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)
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