17 May, 2009
Things are moving on, and it is time for a new diary. On the medical side…..(I will leave this to the bare minimum)……The first drug trial didn’t slow the advancement of the cancer, and in fact the review of recent scans has shown a stronger profile of a new tumour on my spine. They were planning to begin the 2nd trial, but I had a strong reaction to the chemicals, and there is also now a better chance to slow the advancement by attacking the new spinal tumour with a procedure called a ‘tumour block’. Previously this didn’t seem a possible option because the scans were not conclusive. The second tumour is close to the spinal cord, so they need to be careful about collateral damage. So, I spent a few days in hospital getting back to normal levels of kidney and liver function and building stamina. Now I am at home doing the same. The tumour block should be completed in a week or so pending availability of the surgeon. If that helps my body adjust to the pain levels and build strength for further drug trials, the oncology team have some further treatment trials up their sleeves.
I suppose what has opened up before me in the last few months is the sheer breadth of the cancer world…..the researchers, the drug companies, the medical staff, the patients, hospital administrators, etc. and likewise the range of mental states and interventions one has to prepare to make an impact against this disease. When I am at the Marsden Hospital, I am drawn into this world and I greatly admire all the effort and time the staff put into tackling cancer. We are all in the dark, but committed to learning and keeping our heads above water. And this is a powerful experience living it day by day.
Then there is the transition back to home. This seems like real life with friends and real experiences, and for a time cancer can be put behind me. Here it seems possible to ration the ‘cancer thoughts’ because there are so many distractions, and I like to be able to plan a future that includes work and more activities for the healthy me to be getting on with.
Many of you reading this will have also attended the Festschrift that my Tavistock colleagues organised for me on 1st May. Beforehand, I couldn’t imagine what it would be like to have so many people representing different aspects of my life together in one place. I wanted some liquid amber to pour over us all so the event would be preserved forever. It’s just sad that life moves on to its inevitable conclusion whatever that may be. I think it was just that juxtaposition of the ‘work me’ and the ‘personal me’ that had such a powerful impact on me and left me with so many new associations and memories that it will take me months to work though all of them again. I was also struck by the richness of the language…the examples and metaphors and poetic images that people chose to express themselves about my life. This was very moving and I expect this aspect will be very comforting as I face the next chapter of my life. Thank you again to all of you who took part.
If you'd like to see Briony's photographs from the Festshrift please go to this link: http://gallery.me.com/brionycampbell#100192
You will be asked for a username and password - put david (no caps) for both and you will be able to view and download all the images. It's easier than it sounds!
That should bring all of you up to date for the next month. Enjoy the spring blossom.
Love David (and Jane)
Monday, 15 June 2009
Bile Duct Diary XVIII
8 April, 2009
Well, life certainly isn’t designed for certainty. Today I got the results of the scans that were done earlier in the week to determine the effectiveness of the recent Reovirus drug trial. There has been a small progression of the cancer on the spine when compared to the scan done in February, but there is no sign of cancer growth in the abdominal area where there was pain previously. This means the medical team want to discontinue the drug trial and try a new one. They have a couple of others up their sleeve, based on different biochemical interventions, that they will consider over the next few days before they decide and make me a specific proposal. They think future trials will be less intrusive and demanding of time, because they don’t require such careful monitoring on behalf of the trial procedures. I told them I am still keen to go into a trial, since I will follow the gleam of hope wherever it appears and I am also feeling fairly healthy and strong.
I am disappointed, but my body has been telling me for a while that there is still considerable back pain and it would be unlikely the cancer had stopped completely, so I wasn’t expecting the results to be much different. The encouraging bit of course is that there are more trials available and my McMillan nurse said today that some of her patients can go on for years with bone cancer that remains localised. So now I have a few weeks of reprieve from the Royal Marsden and the damned journey to Sutton, and a few weeks without drug trials to work out the best possible combination of pain medication to keep the back pain under control. This is important, as it makes all the difference to what I am able to do at work and how I am able to relax and enjoy the other hours in the day.
So upcoming attractions are: a new trial, the gory details of which I will share with you when the time comes; a new understanding, even ‘dialogical’ relationship with Morphine; a festschrift about my work that my amazing Tavistock colleagues are arranging for me on 1st May; Jesse and Zeyana’s wedding party on June 13th; and a possible summer trip to the Campbell cottage in Michigan in August……so…..watch this space!!
Thanks again to you for all your love and support.
David (and Jane)
Well, life certainly isn’t designed for certainty. Today I got the results of the scans that were done earlier in the week to determine the effectiveness of the recent Reovirus drug trial. There has been a small progression of the cancer on the spine when compared to the scan done in February, but there is no sign of cancer growth in the abdominal area where there was pain previously. This means the medical team want to discontinue the drug trial and try a new one. They have a couple of others up their sleeve, based on different biochemical interventions, that they will consider over the next few days before they decide and make me a specific proposal. They think future trials will be less intrusive and demanding of time, because they don’t require such careful monitoring on behalf of the trial procedures. I told them I am still keen to go into a trial, since I will follow the gleam of hope wherever it appears and I am also feeling fairly healthy and strong.
I am disappointed, but my body has been telling me for a while that there is still considerable back pain and it would be unlikely the cancer had stopped completely, so I wasn’t expecting the results to be much different. The encouraging bit of course is that there are more trials available and my McMillan nurse said today that some of her patients can go on for years with bone cancer that remains localised. So now I have a few weeks of reprieve from the Royal Marsden and the damned journey to Sutton, and a few weeks without drug trials to work out the best possible combination of pain medication to keep the back pain under control. This is important, as it makes all the difference to what I am able to do at work and how I am able to relax and enjoy the other hours in the day.
So upcoming attractions are: a new trial, the gory details of which I will share with you when the time comes; a new understanding, even ‘dialogical’ relationship with Morphine; a festschrift about my work that my amazing Tavistock colleagues are arranging for me on 1st May; Jesse and Zeyana’s wedding party on June 13th; and a possible summer trip to the Campbell cottage in Michigan in August……so…..watch this space!!
Thanks again to you for all your love and support.
David (and Jane)
Bile Duct Diary XVII
20 February, 2009
I have just returned to my keyboard, with slightly shaky hands, after a week in an isolated room at the Royal Marsden being injected with the latest scientific advance: the Reovirus that is supposed to hunt down cancer cells and interfere with their DNA, so they are no longer able to reproduce. The week began with an infusion of a chemotherapy meant to weaken my own immune system, and this leaves the way clear for the Reovirus to do its thing. Because this is a drug trial that will one day lead to public usage, they are carefully monitoring all the side effects and reactions that I have to the virus. So I was isolated and sterilised and everyone who poked their head in to take a temperature had to be gloved, masked and gowned….(wasn’t there a Dustin Hoffman film about this a few years ago?) The reaction was like a heavy flu with aching, sweating and shivering, but thankfully only lasted for 2 of the 5 days. That I can cope with.
At first the experience did seem rather bizarre, and dissociating. It reminded me of the Jain religion in India who wear masks so they don’t kill airborne organisms while inhaling. I couldn’t even leave the room to stroll in the corridor…..(yes, if you’re wondering, I had my own toilet)….so my only exercise was about 5 paces across the room and back, and my second film reference emerged as The Great Escape with Steve McQueen.
The plan is that I repeat this in one month and then do a bunch of tests and scans so the medics can determine if there are signs of change in the cancer. If it is helpful, I can carry on with this for 8 months, and if it isn’t, I will leave the trial and look around for other options, but with pancreatic cancer, there aren’t many.
So……there’s been more time last week to ponder on what all is happening to me. I felt very achy and sleepy, so I wasn’t interested in reading or television. But I must say the longer I live with this cancer, (and I had my one year anniversary of my operation yesterday), the more I can feel my self living alongside it. I have no idea how I will react if/when things get worse but at the moment it feels like the cancer and I can live side by side. I can feels its effects, I can read about it, I like to talk about it, but I am also aware that it gives me more space and time, for perhaps a richer kind of living than I have done before. Maybe I’m feeling a little less frightened about living ‘in the meantime’.
I’ll write again in a month or so when results are more clear.
Love to you all
David (and Jane)
I have just returned to my keyboard, with slightly shaky hands, after a week in an isolated room at the Royal Marsden being injected with the latest scientific advance: the Reovirus that is supposed to hunt down cancer cells and interfere with their DNA, so they are no longer able to reproduce. The week began with an infusion of a chemotherapy meant to weaken my own immune system, and this leaves the way clear for the Reovirus to do its thing. Because this is a drug trial that will one day lead to public usage, they are carefully monitoring all the side effects and reactions that I have to the virus. So I was isolated and sterilised and everyone who poked their head in to take a temperature had to be gloved, masked and gowned….(wasn’t there a Dustin Hoffman film about this a few years ago?) The reaction was like a heavy flu with aching, sweating and shivering, but thankfully only lasted for 2 of the 5 days. That I can cope with.
At first the experience did seem rather bizarre, and dissociating. It reminded me of the Jain religion in India who wear masks so they don’t kill airborne organisms while inhaling. I couldn’t even leave the room to stroll in the corridor…..(yes, if you’re wondering, I had my own toilet)….so my only exercise was about 5 paces across the room and back, and my second film reference emerged as The Great Escape with Steve McQueen.
The plan is that I repeat this in one month and then do a bunch of tests and scans so the medics can determine if there are signs of change in the cancer. If it is helpful, I can carry on with this for 8 months, and if it isn’t, I will leave the trial and look around for other options, but with pancreatic cancer, there aren’t many.
So……there’s been more time last week to ponder on what all is happening to me. I felt very achy and sleepy, so I wasn’t interested in reading or television. But I must say the longer I live with this cancer, (and I had my one year anniversary of my operation yesterday), the more I can feel my self living alongside it. I have no idea how I will react if/when things get worse but at the moment it feels like the cancer and I can live side by side. I can feels its effects, I can read about it, I like to talk about it, but I am also aware that it gives me more space and time, for perhaps a richer kind of living than I have done before. Maybe I’m feeling a little less frightened about living ‘in the meantime’.
I’ll write again in a month or so when results are more clear.
Love to you all
David (and Jane)
Monday, 26 January 2009
Bile Duct Diary XVI
9 January, 2009
Dear Diary Readers,
There has been enough activity recently to justify another Diary. As you know, an MRI scan detected a metastasised tumour near the top of my spine, which led to a referral for 5 sessions of radiotherapy and these were completed just before Christmas. The treatments are entirely painless but because tissue is damaged and irritated, this stirs up a fair bit of back pain, which, three weeks later is finally beginning to ease.
Everybody’s best guess is that the microscopic cancer cells will reappear sooner or later in one site or another, and this scenario makes me eligible for joining an experimental drug trial group. So, today Jane, Briony and I went along to the British ‘Mecca’ of cancer research, the Royal Marsden Hospital in Sutton, south London, to meet the team headed by a Maltese consultant, Dr DeBono, whom we discovered spent some of his childhood in Siggiewi, the same small town where Jane’s parents lived….you can imagine the squeals of disbelief that immediately bonded us like glue.
If I pass the physical exam criteria, the plan is to put me into a ‘First Stage’ trial group, to try out combinations of new drugs, and closely monitor the outcome. It sounded a bit like: ‘last week we injected these drugs into white mice, and this week we’ll inject them into David Campbell’. It’s not clear yet how all this will be administered but it means a few overnights in hospital and a trip to the hospital at least once per week, and I should be able to carry on working through this, unless side effects are disabling. It seems to boil down to how my liver and kidneys will bear up under this, if they do, the treatment carries on, and if they don’t then the trial stops. All depending of course on whether I pass their MOT for road worthiness.
This is a time when Jane and I have to ask: ‘what are the options?’ And when I answer that by saying the option to the trial is just to wait for nature to take its course, then I feel the trial is the right thing to do both medically and emotionally. I think it will be stressful but I hope it will feel good to be able to be ‘doing something’. The consultant said my type of cholangeal cancer is rare,(it’s similar but different from pancreatic cancer), which is the main reason research money has not been provided to find a cure, and there have been no advances in curing it for 100 years. But there are, from the researcher’s point of view, no doubt, some exciting new drugs coming along…..So I suppose that’s a fair expression of our dilemma: ‘keep trying but don’t get your hopes up too high’. This is the plan, anyway……. we’ll see.
But one plan we can count on is Jesse and Zeyana’s wedding on Sunday the 18th at Dulwich College. They were planning on a big wedding in September, but very sweetly brought their original date forward so I would be fit and well, so there will be a smaller ceremony now followed by a larger event on the 13th of June. And Briony starts her MA in photojournalism next week, so there is a lot for us to celebrate in 2009, and although I am sure it will be a tough year for most of us, let’s send each other best New Year wishes !!
Take care, with love
David (and Jane)
Dear Diary Readers,
There has been enough activity recently to justify another Diary. As you know, an MRI scan detected a metastasised tumour near the top of my spine, which led to a referral for 5 sessions of radiotherapy and these were completed just before Christmas. The treatments are entirely painless but because tissue is damaged and irritated, this stirs up a fair bit of back pain, which, three weeks later is finally beginning to ease.
Everybody’s best guess is that the microscopic cancer cells will reappear sooner or later in one site or another, and this scenario makes me eligible for joining an experimental drug trial group. So, today Jane, Briony and I went along to the British ‘Mecca’ of cancer research, the Royal Marsden Hospital in Sutton, south London, to meet the team headed by a Maltese consultant, Dr DeBono, whom we discovered spent some of his childhood in Siggiewi, the same small town where Jane’s parents lived….you can imagine the squeals of disbelief that immediately bonded us like glue.
If I pass the physical exam criteria, the plan is to put me into a ‘First Stage’ trial group, to try out combinations of new drugs, and closely monitor the outcome. It sounded a bit like: ‘last week we injected these drugs into white mice, and this week we’ll inject them into David Campbell’. It’s not clear yet how all this will be administered but it means a few overnights in hospital and a trip to the hospital at least once per week, and I should be able to carry on working through this, unless side effects are disabling. It seems to boil down to how my liver and kidneys will bear up under this, if they do, the treatment carries on, and if they don’t then the trial stops. All depending of course on whether I pass their MOT for road worthiness.
This is a time when Jane and I have to ask: ‘what are the options?’ And when I answer that by saying the option to the trial is just to wait for nature to take its course, then I feel the trial is the right thing to do both medically and emotionally. I think it will be stressful but I hope it will feel good to be able to be ‘doing something’. The consultant said my type of cholangeal cancer is rare,(it’s similar but different from pancreatic cancer), which is the main reason research money has not been provided to find a cure, and there have been no advances in curing it for 100 years. But there are, from the researcher’s point of view, no doubt, some exciting new drugs coming along…..So I suppose that’s a fair expression of our dilemma: ‘keep trying but don’t get your hopes up too high’. This is the plan, anyway……. we’ll see.
But one plan we can count on is Jesse and Zeyana’s wedding on Sunday the 18th at Dulwich College. They were planning on a big wedding in September, but very sweetly brought their original date forward so I would be fit and well, so there will be a smaller ceremony now followed by a larger event on the 13th of June. And Briony starts her MA in photojournalism next week, so there is a lot for us to celebrate in 2009, and although I am sure it will be a tough year for most of us, let’s send each other best New Year wishes !!
Take care, with love
David (and Jane)
Bile Duct Diary XV
2 December, 2008
I had hoped that Bile Duct Diary XIV was going to be my last communication, releasing me to get on with life, but I have had a series of complications, and been through 5 scans and blood tests to shed some light. Today, I had a review meeting with the oncologist looking at all the evidence, and the scan shows that there is more cancer located at the top of my spine. I was expecting this news because of strong back pain over the past 6 weeks, even though nothing was showing up on the scans. But still, hearing the words is a shock and I feel like I have had all the wind kicked out of me.
This means there will be a course of radiotherapy, probably starting before Christmas, but the bad news about all this is that the original cancer has metastasised. This is a bad prognosis because it means cancer cells are in the body and if they have left the original site and landed in the spine, nothing is likely to stop them from doing this again. More chemotherapy is an option for the future, if other sites appear cancerous.
So it will take some time for all of us to absorb this news, and plan a different kind of future….one that will now include living in the shadow of cancer, and fighting as best we can.
Anyway I wanted to share this with everyone, because I know how many of you are concerned for our welfare, and this is a very touching and uplifting thing, indeed. Apologies for sending this news in an impersonal way, but it seems best for the time being. More will follow whenever…..
Lots of love to you all,
David (and Jane)
I had hoped that Bile Duct Diary XIV was going to be my last communication, releasing me to get on with life, but I have had a series of complications, and been through 5 scans and blood tests to shed some light. Today, I had a review meeting with the oncologist looking at all the evidence, and the scan shows that there is more cancer located at the top of my spine. I was expecting this news because of strong back pain over the past 6 weeks, even though nothing was showing up on the scans. But still, hearing the words is a shock and I feel like I have had all the wind kicked out of me.
This means there will be a course of radiotherapy, probably starting before Christmas, but the bad news about all this is that the original cancer has metastasised. This is a bad prognosis because it means cancer cells are in the body and if they have left the original site and landed in the spine, nothing is likely to stop them from doing this again. More chemotherapy is an option for the future, if other sites appear cancerous.
So it will take some time for all of us to absorb this news, and plan a different kind of future….one that will now include living in the shadow of cancer, and fighting as best we can.
Anyway I wanted to share this with everyone, because I know how many of you are concerned for our welfare, and this is a very touching and uplifting thing, indeed. Apologies for sending this news in an impersonal way, but it seems best for the time being. More will follow whenever…..
Lots of love to you all,
David (and Jane)
Bile Duct Diaries XIV
7 September, 2008
Just as I was seeing light at the end of my treatment tunnel, something happened. I was booked for my final 3 chemotherapy sessions and going to see the oncologist for what I expected to be a routine check of blood levels, although I had been feeling quite a bit worse after the previous 5 chemotherapy infusions. The medic said one of my blood tests was abnormally high……..a measure of what he called the ‘tumour markers’ which are a type of blood cell that increases in the presence of cancer tumours. While the normal score is around 100, my level was at 1400, so the final 3 chemotherapy sessions were cancelled. The doctor, young and fairly inexperienced, said it may be the cancer has returned and I was scheduled for an urgent CTscan. I had about 10 days to wait for the scan and the review meeting with the oncologists which took place last Friday (5th Sept.). You can imagine all the thoughts I was entertaining during those 10 days, and not sure how much to share with Jane and the kids and how much to keep to myself.
The results of the scan have given me what I would call a 90% certificate of health, and what felt like a 100% reprieve. There has been no spread of the cancer, and all they detected were two enlarged lymph nodes, but these haven’t changed their size since the previous scan was done last April. The best explanation they could give, a senior consultant this time, was that if my immune system was cumulatively weakened as the chemotherapy went on, I may have acquired an internal infection that raised the activity levels of the tumour markers. Apparently this is not uncommon toward the end of chemotherapy and following a major surgery. What is required now is monitoring with blood tests and another scan in December. All this sounds good to me. I have been feeling much better and fitter since the final chemo session, so I am feeling pretty positive and raring to get back to life as we knew it many months ago.
I feel that I really am out of a tunnel now, and I am ready for some kind of ritual to mark my return to the fold. I have been working off and on for about 6 weeks, and I plan to increase this by the day. The way also seems clear for a week’s holiday in October wherever we can find a bit of sun. And then the big change for me which is retiring from my Tavistock/NHS sessions and doing more of the organisational work as of January.
I do want to thank all of you for such caring support over the past 9 months. The cards and visits and meals………. This meant a lot to Jane as well. I just had to put my head down and get on with things, but she had to watch the painful process knowing there was a limit to what she could do to prevent all the struggles.
So now I am looking forward to seeing all of you face to skinny face and cashing in on my reprieve.
Love,
David (and Jane)
Just as I was seeing light at the end of my treatment tunnel, something happened. I was booked for my final 3 chemotherapy sessions and going to see the oncologist for what I expected to be a routine check of blood levels, although I had been feeling quite a bit worse after the previous 5 chemotherapy infusions. The medic said one of my blood tests was abnormally high……..a measure of what he called the ‘tumour markers’ which are a type of blood cell that increases in the presence of cancer tumours. While the normal score is around 100, my level was at 1400, so the final 3 chemotherapy sessions were cancelled. The doctor, young and fairly inexperienced, said it may be the cancer has returned and I was scheduled for an urgent CTscan. I had about 10 days to wait for the scan and the review meeting with the oncologists which took place last Friday (5th Sept.). You can imagine all the thoughts I was entertaining during those 10 days, and not sure how much to share with Jane and the kids and how much to keep to myself.
The results of the scan have given me what I would call a 90% certificate of health, and what felt like a 100% reprieve. There has been no spread of the cancer, and all they detected were two enlarged lymph nodes, but these haven’t changed their size since the previous scan was done last April. The best explanation they could give, a senior consultant this time, was that if my immune system was cumulatively weakened as the chemotherapy went on, I may have acquired an internal infection that raised the activity levels of the tumour markers. Apparently this is not uncommon toward the end of chemotherapy and following a major surgery. What is required now is monitoring with blood tests and another scan in December. All this sounds good to me. I have been feeling much better and fitter since the final chemo session, so I am feeling pretty positive and raring to get back to life as we knew it many months ago.
I feel that I really am out of a tunnel now, and I am ready for some kind of ritual to mark my return to the fold. I have been working off and on for about 6 weeks, and I plan to increase this by the day. The way also seems clear for a week’s holiday in October wherever we can find a bit of sun. And then the big change for me which is retiring from my Tavistock/NHS sessions and doing more of the organisational work as of January.
I do want to thank all of you for such caring support over the past 9 months. The cards and visits and meals………. This meant a lot to Jane as well. I just had to put my head down and get on with things, but she had to watch the painful process knowing there was a limit to what she could do to prevent all the struggles.
So now I am looking forward to seeing all of you face to skinny face and cashing in on my reprieve.
Love,
David (and Jane)
Bile Duct Diaries XIII
23 July, 2008
This is an important Diary entry………. because I went back to work, on a partial basis last week. I have been getting stronger every day and even though I have some post operation pains, they are nothing like they used to be. I have completed 12 chemotherapy sessions and have 6 to go. I should be all finished in mid-September. I am so looking forward to getting out from under the shadow of the predictable ‘achy’ feelings I get for a few days after each session. Also as the treatment accumulates there is a bit more of the sickness/nausea feeling thrown in.
So I rather sheepishly walked through the sliding doors at the Tavistock, feeling very disoriented for a few hours, but then after a few meetings and case discussions, things began to fall into their proper places, and it all seemed very familiar. That’s all it took, about 3 hours….pretty depressing. But it is such a relief to feel a bit normal again. I can see why this is an important part of the cure. I can feel myself slowly getting interested in the future and less interested in my physical state, so that has got to be a good sign. Recently there have been some wonderful social events that some of you have been a part of and Jane and I are now thinking about some kind of ‘post-chemotherapy’ trip to somewhere warm like Morocco.
There are a couple things I have been thinking about over the past few months. One is about the National Health Service, which I have worked for for 35 years but never experienced as an in-patient. I think it is a remarkable institution. I have seen how the NHS deals with overwhelming demands from a vast, diverse population, and I am very impressed by the level of professionalism and dedication I have witnessed. I think most of all I am impressed by the extraordinary, sometimes maddening, fairness of the whole system. When we are ill, we want to be first in the queue, and many times I have had to wait my turn while others who were in fact more needy were dealt with, whatever race, creed or social status, and it is impressive.
So feeling rather protective, I ask why the NHS is so thoroughly and continuously criticised. Of course it needs monitoring like any other institution, but I wonder if it represents at a societal level the reality that we can never get what we want when we want it. We have to live with our limitations, personal and social, and we don’t like it. And what more fundamental place to express this than toward the institution dealing with our life and death.
The other thing I have been struck by is what I suppose you would call the ‘cancer cliché’ that the illness presents us with opportunities to have different kinds of conversations, with different kinds of people. It really does happen and it is very special……reaching parts of us that ordinary conversations do not reach. It seems to be about valuing what is in front of us, knowing….really knowing… that it will be taken away sooner or later. As I write this, I can see it was part of my motivation for doing these diaries, so I hope I can keep these values alive as the normal world, thankfully, starts coming into view.
Jane finished her school term today so I think the summer will be a relaxing time for us from now on. I hope the same will be true for all of you.
Love,
David (and Jane)
This is an important Diary entry………. because I went back to work, on a partial basis last week. I have been getting stronger every day and even though I have some post operation pains, they are nothing like they used to be. I have completed 12 chemotherapy sessions and have 6 to go. I should be all finished in mid-September. I am so looking forward to getting out from under the shadow of the predictable ‘achy’ feelings I get for a few days after each session. Also as the treatment accumulates there is a bit more of the sickness/nausea feeling thrown in.
So I rather sheepishly walked through the sliding doors at the Tavistock, feeling very disoriented for a few hours, but then after a few meetings and case discussions, things began to fall into their proper places, and it all seemed very familiar. That’s all it took, about 3 hours….pretty depressing. But it is such a relief to feel a bit normal again. I can see why this is an important part of the cure. I can feel myself slowly getting interested in the future and less interested in my physical state, so that has got to be a good sign. Recently there have been some wonderful social events that some of you have been a part of and Jane and I are now thinking about some kind of ‘post-chemotherapy’ trip to somewhere warm like Morocco.
There are a couple things I have been thinking about over the past few months. One is about the National Health Service, which I have worked for for 35 years but never experienced as an in-patient. I think it is a remarkable institution. I have seen how the NHS deals with overwhelming demands from a vast, diverse population, and I am very impressed by the level of professionalism and dedication I have witnessed. I think most of all I am impressed by the extraordinary, sometimes maddening, fairness of the whole system. When we are ill, we want to be first in the queue, and many times I have had to wait my turn while others who were in fact more needy were dealt with, whatever race, creed or social status, and it is impressive.
So feeling rather protective, I ask why the NHS is so thoroughly and continuously criticised. Of course it needs monitoring like any other institution, but I wonder if it represents at a societal level the reality that we can never get what we want when we want it. We have to live with our limitations, personal and social, and we don’t like it. And what more fundamental place to express this than toward the institution dealing with our life and death.
The other thing I have been struck by is what I suppose you would call the ‘cancer cliché’ that the illness presents us with opportunities to have different kinds of conversations, with different kinds of people. It really does happen and it is very special……reaching parts of us that ordinary conversations do not reach. It seems to be about valuing what is in front of us, knowing….really knowing… that it will be taken away sooner or later. As I write this, I can see it was part of my motivation for doing these diaries, so I hope I can keep these values alive as the normal world, thankfully, starts coming into view.
Jane finished her school term today so I think the summer will be a relaxing time for us from now on. I hope the same will be true for all of you.
Love,
David (and Jane)
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