Bile Duct Diaries XII
29 April, 2008
This installment is about starting the chemotherapy: Gemcitabine, or ‘Gem’, as the nurses call it. I have had three sessions, one per week, and am scheduled for 18 altogether. They go 3 successive weeks and then the 4th week off. That takes me to early October. The routine is that I go to the Royal Free Wednesday for blood tests to see that my blood cell count is strong enough for the treatment. The chemo is tailor-made in the pharmacy and can be altered a bit depending on the strength of my immune system, although recently a woman was being set up for the infusion and a nurse came in to say her blood cell count wasn’t high enough for the treatment and she would have to go home. So then I go back on Thursday for the treatment which is drip fed through a little plastic valve, called a cannula, that they put on the back of the hand. First there is the anti-sickness drip for about 15 minutes, which paradoxically, starts the vague feelings of sickness, and this is followed by the Gemcitabine for about 30 minutes.
So far my reactions have been bearable. After the infusion I have an ‘achey’, ‘fluey’ feeling for a couple days, but no nausea, and probably no hair loss. The worst of it is a kind of low grade muscle tension, as though there are electrodes attached to my muscles sending a low grade current through the body. This makes it hard to sit still and get comfortable, and I feel cross and irritable, but the paracetemol helps somewhat. After a few days, I seem rid of these feelings and back to the ordinary digestive pains. I now take enzyme tablets with all the food I eat, as the pancreas isn’t up to managing all the food I need to gain back the wait I lost during the pancreatitis and the operation. I don’t know yet whether these will have a permanent place on the dining table with the salt and pepper.
I learn a lot about the things we take for granted: for example, when you’re skinny (about 71 kilos) it is really uncomfortable sitting and leaning back on anything that isn’t well-padded. Park benches are torture. So I am filling myself with fattening foods and contemplating going to McDonalds for a Big Mac for the first time in 20 years. Only problem here is that the digestive system can’t cope with too many fats.
I am slowly getting stronger day by day. Trying to be patient. This progress makes a huge difference to Jane who can see a fairly normal future on the horizon. The more I tune into my surroundings, the more I appreciate how much she has done over the past 4 months. Also my cousin Nancy has gone back to North Carolina, with a vote of confidence that we can cope pretty well as a twosome.
It occurs to me that as I move out of the ‘worry zone’ and into the ‘slow, steady rehabilitation zone’ these Bile Duct Diaries will no longer carry the same meaning, and may be supplanted by other things people need to talk about. But I do want to reflect a bit more on all of this and share a few more thoughts with you over the summer.
Love to all,
David (and Jane)
Monday 12 May 2008
Monday 31 March 2008
Bile Duct Diaries XI
Last Friday, we left our rather cosy treatment centre at home where our preoccupations are calorie intake, pain relief, bowel movements and choice of evening video, to return to the Royal Free to meet the oncologists. They are proposing 6 months of chemotherapy consisting of weekly, hospital-based infusions of the drug Gemcitabine (factsheet says it is pronounced: gem-sight-a-been). This is thought to be ‘well tolerated’, i.e. fewer side effects like sickness and loss of hair, but the usual tiredness, susceptibility to infection, and the possibility of food tasting different. Each person has a different reaction so we shall wait and see.
One reason pancreatic cancer has such a poor prognosis is that, to date, chemotherapy treatments are not very effective as they are with other cancers. Although strictly speaking, my tumour was in the bile duct within the pancreas rather than the pancreas proper, so that has a better prognosis. This is another reason why surgery is generally the treatment of choice, certainly at the Royal Free. But this chemotherapy should knock out free floating cancer cells as well others cells in the body that have not been detected because they are too small or they have not revealed themselves with symptoms. (Is this the oncologists equivalent of a MOT?).
I was taken aback when the doctor said he wanted to start in two weeks, because I don’t feel I have the body strength to deal with the chemicals. So there will be more blood tests and another meeting with a consultant next week, but their attitude is they don’t want to leave things.
This consultation felt like a significant step in accepting and consolidating some of what has been happening to me. Within the space of three months, I started as a ‘cancer person’, then a ‘pancreatitis person’, then became a ‘major operation person’, now I have become a ‘chemotherapy person’ and eventually I will be a ‘post-chemotherapy person’. (After that, I presume, I will once again have the same chances of avoiding being hit by a bus as everybody else!). It is hard to locate myself amongst all these major changes of identity, but I can feel this is happening as the treatment plan is settled and there aren’t so many ‘unknowns’ about the future occupying my thinking.
I have no idea about this next stage of treatment and recovery, so no idea yet about returning to work. Apparently some people can organise themselves to do some work while the chemo is going on, but at the moment it’s hard for me to imagine this because I still have some way to go to get over the operation. But I will keep you all informed.
I just have to say what a great team of carers has been assembled with Jane and Nancy and our kids. I couldn’t be in better hands. And Jane’s sister, Ann, from Los Angeles and her husband Peter are coming for a visit this weekend, so the family support, as well as London-based visits have been fantastic.
Bye for now, love to you all,
David (and Jane)
31 March, 2008
Last Friday, we left our rather cosy treatment centre at home where our preoccupations are calorie intake, pain relief, bowel movements and choice of evening video, to return to the Royal Free to meet the oncologists. They are proposing 6 months of chemotherapy consisting of weekly, hospital-based infusions of the drug Gemcitabine (factsheet says it is pronounced: gem-sight-a-been). This is thought to be ‘well tolerated’, i.e. fewer side effects like sickness and loss of hair, but the usual tiredness, susceptibility to infection, and the possibility of food tasting different. Each person has a different reaction so we shall wait and see.
One reason pancreatic cancer has such a poor prognosis is that, to date, chemotherapy treatments are not very effective as they are with other cancers. Although strictly speaking, my tumour was in the bile duct within the pancreas rather than the pancreas proper, so that has a better prognosis. This is another reason why surgery is generally the treatment of choice, certainly at the Royal Free. But this chemotherapy should knock out free floating cancer cells as well others cells in the body that have not been detected because they are too small or they have not revealed themselves with symptoms. (Is this the oncologists equivalent of a MOT?).
I was taken aback when the doctor said he wanted to start in two weeks, because I don’t feel I have the body strength to deal with the chemicals. So there will be more blood tests and another meeting with a consultant next week, but their attitude is they don’t want to leave things.
This consultation felt like a significant step in accepting and consolidating some of what has been happening to me. Within the space of three months, I started as a ‘cancer person’, then a ‘pancreatitis person’, then became a ‘major operation person’, now I have become a ‘chemotherapy person’ and eventually I will be a ‘post-chemotherapy person’. (After that, I presume, I will once again have the same chances of avoiding being hit by a bus as everybody else!). It is hard to locate myself amongst all these major changes of identity, but I can feel this is happening as the treatment plan is settled and there aren’t so many ‘unknowns’ about the future occupying my thinking.
I have no idea about this next stage of treatment and recovery, so no idea yet about returning to work. Apparently some people can organise themselves to do some work while the chemo is going on, but at the moment it’s hard for me to imagine this because I still have some way to go to get over the operation. But I will keep you all informed.
I just have to say what a great team of carers has been assembled with Jane and Nancy and our kids. I couldn’t be in better hands. And Jane’s sister, Ann, from Los Angeles and her husband Peter are coming for a visit this weekend, so the family support, as well as London-based visits have been fantastic.
Bye for now, love to you all,
David (and Jane)
31 March, 2008
Friday 21 March 2008
Bile Duct Diaries X
At Home
Life is so much better now that I am home. I am getting amazing care and attention from Jane (aided by my cousin Nancy from the US), and I am free to moan and groan and feel sorry for myself (FSFM) properly when the need arises. A district nurse comes by every other day to clean the wound and replace the dressing. I have a 15 inch inverted smile across the width of my abdomen, which is still oozing but we have avoided any infection so far. So this leaves me free to wrestle with my three preoccupations: pain, food and sleep. I have a constant low-grade pain in the abdomen, but the traditional pain killers didn’t help much so I have stopped taking them and just rely on a sleeping pill and the ‘soldier’s little helper’ morphine before I go to bed. I used to dread the nightime because I couldn’t really get a good night’s sleep for the pain and the sitting upright on my back. That’s when I would do some serious FSFM while everyone else was sleeping through the night. But in the last few days I have been sleeping through and the big difference is that I can now shift my position to lie a bit on my side. This is the way I have always slept and it feels familiar and comforting. And food: the equation is simple: eat nutritious and protein rich meals to gain strength to speed the recovery. But, even though Jane prepares meals that make Heston Blumenthal look slapdash, I often have the strong sensation that I am already full and cannot eat one bite of food. The food in front of me looks great but I feel there is no place to put it and the appetite quickly evaporates. But this is slowly improving and I have days when I can eat a relatively normal portion.
My days just drift by, structured by my banal routines, which are important in very slowly building the recovery: trying to eat something every few hours, taking a 20 minute walk each day, dozing on the sofa in the morning, perhaps doing some light reading, watching the news, and probably a DVD in the evening before bed. Progress seems slow and this requires a lot of patience. Each is like the other, except for the visitors….that’s you. Now days are identitied by visits: ‘Oh, that was the day Susan came.’ They are a real tonic, but the irony is I can only manage about one per day, and I wish I could see more of you. I leave this gatekeeping up to Jane. But thanks to all of you who have come by.
Finally a word about the cancer. We met the surgeon last week who said ‘the margins around the cancer are now clean’, and he was pleased with the outcome of the surgery. They have found evidence of microscopic cancer cells, mainly in the lymph nodes, for which they are recommending chemotherapy. We have a consultation with an oncology consultant, Tim Meyers, on the 28th. (This was going to be tomorrow the 21st, but it is Good Friday). So I will send another diary out to you after that consultation to give you an idea what the treatment plan looks like.
We want to send Easter greetings to all of you, and hope many of you can get together with your families over the holiday period.
Love,
David (and Jane)
Life is so much better now that I am home. I am getting amazing care and attention from Jane (aided by my cousin Nancy from the US), and I am free to moan and groan and feel sorry for myself (FSFM) properly when the need arises. A district nurse comes by every other day to clean the wound and replace the dressing. I have a 15 inch inverted smile across the width of my abdomen, which is still oozing but we have avoided any infection so far. So this leaves me free to wrestle with my three preoccupations: pain, food and sleep. I have a constant low-grade pain in the abdomen, but the traditional pain killers didn’t help much so I have stopped taking them and just rely on a sleeping pill and the ‘soldier’s little helper’ morphine before I go to bed. I used to dread the nightime because I couldn’t really get a good night’s sleep for the pain and the sitting upright on my back. That’s when I would do some serious FSFM while everyone else was sleeping through the night. But in the last few days I have been sleeping through and the big difference is that I can now shift my position to lie a bit on my side. This is the way I have always slept and it feels familiar and comforting. And food: the equation is simple: eat nutritious and protein rich meals to gain strength to speed the recovery. But, even though Jane prepares meals that make Heston Blumenthal look slapdash, I often have the strong sensation that I am already full and cannot eat one bite of food. The food in front of me looks great but I feel there is no place to put it and the appetite quickly evaporates. But this is slowly improving and I have days when I can eat a relatively normal portion.
My days just drift by, structured by my banal routines, which are important in very slowly building the recovery: trying to eat something every few hours, taking a 20 minute walk each day, dozing on the sofa in the morning, perhaps doing some light reading, watching the news, and probably a DVD in the evening before bed. Progress seems slow and this requires a lot of patience. Each is like the other, except for the visitors….that’s you. Now days are identitied by visits: ‘Oh, that was the day Susan came.’ They are a real tonic, but the irony is I can only manage about one per day, and I wish I could see more of you. I leave this gatekeeping up to Jane. But thanks to all of you who have come by.
Finally a word about the cancer. We met the surgeon last week who said ‘the margins around the cancer are now clean’, and he was pleased with the outcome of the surgery. They have found evidence of microscopic cancer cells, mainly in the lymph nodes, for which they are recommending chemotherapy. We have a consultation with an oncology consultant, Tim Meyers, on the 28th. (This was going to be tomorrow the 21st, but it is Good Friday). So I will send another diary out to you after that consultation to give you an idea what the treatment plan looks like.
We want to send Easter greetings to all of you, and hope many of you can get together with your families over the holiday period.
Love,
David (and Jane)
Thursday 6 March 2008
Bile Duct Diaries IX
I am so happy to be writing all this from home now!
I woke up from the 10 hr. operation as I was being lifted from the operating trolley onto the intensive care bed. Lots of people were pushing and pulling and I was immediately aware of two thoughts: “Thank God, I made it” … and… “I think this whole thing is a big mistake.” So now I’ll have plenty of time to dwell on this second thought. The best thing was seeing Jane, Jesse, and Briony’s faces a few minutes later. Then I had some fleeting idea that things will work out.
I spent the next 20 hours or so with one nurse by my bed in the ITU unit. Also very reassuring as the tubes, drips, drains, and bags of various yellow fluids (totalling 7) were continuously monitored. The operation took longer than expected because Mr. Sharma had to cut away more pancreas than he anticipated (about 40%) and because there was so much inflammation, he had to go very slowly and carefully to excise the damaged tissue and leave the healthy. He then rejoined what was left of the pancreas to a lower section of the intestine. He did the same reattachment for the remaining parts of the bile duct after having removed gall bladder, main bile duct and the first section of the small intestine (duodenum). Malignant cancer was confirmed, officially it is called, I think, “cholangeal carcinoma.” In a week or so Sharma will go over the biopsies with the oncologists and we will have a conference to look at the options for further treatments.
A big ordeal for all of us. On the day after the operation, Sharma invited Jane to see him in his office. At one point, he reached across his desk to take her hand and said, “Yesterday was a much more difficult day for you and me than it was for David”, and Jane thought to herself, “probably more difficult for you than me.” I now have a 15” scar, a railway track of 51 staples across my belly. The first challenge of the recovery was balancing the medical support in the form of pain killers, laxatives, antibiotics, digestive pills, etc with the need to shed these so the body can rebuild its own immune system and general digestive functioning. There seems to be a lot of tissue that has to gradually get to know tissues they have never been connected to before. Apart from a lot of pain, the only medical worry was that I was producing too many white blood cells which can be a sign of internal infection. (normal count is 10-14 and I was around 16-18). My registrar had talked about me going home last Sunday, pending the blood test results. On Sunday they were late collecting the sample and late analysing the results. By now I was SO keen to get out of the hospital, that I phoned the registrar at home to explain what was happening, in a pleading voice, and he said he thought it would be OK if I was feeling well in myself. So Jane came and we packed up and went down to get into the car. We were literally driving up to the barrier at the Royal Free forecourt when Jane’s mobile rang and it was the ward doctor saying she had just got the blood results (up to 22) and she wanted me back on the ward immediately!! The whole thing felt a bit like the Keystone Cops, but ironically I was not feeling that great and I spent the next 12 hours throwing up enormous quantities of green liquid in what the medics call ‘gastric emptying’, where fluids come up into the stomach from the lower parts of the abdomen.
But on Tuesday, things settled down and I got the green light to go home. I am SO happy to be here. I don’t think I realised how the hospital atmosphere was getting me down, as I feel a big boost of resilience and optimism today that I haven’t felt for months. So I will enjoy sitting at the computer and sharing a few more reflections about this process and the NHS over the next few weeks, while we await the meeting with the oncologists.
What a wonderful surge of support and thoughtfulness all you demonstrated around the time of the operation. Thank you so much for that. I certainly didn’t go into the theatre alone!
Love,
David (& Jane)
P.S. My cousin Nancy has arrived from North Carolina to be “the Carer’s Carer” so we are very lucky to have her support, love, company, and very importantly her sense of humour!
I woke up from the 10 hr. operation as I was being lifted from the operating trolley onto the intensive care bed. Lots of people were pushing and pulling and I was immediately aware of two thoughts: “Thank God, I made it” … and… “I think this whole thing is a big mistake.” So now I’ll have plenty of time to dwell on this second thought. The best thing was seeing Jane, Jesse, and Briony’s faces a few minutes later. Then I had some fleeting idea that things will work out.
I spent the next 20 hours or so with one nurse by my bed in the ITU unit. Also very reassuring as the tubes, drips, drains, and bags of various yellow fluids (totalling 7) were continuously monitored. The operation took longer than expected because Mr. Sharma had to cut away more pancreas than he anticipated (about 40%) and because there was so much inflammation, he had to go very slowly and carefully to excise the damaged tissue and leave the healthy. He then rejoined what was left of the pancreas to a lower section of the intestine. He did the same reattachment for the remaining parts of the bile duct after having removed gall bladder, main bile duct and the first section of the small intestine (duodenum). Malignant cancer was confirmed, officially it is called, I think, “cholangeal carcinoma.” In a week or so Sharma will go over the biopsies with the oncologists and we will have a conference to look at the options for further treatments.
A big ordeal for all of us. On the day after the operation, Sharma invited Jane to see him in his office. At one point, he reached across his desk to take her hand and said, “Yesterday was a much more difficult day for you and me than it was for David”, and Jane thought to herself, “probably more difficult for you than me.” I now have a 15” scar, a railway track of 51 staples across my belly. The first challenge of the recovery was balancing the medical support in the form of pain killers, laxatives, antibiotics, digestive pills, etc with the need to shed these so the body can rebuild its own immune system and general digestive functioning. There seems to be a lot of tissue that has to gradually get to know tissues they have never been connected to before. Apart from a lot of pain, the only medical worry was that I was producing too many white blood cells which can be a sign of internal infection. (normal count is 10-14 and I was around 16-18). My registrar had talked about me going home last Sunday, pending the blood test results. On Sunday they were late collecting the sample and late analysing the results. By now I was SO keen to get out of the hospital, that I phoned the registrar at home to explain what was happening, in a pleading voice, and he said he thought it would be OK if I was feeling well in myself. So Jane came and we packed up and went down to get into the car. We were literally driving up to the barrier at the Royal Free forecourt when Jane’s mobile rang and it was the ward doctor saying she had just got the blood results (up to 22) and she wanted me back on the ward immediately!! The whole thing felt a bit like the Keystone Cops, but ironically I was not feeling that great and I spent the next 12 hours throwing up enormous quantities of green liquid in what the medics call ‘gastric emptying’, where fluids come up into the stomach from the lower parts of the abdomen.
But on Tuesday, things settled down and I got the green light to go home. I am SO happy to be here. I don’t think I realised how the hospital atmosphere was getting me down, as I feel a big boost of resilience and optimism today that I haven’t felt for months. So I will enjoy sitting at the computer and sharing a few more reflections about this process and the NHS over the next few weeks, while we await the meeting with the oncologists.
What a wonderful surge of support and thoughtfulness all you demonstrated around the time of the operation. Thank you so much for that. I certainly didn’t go into the theatre alone!
Love,
David (& Jane)
P.S. My cousin Nancy has arrived from North Carolina to be “the Carer’s Carer” so we are very lucky to have her support, love, company, and very importantly her sense of humour!
Bile duct diaries VIII : DAY OF THE OPERATION
10 hours under the knife but he's awake now and already charming the nurses
Hi all,
We've just returned from the Intensive Treatment Unit of the Royal Free, where dad is recuperating; groggy, slightly shell-shocked but mentally engaged and happy to see friendly faces. After a very stressful evening of endless waiting and pinning our hopes on 'just another 10/30/60/120 minutes', he finally emerged from theatre and we finally got in to see him. We were all hugely relieved to find that the person we know and love is still alive and kicking even if his body is a little bit different from the one that went in this morning. The operation was complicated by the fact that the inflammation of the pancreas was worse than expected, making it difficult to distinguish between malignant and inflamed tissue. Despite this the surgeons were pleased with the outcome. There is still a long and difficult road ahead, but it feels like we're over one of the major hurdles today. Thank you all for your love and ongoing support,
Jesse, Jane and Briony.
Hi all,
We've just returned from the Intensive Treatment Unit of the Royal Free, where dad is recuperating; groggy, slightly shell-shocked but mentally engaged and happy to see friendly faces. After a very stressful evening of endless waiting and pinning our hopes on 'just another 10/30/60/120 minutes', he finally emerged from theatre and we finally got in to see him. We were all hugely relieved to find that the person we know and love is still alive and kicking even if his body is a little bit different from the one that went in this morning. The operation was complicated by the fact that the inflammation of the pancreas was worse than expected, making it difficult to distinguish between malignant and inflamed tissue. Despite this the surgeons were pleased with the outcome. There is still a long and difficult road ahead, but it feels like we're over one of the major hurdles today. Thank you all for your love and ongoing support,
Jesse, Jane and Briony.
Sunday 10 February 2008
Bile Duct Diaries VI
8 Feb. 2008
Yesterday I went in for the laproscopy which is a keyhole investigation with a camera under general anaesthetic, so Mr Sharma and I had a dress rehearsal for what is to come and I got to see the op. theatre and meet the anaesthetists which is a big part of the procedure for a long operation. The operating table is surprisingly narrow and you feel like you could easily roll off, but once the anaesthetic kicks in, which it does in seconds, you are’nt rolling anywhere. As I came around Sharma showed me the photographs which were surprisingly bright and clear. He found nothing ‘sinister’ in the peritoneal area, but there were a few small nodules in the area and a spot on the stomach he is sending out for biopsy. This will determine what gets worked on and excised during the operation. And he is still assuming the cancer is deep in the bile duct or pancreas area.
And we now have a date for the operation, Tuesday, 19th Feb. But because the Royal Free is also a liver transplant centre, those operations take precedence if they come in as emergencies. Next week I have one final CT scan (on Monday) for any further diagnostic information and that’s it. I have had a discussion with Sharma about the operation; it’s usually 5-7 hours long, and most patients usually have some form of complications like infection, bleeding, fistulas, etc. following the surgery. The list is pretty long so I won’t depress you with it.
I’ll ask Jesse or Briony to update the weblog after the operation, so you can pick that up on: http://www.davidcampbell340.blogspot.com/ I had previously given out this address with a dot missing, so do try again.
So now Jane and I are facing a really challenging time. How do we best prepare body, mind and soul for this operation? How much to muster my anger and frustration in to fighting mode, or how much to accept my situation; how to manage fears about the future and how much to stay calmly in the present? How much to think about this at all, and how much to rely on delicious denial and go out to the cinema? And the tricky bit is that Jane and I will have different needs at different times. There are times I will want to retreat into myself and she may want more companionship, so we have to keep talking about it.
Now I am just thinking, ‘what’s the best way to prepare myself physically and mentally for the operation’. I’ll do the best I can…….. then on the 19th, I just have to hand myself over to Sharma. Isn’t life fascinating!!
Thanks so much for all your attention and support. It makes a huge difference to know we are not really going through all this alone.
Love,
David (and Jane)
PS. As I gather my thoughts about things, do believe life is precious and serious and…..also a bit absurd, so let’s end this Diary with some relevant humour.
8 Feb. 2008
Yesterday I went in for the laproscopy which is a keyhole investigation with a camera under general anaesthetic, so Mr Sharma and I had a dress rehearsal for what is to come and I got to see the op. theatre and meet the anaesthetists which is a big part of the procedure for a long operation. The operating table is surprisingly narrow and you feel like you could easily roll off, but once the anaesthetic kicks in, which it does in seconds, you are’nt rolling anywhere. As I came around Sharma showed me the photographs which were surprisingly bright and clear. He found nothing ‘sinister’ in the peritoneal area, but there were a few small nodules in the area and a spot on the stomach he is sending out for biopsy. This will determine what gets worked on and excised during the operation. And he is still assuming the cancer is deep in the bile duct or pancreas area.
And we now have a date for the operation, Tuesday, 19th Feb. But because the Royal Free is also a liver transplant centre, those operations take precedence if they come in as emergencies. Next week I have one final CT scan (on Monday) for any further diagnostic information and that’s it. I have had a discussion with Sharma about the operation; it’s usually 5-7 hours long, and most patients usually have some form of complications like infection, bleeding, fistulas, etc. following the surgery. The list is pretty long so I won’t depress you with it.
I’ll ask Jesse or Briony to update the weblog after the operation, so you can pick that up on: http://www.davidcampbell340.blogspot.com/ I had previously given out this address with a dot missing, so do try again.
So now Jane and I are facing a really challenging time. How do we best prepare body, mind and soul for this operation? How much to muster my anger and frustration in to fighting mode, or how much to accept my situation; how to manage fears about the future and how much to stay calmly in the present? How much to think about this at all, and how much to rely on delicious denial and go out to the cinema? And the tricky bit is that Jane and I will have different needs at different times. There are times I will want to retreat into myself and she may want more companionship, so we have to keep talking about it.
Now I am just thinking, ‘what’s the best way to prepare myself physically and mentally for the operation’. I’ll do the best I can…….. then on the 19th, I just have to hand myself over to Sharma. Isn’t life fascinating!!
Thanks so much for all your attention and support. It makes a huge difference to know we are not really going through all this alone.
Love,
David (and Jane)
PS. As I gather my thoughts about things, do believe life is precious and serious and…..also a bit absurd, so let’s end this Diary with some relevant humour.
Saturday 2 February 2008
Bile Duct Diaries V
….or….’The Mysterious Case of the Travelling Stent’
Since my last report, I have had two internal infections, marked by fever and shaky shivering. The first time this was managed with antibiotics, but the second time the yellow skin (jaundice) and intense itching recurred. Mr. Sharma assumed this was related to the area around the stent, and he was worried this could blow out of proportion, so he arranged for me to go into hospital to have the old stent removed and a new one inserted with the ERCP procedure. Because this was done urgently, I had to be shifted to UCH, the new hospital on Euston Rd. It’s a magnificent place. Very spacious, bright, obviously done with the aid of interior decorators. As long as you are not remotely interested in parking, it is number one on our Rough Guide to UK Hospitals.
Now, regular subscribers to this diary will recall that the pancreatitis I have been wrestling with originally flared up following the original ERCP at the Radcliffe Hospital, so at the front of my mind was the worry that more messing about with stents would trigger more pancreatitis. I had the ERCP procedure this morning and so far, 6 hours later, I am feeling pretty good, but a little superstitious about saying ‘good riddance’ once and for all to pancreatitis…..but at least I can do the diary!
When the surgeon went in after the stent he couldn’t find it at first. His terminology was that it had ‘migrated’ further up into the bile duct, and he had to work for some time, including some incisions to get it out. Following that, he was confident that the new one is well placed. Lest we ‘laypeople’ become overawed by the medics terminology, I thought as an antidote, you might enjoy this excerpt from the surgeon’s formal report: ……‘Unable to engage stent with basket or balloon, but eventually stent grabbers succeeded in removing stent’. It does make you wonder what he was going to try next….a paper clip?
I have certainly learned the limitations about anticipating the future, but we do now have a PLAN. (Joke: How do you make God laugh?.......Tell Him you have a plan.) It is to do the laparoscopy next Thursday, followed by a final CT scan, leading up to the operation some time after the 18th. My morale has lifted a bit today and I feel now that there is a little less pain and something definite to aim for, I can tackle this next period leading to the operation.
By the way Jane’s nephew set up a weblog for me if anyone wants to check from time to time, but I can’t guarantee how I will keep it up to date. Address is: davidcampbell340.blogspot.com
It is incredibly touching how expansive you all have been in thinking, and acting, on ways to help us through this situation. We have paused to wonder how this experience fits together for all of us, you and us, many times.
Love
David (and Jane)
Since my last report, I have had two internal infections, marked by fever and shaky shivering. The first time this was managed with antibiotics, but the second time the yellow skin (jaundice) and intense itching recurred. Mr. Sharma assumed this was related to the area around the stent, and he was worried this could blow out of proportion, so he arranged for me to go into hospital to have the old stent removed and a new one inserted with the ERCP procedure. Because this was done urgently, I had to be shifted to UCH, the new hospital on Euston Rd. It’s a magnificent place. Very spacious, bright, obviously done with the aid of interior decorators. As long as you are not remotely interested in parking, it is number one on our Rough Guide to UK Hospitals.
Now, regular subscribers to this diary will recall that the pancreatitis I have been wrestling with originally flared up following the original ERCP at the Radcliffe Hospital, so at the front of my mind was the worry that more messing about with stents would trigger more pancreatitis. I had the ERCP procedure this morning and so far, 6 hours later, I am feeling pretty good, but a little superstitious about saying ‘good riddance’ once and for all to pancreatitis…..but at least I can do the diary!
When the surgeon went in after the stent he couldn’t find it at first. His terminology was that it had ‘migrated’ further up into the bile duct, and he had to work for some time, including some incisions to get it out. Following that, he was confident that the new one is well placed. Lest we ‘laypeople’ become overawed by the medics terminology, I thought as an antidote, you might enjoy this excerpt from the surgeon’s formal report: ……‘Unable to engage stent with basket or balloon, but eventually stent grabbers succeeded in removing stent’. It does make you wonder what he was going to try next….a paper clip?
I have certainly learned the limitations about anticipating the future, but we do now have a PLAN. (Joke: How do you make God laugh?.......Tell Him you have a plan.) It is to do the laparoscopy next Thursday, followed by a final CT scan, leading up to the operation some time after the 18th. My morale has lifted a bit today and I feel now that there is a little less pain and something definite to aim for, I can tackle this next period leading to the operation.
By the way Jane’s nephew set up a weblog for me if anyone wants to check from time to time, but I can’t guarantee how I will keep it up to date. Address is: davidcampbell340.blogspot.com
It is incredibly touching how expansive you all have been in thinking, and acting, on ways to help us through this situation. We have paused to wonder how this experience fits together for all of us, you and us, many times.
Love
David (and Jane)
Thursday 24 January 2008
Bile Duct Diaries IV
23 Jan. ‘08
Bile Duct Diaries IV
Today Jane and I met Mr. Sharma, the liver surgeon at the Royal Free who will be taking my case from the team at the Radcliffe in Oxford. About 40, in a smart pin- striped suit. He was very professional and thorough, taking about an hour to discuss a very complex situation, since no one can be 100% sure of what is going on. He discussed the operation, but since it is a major intervention with a mortality rate of its own, he wants to slow things down enough to gather as much evidence as possible, and be reassured that I am fully fit ‘mentally and physically’ for the operation. This took us back to the damned pancreatitis, which he said is tricky and can be very serious in its own right. Because of that he suspects the CT scan done in Oxford was not as helpful as it could be and wants me to do another. Then he wants a laparoscopy (keyhole surgery to get a closer look at the relevant organs) and while these are being done and analysed, the pancreatitis should be settling completely, and I should be posing for the cover of Men’s Fitness Weekly. He said, ‘if you swim one lap, I want you to start swimming two’….and, ‘If you walk for one hour, I want you to start walking for two’. Rather inspiring, actually.
Then we discussed the urgency of having a suspected malignancy, but he said there is no strong evidence that it is spreading and in the balance, it is far better to take the extra weeks and get everything right for the operation. This places the date of the operation into the mid February range, but we are all committed to taking one step at a time since there can be so many ‘slips ‘tween cup and mouth’ with my situation.
So as I reflect on this consultation, I feel relieved about stretching this out to leave more time for everyone to consider things and more time to prepare myself…..particularly since I think I am still shocked by the sudden change of life direction I am experiencing. Also I like the idea that Sharma is on board and taking things seriously…a form of second opinion…… and he seems very open to discuss things as we go forward. For example, I said I had a number of friends who were medics and they would be concerned that this is the right course of action, and he said ‘I’d be happy to speak to any of them on the phone if you’d like.’
So that’s it for now. If any of you are walking on Hampstead Heath, in the next few weeks, and you get overtaken by a blur that looks vaguely like a 64 year old man, it’s probably me.
Thanks so much once again for all the support and good wishes you have conveyed to Jane and me, each in your own way.
LoveDavid (and Jane)
Bile Duct Diaries IV
Today Jane and I met Mr. Sharma, the liver surgeon at the Royal Free who will be taking my case from the team at the Radcliffe in Oxford. About 40, in a smart pin- striped suit. He was very professional and thorough, taking about an hour to discuss a very complex situation, since no one can be 100% sure of what is going on. He discussed the operation, but since it is a major intervention with a mortality rate of its own, he wants to slow things down enough to gather as much evidence as possible, and be reassured that I am fully fit ‘mentally and physically’ for the operation. This took us back to the damned pancreatitis, which he said is tricky and can be very serious in its own right. Because of that he suspects the CT scan done in Oxford was not as helpful as it could be and wants me to do another. Then he wants a laparoscopy (keyhole surgery to get a closer look at the relevant organs) and while these are being done and analysed, the pancreatitis should be settling completely, and I should be posing for the cover of Men’s Fitness Weekly. He said, ‘if you swim one lap, I want you to start swimming two’….and, ‘If you walk for one hour, I want you to start walking for two’. Rather inspiring, actually.
Then we discussed the urgency of having a suspected malignancy, but he said there is no strong evidence that it is spreading and in the balance, it is far better to take the extra weeks and get everything right for the operation. This places the date of the operation into the mid February range, but we are all committed to taking one step at a time since there can be so many ‘slips ‘tween cup and mouth’ with my situation.
So as I reflect on this consultation, I feel relieved about stretching this out to leave more time for everyone to consider things and more time to prepare myself…..particularly since I think I am still shocked by the sudden change of life direction I am experiencing. Also I like the idea that Sharma is on board and taking things seriously…a form of second opinion…… and he seems very open to discuss things as we go forward. For example, I said I had a number of friends who were medics and they would be concerned that this is the right course of action, and he said ‘I’d be happy to speak to any of them on the phone if you’d like.’
So that’s it for now. If any of you are walking on Hampstead Heath, in the next few weeks, and you get overtaken by a blur that looks vaguely like a 64 year old man, it’s probably me.
Thanks so much once again for all the support and good wishes you have conveyed to Jane and me, each in your own way.
LoveDavid (and Jane)
Bile Duct Diaries III
11 Jan., 2008
Bile Duct Diaries III
Yesterday Jane and I went to meet the surgeon at the Radcliffe Hospital. It wasn’t easy hearing the whole situation explained in all its medical detail, and I can feel myself hearing certain things and not listening to others. They are assuming there is cancer in the bile duct/pancreas area, and the vast majority of these cancers are malignant, so they assume that too. In my favour is the fact that they have not yet detected metastasised cancer, so surgery rather than chemotherapy is favoured. This will involve cutting a lot of stuff away: parts of the stomach and pancreas, the duodenum, lymph nodes, the gall bladder and the bile duct……to name but a few. It is shocking to hear this, but this is a well known operative procedure called the Whipple Procedure (yes, sounds like it should be called the ‘whip-it-out’ procedure).
The cancer is deep within the abdomen, so they will only really be able to assess things fully with observation and biopsies, once they open me up. If they think that is sufficient, then I am on a 3 month (?) road to recovery, if they discover other things going on, then I may have to go on to chemotherapy, but let’s cross those bridges when we come to them.
They still have to wait for my pancreatitis to clam down, so the internal organs are strong enough to cope with the operation and the subsequent risk of internal bleeding, so I have to wait a few more weeks. We thought this was the best time to transfer my case to the Royal Free, which has an excellent liver/surgical department, and is easier for family and friends to arrange visits, so we will be on their case to ensure I don’t have to wait too long for this. Hopefully the operation will be early in Feb.
All you Tavi colleagues have been amazing at stepping into the breach with my cases and supervisions and courses. Everything is nearly accounted for, and I am finding it harder and harder to sustain the idea that the clinic cannot cope without me, so thanks to all of you for that. We know also there are a lot of thoughts, concern and prayers coming in our direction, and that is very supportive when we are trying to come to terms with all this….in such a short space of time, so thank you once again for this.
Love,
David (and Jane)
Bile Duct Diaries III
Yesterday Jane and I went to meet the surgeon at the Radcliffe Hospital. It wasn’t easy hearing the whole situation explained in all its medical detail, and I can feel myself hearing certain things and not listening to others. They are assuming there is cancer in the bile duct/pancreas area, and the vast majority of these cancers are malignant, so they assume that too. In my favour is the fact that they have not yet detected metastasised cancer, so surgery rather than chemotherapy is favoured. This will involve cutting a lot of stuff away: parts of the stomach and pancreas, the duodenum, lymph nodes, the gall bladder and the bile duct……to name but a few. It is shocking to hear this, but this is a well known operative procedure called the Whipple Procedure (yes, sounds like it should be called the ‘whip-it-out’ procedure).
The cancer is deep within the abdomen, so they will only really be able to assess things fully with observation and biopsies, once they open me up. If they think that is sufficient, then I am on a 3 month (?) road to recovery, if they discover other things going on, then I may have to go on to chemotherapy, but let’s cross those bridges when we come to them.
They still have to wait for my pancreatitis to clam down, so the internal organs are strong enough to cope with the operation and the subsequent risk of internal bleeding, so I have to wait a few more weeks. We thought this was the best time to transfer my case to the Royal Free, which has an excellent liver/surgical department, and is easier for family and friends to arrange visits, so we will be on their case to ensure I don’t have to wait too long for this. Hopefully the operation will be early in Feb.
All you Tavi colleagues have been amazing at stepping into the breach with my cases and supervisions and courses. Everything is nearly accounted for, and I am finding it harder and harder to sustain the idea that the clinic cannot cope without me, so thanks to all of you for that. We know also there are a lot of thoughts, concern and prayers coming in our direction, and that is very supportive when we are trying to come to terms with all this….in such a short space of time, so thank you once again for this.
Love,
David (and Jane)
Bile Duct Diaries, II
8 Jan., 2007
Bile Duct Diaries, II
Just to keep people informed, there was a hospital conference yesterday about my situation, and I have now discussed things with the lead consultant. They think the most likely cause of the bile duct constriction, is some type of cancer, and they want to operate in order to remove the bile duct and part of the pancreas. This allows them to do a thorough investigation that should answer further questions and lead to a clearer plan for treatment. The consultant said, hopefully, that the intention of this operation is ‘curative’. We shall see.
Before they can do that, I have to get over the current bout of pancreatitis and gain more strength. Jane and I are going to the Radcliffe Hospital in Oxford to discuss all this with the surgical team on Friday. I need to also think over whether that might be the best time to have my case transferred to the Royal Free. I must say, paradoxically, even though none of us wants to hear the word ‘cancer’ there is some relief in hearing a bit more certainty coming out of all the investigations so far.
For colleagues, as well as friends, I suppose a rough timetable might be an operation in 10-14 days, followed by 6 weeks’ recovery before I should think of doing any work. That takes us up to mid March. In a few days I should have a more specific date for the operation, and then I need to speak to some of you more about cases and workload, etc, but it is probably best to make general plans as though I will be out of action for weeks rather than days. Meanwhile the BBC’s Rome series, James Naughtie’s History of Music and short walks into Crouch End represent the summit of my day.
Thanks for all your continued love and support.
Love
David (and Jane)
Bile Duct Diaries, II
Just to keep people informed, there was a hospital conference yesterday about my situation, and I have now discussed things with the lead consultant. They think the most likely cause of the bile duct constriction, is some type of cancer, and they want to operate in order to remove the bile duct and part of the pancreas. This allows them to do a thorough investigation that should answer further questions and lead to a clearer plan for treatment. The consultant said, hopefully, that the intention of this operation is ‘curative’. We shall see.
Before they can do that, I have to get over the current bout of pancreatitis and gain more strength. Jane and I are going to the Radcliffe Hospital in Oxford to discuss all this with the surgical team on Friday. I need to also think over whether that might be the best time to have my case transferred to the Royal Free. I must say, paradoxically, even though none of us wants to hear the word ‘cancer’ there is some relief in hearing a bit more certainty coming out of all the investigations so far.
For colleagues, as well as friends, I suppose a rough timetable might be an operation in 10-14 days, followed by 6 weeks’ recovery before I should think of doing any work. That takes us up to mid March. In a few days I should have a more specific date for the operation, and then I need to speak to some of you more about cases and workload, etc, but it is probably best to make general plans as though I will be out of action for weeks rather than days. Meanwhile the BBC’s Rome series, James Naughtie’s History of Music and short walks into Crouch End represent the summit of my day.
Thanks for all your continued love and support.
Love
David (and Jane)
Jaundice story
Dear All,
As the only one in our family who can bear the traditional American round-robin Christmas letter, I thought I would take this opportunity to send one of my own, to say thanks for all your concern and support and to give you a summary of what has been happening, and I promise I won’t be trumpeting anybody’s GCSE results!
In Friday the 22nd, I just finished a gruelling 6 days of group relations work….probably not a great idea, but there you go. Next morning Jane and I were doing our Christmas shopping in Witney and she noticed I had turned yellow, so we went to the local clinic that had a look and said I should go straight to the John Radcliffe in Oxford. Off we went to their assessment unit to discover the cause of the jaundice. And I have been at the hospital ever since, except for two days off to go home for Christmas. They arranged a sequence of 4 assessment ‘procedures’….Ultra sound….MRI….Endoscopy (camera down the gullet) …and CT scan. Because of holiday staffing and recovery times , these have taken some time. Things were OK till I had the endoscopy when they also inserted a small tube in the bile duct to drain the bile through the system. I had a violent, reaction to this that led to pancreatitis….and this has been no fun. Put on an immediate starvation diet, that means I couldn’t eat or drink for three days, and the nausea like pain was all consuming, 24 hours a day. I felt too preoccupied with the pain to eat, read, watch telly, or have much of a conversation.
They sent me home with pain killers, yesterday and I now have a few periods where I can sit up and drink soup. But this seems like a very slow process to me who has never been in hospital and brings up all my impatience and fear of not having some control of my life. A lot to think about….eventually.
Still, there is no diagnosis. Most likely a blocked bile duct but they don’t know why. Monday is a big consultants’ case conference to look at all the results, so we’ll hope there is more news then. So I feel like I am at the end of chapter one, but have no idea how much longer this will go on. The consultant has given me a 4 week ‘sick note’ but I will play it one week at a time and keep people informed.
As you all know, I get a bit embarrassed if too much attention sneaks up on me, but I do want to say how I have been very touched by the concern that is circulating amongst you, and back to me and Jane. It is surprisingly easy to retreat into feeling sorry for oneself in these circumstances.
Also I am happy for you to pass any of this information on to colleagues who might be interested.
I’ll be in touch,
Love,
David (and Jane)
As the only one in our family who can bear the traditional American round-robin Christmas letter, I thought I would take this opportunity to send one of my own, to say thanks for all your concern and support and to give you a summary of what has been happening, and I promise I won’t be trumpeting anybody’s GCSE results!
In Friday the 22nd, I just finished a gruelling 6 days of group relations work….probably not a great idea, but there you go. Next morning Jane and I were doing our Christmas shopping in Witney and she noticed I had turned yellow, so we went to the local clinic that had a look and said I should go straight to the John Radcliffe in Oxford. Off we went to their assessment unit to discover the cause of the jaundice. And I have been at the hospital ever since, except for two days off to go home for Christmas. They arranged a sequence of 4 assessment ‘procedures’….Ultra sound….MRI….Endoscopy (camera down the gullet) …and CT scan. Because of holiday staffing and recovery times , these have taken some time. Things were OK till I had the endoscopy when they also inserted a small tube in the bile duct to drain the bile through the system. I had a violent, reaction to this that led to pancreatitis….and this has been no fun. Put on an immediate starvation diet, that means I couldn’t eat or drink for three days, and the nausea like pain was all consuming, 24 hours a day. I felt too preoccupied with the pain to eat, read, watch telly, or have much of a conversation.
They sent me home with pain killers, yesterday and I now have a few periods where I can sit up and drink soup. But this seems like a very slow process to me who has never been in hospital and brings up all my impatience and fear of not having some control of my life. A lot to think about….eventually.
Still, there is no diagnosis. Most likely a blocked bile duct but they don’t know why. Monday is a big consultants’ case conference to look at all the results, so we’ll hope there is more news then. So I feel like I am at the end of chapter one, but have no idea how much longer this will go on. The consultant has given me a 4 week ‘sick note’ but I will play it one week at a time and keep people informed.
As you all know, I get a bit embarrassed if too much attention sneaks up on me, but I do want to say how I have been very touched by the concern that is circulating amongst you, and back to me and Jane. It is surprisingly easy to retreat into feeling sorry for oneself in these circumstances.
Also I am happy for you to pass any of this information on to colleagues who might be interested.
I’ll be in touch,
Love,
David (and Jane)
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