Time to go to hospital again tomorrow to see if Steve's white blood cell count has improved sufficiently to continue treatment. We have our doubts about the likelihood of that happening as he's been fighting off a cold most of the week and that must have taken its toll on his immune system (although he appears to have won that particular battle!)
Time to talk to the doctor about the effectiveness of the drug trial compared to what we might have expected to see in terms of tumour size, had he received the standard treatment instead. We want to discuss what other options will be open to him in the future, should he decide to continue and complete the drug trial; assuming there are other options, would it be better to continue treatment with little or no break to ensure continuity and zap Leo whilst he is still relatively small, or hold it in reserve to take action if/when the tumour enlarges/spreads?
We need to find out what monitoring we can expect once this current round of treatment is finished. Also, will Steve have the opportunity to take part in future drug trials (assuming he fits the eligibility criteria) or is there is a "ration" of one trial per person.
Asking questions is the easy bit. Making sense of the answers and reaching an informed decision is rather harder.
Monday, 19 October 2009
Friday, 16 October 2009
Four months on and still going strong (mostly)
There are some events that you measure your life by: going to Uni, meeting your long term partner, moving into your first home, having a baby.. Diagnosis of an incurable disease is one such event. The news on 16 June 2009 that Steve has mesothelioma marked a watershed in our lives - "normal" life ended that day, and living with cancer began. There's no getting away from the fact that our lives will never be the same again. But four months on, we're still going strong - most of the time.
The emotional roller coaster takes us up and down. Until someone discovers a cure for this horrible disease, we have to accept that Steve won't get better in the conventional sense of the word. "Get well soon" cards aren't appropriate in our circumstances (what greeting do you send to someone who is terminally ill?) and "carefree" is no longer part of our life's vocabulary.
The frequent, regular visits to hospital begin to blur together after a while - eating into precious time and chopping it into small, disjointed blocks which makes it difficult to build up a head of steam to start or progress projects where continuity of more than a few days at a time is needed. Plans are made, revised, abandoned and reinvented - living with uncertainty is like that.
The physical roller coaster reflects the pattern of chemo, and is dominated by the side effects of nausea, strange tastes and tiredness. Underlying this is the knowledge of Steve's vulnerability to infection now his immune system is compromised by the treatment. He is acutely aware of any change in his body, questioning whether it might be a sign of the cancer spreading, rather than something mundane, such as indigestion, a muscle ache or a common cold.
Frustration looms large - wanting to do something, anything, to fight this disease and beat the odds on survival. Submitting to chemo, only to find three months later and four cycles of treatment further on that it has not resulted in any significant change is disappointing, there's no getting away from it. We need to think very carefully about whether to continue the drug trial, or switch to the standard treatment - something to discuss in detail with the doctor, next week.
However, were it not for the physical side effects of the treatment, Steve would not know that he has mesothelioma. His breathing is not laboured; he walks into town and back without a problem. He has no chest pain (or any other pain, for that matter). During his "rest" weeks from treatment, we have crammed in a lot of living, getting out and about more than before all this began. At such times, we still wonder whether the diagnosis was correct - it's not supposed to be like this (not that we're complaining...)
It's scary looking into the future when there is no known cure for this type of cancer. Because he took part in the drug trial, Steve will get a second bite of the bitter chemo cherry. However, there is no back up treatment available on the NHS if/when he starts to deteriorate thereafter. We take comfort from the pioneering work currently being done in Germany using a technique called chemoembolization to treat mesothelioma. We may yet get to meet Prof Vogl in Frankfurt. But we hope it won't come to that until a long time in the future. In the meantime, we have plenty of living to do in the here and now.
The emotional roller coaster takes us up and down. Until someone discovers a cure for this horrible disease, we have to accept that Steve won't get better in the conventional sense of the word. "Get well soon" cards aren't appropriate in our circumstances (what greeting do you send to someone who is terminally ill?) and "carefree" is no longer part of our life's vocabulary.
The frequent, regular visits to hospital begin to blur together after a while - eating into precious time and chopping it into small, disjointed blocks which makes it difficult to build up a head of steam to start or progress projects where continuity of more than a few days at a time is needed. Plans are made, revised, abandoned and reinvented - living with uncertainty is like that.
The physical roller coaster reflects the pattern of chemo, and is dominated by the side effects of nausea, strange tastes and tiredness. Underlying this is the knowledge of Steve's vulnerability to infection now his immune system is compromised by the treatment. He is acutely aware of any change in his body, questioning whether it might be a sign of the cancer spreading, rather than something mundane, such as indigestion, a muscle ache or a common cold.
Frustration looms large - wanting to do something, anything, to fight this disease and beat the odds on survival. Submitting to chemo, only to find three months later and four cycles of treatment further on that it has not resulted in any significant change is disappointing, there's no getting away from it. We need to think very carefully about whether to continue the drug trial, or switch to the standard treatment - something to discuss in detail with the doctor, next week.
However, were it not for the physical side effects of the treatment, Steve would not know that he has mesothelioma. His breathing is not laboured; he walks into town and back without a problem. He has no chest pain (or any other pain, for that matter). During his "rest" weeks from treatment, we have crammed in a lot of living, getting out and about more than before all this began. At such times, we still wonder whether the diagnosis was correct - it's not supposed to be like this (not that we're complaining...)
It's scary looking into the future when there is no known cure for this type of cancer. Because he took part in the drug trial, Steve will get a second bite of the bitter chemo cherry. However, there is no back up treatment available on the NHS if/when he starts to deteriorate thereafter. We take comfort from the pioneering work currently being done in Germany using a technique called chemoembolization to treat mesothelioma. We may yet get to meet Prof Vogl in Frankfurt. But we hope it won't come to that until a long time in the future. In the meantime, we have plenty of living to do in the here and now.
How you think about a problem is more important than the problem itself,
so always think positively
Norman Vincent Peale
(Thanks, Glyn!)
Tuesday, 13 October 2009
Not swimming, not drowning, just treading water...again....
We were fearing the worst (Leo grown), hoping for the best (Leo shrunk) but have ended up somewhere in the middle - the doctor says that give or take a few millimetres (larger or smaller, we know not) the tumour has not changed significantly in size. She says this is good. We are not so sure.
After four cycles of treatment, we would have expected a clear sign of change to assess the effectiveness of the chemo; something to help us decide whether to continue with the last two cycles of the drug trial treatment or move on to the "standard" treatment. Whilst a "no change" outcome is miles better than the worst case scenario, the lack of any significant reduction in tumour size some two thirds of the way through the programme has planted the seeds of doubt as to whether the last three months have been a waste of time.....
Steve has the option to withdraw from the trial if/when he wants to. He didn't have to make that decision today - it was made for him: once again, one of the test results came back below the threshold specified in the drug trial protocol to proceed with chemo, so treatment is on hold for a week.
The hospital dates on the calender and in the diaries have been rubbed out and the new regime has been pencilled in, although it remains to be seen whether test results will be satisfactory by next Tuesday - there was a two week gap between cycles the last time this happened, and on that occasion the test results were better than today's. Once again, my work programme is out of sync with Steve's treatment, but it's too late now to make major changes...and anyway it could all change again next week.
Still, the unexpected extra week's rest from hospital visits gives us time to sit back, take stock, do some thinking, write down the key questions we need to ask the doctor when we see her next week and maybe come to a view on how to go forward in the light of her answers.
Perhaps we are overreacting to the "stable" result. I'm sure that there are many others who would love to be in this position. If the tumour isn't any bigger, then Steve isn't any worse. In a cancer that can be aggressive, we should be thankful for that. Delaying treatment by a week or two would still allow the last cycle to be completed by the end of November/early December and hopefully give Steve a Christmas/New Year largely free of nausea and fatigue, which would be a good present. Always assuming that he decides to continue on the drug trial. Time to pause for thought.
After four cycles of treatment, we would have expected a clear sign of change to assess the effectiveness of the chemo; something to help us decide whether to continue with the last two cycles of the drug trial treatment or move on to the "standard" treatment. Whilst a "no change" outcome is miles better than the worst case scenario, the lack of any significant reduction in tumour size some two thirds of the way through the programme has planted the seeds of doubt as to whether the last three months have been a waste of time.....
Steve has the option to withdraw from the trial if/when he wants to. He didn't have to make that decision today - it was made for him: once again, one of the test results came back below the threshold specified in the drug trial protocol to proceed with chemo, so treatment is on hold for a week.
The hospital dates on the calender and in the diaries have been rubbed out and the new regime has been pencilled in, although it remains to be seen whether test results will be satisfactory by next Tuesday - there was a two week gap between cycles the last time this happened, and on that occasion the test results were better than today's. Once again, my work programme is out of sync with Steve's treatment, but it's too late now to make major changes...and anyway it could all change again next week.
Still, the unexpected extra week's rest from hospital visits gives us time to sit back, take stock, do some thinking, write down the key questions we need to ask the doctor when we see her next week and maybe come to a view on how to go forward in the light of her answers.
Perhaps we are overreacting to the "stable" result. I'm sure that there are many others who would love to be in this position. If the tumour isn't any bigger, then Steve isn't any worse. In a cancer that can be aggressive, we should be thankful for that. Delaying treatment by a week or two would still allow the last cycle to be completed by the end of November/early December and hopefully give Steve a Christmas/New Year largely free of nausea and fatigue, which would be a good present. Always assuming that he decides to continue on the drug trial. Time to pause for thought.
Sunday, 11 October 2009
Nearly crunch time ..Cycle 4, Day 20
Tomorrow will be the last day of Cycle 4 of Steve's chemotherapy, so we start to brace ourselves for a number of things:
- the results of the CT scan and X-rays on Tuesday to see how Leo is doing
- another two cycles of Cisplatin and Velcade (not forgetting the associated side effects and frequent hospital visits) if this combination of chemo is doing the job of knocking Leo down to size
- the start of a new regime using Cisplatin and Alimta (with fewer hospital visits but different side effects)
- a break between chemo cycles if any of the test results come back outside the drug trial parameters, but the trail drug is otherwise being effective
Who knows what will happen in two days time? You'll have to watch this space to find out.
Meanwhile, I'll be off in Bristol from tomorrow morning until lunchtime on Tuesday for work-related training, so there is the dilemma of when to phone Steve to find out the news. Probably best to wait until the training course is over and I can find a quiet place to myself (just in case Leo isn't behaving himself). But it will be hard to concentrate that morning, not knowing the outcome.
Lots of patience and positive thoughts required!
Friday, 9 October 2009
Flipping the switch ...Cycle 4, Day 18
At long last - Tuesday saw the start of things getting better in terms of chemo side effects. By Wednesday, the switch had flipped and Steve lasted a whole day without taking an anti-sickness tablet. He also stayed awake all day, enjoyed a bottle of wine with our evening meal and had a "normal" bed time.
The feeling good turnaround happened just in time to deal with a crisis on the domestic front - the fridge died. Having established that it would cost almost as much to repair the old one as to buy new, we spent the rest of the day researching a replacement that would fit into the space available, tracking down a retailer with the chosen model in stock, and taking an unscheduled trip to High Wycombe to buy and collect. So much for our plans to work on photography stuff! Still, at least we now have fresh food to offer Katie and George, on a flying visit between Gatwick airport and Yorkshire, on their return from a short break in Spain.
Here's hoping the next few days are a bit calmer and more productive, and that Steve can make the most of his remaining "rest" days before chemo resumes next week, always assuming that treatment goes to plan. A phrase with the words "eggs" "chickens" and "hatched" springs to mind...
The feeling good turnaround happened just in time to deal with a crisis on the domestic front - the fridge died. Having established that it would cost almost as much to repair the old one as to buy new, we spent the rest of the day researching a replacement that would fit into the space available, tracking down a retailer with the chosen model in stock, and taking an unscheduled trip to High Wycombe to buy and collect. So much for our plans to work on photography stuff! Still, at least we now have fresh food to offer Katie and George, on a flying visit between Gatwick airport and Yorkshire, on their return from a short break in Spain.
Here's hoping the next few days are a bit calmer and more productive, and that Steve can make the most of his remaining "rest" days before chemo resumes next week, always assuming that treatment goes to plan. A phrase with the words "eggs" "chickens" and "hatched" springs to mind...
Tuesday, 6 October 2009
Catching the rays .......Cycle 4, Day 15
Although it's been wet and windy outside, Steve's been inside catching the rays today: X-rays and CT beams to give us the insider's view on what Leo has been up to over the last eight weeks: shrunk, stayed stable or grown. Whether or not Steve stays on the Velcade drug trail will depend on the answer. All will be revealed next Tuesday. And once again, Steve will be on his own when he hears the news, as I have to be in Bristol for a training event. Plus ca change...
On the positive side, today for the first time in this cycle of treatment Steve has not needed to take an antiemetic tablet (so far at least). And he's still wide awake (unlike this time yesterday, when he was very drowsy). It looks like cycle 4's chemo side effects are subsiding at long last, which makes what's left of the "rest week" look much more promising.
It won't be a repeat of cycle 3, day 15 when we walked along the prom at Clevedon (photo posted at long last on blog for September 15th) but we hope to get out and about again on Friday. By then we will have done some work on our submissions for the RPS publication Portfolio 2, an upcoming RPS event at Amersham, and my Woodstock exhibition - things which we keep us out of mischief for the next few days.
Oh, how wonderful it is to start feeling half-human again (and I'm not the one taking the poison). Steve really is doing remarkably well, all things considered.
Thanks to all of you who have been in touch in the last few days - I'm sure your positive thoughts have helped turn the tide of miserableness that's been washing over us recently. I think we're back on the upward slope now...
On the positive side, today for the first time in this cycle of treatment Steve has not needed to take an antiemetic tablet (so far at least). And he's still wide awake (unlike this time yesterday, when he was very drowsy). It looks like cycle 4's chemo side effects are subsiding at long last, which makes what's left of the "rest week" look much more promising.
It won't be a repeat of cycle 3, day 15 when we walked along the prom at Clevedon (photo posted at long last on blog for September 15th) but we hope to get out and about again on Friday. By then we will have done some work on our submissions for the RPS publication Portfolio 2, an upcoming RPS event at Amersham, and my Woodstock exhibition - things which we keep us out of mischief for the next few days.
Oh, how wonderful it is to start feeling half-human again (and I'm not the one taking the poison). Steve really is doing remarkably well, all things considered.
Thanks to all of you who have been in touch in the last few days - I'm sure your positive thoughts have helped turn the tide of miserableness that's been washing over us recently. I think we're back on the upward slope now...
Monday, 5 October 2009
Like the lady said... ....Cycle 4, Day 14
In an interview in today's paper, actor Dame Maggie Smith talked about her experience of having (breast) cancer. "It was hideous...not so good" she said. The chemotherapy "was very peculiar, something that makes you feel much worse than the cancer itself, a very nasty thing". You hit the nail on the head there, Dame Maggie.
However, she went on to say "I used to go to treatment on my own, and nearly everyone else there was with someone....Why would you want to make anyone sit in those places?"
The answer, Dame Maggie, is simple. It's far better to sit with someone you love whilst they are being treated, pass the time with them, do an bit of fetching and carrying, share a joke, hold their hand when they are waiting for the results of tests, scans and assessments, than to wait anxiously at home for news, not knowing what's going on, wondering whether the long silence means there's a problem...
No one is making me spend time in hospital: I'm there by choice. Sharing the experience helps me understand better what Steve is going through as part of his treatment, and is a comfort and support to him.
I can (and do, when unavoidable) leave Steve on his own when work takes me away from home, as it did today. He was in bed, half-asleep, and still feeling rough when I arrived home late afternoon. I wish I could wave a magic wand and make it all better. But life isn't like that...so we batten down the hatches, grit our teeth (and all those other corny sayings about carrying on in the face of adversity) and remind ourselves that the side effects of chemo won't go on forever:
However, she went on to say "I used to go to treatment on my own, and nearly everyone else there was with someone....Why would you want to make anyone sit in those places?"
The answer, Dame Maggie, is simple. It's far better to sit with someone you love whilst they are being treated, pass the time with them, do an bit of fetching and carrying, share a joke, hold their hand when they are waiting for the results of tests, scans and assessments, than to wait anxiously at home for news, not knowing what's going on, wondering whether the long silence means there's a problem...
No one is making me spend time in hospital: I'm there by choice. Sharing the experience helps me understand better what Steve is going through as part of his treatment, and is a comfort and support to him.
I can (and do, when unavoidable) leave Steve on his own when work takes me away from home, as it did today. He was in bed, half-asleep, and still feeling rough when I arrived home late afternoon. I wish I could wave a magic wand and make it all better. But life isn't like that...so we batten down the hatches, grit our teeth (and all those other corny sayings about carrying on in the face of adversity) and remind ourselves that the side effects of chemo won't go on forever:
If you're going through hell, keep going
Winston Churchill
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