"When we talk of tomorrow the Gods laugh".
I had the pathology results from my operation on Tuesday. They could hardly have been worse. There was a cancer. It was not a thyroid cancer but a secondary tumour from the cancer I had last year. As such it cannot be treated by radio-active iodine and I've had all the radio-therapy my body can take. The pathology examination indicated that the surgeon was not able to remove all the cancer and had to leave some behind rather than cut a hole in my throat. The only further treatment is more radical surgery to my throat larynx and pharynx. I was referred on to the Q.E. hospital in Birmingham where such surgery would be done. Elaine and I went up on Friday morning. We had a full description of the surgery as well as further information about the likelihood of success. The surgeon was not encouraging. One is left with an artificial larynx which can only be used when you are not breathing. You breathe through a hole in the neck rather than through mouth or nose and it is only possible to eat a soft diet. As this is a secondary cancer the chance of successfully removing all the cancer drops to less than 25%. On top of that it seems that the majority of people who actually have this surgery regret it eventually.
We were sent away to think about it but so far it hasn’t needed very much thinking about. We both agree that it doesn’t sound worth it. Perhaps if there was some guarantee of success it might be worth contemplating but with so little likelihood of a recovery why would I want to be so incapacitated?
So what comes next? There is a chance of some palliative chemo-therapy which should slow down the development of the cancer and give me a bit more time (is it too much to hope that some new cure might come along in the meantime?). Other than that it’s on to alternative therapies and quacks. There is a doctor in Bristol who can do a DNA array blood test to see what type of cancer is present. The blood can also be tested to see how the cancer reacts to various chemo-therapy agents. I’m told there is no chemo-therapy agent that will touch head and neck cancer so this may be a wild goose chase. It’s also possible that if something does appear to work it may not be available on the NHS – where have you heard that before?
I’m told I could have anything between 9 months and 4 years but that everyone and every cancer is different. We’ll see, but 4 years is definitely optimistic. For the first time since this all began I've felt depressed and morose. I had felt confident that my treatment would be effective and that I'd be able to look forward to a recovery. The discovery that this isn't the case has been a bit of a body blow. I've tried to keep busy and occupied but keeping thoughts of mortality out of my mind is hard. I know that some folks with awful illnesses that lead to a long terminal decline must go through this for years and years so I hope that when I've got more familiar with my situation I'll be able to do what everybody recommends - live each day to the full, enjoy as much as possible, plan something for every day and so on. Yesterday we went to see the Miracle Theatre Company at the No 8 Arts Centre in Pershore. They were performing 'Taming of the Shrew' under the Shindig flag. It was amazing. It was a mixture of original and modern interpretation. The set was a simple collection of stacked blocks which were in turn a university, a town house, a mountain top, a gym, a tailors shop, an urban park and so on. There were only five performers and so the editing of the script and characters was quite liberal but as entertainment it was great, apart from those times when my mind went back to thoughts of my own mortality. Unfortunately I don't think they are doing any other local performances but should you get the chance do go and see them.
Both Elaine and I are so grateful for your expressions of hope, support and love and want to thank you all for everything you have all said and done so far. It’s meant a huge amount to us. I hope that at some point I may have some better news for you – but don’t count on it.
It seems to me that the NHS have almost counted me out for now. I have no future appointments arranged and we are having to contact the hospital to tell them what we want. However there are alternative treatments out there and some sound hopeful if not for a cure then at least for controlling the cancer and extending life. The trouble is that some are made to sound so effective and cheap (intravenous vitamin C for example) one wonders why anybody is dieing from cancer at all. We'll be investigating some of these therapies and hopefully benefiting from the appropriate ones.
I don’t know whether to continue this blog – nobody wants a continuing series of depressingly bad news. But then, if there is good news to report, that could be worth a posting. It was only two days ago that we saw the surgeon and got the bad news. I hope I’ll feel happier and more settled in a few days. In the meantime, if you phone, expect to hear someone who sounds very little like I used to. I have asked for speech therapy but nothing has been arranged yet. We're also hoping for some couselling and an appointment with the Dalek to discuss palliative care (he's also in charge of poisoning) so there are some ways to go.
We'll that's the latest news. I regret it's not better - but I'm not gone yet!
Friday 26 September 2008
Thursday 18 September 2008
Back Home
I have to start by saying heartfelt thanks to all of you that have sent emails, phoned, posted cards, visited me at home or in hospital or responded over the vle. Your support, prayers, best wishes and thoughts have been a tremendous boost and great encouragement. I'm not ready to give up although there have been some black moments over the last couple of months. It is deeply moving to know that so many friends, relations, colleagues and acquaintances are rooting for me - if only the power of thought alone were a cure!
So - what's the news?
Well, as you know I went in to hospital for the second lot of surgery last week. Friday morning at 9.00am saw me in the operating theatre having my thyroid gland removed. As far as I can tell this took about 4 hours and I was out again and in recovery by 2.00pm when the ENT surgeon came to see me. He told me they had removed all my thyroid and several parathyroid glands. He felt they had managed to removed all the tumorous tissue but it seems to have been a close run thing - 'sticky' as another surgeon described it. I'm not sure what this means but a third surgeon told me that the tumour was towards the back of the thyroid. I suspect that it may have come close to attaching to my throat or gullet but they were able to separate it. This could mean that traces of the growth have been left behind but the pathology results are not yet available. If they show anything suspicious I will have to go and spend a few days in the oncology centre in Cheltenham being treated with radio-active iodine. This is designed to seek out any remaining thyroid cells and destroy them together with any cancer they carry. Apparently the prognosis for thyroid cancer is pretty good and there is a high rate of dealing with it successfully. The Head and Neck surgeon who was in attendance told me that there were no signs of secondary growths from my tumour of last year. The only cancer they found was within the thyroid and visual inspection appeared to confirm what the PET scan suggested, last year's cancer has not regrown anywhere. As treatment for that ended in November they would expect to see evidence of re-growth by now.
So for now I'm left with no thyroid and one, bruised parathyroid gland. The glands all have different roles in controlling the levels of hormones and calcium in the bloodstream and consequently I will now have to live on a diet of pills for the rest of my life. Still I know that many people regularly take similar medication so I'll not be alone. Unfortunately the surgery showed that the nerve that drives my left vocal chord has been damaged beyond recovery. This chord will not work again and as a result my voice is still weak. Part of the surgery involved shoving a tube down my throat to prevent any risk of my throat collapsing and blocking my airway. Throats don't take too kindly to this kind of abuse so, at the moment, my voice is even weaker than it was. It is working though and there are several grounds to hope that it will improve. These range from self-healing where the right vocal chord tends to stretch over towards the left and consequently close the gap between them, to voice therapy, to a form of surgery whereby the palsied chord is injected with Teflon to make it stiffer and larger thus vibrating more easily and also closing the space. I've also done a little research on the internet and discovered that there are all sorts of voice amplifiers that sit in a shirt pocket and use a throat microphone to enable (almost) normal communication - so that'll be all right then. Of all the things that have happened the thought that I'd be left with no voice, unable to communicate and take part in normal conversation was the most distressing.
Back to last Friday. By about 3.00pm one of the nurses on the critical care ward (more of this later) had phoned Elaine and told her it was OK to come in and see me. Naturally she was concerned to hear that I was in critical care and came straight away only to find me sitting up, talking (well whispering really), waving, eating lunch and generally looking about a thousand times better that she expected. I was in the critical care ward because there were no other beds available. I was well looked after but spent a disturbed night as there was another gentleman on the ward who was moaning and groaning and calling out all night. They gave me a reading lamp and some ear-plugs and I read myself to sleep and resumed reading when I awoke. I survived the night and was eventually returned to the Head and Neck ward on Saturday afternoon. By Sunday I was ready to go home but I still had a drain in place and several cannulas in my hand. Another day in hospital. On Monday they decided that my blood levels showed a calcium deficiency. More drips, pills and tablets. No change. Another drip. Still no improvement. More blood tests on Tuesday morning. Calcium levels had dropped. Was I getting pins and needles? I didn't think so but the chairs were so high that I wasn't sure whether I was getting a tingling in my legs or not. Certainly my lip felt strange but surely it had been like that before the surgery - I'd put it down to my nerves recovering from last year's surgery; just what they'd told me would happen. It's really funny being asked how something feels - trying to be precise about how a feeling has changed is almost impossible as how can you quantify a physical sensation and then compare it to one of a day or two ago? Still the calcium levels had dropped and it was clearly a concern for them, they didn't want to discharge me. Instead I had to have a giant drip that would take ten hours or more. So that took all of Tuesday right up to 1.00am Wednesday morning. After breakfast on Wednesday morning the vampire came again to draw blood. The results showed that my level had gone up from 1.72 (worry threshold 1.80) to about 2.35 (comfort threshold over 2.00). I was free to go. After days that had been so boring that I couldn't even motivate myself to read a good book, I felt like a rabbit with the runs - I couldn't get out of there fast enough. I had to wait a while for E. to arrive with the Honda chariot and carry me away. But not for long. I have to go back tomorrow for a follow up blood test and to have my stitches removed and then again next Tuesday to meet the butcher and see what the path. results show us. As I said before, I have a strong suspicion that they'll want me in again for a few days of boring, radio-active isolation.
And then we'll see!
So, once again thanks to you all for your thoughts, hopes and support. As I've heard so many times before, you don't really appreciate your good health until you loose it. I feel as though I've stepped over a huge rock to arrive where I am now and I'm desperately searching for a way back to the healthy side. I asked one of the surgeons whether I could be cautiously optimistic now the thyroid was out. He thought about it for a while and then said that I could certainly be less pessimistic. I suppose that will have to do for now.
Love to you all,
Ron
So - what's the news?
Well, as you know I went in to hospital for the second lot of surgery last week. Friday morning at 9.00am saw me in the operating theatre having my thyroid gland removed. As far as I can tell this took about 4 hours and I was out again and in recovery by 2.00pm when the ENT surgeon came to see me. He told me they had removed all my thyroid and several parathyroid glands. He felt they had managed to removed all the tumorous tissue but it seems to have been a close run thing - 'sticky' as another surgeon described it. I'm not sure what this means but a third surgeon told me that the tumour was towards the back of the thyroid. I suspect that it may have come close to attaching to my throat or gullet but they were able to separate it. This could mean that traces of the growth have been left behind but the pathology results are not yet available. If they show anything suspicious I will have to go and spend a few days in the oncology centre in Cheltenham being treated with radio-active iodine. This is designed to seek out any remaining thyroid cells and destroy them together with any cancer they carry. Apparently the prognosis for thyroid cancer is pretty good and there is a high rate of dealing with it successfully. The Head and Neck surgeon who was in attendance told me that there were no signs of secondary growths from my tumour of last year. The only cancer they found was within the thyroid and visual inspection appeared to confirm what the PET scan suggested, last year's cancer has not regrown anywhere. As treatment for that ended in November they would expect to see evidence of re-growth by now.
So for now I'm left with no thyroid and one, bruised parathyroid gland. The glands all have different roles in controlling the levels of hormones and calcium in the bloodstream and consequently I will now have to live on a diet of pills for the rest of my life. Still I know that many people regularly take similar medication so I'll not be alone. Unfortunately the surgery showed that the nerve that drives my left vocal chord has been damaged beyond recovery. This chord will not work again and as a result my voice is still weak. Part of the surgery involved shoving a tube down my throat to prevent any risk of my throat collapsing and blocking my airway. Throats don't take too kindly to this kind of abuse so, at the moment, my voice is even weaker than it was. It is working though and there are several grounds to hope that it will improve. These range from self-healing where the right vocal chord tends to stretch over towards the left and consequently close the gap between them, to voice therapy, to a form of surgery whereby the palsied chord is injected with Teflon to make it stiffer and larger thus vibrating more easily and also closing the space. I've also done a little research on the internet and discovered that there are all sorts of voice amplifiers that sit in a shirt pocket and use a throat microphone to enable (almost) normal communication - so that'll be all right then. Of all the things that have happened the thought that I'd be left with no voice, unable to communicate and take part in normal conversation was the most distressing.
Back to last Friday. By about 3.00pm one of the nurses on the critical care ward (more of this later) had phoned Elaine and told her it was OK to come in and see me. Naturally she was concerned to hear that I was in critical care and came straight away only to find me sitting up, talking (well whispering really), waving, eating lunch and generally looking about a thousand times better that she expected. I was in the critical care ward because there were no other beds available. I was well looked after but spent a disturbed night as there was another gentleman on the ward who was moaning and groaning and calling out all night. They gave me a reading lamp and some ear-plugs and I read myself to sleep and resumed reading when I awoke. I survived the night and was eventually returned to the Head and Neck ward on Saturday afternoon. By Sunday I was ready to go home but I still had a drain in place and several cannulas in my hand. Another day in hospital. On Monday they decided that my blood levels showed a calcium deficiency. More drips, pills and tablets. No change. Another drip. Still no improvement. More blood tests on Tuesday morning. Calcium levels had dropped. Was I getting pins and needles? I didn't think so but the chairs were so high that I wasn't sure whether I was getting a tingling in my legs or not. Certainly my lip felt strange but surely it had been like that before the surgery - I'd put it down to my nerves recovering from last year's surgery; just what they'd told me would happen. It's really funny being asked how something feels - trying to be precise about how a feeling has changed is almost impossible as how can you quantify a physical sensation and then compare it to one of a day or two ago? Still the calcium levels had dropped and it was clearly a concern for them, they didn't want to discharge me. Instead I had to have a giant drip that would take ten hours or more. So that took all of Tuesday right up to 1.00am Wednesday morning. After breakfast on Wednesday morning the vampire came again to draw blood. The results showed that my level had gone up from 1.72 (worry threshold 1.80) to about 2.35 (comfort threshold over 2.00). I was free to go. After days that had been so boring that I couldn't even motivate myself to read a good book, I felt like a rabbit with the runs - I couldn't get out of there fast enough. I had to wait a while for E. to arrive with the Honda chariot and carry me away. But not for long. I have to go back tomorrow for a follow up blood test and to have my stitches removed and then again next Tuesday to meet the butcher and see what the path. results show us. As I said before, I have a strong suspicion that they'll want me in again for a few days of boring, radio-active isolation.
And then we'll see!
So, once again thanks to you all for your thoughts, hopes and support. As I've heard so many times before, you don't really appreciate your good health until you loose it. I feel as though I've stepped over a huge rock to arrive where I am now and I'm desperately searching for a way back to the healthy side. I asked one of the surgeons whether I could be cautiously optimistic now the thyroid was out. He thought about it for a while and then said that I could certainly be less pessimistic. I suppose that will have to do for now.
Love to you all,
Ron
Sunday 7 September 2008
Here We Go Again
It's Sunday, it's lunchtime and in 20 minutes or so we should be heading off to friends for lunch. Hardly the best time to start writing here. But I have to make a start of sorts as there's a lot to plough through and I can't put it off any more.
This blog was meant to be a thing of hope and optimism. The fact that there have been few recent entries is a reflection of how, after such a comfortable start, things have begun to get more oppressive and unpleasant. These are not feelings and attitudes I want to share with friends and family and so I've kept them, largely, to myself. However, I also feel compelled by some personal need to catalogue all the ups and downs and many of you are aware that I've got more surgery coming up and you've expressed a wish to be kept informed. Again I think it's the anaesthesia approach. The more familiar I am with what they are doing the less fearful I am. If I know the worst and feel I can cope with it then I have little to fear. Hence my new motto - "Prepare for the worst but hope for the best". So what comes next may seem to be depressing reading. If so I'm sorry. I'm not depressed, I'm keeping busy and enjoying as much as I can but I can see that I could be facing a bit of a struggle from now on - let's hope only in the shorter term.
I try to avoid thinking about what the worst really means. As a consequence I am now suffering the after effects of last summers trauma. I was told that my nerves would take about a year to recover physically (not emotionally). I'm beginning to discover what this means. The stiffness and tighness is now joined by tingling, aching, wincing moments of shooting pains, numbness and tenderness, toothache in absent teeth, a pull on my lip as though I've been caught on a fish hook and a swollen feel in my cheek which makes me think that I didn't just dream about Mike Tyson. If you've read the previous instalments you will know that up until early June everything seemed hunky dory. I felt as though I was making a good recovery, that the cancer had gone and that I would be left with a number of problems but nothing too serious. It looked as though I had beaten the beast and could get on with retirement. It was not to be so simple and I look at myself now as a bit naive and simple for thinking it would all be so easy.
You probably know that I have partly lost my voice. After three scans and two physical examinations the butchers have finally decided that this is due to a cancer in my thyroid gland. If so, this is likely to be a completely new cancer, unconnected with the one I had last year. There are a few points that support this diagnosis, the main one being that there are no other signs of cancer anywhere on the scan, another being that this is exactly what the scan shows. Had it been a secondary from the tumour I had last summer the docs would have expected to see a number of 'hot-spots' in different parts of my body. As it is, there is only one which the scan shows as being in my thyroid. In some ways this is a hopeful development; not as hopeful as there being no cancer at all but, I'm told, thyroid cancer is fairly easy to deal with a good chance of a successful outcome. If I had to have anything, this is one of the better cancers to have. The other side of this diagnosis is that eight months or so is about when the docs would expect to find signs of secondary cancers. It appears to have developed in the only place that wasn't blasted by the Dalek - the line down the front of my throat which was protected to prevent my spinal chord from being zapped. I also don't know whether a thyroid cancer would explain my voice loss. It has been interesting comparing the approach of the two consultants on my case. One is far more strongly guided by the technology, feeling that if the scan shows it in my thyroid then that's where it is with all the positives that that includes. The other is more intuitive and wonders whether the scan might be misleading. If he is right then his concerns are based on a more unpleasant scenario with more traumatic outcomes.
So this Friday I have to another op. This time they will remove my thyroid so the pathologists can examine it in detail. If they find a cancer inside, surrounded by healthy tissue they will feel they have removed it all. If there is any indication that it has broken out I then have to go and have a dose of radio-active iodine. This seeks out wayward thyroid cells, attaches to them and wipes them out. It also means that I remain radio-active for a few days or so and therefore have to be kept in isolation until I am safe to approach again! Thereafter I have a life of pills to look forward to but I'm beginning to discover that there is a nation of thyroxin takers out there, so I won't be alone.
A worse outcome will be if they find the 'hot-spot' is not a thyroid cancer after all but a secondary from last year's tumour. Good news will be that it's only in my throat and, apparently, nowhere else. Bad news is that removing it could be difficult and the consequences ... well I'm not going into that yet, we'll wait and see.
So, for the last three months I've been living life in slow motion. The response times within the NHS are ponderous to say the least. Wait two weeks for a scan, wait another two weeks for the result, wait another two weeks for another scan and another two weeks for the results of that ... as was pointed out to me, there has been a remarkable lack of urgency. In the meantime it looks very much as though our planned trip to Canada and California this October will have to be forfeit, I can't see that I'll have recovered from the surgery and the cancer sufficiently to take the risk - getting insurance is going to be prohibitively expensive. In some ways that is a bigger regret than having to undergo more surgery. It has also put life into a kind of suspention. It has been hard to plan or even to look forward knowing that behind this is a possibility of more hospitalisation, more surgery and more time spent dealing with the cancer than getting out and doing things.
So - I'm going to leave it there, if you got this far thanks for taking so much interest. By the time you read this my op may well be over and I may even be composing the next entry telling you what the docs found. I go in later on today, there's a bit of me that can't wait. If I've got this thing inside me I'll be only too pleased to get rid of it. By this time tomorrow it should all be over, with luck forever - fingers crossed!
This blog was meant to be a thing of hope and optimism. The fact that there have been few recent entries is a reflection of how, after such a comfortable start, things have begun to get more oppressive and unpleasant. These are not feelings and attitudes I want to share with friends and family and so I've kept them, largely, to myself. However, I also feel compelled by some personal need to catalogue all the ups and downs and many of you are aware that I've got more surgery coming up and you've expressed a wish to be kept informed. Again I think it's the anaesthesia approach. The more familiar I am with what they are doing the less fearful I am. If I know the worst and feel I can cope with it then I have little to fear. Hence my new motto - "Prepare for the worst but hope for the best". So what comes next may seem to be depressing reading. If so I'm sorry. I'm not depressed, I'm keeping busy and enjoying as much as I can but I can see that I could be facing a bit of a struggle from now on - let's hope only in the shorter term.
I try to avoid thinking about what the worst really means. As a consequence I am now suffering the after effects of last summers trauma. I was told that my nerves would take about a year to recover physically (not emotionally). I'm beginning to discover what this means. The stiffness and tighness is now joined by tingling, aching, wincing moments of shooting pains, numbness and tenderness, toothache in absent teeth, a pull on my lip as though I've been caught on a fish hook and a swollen feel in my cheek which makes me think that I didn't just dream about Mike Tyson. If you've read the previous instalments you will know that up until early June everything seemed hunky dory. I felt as though I was making a good recovery, that the cancer had gone and that I would be left with a number of problems but nothing too serious. It looked as though I had beaten the beast and could get on with retirement. It was not to be so simple and I look at myself now as a bit naive and simple for thinking it would all be so easy.
You probably know that I have partly lost my voice. After three scans and two physical examinations the butchers have finally decided that this is due to a cancer in my thyroid gland. If so, this is likely to be a completely new cancer, unconnected with the one I had last year. There are a few points that support this diagnosis, the main one being that there are no other signs of cancer anywhere on the scan, another being that this is exactly what the scan shows. Had it been a secondary from the tumour I had last summer the docs would have expected to see a number of 'hot-spots' in different parts of my body. As it is, there is only one which the scan shows as being in my thyroid. In some ways this is a hopeful development; not as hopeful as there being no cancer at all but, I'm told, thyroid cancer is fairly easy to deal with a good chance of a successful outcome. If I had to have anything, this is one of the better cancers to have. The other side of this diagnosis is that eight months or so is about when the docs would expect to find signs of secondary cancers. It appears to have developed in the only place that wasn't blasted by the Dalek - the line down the front of my throat which was protected to prevent my spinal chord from being zapped. I also don't know whether a thyroid cancer would explain my voice loss. It has been interesting comparing the approach of the two consultants on my case. One is far more strongly guided by the technology, feeling that if the scan shows it in my thyroid then that's where it is with all the positives that that includes. The other is more intuitive and wonders whether the scan might be misleading. If he is right then his concerns are based on a more unpleasant scenario with more traumatic outcomes.
So this Friday I have to another op. This time they will remove my thyroid so the pathologists can examine it in detail. If they find a cancer inside, surrounded by healthy tissue they will feel they have removed it all. If there is any indication that it has broken out I then have to go and have a dose of radio-active iodine. This seeks out wayward thyroid cells, attaches to them and wipes them out. It also means that I remain radio-active for a few days or so and therefore have to be kept in isolation until I am safe to approach again! Thereafter I have a life of pills to look forward to but I'm beginning to discover that there is a nation of thyroxin takers out there, so I won't be alone.
A worse outcome will be if they find the 'hot-spot' is not a thyroid cancer after all but a secondary from last year's tumour. Good news will be that it's only in my throat and, apparently, nowhere else. Bad news is that removing it could be difficult and the consequences ... well I'm not going into that yet, we'll wait and see.
So, for the last three months I've been living life in slow motion. The response times within the NHS are ponderous to say the least. Wait two weeks for a scan, wait another two weeks for the result, wait another two weeks for another scan and another two weeks for the results of that ... as was pointed out to me, there has been a remarkable lack of urgency. In the meantime it looks very much as though our planned trip to Canada and California this October will have to be forfeit, I can't see that I'll have recovered from the surgery and the cancer sufficiently to take the risk - getting insurance is going to be prohibitively expensive. In some ways that is a bigger regret than having to undergo more surgery. It has also put life into a kind of suspention. It has been hard to plan or even to look forward knowing that behind this is a possibility of more hospitalisation, more surgery and more time spent dealing with the cancer than getting out and doing things.
So - I'm going to leave it there, if you got this far thanks for taking so much interest. By the time you read this my op may well be over and I may even be composing the next entry telling you what the docs found. I go in later on today, there's a bit of me that can't wait. If I've got this thing inside me I'll be only too pleased to get rid of it. By this time tomorrow it should all be over, with luck forever - fingers crossed!
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