A Bit of a Shock for Some

Christmas was all I could have wished for. Having laid off the lethal metronizadole antibiotic (a drug similar in compound to one they give to recovering alcoholics which would result in projectile vomiting if taken with alcohol of any kind) since Monday, I was able to have a beer on Christmas Eve, and by God did I savour it!



The only thing to detract from the entire Christmas occurred at 3.00 a.m. on Christmas morning, when I was woken with terrible burning pains from the tumours on my rear. Sometimes, there is a seemingly very acidic fluid produced by these constant companions, and as it hits parts of the open wound, it burns like hell. As a result, Sarah and I were awake for over an hour, and I'm afraid the noises I made were enough to disturb Emma's peaceful sleep. Eventually, the burning sensation passed, and we were both able to get some much needed sleep, but Emma was up and down for the rest of the night - thereby ruining her plan of not waking until at least 7 a.m., as she has in previous years been known to creep into our room at the unearthly hour of 5.30 to tell us her presents were burning a hole in her pillow case and needed rescuing immediately. However, as yet another measure of her managing my illness for me, she put up with her disrupted night, and waited until I naturally came around at about 8 to come downstairs and have breakfast with me prior to the traditional handing out of presents in the morning. (I know in many houses, tha happens after lunch, but I've never been one to hang around that long to see the look on my daughter's face as she opens her presents.)



Although we all came downstairs a little bleary eyed, we were determined to have a good day, which I am proud to say we achieved. Emma, brave stalwart that she is, was in charge of present distribution, rummaging around under the tree for presents for all three of us, which we then opened in turn. Emma's face was a picture time after time as she opened the presents she had been looking forward to since probably December 1st. On one of the presents Emma gave to her mum was a gift tag, slightly wordier than the usual "Merry Christmas, love Emma". This one read: "Dear Mum. I love you. You work so hard to please everyone and I want you to be happy too. I hope you are this Xmas." Sarah began crying as she read, and Emma gave her a big hug. The tag on my present from Emma read, "I hope I'm not being greedy, but I'd like to have a few more Christmases with you." Luckily, she had shown it to me before, and I was prepared for it. Even so, I wasn't seeing too clearly as I opened it.



The rest of the day was no doubt like many a small family Christmas - a meal with crackers and party hats, awful jokes being read out, me drinking two glasses of red wine (a recent record for me, as I didn't instantly fall asleep after the first sip from the second glass), and all of us ready to collapse in front of the TV (actually, Sarah went to bed for a sleep as the previous night's disturbance caught up with her.)



All through the day there were phone calls from family and friends wishing us all well, and at the end of the day I could sit on the sofa looking at my two wonderful girls and say with all honesty I'd had a wonderful day.



Yesterday, we managed to keep up another tradition, although having to amend it slightly. Boxing Day in the past always meant meeting up with friends and travelling to the coast for a walk of a few miles, but this year that length of car trip was just too much hassle to bother with. We made plans to meet on the footpath running alongside the river, which runs at the end of our street. In the group this year were a few people who haven't seen me for over a year or more, and both Sarah and I saw the impact on their faces of my appearance in the wheelchair, a good few pounds lighter than in the past. It definitely came as something of a shock to them, and even our friends who were familiar with the current situation had not seen me in the chair before found the sight of me so visibly ill hard to cope with, so strong is their love for me and Sarah. The momentary look of shock on their faces passed, as they decided as one to treat this as any other Boxing Day walk.

Being in a wheelchair offers a new perspective on life - physically as well as mentally. First of all, the teeth and bums of dogs are disturbingly closer to eye level - no wonder kids in pushchairs can be put off man's best friend from an early age. One slobbering boxer was enough to almost traumatise me as it looked directly into my face while its owner remained completely unconscious of its proximity to the lap of mine which it was momentarily, I swear, contemplating leaping onto. Then there are the reactions of people: there are those who are so determined to show you they still regard you as a valid human being (as opposed to invalid, which is a word I have always found cruelly inappropriate) that they will engage you in conversation even when you're not looking for it. There are those who, less confident in their ability to strike up a conversation simply smile wanly at me to signify they are sympathetic, yet at the same time acknowledging my existence. I have to say, however, that in my brief experience so far, I have yet to meet those people who simply ignore me.

At one point of the walk, we visited the park for the children present to run off more pent up Christmas energy, and I was able to get out of the chair to stretch my legs and alleviate the slight pain of sitting down. This was the cue for several others to try out the chair, Emma being the first. "Shall we mess with a few heads, Dad?" she said as she climbed into the chair. "You wheel me to the play-park, and I'll stand up and yell It's a Christmas Miracle!"

The afternoon was rounded off with a visit to a small Belgian coffee shop, which offers the best waffles, pancakes and hot chocolate anywhere north of Ostende.

The two main days of Christmas hence were passed with a pleasant lack of anything like an emergency, and an extremely pleasant abundance of laughter and friendship. Just today, Sarah reminded me of how in August, we were both uncertain of whether I was going to see this Christmas, and a conversation we'd had with one of the doctors at the hospital, who'd asked if we'd been given any time-frames for my illness. In answer to this enquiry Sarah had said, we hadn't been told anything, but it felt to both of us that Christmas seemed a long way away. The doctor could only nod her agreement. It seems (as was confirmed during my hospital stay last week), the doctors regard me as something of an anomaly: the number of times in recent weeks Sarah and I have been told "You are doing amazingly well", as well as the more circuitous complement I've previously mentioned from Dr Hall, who said "Very few people have worn this pump this long, David", has reaffirmed my belief - no one can tell me what's going to happen to me, because all they ever have to go on are statistics, and if there is one thing I know for sure about me and my family, it's the fact we are not statistics!

Actions speak louder than words........

Sarah here again..................................

Not posted for a while as it has been a difficult couple of weeks. The hospital stay brought up a lot of emotional "stuff" for me. Wondering if this was the end, feeling on my own, racing between the hospital and home where Emma was poorly and feeling powerless at times in the hospital when things were going badly (just to name a few and there were dozens more upsetting feelings I could name). It was also a time when the true reality of our situation hit me hard - as you all know we do try to be upbeat for as much of the time as we can and make the most of what life has dealt us ,but the reality of actual losing Dave is absolutely gut wrenching for me. I have always felt that we are two sides of the same coin, soul mates if you like and so the thought of a future witout him around is extremely scary. We probably have a lot more to lose than the average couple, many of whom have never experienced this kind of love and affinity however many years they have been together! It is something that is impossible to describe, you can only know it if you have experienced it.

Gradually since last Tuesday/Wednesday I have rebuilt myself and tried to restore my energy a little which was much depleted, although sleeping is still a problem so I am still quite tired. The conversation with Maggie the homeopath was a really good starter as she has such a great listening for both of us. The conversation on Thursday with Caroline our Macmillan nurse was also a great support for me as after a couple of bad experiences in the hospital, I wanted to ensure that when the time comes Dave has as good a death as possible, so we revisited our plans and the support that can be provided to Emma and I when we really need it. Caroline feels like a close friend already and is someone who is so for us as a family and always goes the extra mile to ensure we get what we need. She is also someone who is able to discuss the most intimate and personal of things with us over a cup of coffee and leave us feeling that we are amazing powerful people who can get through this terrible situation - a real "Mrs Motivator!". For me, it is really like having an angel come to visit - apologies to any of you who think that is a bonkers thing to say!

Dr Jones' (our GP) visit on Friday was also a godsend. We have known him for 20 years and he has supported us emotionally through all my miscarriages and ectopic pregnancies to the end point where I discovered that the final ectopic made it impossible for me to have the brood I had always dreamed of. Standing in the kitchen with him last Friday drinking coffee he felt like a true friend who is totally aligned with our plans and what we both want for Dave. His gentle and kind nature are a blessing and support in this situation.

As I think Dave has already mentioned Dr Jones was followed by a visit from "the fambly", a couple of Frenchies, Trevor and Darren who were kindness itself. It was lovely to see them and to feel the comfort of the extended family which is very important to us both. Their visit made a big difference to me personally.

And on Sunday, our friends Howard and Tina drove up from Bicester with a request for some emergency hugs. Howard and Tina are thoughtfulness and love personified and when they are here I feel like someone has wrapped me in a warm blanket. We have known each other 20 years and I have to say they are two of the most healing people I know and two people I know will always be there for me in the future, whatever that future holds. We ate lunch together so I got to partake in another of my favourite activities which is feeding Howard, as I have never met anyone else who takes such pleasure in the activity of eating!

So I gradually came back to life, also aided by phone calls from Helen and Terry in Oz and Kay in NZ who seemed to have picked up messages over the astral plane that we needed a call. We also had visits from my work friends bearing gifts and other friends all of which made a huge difference and have helped me to get to a place where I may be able to have the peaceful Christmas I so crave. And to clarify by peaceful I mean that we relax, rest and enjoy some quiet uneventful time (definitely not that you can't phone us over the Christmas period!).

And as it is Christmas which is usually a time for reflection I wanted to leave you with something to think about. As those of you who know us well will know we do love a philosophical/thought provoking question in this house! A few weeks ago our dear friend Leslie came to visit prior to going off to New York for a month for Christmas to see her family. Leslie's husband sadly died suddenly two years ago and so is very understanding of our situation. Leslie was saying that she had been looking at some dating websites, thinking of maybe dipping her toe in the water at some stage in the future when she felt ready. She looked at the profile people needed to complete about themselves and there were a series of psychometric test questions. The one that had sent Leslie crazy was "It's the thought that counts" Yes or No. 84% of people had answered "yes" to "It's the thought that counts". She said that the more she thought about it the more she thought the "right"answer to this was "no" and she was therefore incompatible to 84% of the population! As she said when you hear this question you at first think the answer is "yes it is the thought that counts" but if you think about it more deeply and for longer the "thought" is never the thing that makes the difference, it is the action that accompanies it. This was brought in sharp focus in my mind the other day by a letter from Uncle Ronnie (Trevor and Darren's dad). The legend that is Uncle Ronnie is 79 and so a little restricted in how he can help us practically, but he wrote us a lovely letter. He probably, like a lot of people, thinks about us a lot of the time, but it is only when we receive little missives like this that we get to know at our end how people are feeling. When we get a letter like that we really feel the love and because of the content we all get a good giggle, particularly Emma.

So to acknowledge the fantastic "actions" people have taken during this difficult time, here are just a few things people have done for us. There have been many many things so I apologise if I forget anything..............and I'll try not to put names to activities to embarrass you

Thank you for:


The letters, emails, messages on the blog and phone calls that keep us going
The visits and taking time to come and see us
The cleaning and the ironing
Help with DIY jobs around the house particularly bannisters and radiators(!)
Decorating (you know who you are)
Food parcels and home cooked meals
Gifts of many descriptions and money
Looking after and loving Emma
Donations to the blog and passing the blog on to others
Listening over cups of coffee (and sometimes glasses of wine!)
Flowers at opportune times
Treating us to going out/entertaining us at your house
Supporting us both in various shapes and sizes at work
Fantastic medical care and caring relationships with doctors and nurses that I had no idea were possible
Sharing your holidays with us or helping us arrange our holidays
Free holiday accommodation (can we post a link to the Manning Tree Bed and Breakfast at Robin Hood's Bay here Steve? - as Peter Kay says "I'm thinking - always thinking" and Amanda no link please to the villa in Lucca don't want anyone else to get to know about it..)
Lending us your house whilst you were on holiday
Travelling the wrong way round the world back to Oz after a business meeting in the US just to see us for a few hours
Praying for us and asking others to pray for us
Writing a song on your new album (sorry Rich but that is so obviously you!)
Massages to try to keep me in good shape
Other treatments and therapies given freely by old friends and new friends
For the visit to the Penny Brohn Centre in Bristol which opened up new possibilities
People getting back in contact who we haven't seen or heard of in years
And for Lovefilm.dvd for sending us the comedy DVDs which have kept the endorpins pumping!

Penultimately, a special mention to an organisation called Landmark Education who run a course called the Landmark Forum. To those of you who think Dave and I are really special people and amazing in this situation, most of it is down to the personal development/human potential courses run by Landmark which we have attended over the years and the training they have provided which enable us to be powerful in this situation. If you want a bit of what we have got do the Landmark Forum. (As an aside special thanks to Nick Andrews for telling us all about it 20 years ago, it has made our life what it is).

Finally, and most important of all, at the danger of sounding too cheesy, thank you all for your amazing love and friendship.

Wishing you all the Christmas that you want for yourself and hoping it is filled with love

Sarahxxx

Visits and Calls

After the visit to Maggie's, and my saying a space seemed to open up for some new conversations to be had, Thursday saw an almost immediate response to that space being created when Caroline, our MacMillan nurse, called for a visit to see how we were all coping with events since the semi-emergency visit to the hospital.

It was so timely for her to call, as both Sarah and I had been thinking and to some extent worrying about what could happen and what the experience of the latter stages of my illness would be like for all of us in the immediate family, and beyond. The conversation with Caroline reassured us both immensely, because it became clear we could choose how to manage my pain, as well as the reactions to it Sarah and Emma might have. What became doubly clear was I didn't want to upset either of them by forcing them to witness any potential decline and loss of dignity, and Sarah was concerned I was able to be cared for in the best possible way, and whether or not she was going to be up to the task. The support available was enough to put both our minds at rest, knowing first of all that any decisions we made (for example, say we chose for me to enter the hospice at the first sign of serious decline) were potentially reversible (so if that had been the case, I could choose to come home to die if that is what we chose to do). Again, I know the topics of conversation do not sound as though they would be a cause of increased levity, but we were both lighter after the visit and relieved to know we would always have the choice available to us, whenever it may come.

The very next day, we had a visit from our G.P., who I believe I've mentioned before, is almost harder to see than the Pope. The fact he was here in our kitchen having a coffee and checking to see we were both OK and well supported was akin to a Royal visit. To have him also check my chest once more, to ensure I had sufficient drugs available over the Christmas period, and to have another home visit arragned for a fortnight's time again left the two of us secure in the fact we were not alone on the medical front. When each day holds the potential for some occurrence which could create a minor panic in me, the knowledge I am supported and Sarah would not be left on her own to cope makes genuine relaxation more achievable, and I felt I'd be able to enjoy the time over Christmas even more.

Then, of course, there is the other kind of essential support which is entirely non medical and at least as important. Our friends locally once again had come up trumps during my hospital stay, both in terms of coming to see me and keep me sane by breaking the dreadful tedium possible in a weekend stay (why is it hospitals at weekends seem to be nothing more than very poor hotels? Nothing medicial seems to happen at the weekends, but you're forced to be there and continue to eat the less than delicious food offerings) and also in terms of making sure Sarah was supported at home by picking up Emma when necessary, and more essential ironing. The calls and checking up on our well being continued through the week, and the feeling of having a safety net provided by them all leaves me once more able to relax, knowing should I be forced into hospital again, Sarah and Emma would always be cared for.

In addition to which, Friday saw a visit from two of my cousins Trevor and Darren, both of whom had jumped on a train at King's Cross to make the round trip in a day. Like all the visits and calls we have had from my vast and wonderful extended family, this one was a source of joy and reassurance for me - any concerns I could ever have had about Sarah disappearing off the "family radar", to be left to live a life of impecunious solitude are always dispelled by these calls and visits. As Sarah said when they'd left, it was like she had discovered two brothers she never knew she had, such was the way the two of them were during their visit. I sometimes suspect our visitors are unaware of the gift they are bringing by merely being there, and if any of you out there are in any doubt about the value of your calls, I want you to know I place great value upon all of them. Yes, there may be little anyone can practically do given the distances between us, but the mere act of calling and letting us know we are in your prayers and thoughts gives me both the sensation of being loved and cared for, and the knowledge that care will continue after my death. Given some of the conversations this week had been about the desire I have for a good death, the reassurance that knowledge gives me I believe is vital to me being able to die without fear for the futures of those I am leaving behind.

For me, then, this Christmas has a very special importance - even more important than knowing it might be my last (because, let's face it, that happens to be true of every one of us) - and it's this: the talk of goodwill and peace and love, which can sometimes ring all too hollow in my ears at this time of year as the country seems to go on a materialist spending fest and a gluttonous booze and food fest, will actually ring true for me with a louder resonance than ever before. I can believe in love and goodwill this year, because it is supremely evident to me from so many sources. I know it may sound trite, and I know it is something I have said before, but that doesn't make it less true or less important for me to say. To all of you: the guys in Australia, the people in Canada, the friends in New Zealand, to HHH in Holland, and all those who are closer to home, thank you for all the love you are giving, and please rest assured it makes a huge difference to my life and to Sarah's and Emma's to experience it in the calls, the visits, and the emails. In case I can't be bothered to get on line again in the days before Christmas, I hope you all have a wonderful time, and may I be bold enough to say if you could think of me Sarah and Emma at the point when you're about to lose the plot over the Christmas dinner, or get annoyed at the member of family who will just not get off their arse to do the washing up, or any other of the normal frustrations associated with Christmas, then may be it won't seem so bad. There will be for me a part of my extended family I will especially be thinking about this Christmas, because although what has been happening to me and my family can be classified as sad, I know I am in fact lucky. Sarah hates it when I say that! But, the harsh truth of the matter is that it is natural for a father to die before his daughter - it would have happened at some point if nature had run its natural course, and I still have the knowledge that both Sarah and Emma will, eventually, be able to go on and live full lives without me. Whenever that natural order is disrupted, true pain results. In fact, there is a Buddhist blessing, which doesn't sound like a blessing at all! It's this: Grandfather dies, Father dies, Son dies. Anything other than that order is a source of true pain. If I get to the stage of wanting to shout at my daughter, or getting annoyed by the fact I can't stand up to eat the next turkey sandwich, I'll be thinking of the people who this year have experienced that true pain, and I'll realise my life isn't so bad at all, and there are still so many things I have to grateful for.

So, I hope you all have a wonderful time this Christmas, and you get the chance to spend it with people you love.

Benefits

Today I discovered the reason for calling things like Unemployment Benefit a benefit: it's because it is a donation or reward for the accomplishment of actually filling in the form, and handing all the information requested on to the government agency dealing with it. I have not claimed a benefit for so long (back when I was a student I think)) I had no idea what it was about. And when I was first diagnosed as terminal, it was the colo-rectal specialist nurse at York Hospital who filled in the forms for the Disabiity Living Allowance, so it was all taken care of behind my back. Having been self employed for so long, the form filling is even worse, requiring things like my last accounts, and (weirdly) any record of qualifications or training, plus God knows what else for both me and Sarah.



Fortunately, once again, Sarah is the organised one and was able to complete most of it without having to ask me questions i didn't know the answers too - like my "What's your name?"



It was actually our visit to Maggie, our homeopathist/White Witch where the genuine benefit of the day was to be found.



After the last week, there have been torrents of emotion in the French household, as you may well be able to imagine. I hinted on the last entry the true cost of my hospital stay only began to become apparent on the day after I came home, when Sarah was so noticeably tired, and upset. Both of us, mind you, are aware enough to know the anger is not there simply because of the stay, or anything that happened during it (even the catheter episode). Sarah is angry because I have an increasing probability of leaving her, and the graphic nature of the sight of me stuck immobilised in a hospital bed for three plus hours as I awaited a competent catheter installer was enough to help her imagination create a technicolour video in her mind's eye of future hospital stays, or days in the hospice, or, eventually, my death-bed. Add a sense of complete powerlessness she experienced in the whole situation and you are going to get someone who is bitterly angry at the injustice of it all, and the inability to just make it go away. We have both talked this week about how, in one sense, we both want it to be over and done with: if the prospects for my last few weeks are going to be a cocktail of pain and loss of dignity, as well as loss of quality of life then speed would be a gift. At the same time we both know we don't want to be separated sooner than is absolutely necessary, and want as much time together as the friends and partners we are, as well as giving myself as much time as possible with Emma, especially during this Christmas time as it may well be my last.


With such feelings, Maggie is a genuine godsend. She listens, and asks us questions about our situation, and allows us to have a third party perspective (which, I have mentioned before, comes through a "spiritual filter"), and offers a new dimension or ways of interpreting all this maelstrom of emotion, and distilling it into something clear, free of confusion. This evening, I was able to tell her the experiences of the last six to seven days have, if anything, made me more present and appreciative of the joys in front of me here and now, whilst at the same time becoming even more aware of the proximity of my death. It's a strange paradox that facing imminent death forces me into the present, and into seeing everything in a peculiarly vivid and intoxicating way, knowing again that my time witnessing the marvels of every day is again probably limited. Sarah was able to give herself some compassion, because with her high standards and expectations of herself, and others, it is very easy for her to be disappointed in what she is doing, or how she is coping. From the outside, over here where I'm looking from, I see a woman coping with remarkable resilience and humour with a set of circumstances which could bring many a lesser mortal to their knees: for thirteen months now, she has been living with my terminal diagnosis, and for two and half years has been living with my cancer. That is an exhausting and demanding period for anyone to go through - add Sarah's desire to make things as easy for me as possible, as normal for Emma as possible, and you've got the recipe for a person who could easily fall into total overwhelm as the situation becomes less and less controllable, and the chances to do things become less and less frequent.


One of the distinctions Maggie brought to the situation today which I found extremely useful was the fact we could be seen as already grieving: we are both going experiencing a time we both know (miracles notwithstanding) will result in her separation from me, and mine from her and Emma, and yet we have not allowed ourselves the time to grieve that loss. It may seem strange to think of grief before the event, but the truth is, we are all of us fully aware of the proximity of my death, and it's being brought into such sharp focus by the sudden events of this last week means we are going to be even more aware of the fact, and therefore feel a sense of profound loss, even though my death has yet to happen. We have over the last months discussed the practical aspects of both the need for me to be cared for 24/7 at some point, and the arrangements for the kind of funeral I want, but we haven't yet really started to say goodbye - obviously because we don't want to, and because it makes it all too real for us to have to consider doing so. Hence, all this emotion and high stress, because we're resisting the eventual separation, or not ready to let each other go.

Believe it or not, after that session, we both left Maggie's in a better state of mind, and a lot calmer. It seemed to give us permission to start conversations about each of us letting the other go - me, because I can't stand the thought of not growing old with Sarah as we were supposed to do, and not being around for the times when a father should be there for his daughter. It is going to be hard for me to do, that letting go and saying goodbye, and I still don't want to be doing it until the very last possible moment, but perhaps it would be less cruel to begin to openly acknowledge amongst all three of us. It still doesn't negate the possible miracle cure occuring, it just allows a potential peace to exist in the time we have left to share together, each of us knowing for ourselves that there is nothing more left to be said, no expression of love left ungiven, and no emotion about the missing years we would have all shared unexpressed. I think that is what grieving actually means, although I don't know for sure: it is the process of saying a goodbye to a person or thing of great value, and usually it can only happen after the event (death being frequently a sudden visitor). I don't think it will be an easy thing for any of us to do, but knowing we can do it if we want to, when we're ready.

Home

After passing the weekend in my monastic cubicle on Ward 16, where I received visitors at various times (including Sue and Amanda, my sisters who made the trip up and home again in a day) I woke up on Monday morning thinking I stood at least some chance of getting home on Tuesday or Wednesday. At about 9.30 a.m., the palliative care registrar, (Claire, who is always a breath of fresh air being one of those people with a bouyant personality) came in and said "I can't see any reason for you to stay, really David - can you? So let's sort out getting you home today if we can."

I was delighted by the news - while being in the hospital on Thursday and Friday had felt reassuring and safe (the proximity of readily available oxygen was something I found increased my confidence about walking further distances, and sleeping a deep and unworried sleep), the weekend had passed so unremittingly slowly that the prospect of another two days cooped up inside was more daunting than going home without oxygen.

All that needed to happpen was, first of all, for Claire to contact my GP and arranged for oxygen to be provided at home some time during the week (and it turns out, possibly as early as Tuesday), secondly for me to be trained in how to inject myself with fragmin and to obtain a supply of it to take home, and thirdly, in order to prevent having to come into the hospital again early next week, to have the urinary catheter replaced.

All went remarkably according to plan, as by two p.m. I was laying on the bed, all other tasks completed, awaiting the removal and insertion of the catheter. The last replacement was, as I may have said, remarkably painless, as it was completed by a nurse on the day ward without complication or fuss. This time, it was the turn of one of the junoir doctors (the same one, it turned out, who had drained my lung of fluid on Friday). Unfortunately, the catheter got stuck on the way out - something which had always been known to be possible, and the major reason for the district nursing team not wanting to tackle it at home in the community. Being a young, and junior doctor, he was, at the onset of the catheter's reluctance to participate, almost immediately flummoxed, and to see him suddenly stand back and almost wince as some blood and discharge made an unpleasant appearance did nothing to inspire my confidence that this was going to be a success. He stopped, and said, "I think we'll get the urology team onto this, as I am afraid this is something a little beyond what I have dealt with."

I was hence left laying on the bed, my middle third covered by some absorbent cotton dressing material, as he and the nurse in attendance made a hasty retreat to the door. Still, I thought to myself, I'll be ready for three when Sarah can come and get me. How wrong was I! After forty minutes, the door opened and in walked a gentleman who introduced himself as "Ben, the junior doctor in urology, here to see if we can sort this catheter out." Whilst his demeanour had more confidence than my previous attendant, the phrase "junior doctor" left me a little concerned yet again, and less and less confident I would be going home at the prescribed time. The fact I'd been laying on a bed for fifty minutes, forty five off them with a catheter half in and half out of my once prized piece of anatomy, and my rear end beginning to hum slightly as the tumours registered their discomfort at being in the same place for so long, was beginning to chip away at my normally chirpy and optimistic disposition. Ben's plan was to remove any fluid remaining in the retinaing baloon at the inner end of the catheter using a syringe, and thereby "with any luck" facilitating it's removal. I looked at the ceiling and prayed for it to work. Ben set about his task, removed a couple of millilitres of fluid, and then gave a gentle tug on the exposed end of the catheter, which refused to play his game and stayed firmly stuck. "Mmmm," said Ben, "I'm afraid that hasn't worked." By this time, I had been in the same position for an hour, as 3.10 p.m. rolled around and Ben looked at the offending piece of equipment with a puzzled expression. "What, " I asked him and the attending nurse, "happens if I want to go to the loo in this state?" They looked at each other in a way I found completely unreassuring. "Um, I suppose," Ben began, "we'd do a bypass." Fortunately, I had gone to the loo as a precaution when the procedure first began, but as time wore on, the course of nature would not be thwarted, and eventually matters would become, literally, more pressing. "The Senior Doctor is in theatre at the moment, but I will have him paged to come and attend to it as soon as he is free," said Ben. "Which will be when?" I asked him. "About four."

Unable to do anything but lie there and wait, I told him OK, and could he please hurry it up if possible. Ben left at 3.20, and a few minutes later, Sarah arrived. I had called her to let her know of the delay, and she had taken it upon herself to come in and see if there was anything she could do to help things along. I have already mentioned her resourcefulness and ability to make things happen in a tight spot, and thank God she turned up when she did. At five to four, nothing had changed, except for me getting more uncomfortable laying in the same position, and my room remaining apparently off limits to anyone who might be able to do anything about it. At this point Sarah said she was going to see what she could find out about the Senior urologist's ETA. As she walked along the corridor, she almost literally bumped into Nick Woodcock, the consultant surgeon who had orignially operated on me in 2006, and who had been a constant follower of my progress and a reader of this blog. "Do you know anything about urinary catheters?" Sarah asked cheekily. She told him the situation, and that I'd been laying on the bed for just coming up to two hours. He said hello to me as he came in, and snapped on a pair of gloves. "It's just got stuck," I told him. Nick took hold of one end of the tube and said, "Most of it's out. There can't be much left in there, can there." And to prove his point, he pulled at the tube hard enough to move it (and hard enough to make me groan and wince with some severe pain). He said sorry to me about four times as he continued to pull on it and removed the thing which had baffled the juniors in ten seconds. Ten uncomfortable seconds, it's true, but the sense of relief afterwards was so great, I did not give a damn about the brief pain. "There, " he said, "got it."

Sarah had been holding my hand through this, and hearing my moans must have felt terrible for her, but the fact the tube was removed and quickly disposed of was a relief to her too, and we were both immensely grateful. "Nick," I said, "You don't f**k about do you?" He told Sarah and I that it requires the confidence to just "give it a good pull!" He threw the old one in the bin - I'd half expected to see a huge bowling ball of tumour on the end, but there was nothing more than a small piece of indeterminate tissue. Before he left I told him, "I'll have to buy you a pint some time." Sarah pointed out that after what he had just done to me, that was not the usual response! The absorbent dressing needed to be rearranged, as some blood was still seeping from me, and that done, Nick left and said he would try to arrange for the new one to be fitted as soon as possible.

Left alone again, I told Sarah how grateful I was she had been able to make something happen - my mind had been thinking I would be heading for surgery instead of heading home, and to have Nick's intervention provided an immediate sense of renewed hope of actually making it home. It was, however, not until just before 5 that the urologist arrived. (We later learned from the nurse who had been witnessingevent all afternoon, he had been reluctant to do it because "the medical team should be doing it. He's their patient." thank God, she persuaded him to just do it as he was here anyway. Within five minutes, and more discomfort (why, I have no idea, as the last time one was inserted it was completely unproblematic, in spite of the lymphodoema complications - it can get so bad as to cause the penis to disappear internally completly, and therefore finding the aperture for the catheter to be inserted through is a little more challenging, being a literal shot in the dark!), I was done. Sarah and I now had to wait just another forty minutess for the fragmin supply to be brought to the ward, as the dispensing part of the pharmacy closed at 5.15. Sarah loaded the car with what she could, and we then awaited the arrival of the drugs. At six thirty, we were out of there - merely three and a half hours later than we thought.

Today, however, the impact of that delay, especially on Sarah, has become more apparent. The thought of me going into surgery was one she had also had as I was lying on the bed in the room, and, of course, the pain she had seen me go through, left her completely exhausted, physically and emotionally. She has had to cope not only on her own since my admission last Wednesday, but has had to take care of Emma (she has had a dreadful cold for the last four days), has had to handle all the emotions without having me to talk to when she needs to, and all of that taken together has meant this has been one of the toughest weeks yet for her. What's more, it's marked an end to a time when my cancer, and handling its symptoms with the pain management and dressings, the skin massages and the regular doctor's appointments, had become almost a routine. This kind of severe interruption is, should things continue to get worse, going to be more commonplace, and, as I think I wrote the other day, heralds a time somewhere in the future when I do not make it home, but get transferred from the hospital to the hospice, or from home to the hospice. The fact Sarah has been able to carry on at all this week in the face of all of it is testament to her extraordinary nature, but she fears she may not be able to carry on this way because of her becoming ill through the stress and worry.

This time round, Claire and Trish have stepped up to help in a way I knew they always would (last night claire made tea for Emma whilst Sarah was stuck in the hospital with me, left a lasagne for Sarah and I to eat, and took away all the ironing to do). If family were closer to us geographically, the load could be greater shared, but at present, Sarah and I are being propped up by hands of friends who are continuously there for us when needed. The fear is, those times may be coming more frequently now. But, speculation about the future is as pointless now as it has ever been, and what's definitely true is Emma has decorated our Christmas tree in my absence and done it far better because of my absence, and I still have a couple of presents to buy and have been delayed by my unexpected respite and recovery. And to come home to both Emma and Sarah yesterday was worth anything I might have gone through in terms of discomfort - I now am just looking forward to a Christmas where we get the time to enjoy each other's company, that of our friends, and can hopefully forget for a few moments each day that this, the doctors assure me, is my almost certainly my last.

Friday night project

Another post sent in by David.

Friday afternoon and I was mugged by two teenagers.

They claimed they were doctors, but you could tell they had both left their hoodies and BMXs downstairs. Fortunately, all they stole was 1.2 litre of fluid from around my lung, which went quite a way to explaining my shortness of breath. As of yet (8.00pm Friday night), I don't know what that has revealed about the tumour in my right lung which will have been the source of that fluid. Neither have I been told any more about the pulmonary embolism, other than that it broke off a larger clot in my swollen legs, and the fact that it should be dissolved by the fragmin injections I will learn to self administer.

Sarah has not long left to go home and tend to our Emma who is herself suffering from a proper cold with aches and pains and hot sweats, all of which prevent her from coming to the hospital in person to visit.

It's redundant to say that it has been a hectic and emotional few days. If things continue as they are, then this will be the first of a few impromptu hospital visits, and hence could be regarded as a familiarisation sessions where we can learn a few lessons, the first of which being NEVER drive yourself to A and E unless you want to be entertained by a corderline psychotic alcohol/drug abuser for several hours. The second is to know beyond all doubt that a procedure you expect to take 15 minutes will take about 4 hours, unless it is the weekend when it'll take until Monday afternoon at the earliest. I am bewildered by the fact so many staff are so deeply committedto the provision of the best possible care, yet allow a system so labyrinthine and counterproductive to govern everything they do.

Right now, I've the time to reflect on the week and once again get clear on the reality of the situation as opposed to all the possible meanings and interpretations I could put on everything, most of which could lead me to believing in a future where I'm dead before the Christmas turkey! Stripped of everything, all that's happened is this: I've had a couple of things I already knew or guessed, namely, I've tumour on the lung and it's produced some fluid. I've been told something I didn't know - I have a blood clot I am told will go nowhere else and will be thinned to the point of disappearance by me giving myself an injection of something called fragmin. Sarah, Emma and I have cried, hugged and talked together about how much we love each other, and I've had a lovely rant in the quiet of my own room about the fact that I don't want to die, I'm far too young, there's so much more to see and do with my life and that I share with my two girls. In other words, we three have been perfect human beings in a set of circumstances which are far from perfect. Added to which both Claire and Tricia cleaned my house today and helped take care of Emma when Sarah came to the hospital. Messages of love have been plentiful to say the least, so once again I feel loved and cared for in a way that moves me to tears. AND never, but NEVER order fish and chips from York District Hospital's menu on a Friday night; arrange for someone to bring you a takeaway instead.

When it's broken down that way, I can once again choose to make this week's experiences mean I am loved profoundly by man people and if love and prayers can move mountains, I am far from being a lost cause. My wife and daughter are loved and loving, and even if I die, will have the personal strength and courage, and the unwavering support of many people, and will therefore eventually be living wonderful lives without me being around or being needed. I know I'll be missed if it happens, but I will not be needed; those two have far more capacity to handle what life throws at them than to need my assistance. However, if I'm called upon or spoken to, I suspect I will be listening and will answer. But that ain't going to happen before its due time, so right now I'm going to enjoy my NHS cup of tea (far superior to the fish and chips) and my new found ability to breathe deeply once again.

Friday night

Phew - if I get repetitive strain injury from all this typing I will have to consider suing my Old Man.......

Just a quick update from me. Since writing this today the doctors have been to Dave and drained off a stunning 1.2 litres of fluid from his right lung. This was a little uncomfortable during the process (a needle in to his back made easier by the use of some lignacaine in the area) and felt a little strange for a while afterwards as his lung returned to normal and reinflated. This evening he still had some pain in this area and was very tired.

We are now piecing together a number of events in the last few weeks. Me hearing a strange rattle in his chest a few times and Dave thinking on a couple of occasions that he had pulled a muscle in his chest as he was getting weaker. Now it all falls in to place.

Emma and I are missing having him around like mad and are hoping we can get him home as soon as possible. It has always been the tradition in our house ever since Emma was really really little that Emma and Dave go out and buy the christmas tree and then bring it home an decorate it whilst I am out of the house. It has been a source of amusement to our friends over the years as Dave has a habit of picking the worst tree on the stand ably assisted by Emma. We have had the almost completely bald tree, the tree that leant across the room at a 45 degree angle (rather than vertical) and the one that was so big that Dave had to lop 4 feet off the top to get it in our old front room. This year to help out Rob is getting the tree for us tomorrow and Emma and I will decorate it, but Emma is insisting that we leave a few decorations and the angel for Dave to put on the tree when he gets home as a finishing touch.

Our roving reporter from his hospital bed.....

This is a piece Dave has written and asked me to post on his behalf.

I took my shortage of breath to the GP's surgery on Wednesday morning. Well, it was do that, or spend the rest of my nights sitting upright and never lying down again. That's how scary the episode on Wednesday morning had been; I was gasping for air, dripping sweat, wondering when i would pass out and die for about 15 minutes. The GP I saw wasn't my usual allocated male but one Helen Taylor. After tapping my chest, listening to my heart and lungs through the stethoscope, he said it was probably fluid in the lung, especially the right (which was weird as on the last scan that lung was unaffected). She recommended I go to A and E and get xrayed, after which they would probably just drain my chest. She also told me it would be fine to go home and gather a few things together, and being out of drugs I decided to do that, call Sarah on the way to meet me at home and explain the situation to her.

The call to Sarah was a hard one for me to make, as I knew it would bring up all of her concerns about going in to hospital, because a time may come when I go in to hospital and never return home. Apparently after expelling a few very loud "Bollocks" in the direction of the nearest wall, she was fine and able to come home - although a few tears meant that she was, from her perspective, driving home through a personal monsoon.

We quickly threw a few things together for me, but no overnight stuff in an attempt to tell the universe I had no intention of having to stay. Quite why I did things so quickly I have no ides, as i should have known only too well there would be hours to wait. Briefly I was buoyed by the fact that there were so few people at A and E and that the nurses behind reception were so understretched they could discuss holidays together. The four and a good bit hours between my arrival, being given a bed, and being told what was going to happen, was due Sarah later discovered, to four wards being closed due to infection.

Three hours were passed with Sarah and I , typically in a situation like these, laughing at the things around us and our own jokes. The first act on show was Raymond, the Unco-operative drunk. He kept trying to get one nurse to take him through to A and E in a wheelchair he's adopted as his own. Then there was Amal, the Over Stressed Registrar; his slight frame looked incapable of supporting a biro, yet somehow he managed to carry on his person two pagers and two mobiles, some patient notes and a permanently surprised expression. Sarah realised that he hadn't read my background notes when he asked the question, "And what makes you think you might have fluid on your lung?" She appraised him of the situation with the swiftness and accuracy of a Wordsmith Ninja. After 15 seconds, Amal was incapable of any real coherance, said "Oh," and popped out of the cubicle to speak to the consultant in charge.

One person whose presence was invaluable was Di Burrell, the specialist Macmillan nurse who has followed my case from the beginning. It was she who through some feat of charm or blackmail, managed to secure me a bed on a ward by 4.30 p.m.. Without her there I suspect things would have been much slower.

It's Friday now and the initial x-ray has led to a further two scans, a Ct and an ultrasound. With there being three possible causes of the white shadow which appeared on the initial x-ray over my right lung, it seems I have been unusually thorough, and gone for all three. So, I have fluid on my right lung, which can be drained (possibly today and tomorrow); I have a small pulmonary embolism on my left lung which will be dissolved by the fragmin injections I am being given daily (and I'll learn how to do this at home) and I have tumour on the right lung (which is the probable cause of the fluid) and there is nothing that can be done about that one.

In short, I'll be here at least another day, and probably all weekend. Sarah has had two days off work in order to be with me and Emma visited on Wednesday night. As this resulted in a "Group Family Hug" (a special invention of ours), where all three of us were comforting, being comforted , and crying, she has not had her opinion of hospitals as awful places changed sufficiently to encourage more frequent visits. Emma has also come home from school today at the end of lesson 2 as she feels tired, is coughing a lot and is running a high temperature.

Sarah's strength and calm are as amazing as ever and at each visit we have been able to laugh and amuse ourselves, even if at times our humour would appear dark to some. We both knew, without the miracle, there would be the odd emergency hospital visit and perhaps one day a visit I will not come home from, but go to the hospice instead. Hence we are both calm and taking things one at a time. I'm certain I will still be at home for Christmas, even though it will be with an oxygen tank in tow, and I'll still be looking forward to my 73rd birthday, as well as the fun I shall be having when I take my miraculous story on the road and tell people how I came to be cured. You see although I have to plan for and anticipate potential cancer related problems in the future, I also have to plan for and anticipate what I will be doing when I survive and go on to live at least another thirty odd years or so. One thing is certain, there will still be training and development in my post-cancer life, because I love it so much, but there will also be new content and materials to present about how miracles can occur. I must admit, that future is far more fun to plan and consider than the one where I have to select the music to be played at my memorial/funeral!

This entry will have to be typed by Sarah which once again goes to show; I have an amazing wife and a stunning daughter and I'm looking forward to going home asap to be with them again.

Some more excitement.........

Hi there. Sarah here again. No, this is not turning in to a takeover bid, it's just that Wonder Boy has been making life even more exciting over the last couple of days to the extent that he is once again tucked up in a hospital bed.

As Dave himself has already mentioned, he has been experiencing some bouts of severe breathlessness which have been very frightening - he says that he has felt as if he is suffocating at times. Yesterday morning he had two bouts and went to see our GP late morning to have this checked out. On examination the doctor said that Dave's right lung sounded dull as if it contained some fluid and that he needed to be admitted to hospital immediately. On hearing this Dave called me home from work and we reported to A and E as instructed. We were told on arrival that there were no spare beds in the hospital and no spare bays in A and E so we would need to wait in the Waiting Room. The medical registrar would come down and see us at some point but there was a likely wait of approximately 4 hours. I was quite upset at this as to be honest it seems ridiculous that a terminally ill patient has to wait to be seen in amongst all the minor injuries dealt with in a Casualty department - especially when they are as poorly as Dave. In the event I got our Macmillan nurse, Caroline, on the case and she managed to talk to a few contacts at the hospital who managed to persuade the Bed Manager to get Dave a side room on the surgical ward where he first went after his original operation. This process took 5 hours but the end result was a good one and I was even more pleased with the result today when I found out that the reason the hospital was so busy was that they are on a "red alert" with 4 wards closed due to the d and v bug norovirus (or whatever it's called). Dave is very pleased to be on Ward 16 as all the nurses still remember him and he gets well and truly pampered even to the extent of them searching the biscuit tin to find him custard creams and making him copious amounts of toast when his ailing appetite does not feel up to tackling the hospital food.

The experience of A and E was like being in an episode of Holby City without the glamour. The poor junior doctor who dealt with us looked as if he had already worked 200 hours this week and was wearing two bleeps and two mobile phones which bleeped and rang constantly. He took an xray which showed a shadow covering a third of Dave's right lung. This was quite alarming for us as the secondary cancers in Dave's lungs which were found last year were in his left lung. The junior doctor discussed the xray with the consultant and they decided to order a CT scan and an ultrasound scan for today to determine what the shadow was. Three possible theories were discussed: fluid on the lung which could possibly be drained off but might reoccur, an embolism (blood clot) possibly treatable or the worst option, a large mass of tumour. As Dave has not had any kind of scan for a year now the thought of how much the tumours may have grown is quite frightening.

The scans have been done today but we have not yet seen a doctor, however from what the ultrasound technician said tonight it seems it may be the fluid option which would, in a way, be a relief as something should be able to be done. In the meantime while we wait for the official results Dave is relaxing as much as he can and has been given oxygen. He slept with the oxygen thingy up his nose last night and slept really well as in the last few days he was starting to get frightened of going to sleep in case he had one of these nasty episodes. It seems as though we may need to have oxygen at home in the future.

Things are much calmer with all of us today. Yesterday was a very upsetting day which ended with Dave, Emma and I all in tears in his hospital room. It is at these sorts of times that we really feel the pain of everything that is happening to our happy little unit and there is absolutely nothing we can do to get control of what is going on. The evening was made all the more traumatic by the fact that a man in one of the other side rooms is dying and has refused all pain relief, so he was screaming with pain most of the time and when he wasn't doing that he was being abusive to the nursing staff. Having seen with Dave's situation how painful pelvic disease can be, I find it very hard to understand any valid reason why anyone would refuse pain relief and die in such a state of distress. I wonder if her realises how much distress respecting his wishes is causing the medical and nursing staff and the other patients.

We will obviously keep you avid blog followers up to date as to what happens with Dave (I've had numerous texts and emails asking what is happening......). I'm sure he will post again soon.

Home Again

I arrived at the hospital to be told I was definitely staying in over night and there was no "possibly" about it. I'd foolishly assumed when I'd been told by the appointment's secretary to bring an overnight bag "just in case", there was some doubt about it! It is the kind of poor communication that can create an expectation which, when its thwarted, leaves me feeling very frustrated. If I'd been told unequivocally I'd have to stay, I wouldn't have been quite so stubborn (well, maybe) about it when Dr. Hall asked me to stay the night at the hospital to be observed. In the end though, he won out by resorting to emotional blackmail, and saying "What if your wife can't wake you in the morning, because your blood pressure has gone so low you have gone into a deep faint?" That swung it, and I settled to my fate with a reluctant inevitability.



The procedure itself went without a hitch, as usual, and the addition of clonidine (2mg) in the solution, soon showed a marked improvement in the level of pain control. So much so, in fact, I was able to lower the hourly rate to 4.5 ml, and reduce the booster dose to 5 ml. It means, of course, there is a little more pain control in reserve now (the clonidine can be raised again, without an overnighter this time, as well as raising the other drugs), and that is very comforting to know as the pains do seem to increase every week to the point where, after a fortnight to four weeks, some additional action is necessary. It also means I can go back to a fortnightly change of cassette, as the volumes I am using mean it will last much longer now. So having to withstand the Turkish Sauna heat of the hospital ward at least bore some fruit.



In order to check the clonidine was having no adverse impacts, I was monitored hourly with my temperature, blood pressure and pulse rates being recorded, and they all stayed pretty much normal throughout the 20 or so hours I was in. The only slight cause of consternation for the nurses was when they took the stats at 6 in the morning, and it showed my pulse rate to be high (over 100 in the lying position) and the percentage of oxygen in my blood to be low (normal would be 96% and above and at 6.00 a.m. today it was 84%). This is the time when, for some reason, I get short of breath even lying down. It's strange, because most of the day I have to actually do something, like climb a flight of stairs, for me to get out of breath, but there is something about my having laid down for an extended period, or having had several night time boosts of the drugs, which results in my experiencing shortness of breath. The first time it happened (about a week ago) I have to admit to being a bit panicky, wondering what was going on and if I would die there and then. But now I know it passes, and if I stand up it goes almost immediately, I'm not as frightened by it. The nurses this morning, however, were. It was amusing to hear the nurse be reassuring with me, and then hear her in the room next door saying, "Mr. French's stats are TERRIBLE!" I'd also mentioned the fact I am due to have a change of (urinary) catheter in two weeks, and wondered if they could do it whilst I was in overnight, but this level of flexibility was beyond the NHS, a behemoth much like an oil tanker - unable to change it's course rapidly and having to go through a few hundred pieces of paper to even stand a remote chance of accommodating something as simple as a time saving idea from one of its patients.

Still, I know I will be contacting our GP later this week, and I'll arrange the catheter change then, and see what might be available to ease the shortness of breath in the morning.


There was one thing I noticed particularly, being in the hospital surrounded by ill people. I, strangely given my diagnosis, don't look ill! Yes, I have my little attachments, but only the thin catheter tube from the pump into my side is remotely visible; the bag containing the pump could be mistaken for a strange "manbag" fashion accessory, but everything else is hidden from view. I could see the other patients in the ward looking at me and thinking "What's wrong with him then?" as to external eyes, I am nought but a shirker, occasionally reaching for a walking stick in an attempt to try to appear really ill! The facts are a little different, a point brought home with great simplicity by Dr. Hall during the cassette change yesterday, just after he told me the addition of clonidine was a rare occurrence. "You have to realise," he said matter of factly, "very few people get to this point. You have already been wearing this pump for nearly six months now, and to tell you the truth David, you're almost setting the record for the time you've been able to wear this." I looked at him, and checked I'd got the full meaning of his message - i.e. most people using the pump system have died long before they reach this point - and he looked at me, raised one eyebrow, and as this was part of his influencing me to stay overnight, went straight for the jugular thereafter with his statement about Sarah being unable to wake me.



It reflects too what Dr. Anne Garry said a few months back now, once to Sarah and I and once to a definitely hungover medical student who was facing the prospect of viewing my cratered bum with nauseous trepidation. To Sarah and I she'd said, "You have to realise, we are at a stage with David's health where any number of things could happen in a very short space of time, and he would deteriorate terribly quickly." To the pale faced student she said, "If you saw Mr. French in the street, you'd think there was nothing wrong with him. It's only when he's undressed do you see the full extent of what is going on - colostomy, two catheters, swollen legs with extremely dry and disintegrating skin, tumours throughout the groin, and high levels of very strong medications being required on a regular basis."

It's that kind of pep talk from the doctors I could, in all honesty, do without.

Now with the new pain control in place, I can foresee Christmas being far easier than it would otherwise have been; I'll probably be able to get out in the wheelchair more easily, and we could the three of us perhaps fit in a couple of our own Christmas traditions, like Christmas Eve in Betty's, and a Boxing Day walk by the seaside somewhere on the East Coast. I might even be able to stand watching that Christmas M&S advertisement where Take That and a bunch of super models have a truly fabulous time in their little country mansion pied a terre, being all Christmassy and jokey together, playing charades and walking about in revealing M&S underwear. My Christmas may not hit such heady heights (and I hope not), but I think I can dare to hope for at least a time when we'll all be able to spend a trouble free few weeks together without work worries for Sarah, and with me being a lot more comfortable.

For the last several years, we have attended a carol service held in York Minster for the charity FSID, which is the "Foundation for the Study of Infant Death". Sarah has mentioned the names of Trish and Rob, two very good friends who lost their first son at 17 weeks, just before Emma was born to Sarah and I. Today, for the first time, I was driven to just a few yards of the Minster, both because I cannot walk too far, and because of the cold. Sarah and I walked into the Minster together, and made our way to the nave, where the carol concert would be held.

The service has always been a moving one, as the theme of cot death, and the loss of a child naturally creates an emotional atmosphere, and one in which we all share a time of reflection together. The readings are always evocative of love and loss, and the sermon is one usually reflective of the support to be gained through loved ones, family and friends, and of course, faith. It has also been poignant to Sarah and I because of the number of miscarriages we've had, all of which are to me and to her, a child lost but never seen. For each and every one of Rob and Trish's friends, there is something to the service relevant to them and the number of tears shed over the years by all of us during the service could, I am sure, have created a small salt water lake. The fact it takes place in the minster is another factor in creating the unique atmosphere of contemplation and reflection I've always experienced in the service, and, as Sarah puts it, the minster itself is the kind of place that could make a Christian out of an agnostic.

The sermon this year was again about love, and support, and the places in which a person who is going through grief and loss can find solace, and how in some situations, words cannot express what needs or wants to be said. One quote I found moving in particular, attributed to St Francis of Assisi: "Go and spread the gospel, by words if necessary." For me, it was special because so many people I know, and have met or spoken to since the very beginning of my illness, have all, I know, wanted to say something of comfort, and yet for some of them, it is hard to know what to say. Many people are uncertain of how to be around a person who has cancer, and can, as a result, end up tongue tied, or speaking about something else entirely, or laughing just that little too loudly, or becoming ill at ease when a silence comes along in the conversation. Until my father became ill with cancer, I think I was one of those people who would be a little tongue tied around the illness, uncertain of what to say or do, of how to be. I know I just wanted to help in any way I could, to say something that might at least offer some comfort, or just to let the other know I was hoping for their recovery, but I also know I was a little scared of saying the wrong thing, or being insensitive, or just making a cock up. The one thing you'll notice about that is the concerns I felt were all about me! So I used to be this person who, through fear of embarrassment, would finish up avoiding the subject or skirting around it, or, at most having a very brief foray into the subject with a "How are you?" (usually asked in the hope they would say "Fine" and we wouldn't have to talk about it anymore!)

After my father's illness, I was able to face cancer more realistically, by which I mean with a greater concern for the person with the illness than how I looked talking to them about it. By the time Sarah's mother was diagnosed, I was much more able to just be with the fact of her illness. In fact, for reasons I have forgotten, I was the only member of family there when she found out she had cancer - she was given the diagnosis in Reading Hospital, and I recall vividly how taken aback she was, and how much she could not believe she could have got the illness, having lived a life free of alcohol almost completely, of smoking, of any excess of any kind whatsoever. I know for a fact, I did more by just being there and holding her hand than I could have done with a thousand words, no matter how perceptively, or wisely, or appropriately chosen those words had been.

I know it even more now.

I know by merely attending the service today, as we have in many years past, we all of us are expressing our love and support for the two people who have lost the most precious thing one can lose. I know when I hug Trish to say hello at the service, she is being supported in the way a thousand words could never provide.

This year, I was also aware of the strength and depth of feeling for me and mine and Sarah's situation, although not once was my illness mentioned by any one of our friends. That is the way it can be sometimes with love.

Tomorrow, I'll be in the hospital, having my cassette changed, and possibly staying over night. I'll also have to mention my increasing shortness of breath, and the pains I sometimes get in my left hand side - the left lung is where the lesions were a few months ago - because I am concerned perhaps while the attention has been focussed on my ever more ugly rear, the unseen tumours in my lung may have been partying away unnoticed, ready to spring a surprise on me.

But, whatever happens, I know beyond any shadow of doubt, I, and my family, will be cossetted and supported by friends and family, even though it may be silently, and from a distance.

Conversations with my daughter.......

Hi there. Sarah again. As Dave has already mentioned I had an extraordinary conversation with Emma over tea at Bettys the other night. Although if Emma reads this she will probably be really emma like and say "what do you mean extraordinary mum? it was just a conversation". Because Emma doesn't know anything different she has no idea of how extraordinary our level of communication is as a family compared to other families. Dave and I know how amazing it is because we have plenty of prior years experience of communication in our own families and how in the Olden Days important things were definitely not talked about and often brushed under the carpet!

In my communication with Emma over Dave's illness I am often torn. My commitment is to be open and honest with her and include her as much as possible in what is going on. However my maternal instincts also have a pull which is to try to avoid her suffering any upset or hurt in her life. I wanted her life to be perfect without any nasty traumatic stuff (clearly impossible in the long term but I had hoped that she might at least have made in to her twenties without anything terrible happening). And, in truth, this is probably my worst case scenario. My reason for saying that is that as Dave has already mentioned my dad died when I was 4. My brother was nearly 16 when he died and I know from conversations with my brother and my mum what a terrible impact my father's death had on both of them.

Anyway any attempts to wrap Emma in cotton wool for any length of time are clearly impossible in this situation and to lie to her would have far worse consequences, so I tend to take her questions as they come and answer them as honestly as possible without frightening her too much. I think it is fair to say though that my heart is often very much in my mouth when we are talking about Dave. We talked a lot on Thursday about her dad was doing at the moment and the symptoms of his illness that were currently causing the most problems and impacting on his everyday life. She said that "he looks so well most of the time" that it is hard to realise how ill he actually is. I explained that he is very ill and that he does try to avoid her seeing the worst bits of his illness as he loves her so much and doesn't want her to be upset. I also explained that cancer is a cruel illness in that people can look really well and then suddenly have one thing like an infection or another serious symptom that can cause them to deteriorate rapidly. I said to Emma that whilst we hope that this will not happen for a very long time, we need to be aware that it could suddenly happen and that if it did we would need to be a real team and look after each other (with help from family and friends).

She was extraordinarily brave in the conversation and asked lots of questions. She wanted to know where her dad would be when he got really ill i.e. at home or in hospital. I explained that the doctors had already asked us about this and that we hoped that her dad would be able to stay at home for as long as possible and that I would nurse him, but that I would need help from some nurses and doctors that would come to the house and might even stay overnight sometimes so that I could try to get some rest. I also explained that because we were not sure what would happen with regard to the illness, Dave might spend some of his final days in the hospice and I explained the difference between the hospice and a hospital.

We also discussed the randomness of life (quite deep to discuss with a 14 year old) and how unfortunately very sad things sometimes happen and often to the most wonderful of people. I gave her a couple of examples (which I cannot list here for confidentiality reasons) of fantastic kids in my school who have already suffered some very severe hardships - in a couple of the cases multiple hardships. Life definitely does not come with any guarantees which is why I think we just need to live it to the full whilst we can. And these kids I mentioned who have really been through the mill are already amazing young people (soon to be great adults) who I would much rather have than the more spoilt middle class cotton wool kids who have no idea what privileges they have in their life and constantly complain about the current "dramas" in their life.

One of Emma's final questions (as I think Dave has already mentioned) was "What is it like to lose a parent?". She wanted to know how it was for me when her much loved and adored granny died. I said that I had been very sad at the time and for some time afterwards, but that my mum's death had been easier to bear because her granny had been 79 and so it was in the natural order of things that she should die before me. I said that Dave's potential demise is not in the natural order of things because he is so young and so it would potentially be a lot harder to take. At the end of the conversation a few tears rolled down my face which were directly related to her sheer bravery and courage in the way that she talked to me and she duly passed me her serviette (as usual we had no tissues when they were needed) and she sniffed back a few pre-tears and watery eyes. And then as always happens in these situations we returned to the mundane. Paid the bill and duly went to M and S to buy some much needed milk for a cuppa when we got home.

I was very glad to have had the conversation with Emma as one of the things that has been worrying me is that Dave could suddenly deteriorate and how scary this could be for all of us. One of the things that disturbs me about cancer is that people can look really really well just before they die. A few years ago I knew a very brave lady through my work who had breast cancer. The last time I saw her was at a mutual friend's 40th birthday on a Saturday night. On the night you would not have known that she was ill other than the fact that she went to bed slightly before the rest of us and on the following Thursday she died leaving a lovely husband and gorgeous young daughter. And who knows what we will be facing in the coming months. New symptoms are developing all the time - today Dave woke at 5 a.m. with a high temperature, bad pains in his chest and a shortness of breath. It did all go away after a period of time but this is obviously a new thing for us to worry about. The Cancer Rollercoaster always keeps moving and never stops so you can get off and rest for a while.

So a remarkable night with Emma and a conversation I am very glad to have had - I am sure there will be many more like that between us Frenchies. I was pleased that she seemed lighter on Friday which I attribute to having the opportunity to discuss some of her fears and worries wih regard to the future.

The conversation with Emma left me thinking about my mum on Friday and just how much I miss her! When my mum died I clearly remember the sensation of being "orphaned" and suddenly very much on my own in life with no member of the older generation to fall back on. My family is very small and because she was the last of her generation to die, I now only have my brother and a small handful of cousins on my side of the family. My mum and I had a very intense relationship as after my brother left home when I was 6 we were on our own for most of the time barring when Steve came home for college holidays - although even this stopped when I was about 10 and he moved in with his girlfriend and later wife Linda. My mum and I often resembled a married couple in my teenage years, making decisions about the house like choosing wallpaper and decorating together and later on going on holiday together. The relationship was very intense at times as my mum was quite a strong character (as those of you who met her will recognise!) and as am I, so we did have our ups and downs, but she loved me absolutely. Had she had the opportunity to be around now, she would have been up here looking after us all, cooking and washing and doing any other chores we needed. Still, in another sense I am glad she is not around as it would have broken her heart to see this happening to Dave as she loved him so much. She told me once not long after we had married not to come running home to her if things went wrong as if they did she knew it would be my fault (as Dave was so fantastic!). Whenever Dave arrived at her house to see her she always got a little spring in her step and enjoyed his gentle teasing and mocking of her country bumpkin accent.

And thinking of my mum also led me to thinking of other people not around now that I really miss like Dave's Dad Chas who would have been a huge support had he still been around and who would have done his best to soften some of the worst parts of this situation and bombarded us with love and my favourite auntie, Joan who was a surrogate grandma to me throughout my life who sadly died just a month before Emma was born and who would have given me a cuddle when I needed it. I can only hope that all these characters are somehow watching over us somewhere along with the other relatives and friends we have lost over the years.

Mostly about Emma

When my daughter was born, there was a song by "The Artist Formerly Known as W****r" playing on the radio a few times every day, "The Most Beautiful Girl", or something like that. Whenever it came on the radio, I used to tear up (in my pre-cancer days, I was much less of a cry baby). She was premature by a few weeks, and hence very small and immensely fragile looking, even for a baby. On top of which, Sarah and I had, by this point, experienced two miscarriages, one of which was an ectopic, and even during this pregnancy there had been scares, including Sarah having high blood pressure and odoema, creating the need for the birth to be induced and Emma to be premature. Needless to say, she was and is very special to the pair of us.



Last night, she and Sarah went into town for some late night Christmas shopping, and for Emma to collect a prize she'd won. There was a competition arranged by Borders book shop to design posters for the new J. K. Rowling book, and Emma had won - out of all the schools in York! She was chuffed to bits (almost as much as Sarah and I). The two of them also stopped off at Betty's, York's famous tea shop, and during their mini-celebratory tea, the topic of Yours Truly came up. I don't doubt Sarah will mention it at some point when she next writes a post, but from what I can gather, Emma and she discussed the current state of play, and what the future may hold. When Sarah told me snippets of the conversation, my pride in our daughter was almost as great as my sadness for her having to come to terms with such a set of circumstances as this. Emma, aware as she is of the cancer and the terminal diagnosis, asked how long I might have, and Sarah answered honestly: we don't know, but we do know he has been getting less mobile and experiencing more pain. Emma asked how it felt to lose a parent, and at first, Sarah thought this was referring to her loss of her father when she was four, but no. Emma meant what had it been like to lose her mother a few years ago. Again, Sarah was honest, "It was very painful and very upsetting, but something I came to terms with. Although this is a lot harder because it's not in the natural order of things for Dad to be facing death so relatively young."


You'll recall I mentioned how Sarah is far more than most people recognise her to be? The same, I believe, is true of Emma. This is the girl who, when offered counselling by our GP, said to both Sarah and I, "Why would I want to tell my problems to some middle aged woman I don't even know? That's what I have friends for!" This is the girl who, when I left my drugs in that Florentine taxi, told me everything would be fine, and when I began to wonder if I'd even remembered to take them off the train, told me, "You definitely did Dad. I can remember seeing you wearing your rucksack when you came out the station." Later, when the drugs had been found and returned, she told me, "I was lying. But you looked nervous, so I thought I'd better reassure you." It's the same girl who came home from school one evening, and said to me, "God, Dad. Some people can be so full of (may I swear, Dad?), shit! There's me, dealing with your flippin' cancer, and there's some girls at school moaning about not getting an email from a boyfriend, or developing a zit, or being upset about what is basically NOTHING!" And this is the girl who came home after her evening with her Mum in town shopping, and eating out in Betty's, shed a tear or two with her Mum, who beamed brightly at me as I opened the door and proceeded to entertain me by showing all the things she'd won in the prize, and some of her new clothes (an early Christmas present so she can wear new things to any Christmas do she or we get invited to). Anyone who has taken the time to get to know Emma can see how remarkable she is. Not just bright, as many kids can be, but also with a great emotional maturity - something she is having to develop, I guess.




As I say, perhaps Sarah will more accurately relate the conversation, and give a greater sense of how Emma is coping. Emma may well write her own post soon, too.



In comparison to the news of my daughter's conversation with her Mum, anything else seems quite banal, but I shall tell it anyway.

I was asked yesterday to bring an over night bag to the hospital for the cassette change on Monday, "just in case you have to stay in while we monitor if the new drug has any side effects." Given none of this had been raised by my doctor when the chlonadine was first mentioned, I wondered what on earth this new wonder drug I was being given could actually be. So I looked up Chlonadine on the web, and discovered it to be a drug used to control ADHD, used when ritalin alone isn't doing the job. Well, that was reassuring: it's good to know I won't be disrupting class any more. I suspect it is a nerve agent drug, similar to the amytriptyline I am given to ease the nerve pains at night, and being a nerve agent, may cause some side effects in terms of my cognition and alertness. I'll just have to wait and see on that front: Monday will come soon enough.

I've also been measured today for a self propelling wheelchair, as whilst I am still able to walk (sometimes needing to use the frame) covering any distance is just too time consuming, and the chair will allow me to spend time going into town or "walk" along the beautiful riverside path with Sarah or Emma pushing me. I am no longer at all bothered by needing the chair sometimes, and when Emma had asked Sarah last night what it would be for, and was told "just to help us take him along on trips where he couldn't walk as far as we could", she was fine about it too.

I'd asked myself a simple question a few weeks ago, and the response I had to the question sums up the situation I find myself in these days very succinctly. The question of a few weeks ago was this: "Blimey. How ill must you be for the doctor to tell you that passing blood in your urine is nothing to worry about?" [I should tell you, it's just due to the location of the prostate tumour that some blood will inevitably get into the catheter tube via the bladder] The answer is, of course, as ill as me! So now, I have a very ready answer to anything new thrown at me: "How ill must I be to need a wheel chair/walking frame/mind altering drug/spinal catheter giving me pain relief/ permanent antibiotics/ etc., etc." As ill as I am. Stops a lot of worrying, don't you think? Much less time consuming than wondering why, or thinking "this shouldn't be happening to me."

Quality of Life

On Monday night, Sarah asked me this question: "What's your quality of life now?" Hmmmm, I thought. "It's just that Julia [one of our friends] said the other day that she thinks she'd have thrown in the towel by now, and doesn't know how you keep going." The quick and abbreviated answer is, "It's great! " And I wanted to tell you all why.

I know I've taken sides with Miles Kington on the whole "When you have cancer..." thing, but I'm going to start with an amended version of that preface, and I hope the difference in it will allow me to be found not guilty of prattish pontification!

Since I've had cancer, I have noticed a couple of things, and they are, to me, the things that give my life at least as good a quality as it ever had before I became ill. The first of these is an appreciation of what a moment by moment miracle life is. I know, I know. It sounds bloody trite, even to my own ears, but I don't mean it in an airy-fairy fantasy fashion, or in an intellectually appreciative fashion. I mean (and it's something I find hard to express in words) I find myself frequently aghast at the sheer impossibility of the whole of life on the planet existing, and the fact that it does (exist). It seems to me I have been so absent mindedly living my life in the days prior to my illness that now I am shocked at how, number one, unlikely it is that life should exist at all and, number two, how privileged I am to have been given the opportunity to experience it! I wish I could say I feel vital and constantly vibrant in the prescence of all this miraculousness, but, most of the time I feel a bit too knackered to be wide eyed in constant awe, speechless with the wonder of it. But I do have this sensational appreciation of how bloody marvellous being alive is.

And if that one sounded trite, then this one I should be shot for! The second thing I've noticed is the mindboggling amount of love one person can experience. And I think it's related to that "concertina" experience of life I mentioned the other day, where the highs are high and the lows can be really low. The intensity of life lived like that means love is magnified like everything else. For example, I have never, before a few months ago, cried at saying goodbye to a friend, or at a news reel, or at a suprise gift. Now it happens with regularity: the time I left Nick at the station, I cried; when I heard of the life of Baby P on the news, I cried with the pain and horror of it, incapable of understanding how anyone could be so devoid of love and appreciation or valuing of life to be able to do something like that to another human being - especially a defenseless child; when I heard of a friend's business colleagues raising finds for a children's cancer clinic in Nepal which had to treat children without drugs of any kind (including pain relief), I cried because I couldn't imagine how anyone could live with the kind of pain I experience undimmed by morphine; and when I received a gift today from one of my aunts and uncles, I cried with the love behind the gift. It moves me to tears now as I write about it, because the love they are expressing is so present in the gesture.

And so, if anyone asks me about the quality of my life, you can rest assured that it is absolutely the best it could possibly be and has ever been. People seem to think I am doing some kind of great job in the face of a terrible illness and tough physical circumstances, because the messages I've been sent, and the calls I've taken, and so on, have all in some way referred to my being brave, or being remarkable, and, whilst it's lovely so many people might think of me that way, I have to say, it's not really true. I'm not brave, and although I have some pain, I am not being superhuman about it by any means - ask Sarah, and she'll tell you, I frequently groan with it rather than stoically suffer! I'm happy with my life because I am really happy with my life!

The thing is, I also know that it is very different for Sarah. I don't mean her not appreciating how great life is and can be, but I know for her, she is facing a possible future that leaves her life empty of someone she loves absolutely. I'll say it again, and again, and again: cancer is not as hard for the person going through it as it is for the person who loves them watching them go through it. I am not being the brave one here.

He was a Skater Boy ...

Today's cassette change went without a hitch again, and Dr.Hall has increased the morphine level by another 50mg to 250mg in the cocktail, with the aim of easing some of the pain that had been breaking through. He's also devised a method of hopefully increasing the pain relief without adding to my immobility! Apparently, if he adds a drug called cholonodine to the solution, it will work with both the morphine and bipuvicaine to increase their effectiveness, but, somehow, not increase the tendency of the local anaesthetic to turn my legs numb and leave me with the mobility of an upturned tortoise.


In the hospital, Sarah and I bumped into the surgeon who'd done my original operation in November '06: the one I said to Sarah at the time looks more like a Skater Boy than a consultant surgeon, he seemed so young to me. His concern and interest today was so genuine, I was reminded to put onto the record books the fact I have been so impressed by all the clinical staff I have encountered in the NHS. They have all been genuinely motivated and interested at every step of the way, and their concern has always been apparent. With Nick Woodcock (Skater Boy) especially, as in one of our meetings last year, he was actually moved to tears.

The walking frame arrives today, too, so when I do reach the point (on about the third or fourth boost of the day) where I cannot walk easily even with the stick, I'll at least be able to gingerly get about without feeling I am going to topple over - a danger made ever more plausible by the presence of our beloved Hermione, who has taken to walking around my feet at the most inconvenient of times, seemingly determined to bring me to the floor in order to have something soft to sit on, or to berate me for not filling her food dish quickly enough.


The fact I may not need further increases to the concentration of the bipuvicaine has been an oasis of good news in a seemingly endless vista of declining functionality for me. It even softens the arrival of the walking frame, knowing I will not necessarily get to the point where I have to be using the frame or chair all the time. Now the frame is just a useful piece of equipment, and not another step on a slippery slope towards the time when I might be bed ridden and permanently sedated.

I find thinking about "declining" quite difficult, because it seems to go against my belief in me being possibly cured, as I know for some people the mere thinking of something as a possibility is akin to bringing it on oneself (I know a few positive thinkers will be reading this blog, and, for some of them, thinking one negative thought about my illness is tantamount to suicide!!!). I can see it differently, though, because the small amount of time I devote to the planning for the possibility of my death and the steps towards it is much smaller than the amount of time I devote to the visualisation of my future: like watching Emma's graduation from university, or my 73 rd birthday (why 73rd, I don't know; it's just one that struck me as a good one to concentrate on).

Apart from anything else, behaving in a manner which doesn't admit the possibility of my death would have people looking at me most oddly (and even now, the fact I can still stand for being well again has a few people a bit baffled - especially anyone who has seen me in the grip of a bout of pain from the tumours!). It would just deny the reality of my situation now, and put me well and truly into cloud cuckoo land.



I say I can still stand for being cured, but at the same time, I have no idea about how the miracle of my cure would happen. I think my being open and available to its possibililty is a very important element of it, but the method of its occurrence? Well, I am entirely clueless. I love some stories about similar occurrences, though. One of our friends told me of a guy who'd watched Tom and Jerry videos for a few weeks after he'd found out he had cancer, and it disappeared. I tell you this much, if laughter is part of the cure, I am already quids in! Then there was a guy whose story was reported on a website Sarah visited called Beating Cancer Gently.com. This site was set up by a man who witnessed his wife's death from breast cancer and, determined not to let her death be meaningless, he researched all the methods of cancer treatment (both "normal" and complementary methods) which seemed to have some curative results, and he put them all on this website. He is clear and up front about his not being a medical person, but the information he has put together is phenomenal. Anyway, there was this story on there of a man who had even gone into a coma, he was so far gone with his cancer, and he reports seeing his body lying there and, as in a lot of those Near Death Experience reports, he saw the light at the end of a long tunnel accompanied by an overwhelming sensation of love. He says he was told it didn't have to be his time, and the next thing he knew, he was out of his coma, and all his cancer was gone. I know "miracles" are not everyone's cup of tea, and perhaps some scepticism is a healthy thing to bring to a situation like mine, where people can become so desperate to find a cure they can become susceptible to any charlatan or shaman out to make a fast buck from their desperation. And, at the same time, I know there are people reading this blog who believe in miracles 100%, and have seen them happen. I know for a fact, Sarah has gone through so many web pages her head began to spin with the number of "miracle" cures, and the variations of approaches, all of which are reported to have produced verifiable results. Many of these "cures" are contradictory - one saying do one thing whilst another says you must never do the same thing. And of course, all the people peddling their answer want to tell you theirs is the right answer!



The whole thing is so baffling, and the number of variations so great, that no one can be certain which to trust. That having been said, the Beating Cancer Gently site has distilled a number of approaches, and offers a very objective and unbiased assessment of the "treatments" including assessments by the scientific community where available, so a cancer patient can assess and attempt to intuit what approach may be the one for them. One I have seriously considered is the grape diet: it should be immediately counter intuitive, because cancers love sugar! That's because a cancer is nothing more than a rapidly dividing and growing set of cells requiring a great deal of energy to continue to grow (hence people with cancer being very tired a lot of the time). Red grapes, however, also contain a chemical toxic to cancer cells. Hence, the sugars in the grapes get to the cancer rapidly by virtue of their energy consuming nature, and then the additional chemicals kill the cancer off. It's reportedly had some success. The biggest downside for me is, being a colostomy wearer, and grapes being an emetic ... well, let's just say it would be a potentially very messy and smelly way to survive. I'd also not get much sleep, as the effects would be twenty four hourly, and you have to keep this diet up for at least six weeks! Still, it may come to that one day (though I tell you, I earnestly hope not!).

I know this much for certain: if prayer works, or makes a difference to the outcome in my case, I am definitely going to get the miracle - there are so many people praying for me, of nearly every major religion, I must be very near top of God's "to do" list by now. If love makes a difference, then I'm also onto a winner, because Sarah and I are getting so much of that given to us that I can feel it around me day and night!

So, who the hell knows? If anything is possible, then so is my small miracle. It's not that I am scared of dying (I've mentioned that in the bit on attitude on one of the earliet posts): that's not the reason for beleiving in the miracle. I simply believe in the miracle of surviving, at any time - although, as Sarah says, I wish you wouldn't take so long to have the miracle happen! If it's to happen, it will do so in its own sweet time, and will not be rushed.

In the meantime, I'll just sit back, and as much as possible, enjoy the ride.