain levels. With the cassette only having to last a week, it means I can give myself higher doses now without fear of running out of the drugs - an eventuality, as I mentioned before, I am unable to contemplate, because without this spinal infusion I would, I suspect, be more wailing banshee than my usual chirpy cockney chap self! The higher volumes also mean the pain is more easily controlled.

One snippet of new information was gained, however, which indicated what my considered life expectancy had been back in July, when the spinal catheter was first introduced. Dr. Hall had enquired after the condition of the entry site, where the tube went under the skin, because, as he said "The longer it stays in, the higher the possibility of an infection like meningitis." He then mentioned the fact that if the catheter is expected to be in longer than three months, they use the subcutaneous version - a smaller pump implanted under the skin, with only a 30 ml capacity requiring frequent refills. This obviously implied to me that back in July, when the catheter was inserted, I wasn't supposed to go much past September/ October! It made me feel as though I have achieved one small to middling victory in the battle for life! It now turns out, I am the longest wearer of this contraption York Hospital has known: a thumbs up for stubborness and independence!

Then this afternoon was the visit to the Palliative Care team at an appointment laid on especially for me by the registrar Claire Ruddock, a doctor who has bedside manner cracked with just the right mix of concern, joviality and genuine care. We'd also suggested bringing in the Tissue Viability Nurse to advise on dressings and to check out the state of my visible tumour sites as well as the degrading of the skin on my legs. This means I was thoroughly examined, and Claire was fully apprised of the latest symptoms and developments: as she said, there has been significant change between the situation now and that of only two to three weeks ago when I was in hospital for the drainage of my right lung. The only real development from this meeting was that the increase in oral medication I had already determined to give myself was a good idea, and that I should keep at that level for the moment until we can determine what changes, if any, the increased clonadine will bring about next week.

And so for now, we are in a reasonably stable condition, and really just waiting the results of next week's amendments.

On the non medical front, I have to report having achieved a certain small local notoriety. In the York Press an article appeared just before Christmas telling people of the blog and the fund raising campaign, and that was followed up yesterday with another story lifting quotes from the blog about our Christmas. The upshot of this so far has not been the main desired one of increased contributions to the MacMillan fund, but the equally fun side effect of people locally now recognising me and stopping me in the street to ask me how I am (and sometimes sharing their ailments with me!) It can now take me an hour to make the return trip to the local convenience store to buy a newspaper as I meet people willing to have a chat. What's great about it is the number of offers of help there have been - there is such a high percentage of transient student population in our area the feeling of community has been difficult to find, and yet there it is, under the surface waiting to manifest itself at the first opportunity. People to whom I have said a brief hello in passing on the pavement have now become people with names who are willing to be of assistance in whatever way they can in my situation. With the state of the papers and news reports at the moment, it's been a pleasant reminder people can actually be humane and helpful with each other. There's also been the occasional time when I know someone has recognised my face from the photo in the paper, but not been too sure what the accompanying story was about, leaving them uncertain as to whether they come up and speak to me, or run away for fear of me being some dangerous criminal from the more serious news stories covered in the Press. Ah, the pressures of fame ... I'm afraid I'll have to go now to sign a few autographs.

Back to Life

It's time to return to normality for everyone after the Christmas break, which means going back to work, breaking New Year Resolutions, and wondering if the Christmas excesses require a full detox diet or just a diet to get rid of the additional few pounds laid down during the festivities. For me, it means going back to the regularity of catheter pain cassette changes (tomorrow morning) and visits to the Palliative Care Team at the hospital to review the symptoms and amend the drug programme according to any new developments (Tuesday afternoon). And of course, it means going back to wondering about the things that cause concern to me and my family in this situation - should Sarah be going back to work or considering staying at home (although we want to spend time together, as Sarah says, no amount of time spent together will make up for the years we are not going to have), should I consider sending my lease car back as I am getting to the stage where driving is uncomfortable over even relatively short distances, and we could save a few quid in the process, or how will we pay the bills if I can't work any more, and so on. Living with cancer is, in effect, just like normal life, but with a few different concerns thrown in.

When I get the cassette changed tomorrow, I will be reporting to Dr Hall the fact the pain has increased, and quite dramatically in the past week alone. The tumours on my rear and groin have expanded and begun to join together, which means I have a new level of pain to manage as the tumour develops onto the scrotum area, and on the groin next to it as well as at the top of my left leg. These can cause intense discomfort when I am walking, but the pain can be easily managed by giving myself one of the boosts from the pump. However, at the current concentrations, I am having to use large amounts of the mixture in order to numb the pain - so much so that the amount of drug left tomorrow in the cassette I am handing back will be about 4 to 5ml - a level that is a little to close to running out for me to be comfortable doing it too often! The thought of what I would be experiencing if this pain relief were to suddenly run out is enough to give me nightmares if I dwell on it too much. I have also increased the oral medication in an attempt to keep the cassette boosts down to a minimum, but this new pain seems to ignore whatever levels I imbibe at the moment and makes little difference to the boosters at all.

All that means is, I shall need another change in a week's time, and it will have to increase in concentration. On the other hand, this increment in pain levels also indicates a possibility that the tumour is growing more quickly in my pelvis, and could be causing all sorts of unseen problems for me and the rather complex arrangement of nerves, muscles and general equipment in the area. But as I said in my last entry, such speculation is added meaning to what is actually happening, and any speculation is useless - I for one have yet to meet anyone who can accurately predict the future, even though there may be a lot of information about what appears to be next.

The fact Christmas break is now over does have another, much more specific, meaning for me. As I've said before, I really was uncertain back in September, I would be seeing Christmas '08 at all, and therefore to have done so and to still be around for the start of '09, means that I can genuinely hold every day as a bonus! I got to see my young nephew when my younger sister Amanda made the lengthy trip with him from Surrey in the car - that distance, with a post Christmas four year old in tow, could be regarded as a feat in itself, as the season of Christmas is one of intense hyper-activity for one so young as George. I loved the fact we could both play street cleaner together as he took an instant fancy to my mechanical picking up device and enrolled me in going into our street and picking up all the litter we could find. That, and the fact we were both able to cause havoc in our lounge with the remote control indoor helicopter (mine, not George's, until I gave it to him on his morning of departure) was one of my holiday high spots. We both liked the fact I landed the toy in a friend's cup of coffee, and neither of us were told off for such peurile high jinx.

This Saturday also saw a visit from my two nieces, accompanied by my elder sister Sue and my Mum along with the boyfriend of one of my nieces (Luke). We did little together, but just to see the two of them again, and for all of us to be talking and laughing together over the lunch table, was a real pleasure for me, because living 200 miles away from them I don't get to see any of them often enough. My sister-in-law Linda (from the Lewendon side) also paid a flying visit during the day and it was lovely to see her as well. It is these events, which once I could have said were simply opportunities to catch up and have a reasonably good time with family, I now regard as important chances to celebrate the joy of being alive. When I am really present to how wonderful it is just to be here, whether it be with friends or family, or simply with Sarah and Emma, the discomfort and the weighty issue of my potentially imminent death, really do fade well into the background - they don't go away, but they take up a good deal less "head-space".

The only other element to report is the visit to the hospice, made by Sarah and I to familiarise ourselves with the place and to know what to expect if and when I go there. As with the other hospices I have seen in the past, St Leonard's in York is tranquil inside, with very little going on when compared to the busy flustered hospital wards I have been on. Each of the single rooms looks out onto green fields, and has enough space to allow for one or two family members to sleep over, and also allows some personalisation of the space to make a patient feel more at home. The staff, again in common with other hospices I've seen, all appear to be especially softly spoken, and gentle in their manner - and from those I have spoken to in the past as well as those seen yesterday, regard working in a hospice environment as a gift and a privilege - sometimes harrowing, yes, but generally a place where they feel people are being served and allowed to die well in difficult circumstances.

So I will, once again, be keeping this blog up to date (having had my own Christmas break from writing) and hence will let you know how things go after the hospital appointments this week, and no doubt continue with my other musings of a non informational nature as well - I can't help it, my philosophy degree still exerts a hefty influence on me!

Twelve Months On

It has been something of a standard practice in the French household at the end of the year to conduct our own personal review of the year, to then bring some objectivity to all the things that have happended in that year and remove any sense of limiting meaning or interpretation to those events, and, through this process to enter the New Year with a feeling of clarity and opportunity. It may sound a bit esoteric to some, but this form of "completion" (a Landmark term which could translate to "getting fully objective and real about what actually happened during the year as opposed to what you made all that happened in the year mean about you, other people, and the world - hence the shorthand term!) has always proved useful for Sarah and I in the past as it really works and gives the New Year a true sense of being new - never experienced before and genuinely full of potential. It works better than making New Year Resolutions ever did for me anyway!

So, I thought I'd share a bit of that process with you today, because as I look back on '08, and look out onto '09, one thing I am clear on is this - it would be all too easy right now to think I should give up, curl up into a foetal blob on the sofa, after saying a firm "Sod it!" to the world, and allow the potential peace and quiet of non physical existence to take me away. When I feel like that about it, I know for sure I need to complete the year like never before!

In January 08 I was going through chemo having been told I was terminal just a month to 6 weeks before. I was, in spite of this, still running training courses where I'd be on my feet all day (never being one for sitting behind a desk and talking at people), enjoying country walks wiith Sarah, sleeping well with the aid of some morphine, and still enjoying a beer on occasion as well as being able to intermittently sit down for quite extended periods of time. In April, I was able to fly to Rome, walk around all the sites unaided and without pain, take the train to Florence and walk around the Vatican Museum and see the Sistene Chapel, and then drive to a villa in Tuscany for a week of complete isolation and relaxation. It was on this trip that the first signs of the tumours appeared on my bottom (although at the time I did not know that's what the slight soreness and bleeding due to a small tear on my scar was). By the time December rolled around my life in comparison seems to be so much more limited. No need to reiterate it all here as it's been the subject of most of the blog anyway! But when I look at the stark contrasts, it is frightening how quickly things have happened, such that in 12 months I've become unable to walk any distance, sometimes unable to breathe, drugged to the eyeballs and a person living in a family who are, all of us, literally confronted by cancer every moment of every day - there is not one decision we can make which does not, even if in some small way, require my illness to be taken into account. It really is quite a challenge to get to the point where I can interpret all these events as something other than indicative of my death, and the fact that it would appear to be likely to occur sooner rather than later. One brief example from recent days: on the 29th, this Monday, I took a bunch of stuff down the tip for recycling, as well as a few bags of stuff to have to into the skips designated for landfill. I emptied the boot of all the glass and plastic and so on and put it into the appropriate spots. To do this I'd parked the car near to the recycling containers, and needed to carry four bags across the width of the tip to get rid of them - a round trip of perhaps 60 metres. On the second trip, one of the two bags I carried was slightly heavier than all the others (as it contained cat-litter - heavy and smelly stuff I was desperate not to drop anywhere near me!) I was, as I reached the side of the skip, breathing a little heavily - as if I'd run up a very short flight of stairs at full speed. As I walked back to the car, it got worse. 5 metres from the car, I was in full blown suffocating mode - I could not breathe deeply enough to get sufficent oxygen to the rest of my body because of the stress this huge task had placed upon my system. As I reached the car, I grabbed open the driver's door, and leaned heavily on it, my shoulders heaving as I struggled to force air into me. I was imagining collapsing in the middle of the dump, an ambulance being called, and me dying before it arrived. This fear lasted for two minutes, at which point the episode passed, and I began, quite suddenly, to breathe normally and easily again, with the burning sensation in my muscles and chest subsiding before it reached the full blown burning up sensation achieved by the nocturnal episodes that had led to me getting my lungs drained in hospital. So now, even the simple act of "taking stuff to the tip" is heavily laden with the overtones of cancer, and has resulted in my thinking I should put the portable oxygen cylinder in the car whenever I go out and may need to walk somewhere or carry something.

How then to complete this year? At it's most simple, it is this. What has really happened in 2008, when you look at just what occurred and not what I have made it mean? The answer is this: my bottom developed some growths which have inhibited movement, and to this point such inhibition has become progressively greater due to the greater degree of pain relief used to control the pain it produces; I have found breathing difficult and have been told it is due to fluid produced by a tumour in my lung; my legs have swollen and my skin on the lower leg in particular has become very dry and scaley; other growths similar in appearance to those on my bottom have developed in my groin and the top of my left leg; I now find it hard to bend over as to do so causes pain; the doctors tell me I am incurable, which I have chosen to interpret as "they don't know how to cure me yet".

Does anything in "what has actually happened" point to my imminent demise? No. Does any of it mean that I will not be cured by some means at this point unknown? No. Does it say that any parts of my body currently containing tumour cannot once again be tumour free? No. Does it say that any parts of my body currently tumour free will be infected in the near future? No. Does any of it, therefore, indicate that a cure will not happen? No, not that I can see. Now, just to make sure you know I'm not completely bonkers and off my rocker, there is nothing in what actually happened that says a cure will occur either. That's one of the things that you notice very quickly about events when you subtract meaning from them - they are completely neutral. What happens has no moral content or any other form of abstract content at all. It just is what happened. What happened in '08 had nothing to say about whether or not I live or die, or when. So I get to decide for myself when I think that will occur and, indeed, if it will. I know it will one day, but in that sense I am no different to any of you. How and when? That's a different matter.

There are, of course, many opinions out there that tell me I will die, and there are many opinions out there about what that will mean, and how it needs managing now in terms of preparing myself for the inevitable, and Sarah and Emma's need to do the same. They are of course potentially right, and in the case of the doctors, possess a certain amount of past evidence with which to argue their case. Yet there are also examples where even people in such advanced state of illness as myself have somehow been cured.

And so, for now, I shall choose to continue to believe in the possibility of my survival. There have been times recently when I have doubted it and thought that my death was really not that far off. But now, without putting layers of meaning and opinion on top of what has actually happened in the last year, I can believe in the miracle. I am still going to visit the hospice on Saturday to check out the facilities and the lie of the land, because I may need to use it, and to know about it will be useful for both Sarah and I. But I'll not be asking for a place just yet, until I can be certain I will need it.