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
Monday 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.
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