No, I have no idea what it means either. But more of that later.
Sorry I've been away for ages; it's been a very challenging couple of weeks, with the side effects of chemotherapy knocking me for 6 as they failed to lift as they normally have done - the Carousel has turned slowly this time.
But these physical and emotional effects, while being tough to cope with, aren't as interesting as the psychological ones. These I also know well, all be it intermittently since they have tended to coincide with the short(er) low time; but unlike the physical and emotional stuff, I do not pretend to understand them!
2 in 1
How many "me"s are there? Two! At times, usually during that never-never time between sleep and wakefulness (at any time of the night!) "we" have to agree before "we" can do something/anything. And, more strangely, I also feel I have two of everything I really have only one of, and these also have to "agree" before I can do anything. Most bizarre is the disorientation as "2 become 1", a little like those weird "Top of the Pops" or Dr Who special effects from the 70's / 80's!
3 of 11
This is really weird, and I have no idea what it means. But through the night, my chemo-driven dreams will crave "3 of 11", or "we need 3 of the 11" or "which 3 of the 11 is it?". I have no idea what it's 3 of, nor why 3 and 11 are "it".
If anyone has an idea, tell me!
It's been suggested they are chakras (Western tradition says there are 7 but eastern beliefs allow for many interpretations)... Hum... Or that they are "astral energies"(of which, I am told there are 10...), with the first 3 being "awake", "asleep", and "out-of-body"... OK... Or that 11 is the number of people in a team...
Or is it just a random effect of the chemo?
(Diana thinks it's a partial memory of my "attraction" all those years ago to Star Trek's 7 of 9... but that's another story!)
Wednesday, 25 February 2015
Tuesday, 17 February 2015
Why do I blog?
We've just had a great weekend with all the family here, celebrating two birthdays (32 and 5). And, during a lovely evening's conversation, talk turned to my blog.
It seems the children all get a lot from it, and in particular (to my relief) all appreciated my recent thoughts on time. But this triggered the question "why do I do it?"
When I started, this time last year, the answer was simple - keeping friends and family in touch with my progress,
as a means of saving you all "enquiring" as to how I am/was during those early chaotic days. But since then it seems to have evolved into something more.
I have discovered it's turned out to be enormously therapeutic to write; something more than just a diary, its also a powerful tool for me to keep positive, marshalling my thoughts forwards and focusing on "life".
And something else struck me - might I be its most frequent reader? It seems to have the same value "on reflection" as it does "in the moment", specifically during these "low" steroid-less days immediately after treatment it reminds me they don't last forever; they do pass and life eventually returns to something like normal for a week or so. Just like myfitnesspal is a help in maintaining a good diet, so blogspot has become a powerful means of me helping me reflect on the good things in life, whatever it may throw at us.
I admit this reason was not intended or anticipated, but I've always been a great believer in the law of unforeseen consequences, although usually anticipating them to be "unhelpful". Such a pleasant surprise to find this one to be such a positive consequence!
Finally, and tightly tied into this unexpected benefit, please keep those comments coming, however you get them to me. Every one adds to the deep sense of support I get from this blog, whoever writes the words!
It seems the children all get a lot from it, and in particular (to my relief) all appreciated my recent thoughts on time. But this triggered the question "why do I do it?"
When I started, this time last year, the answer was simple - keeping friends and family in touch with my progress,
as a means of saving you all "enquiring" as to how I am/was during those early chaotic days. But since then it seems to have evolved into something more.
I have discovered it's turned out to be enormously therapeutic to write; something more than just a diary, its also a powerful tool for me to keep positive, marshalling my thoughts forwards and focusing on "life".
And something else struck me - might I be its most frequent reader? It seems to have the same value "on reflection" as it does "in the moment", specifically during these "low" steroid-less days immediately after treatment it reminds me they don't last forever; they do pass and life eventually returns to something like normal for a week or so. Just like myfitnesspal is a help in maintaining a good diet, so blogspot has become a powerful means of me helping me reflect on the good things in life, whatever it may throw at us.
I admit this reason was not intended or anticipated, but I've always been a great believer in the law of unforeseen consequences, although usually anticipating them to be "unhelpful". Such a pleasant surprise to find this one to be such a positive consequence!
Finally, and tightly tied into this unexpected benefit, please keep those comments coming, however you get them to me. Every one adds to the deep sense of support I get from this blog, whoever writes the words!
Friday, 13 February 2015
A postscript to time
(I was going to name this post "the last word on time" but that seemed somewhat final.)
Thank you all who responded so positively to my thoughts, I have to admit the concluding sentences were not in mind when I started it! But they work for me, as well as they seem to have for you.
It was my brother who made a very different but as insightful comment; he recalled a post from earlier last year, in which I reflected on the positivity (for me at least) of "counting up" (or not counting at all!).
And he perceptively noticed that my reflections on "powers of 10" had a hint of counting down. He was right, but I have to admit it was not intended.. And as he agrees, this doesn't fundamentally alter the central conclusion of living "now".
Is there a way of living now? "making a difference" was/is my mantra. But Diana was inspired by Roman Kent, who spoke at the recent Auschwitz anniversary ceremony; where he called for an 11th commandment. “You should never be a bystander”. A great philosophy that definitely makes a difference with a deep underlying message.
Thank you all who responded so positively to my thoughts, I have to admit the concluding sentences were not in mind when I started it! But they work for me, as well as they seem to have for you.
It was my brother who made a very different but as insightful comment; he recalled a post from earlier last year, in which I reflected on the positivity (for me at least) of "counting up" (or not counting at all!).
And he perceptively noticed that my reflections on "powers of 10" had a hint of counting down. He was right, but I have to admit it was not intended.. And as he agrees, this doesn't fundamentally alter the central conclusion of living "now".
Is there a way of living now? "making a difference" was/is my mantra. But Diana was inspired by Roman Kent, who spoke at the recent Auschwitz anniversary ceremony; where he called for an 11th commandment. “You should never be a bystander”. A great philosophy that definitely makes a difference with a deep underlying message.
No news
On the 18th April 1930, the BBC decided there was nothing newsworthy worth reporting, so broadcast some piano music instead.
Sort of feels that way today, particularly since I'm listening to Chopin's 24 piano preludes, at the end of a very quiet week.
But maybe there is a little bit of news...
Down: Have had some challenges with tummy aches and pains that have been tough going from time to time, reducing my energy levels and opening up my emotional side; denying me that end-of-cycle fillip. Probably the muscles still healing from last year? I guess the Carousel ran a bit slow this time (seems a good metaphor given my last posting). A quiet time, flowing with the chemo, not fighting it.
Up: was in clinic for chemotherapy yesterday - and am pleased to say my vital signs were 'normal', including white and red cell count (red deficiency could have explained the tiredness, but I'm pleased it was not), and my liver function.
Up: out and about a bit more, including my first bit of physical work in months, helping Diana move a cubic meter of logs! So, combined with today's dose of steroids, the sun's come out and my Carousel horse is back up to speed.
And while I was in therapy, Diana popped out and bought me a new engine for my train set! And a lovely surprise it will be for our grandson!!
Steady as she goes...
Sort of feels that way today, particularly since I'm listening to Chopin's 24 piano preludes, at the end of a very quiet week.
But maybe there is a little bit of news...
Down: Have had some challenges with tummy aches and pains that have been tough going from time to time, reducing my energy levels and opening up my emotional side; denying me that end-of-cycle fillip. Probably the muscles still healing from last year? I guess the Carousel ran a bit slow this time (seems a good metaphor given my last posting). A quiet time, flowing with the chemo, not fighting it.
Up: was in clinic for chemotherapy yesterday - and am pleased to say my vital signs were 'normal', including white and red cell count (red deficiency could have explained the tiredness, but I'm pleased it was not), and my liver function.
Up: out and about a bit more, including my first bit of physical work in months, helping Diana move a cubic meter of logs! So, combined with today's dose of steroids, the sun's come out and my Carousel horse is back up to speed.
And while I was in therapy, Diana popped out and bought me a new engine for my train set! And a lovely surprise it will be for our grandson!!
Steady as she goes...
Thursday, 5 February 2015
Time is of the essence
(This post was triggered by two events. First, one of you rightly observed that my blog was often quite factual, and that they were missing "my hilltop", i.e. insights into "my world".
This coincided with me reflecting on how the last post-but-one was before the events of the weekend, while the one I have just published was after... Hum... before... and after...)
Once, before all this happened, my sense of time was very comfortable. I don't mean "what time is it?" I mean "what is time, and how do I relate to it?"
The answer? Maybe the same as yours: with some degree of indifference. When I did occasionally think consciously about it, it was without regret or fear. Put simply - Time past: I can honesty say "none wasted". Time present: "using it well". Time future: "there's enough".
Time past: when I think about what I have done these last 56 years, it is with a real, clear sense of accomplishment, whether it be in my professional or personal lives; "making a difference" as Diana would put it. As for "time present", living here in this wonderful house in a truly vibrant village community, contributing my few talents was more rewarding than I could ever have imagined.
Time future? Oh boy.
Then, it was a vague sense of "there's enough" (did you know there are roughly 10,000 nights in 30 years? That's the gap between me and Dad! Plenty of time yet!).
But now...
It's complicated. 10,000 nights is a distant impossible dream, even 100 sometimes feels beyond me. Let's split the (logarithmic!) difference and go for 1,000! Impossible? Not probable but a valid target none-the-less, even if it is so clearly finite. And that fact is sometimes so tough to grasp, particularly when the treatment lays me low and another day goes by.
But whatever the number is, and it's hard not to have it in mind most of the time, the only way of "being" I know is to continue trying to make that difference, whatever the chemo and lesions throw at me and whatever that difference may be.
Put another way: while it's so tough to do, I still go back to the beginning of this blog 12 months ago - "normal is good". Or as Captain Mainwaring would have said: "carry on!" Here's to all our futures!
This coincided with me reflecting on how the last post-but-one was before the events of the weekend, while the one I have just published was after... Hum... before... and after...)
Once, before all this happened, my sense of time was very comfortable. I don't mean "what time is it?" I mean "what is time, and how do I relate to it?"
The answer? Maybe the same as yours: with some degree of indifference. When I did occasionally think consciously about it, it was without regret or fear. Put simply - Time past: I can honesty say "none wasted". Time present: "using it well". Time future: "there's enough".
Time past: when I think about what I have done these last 56 years, it is with a real, clear sense of accomplishment, whether it be in my professional or personal lives; "making a difference" as Diana would put it. As for "time present", living here in this wonderful house in a truly vibrant village community, contributing my few talents was more rewarding than I could ever have imagined.
Time future? Oh boy.
Then, it was a vague sense of "there's enough" (did you know there are roughly 10,000 nights in 30 years? That's the gap between me and Dad! Plenty of time yet!).
But now...
It's complicated. 10,000 nights is a distant impossible dream, even 100 sometimes feels beyond me. Let's split the (logarithmic!) difference and go for 1,000! Impossible? Not probable but a valid target none-the-less, even if it is so clearly finite. And that fact is sometimes so tough to grasp, particularly when the treatment lays me low and another day goes by.
But whatever the number is, and it's hard not to have it in mind most of the time, the only way of "being" I know is to continue trying to make that difference, whatever the chemo and lesions throw at me and whatever that difference may be.
Put another way: while it's so tough to do, I still go back to the beginning of this blog 12 months ago - "normal is good". Or as Captain Mainwaring would have said: "carry on!" Here's to all our futures!
A wonderful few days
A good full-of-life few days!
(this was written a couple of days ago, but I suffered writers block on the next post - pretend it's last Monday!)
My last therapy was on Wednesday last week because Thursday we were of for a night away in a lovely English country house hotel, having dinner with the couple who introduced us 36 years ago. And what a great evening! Good food, company, conversation - and accommodation(*)!
Then on Saturday, a real privilege - CST at home! So a real chance to reap the the benefits of the therapy, enjoying an hour's recovery afterwards.
And in amongst these, the pleasure of doing ordinary things such as work(!) and model making.
All of which set me thinking...
But first, that (*) from earlier: as it happened, the delay in chemo meant we were away while I was on steroids, which we saw as a good thing - I would be more able to cope with the effects of the trip. And indeed I did feel good the whole time we were away... except I wasn't taking steroids!! Instead I was mistakenly taking something else, far less influential on my body - the power of the placebo! OK, I did wain rather, but once we spotted the mistake, I then had the pleasure of an extended period of support.
So to those thoughts - about time.
(this was written a couple of days ago, but I suffered writers block on the next post - pretend it's last Monday!)
My last therapy was on Wednesday last week because Thursday we were of for a night away in a lovely English country house hotel, having dinner with the couple who introduced us 36 years ago. And what a great evening! Good food, company, conversation - and accommodation(*)!
Then on Saturday, a real privilege - CST at home! So a real chance to reap the the benefits of the therapy, enjoying an hour's recovery afterwards.
And in amongst these, the pleasure of doing ordinary things such as work(!) and model making.
All of which set me thinking...
But first, that (*) from earlier: as it happened, the delay in chemo meant we were away while I was on steroids, which we saw as a good thing - I would be more able to cope with the effects of the trip. And indeed I did feel good the whole time we were away... except I wasn't taking steroids!! Instead I was mistakenly taking something else, far less influential on my body - the power of the placebo! OK, I did wain rather, but once we spotted the mistake, I then had the pleasure of an extended period of support.
So to those thoughts - about time.
Wednesday, 28 January 2015
Back on track
I am delighted to be writing this from the therapy unit in my clinic!
Yes, my white cells are now behaving again - in fact they have gone OTT! This time last week they were "1.03", 0.5 below the treatment threshold. This week they are 9!! That's way out at the other end of the spectrum, well beyond the norm.
But no "complaints" - we're back on the Carousel, already feeling the benefits of the steroids!
Why do I say "back on the Carousel"? Because it's been an interesting week or so, something of a paradox that while my "numbers" have continued to be brilliant (neutrophils not withstanding), I've been a tad tired and listless. No immediate explanation, although we suspect a surfeit of iron; so we've agreed to cut the iron supplement down and see what happens. Such a juggling act!
But its not been a constant struggle - we had a brilliant "Burn's Night" last Saturday evening; with great food, super company and brilliant entertainment (Diana starred on her melodeon, and I even sang!). And now we're looking forward to a night away, tomorrow, having dinner with the couple who introduced us almost 36 years ago :-)
PS: today is a notable day: exactly a year since my first chemo session. Then I was so anxious, even frightened. Now I am among good friends - quite a few who I met that first day, and with whom I have a wonderful relationship.
Yes, my white cells are now behaving again - in fact they have gone OTT! This time last week they were "1.03", 0.5 below the treatment threshold. This week they are 9!! That's way out at the other end of the spectrum, well beyond the norm.
But no "complaints" - we're back on the Carousel, already feeling the benefits of the steroids!
Why do I say "back on the Carousel"? Because it's been an interesting week or so, something of a paradox that while my "numbers" have continued to be brilliant (neutrophils not withstanding), I've been a tad tired and listless. No immediate explanation, although we suspect a surfeit of iron; so we've agreed to cut the iron supplement down and see what happens. Such a juggling act!
But its not been a constant struggle - we had a brilliant "Burn's Night" last Saturday evening; with great food, super company and brilliant entertainment (Diana starred on her melodeon, and I even sang!). And now we're looking forward to a night away, tomorrow, having dinner with the couple who introduced us almost 36 years ago :-)
PS: today is a notable day: exactly a year since my first chemo session. Then I was so anxious, even frightened. Now I am among good friends - quite a few who I met that first day, and with whom I have a wonderful relationship.
Friday, 23 January 2015
Therapies: one postponed and another enjoyed.
Yesterday I should have been in therapy, but frustratingly my white blood cell count was down below a threshold :-( And that's a no-no for chemo.
Seems these things happen, and there's no way to predict what white cells might do. I wondered if it might be because of this cough (and intermittent sore throat) but it seems not. All the medics would say is chemo attacks white cells like everything else. I'm therefore on an out-of-cycle course of the "white cell stimulating" injections, with a hope that the number will be good on Monday, enabling therapy to restart next Thursday.
And, talking of good numbers, the blood test that highlighted the white cell challenge also showed my CEA marker is down... again!
We're now in uncharted territory, nudging the 100's. Maybe I need to look at the effect of this chemo regime on white cells as "just" collateral damage of its positive effect on the lesions? Who knows... So long as it continues to work, I'll take anything.
But, yesterday I did have therapy - of the Bowen and CST kinds! Once I heard the news about chemotherapy, we quickly decided to book a session with our physical therapist, and a great session it was too. Highly recommended!
Seems these things happen, and there's no way to predict what white cells might do. I wondered if it might be because of this cough (and intermittent sore throat) but it seems not. All the medics would say is chemo attacks white cells like everything else. I'm therefore on an out-of-cycle course of the "white cell stimulating" injections, with a hope that the number will be good on Monday, enabling therapy to restart next Thursday.
And, talking of good numbers, the blood test that highlighted the white cell challenge also showed my CEA marker is down... again!
We're now in uncharted territory, nudging the 100's. Maybe I need to look at the effect of this chemo regime on white cells as "just" collateral damage of its positive effect on the lesions? Who knows... So long as it continues to work, I'll take anything.
But, yesterday I did have therapy - of the Bowen and CST kinds! Once I heard the news about chemotherapy, we quickly decided to book a session with our physical therapist, and a great session it was too. Highly recommended!
Friday, 16 January 2015
It's smaller!
Yippee!
It's all worthwhile!
Just home after our consultation with the SIRT specialist... and learnt, for the first time since we began this journey over a year ago, that my liver's lesions have shrunk!
The MRI and CT scans have shown that the combination of SIRT and avastin/folfox has in the last few months reduced the tumors in my liver "to some degree", although it is not possible to say which has done what. But given the way my CEA number has been steadily dropping I'm inclined to believe the MAB/chemo has been more significant, and that the SIRT's impact has turned out to be less than we hoped/prayed for.
But, actually, that's not a bad thing per se, since SIRT was a one-off treatment with a wide variety of possible outcomes, whereas Chemo is an ongoing therapy and will hopefully continue to make a difference over the coming months. ("no reason why not")
And, to add to our joys, the scans showed no developments anywhere else - all our attention can be focused on my liver without worrying about lesions elsewhere.
So GOOD NEWS all round!
In "other news"; Monday was a great day (more brilliant CST), but the days that followed have been tough, being the most difficult in the 2 week cycle - I've learnt to go with the flow, take it easy and stick to light duties. Returning strength today has been well timed!! And I continue to put on weight... and cough.
The Carousel spins...
It's all worthwhile!
Just home after our consultation with the SIRT specialist... and learnt, for the first time since we began this journey over a year ago, that my liver's lesions have shrunk!
The MRI and CT scans have shown that the combination of SIRT and avastin/folfox has in the last few months reduced the tumors in my liver "to some degree", although it is not possible to say which has done what. But given the way my CEA number has been steadily dropping I'm inclined to believe the MAB/chemo has been more significant, and that the SIRT's impact has turned out to be less than we hoped/prayed for.
But, actually, that's not a bad thing per se, since SIRT was a one-off treatment with a wide variety of possible outcomes, whereas Chemo is an ongoing therapy and will hopefully continue to make a difference over the coming months. ("no reason why not")
And, to add to our joys, the scans showed no developments anywhere else - all our attention can be focused on my liver without worrying about lesions elsewhere.
So GOOD NEWS all round!
In "other news"; Monday was a great day (more brilliant CST), but the days that followed have been tough, being the most difficult in the 2 week cycle - I've learnt to go with the flow, take it easy and stick to light duties. Returning strength today has been well timed!! And I continue to put on weight... and cough.
The Carousel spins...
Saturday, 10 January 2015
Sunshine and Showers
Whatever the weather outside (and it's vile), the last week has been "sunshine and showers" for us. The lurgy remained with us for a few more days, being particularly nasty to Diana, and its after effects are only slowly diminishing (such a frustrating cough!) - but the rain storm over the Carousel is clearing...
...to sunny spells. I was delighted my blood test late last week declared me "clear"of virus and bugs, or at least well enough for treatment this week. Sadly, there was no available chairs on Tuesday (as originally planned) so I have had to slip a full week, being infused on the "regular Thursday", albeit three weeks (not two) after the last treatment. But, as per my last posting, those extra days off did prove useful, and I am still feeling really well (if it wasn't for this blasted cough!) - and quite active too, enjoying walking again - particularly to a close friend's for tea!
And just 6 days now to the review of my SIRT scans...
PS:
Several of you (mostly overseas!) had not heard of the lurgy or lurgi (more exactly "the dreaded lurgy") - a mythical deadly illness, first discovered in the 1950's during a radio comedy show called "The Goons" - and said not to have killed a single trombonist (the only cure is to play a brass instrument). It is still a common phrase, refering to anything "nasty" like a bad cold or man-flu.
And "fillip" was new to some too - "a boost or stimulus"
...to sunny spells. I was delighted my blood test late last week declared me "clear"of virus and bugs, or at least well enough for treatment this week. Sadly, there was no available chairs on Tuesday (as originally planned) so I have had to slip a full week, being infused on the "regular Thursday", albeit three weeks (not two) after the last treatment. But, as per my last posting, those extra days off did prove useful, and I am still feeling really well (if it wasn't for this blasted cough!) - and quite active too, enjoying walking again - particularly to a close friend's for tea!
And just 6 days now to the review of my SIRT scans...
PS:
Several of you (mostly overseas!) had not heard of the lurgy or lurgi (more exactly "the dreaded lurgy") - a mythical deadly illness, first discovered in the 1950's during a radio comedy show called "The Goons" - and said not to have killed a single trombonist (the only cure is to play a brass instrument). It is still a common phrase, refering to anything "nasty" like a bad cold or man-flu.
And "fillip" was new to some too - "a boost or stimulus"
Friday, 2 January 2015
Paying the piper. But good news too
I guess it was almost inevitable... The moment everyone left us on Sunday, Diana and I came down with the lurgy. It's laid Diana pretty low , me less so; but it's definitely not nice! Both now on antibiotics, and my treatment day's been postponed to early next week - the first time ever in 12 months, which I guess is quite remarkable.
But I am delighted to say one of our children has come back to help, both practically (shopping!) and emotionally: because I can't afford to get too physically close to Diana (our symptoms are not the same) means it's hard helping her - and not being able to touch her has been really tough to take. Needless to say, his presence has been a real filip, and we both seem to be on the mend at last.
While the last few days has been a challenge, before falling properly ill I did manage to get myself to hospital for my post-SERT scans (MRI and CT), so am still on track for the results in 2 weeks time.
And does every cloud have a silver lining? This one may - I now have 4 "extra" days before more chemo. Assuming we continue to improve, I'm going to enjoy them! Particularly given the GREAT NEWS I had on Monday: almost all my "vital signs" are as good as they have been in 6 months! Red cells - a shade below your normal range! White cells - in the normal range! And best of all, my CEA number lower than it's been since May, and the third lowest ever!!
So maybe, just maybe, after a shaky start, 2015 will turn out to be a good year after all! HAPPY NEW YEAR!
But I am delighted to say one of our children has come back to help, both practically (shopping!) and emotionally: because I can't afford to get too physically close to Diana (our symptoms are not the same) means it's hard helping her - and not being able to touch her has been really tough to take. Needless to say, his presence has been a real filip, and we both seem to be on the mend at last.
While the last few days has been a challenge, before falling properly ill I did manage to get myself to hospital for my post-SERT scans (MRI and CT), so am still on track for the results in 2 weeks time.
And does every cloud have a silver lining? This one may - I now have 4 "extra" days before more chemo. Assuming we continue to improve, I'm going to enjoy them! Particularly given the GREAT NEWS I had on Monday: almost all my "vital signs" are as good as they have been in 6 months! Red cells - a shade below your normal range! White cells - in the normal range! And best of all, my CEA number lower than it's been since May, and the third lowest ever!!
So maybe, just maybe, after a shaky start, 2015 will turn out to be a good year after all! HAPPY NEW YEAR!
Saturday, 27 December 2014
Take two parents...
Take two parents, three children + partners, and two under 5s; mix thoroughly and enjoy!
Normally, I'd steer clear of "newsy news", but these last few days have been so poignant, I feel the need to say something. From midnight mass to the opening of simple presents given and received with pleasure on Boxing Day, it's been... complicated! On so many levels, it's such a normal, wonderful Christmas; as any have been in the past, but in other ways so different, so complicated. Simple joyful moments have had me in tears, while others have passed almost unnoticed until later.
Today will be the first time everyone will be here, from 3 to 87, so I am particularly pleased with my special present of a couple of extra steroids!
Presents... Last year was so focused on one huge present... Saun the stent. How different this year, with 10s of little gifts, equally carefully chosen by the giver for the receiver... and not a single one costing a fortune and none needing a battery, just care in its selection.
Normally, I'd steer clear of "newsy news", but these last few days have been so poignant, I feel the need to say something. From midnight mass to the opening of simple presents given and received with pleasure on Boxing Day, it's been... complicated! On so many levels, it's such a normal, wonderful Christmas; as any have been in the past, but in other ways so different, so complicated. Simple joyful moments have had me in tears, while others have passed almost unnoticed until later.
Today will be the first time everyone will be here, from 3 to 87, so I am particularly pleased with my special present of a couple of extra steroids!
Presents... Last year was so focused on one huge present... Saun the stent. How different this year, with 10s of little gifts, equally carefully chosen by the giver for the receiver... and not a single one costing a fortune and none needing a battery, just care in its selection.
Tuesday, 23 December 2014
100! And 365!
Today is the first anniversary of my admission to hospital and diagnosis. And this is my 100th posting to this blog. Two enormous milestones.
What a journey it has been. Such a roller coaster (but now of course more like a carousel!), with many downs & ups and unexpected twists & turns. But, while the "downs" have sometimes been deep, black and occasionally almost impossible to cope with, there have been an amazing number of "ups "and "positives" as well. And it's those positive experiences I want to celebrate today:
This time last year I was dying. This year I am living, as alive as I have ever been. This Christmas, more than any I can remember, means so much in so many ways. In particular I am reminded of Dave Allen's powerful thought "May your God go with you". May I refine this, and say at this time "May your beliefs nourish you".
Have a peaceful, joyful and relaxing (or invigorating!) Christmas,
With all our Love
Ian and Diana
23rd December 2014, 100th posting.
What a journey it has been. Such a roller coaster (but now of course more like a carousel!), with many downs & ups and unexpected twists & turns. But, while the "downs" have sometimes been deep, black and occasionally almost impossible to cope with, there have been an amazing number of "ups "and "positives" as well. And it's those positive experiences I want to celebrate today:
- the joy of blogging!
- The beauty of the English countryside (viz. our commute to the clinic).
- The pleasure in "physical therapies" - McTimoney, Bowen and Reiki.
- The skills and flair in a Surgeon's hands.
- The knowledge and finesse of the Oncologist.
- The care and humanity of nurses throughout the NHS; in cancer care, A&E and on the wards.
- The capacity and capability of the NHS, in 2014, in the face of huge pressures.
- Free, open access to amazing technology; from Peter the Pump & Sean the Stent, to SIRT & keyhole surgery; as well as to today's chemotherapy and the innovation of Monoclonal Antibodies.
- The resilience and robustness of the human body (five hospitalisations, every one overcome!)
- The realization that I have not wasted a moment of my 57 (and counting!) years.
- The privilege of (finally!) understanding the impact I seem to have had, professionally and personally on so many people in so many places.
- The support, love, prayers and thoughts of so many friends, day by day, every day, for a year...
- ...and new friends made amongst my fellow patients in the clinic - you all inspire me.
- But, above all, the unwavering and unending love and support of my family, and beyond everything, Diana.
This time last year I was dying. This year I am living, as alive as I have ever been. This Christmas, more than any I can remember, means so much in so many ways. In particular I am reminded of Dave Allen's powerful thought "May your God go with you". May I refine this, and say at this time "May your beliefs nourish you".
Have a peaceful, joyful and relaxing (or invigorating!) Christmas,
With all our Love
Ian and Diana
23rd December 2014, 100th posting.
Saturday, 20 December 2014
Everyone's pleased
It's been a busy week of appointments: we saw my oncologist on Monday, then a pleasant day of treatment Thursday with nurses who know me well, and finally a review with the SIRT oncologist Friday morning - and all three said the same thing - "wow! You look great!" which was itself great to hear.
And indeed I do feel great. Putting on weight and muscle tone (no need to think twice about standing up or tackling the stairs). OK, maybe I'm not back to what you'd call "normal" (whatever that may be!), but - to refer to a number of blog postings right back at he beginning of this journey, I still believe being "normal is good": in other words, doing normal stuff physically, intellectually and emotionally is good for me... well, I suppose I have to admit that while I think I'm managing the first two reasonably well, my emotional self will never be the same again! (I case you were wondering - I'm much more emotional, often tearful - which Diana says is good!)
Changing tack a little - believe it or not, this is my 99th posting to this blog. Oh boy! 99! And it just so happens that next Tuesday, the 23rd December, is exactly one year since my admission to hospital and diagnosis. So I plan on "recognising" both facts with my 100th posting on the 23rd. I'm drafting it now...
And indeed I do feel great. Putting on weight and muscle tone (no need to think twice about standing up or tackling the stairs). OK, maybe I'm not back to what you'd call "normal" (whatever that may be!), but - to refer to a number of blog postings right back at he beginning of this journey, I still believe being "normal is good": in other words, doing normal stuff physically, intellectually and emotionally is good for me... well, I suppose I have to admit that while I think I'm managing the first two reasonably well, my emotional self will never be the same again! (I case you were wondering - I'm much more emotional, often tearful - which Diana says is good!)
Changing tack a little - believe it or not, this is my 99th posting to this blog. Oh boy! 99! And it just so happens that next Tuesday, the 23rd December, is exactly one year since my admission to hospital and diagnosis. So I plan on "recognising" both facts with my 100th posting on the 23rd. I'm drafting it now...
Tuesday, 16 December 2014
What will he do next?
Go to Burger King!!
Yep, BK... We were on our way home from our physical therapist(*) and the urge overtook me... a burger!! Double cheese burger with bacon, plus fries. And, do you know, they don't do green tea!
But that's not the only highlight of the day... I'd been pondering how careful I need to be over Christmas re food: I've been very careful to stick with the food stuffs I was advised to eat following the operation, and wondered if I could have a "break" for a few days... A quick call to the excellent support team came back with the answer from my surgeon... "you can eat anything now, and not just for Christmas"!!
Wonderful news! I still have to be careful with foods that might compromise my immune system (anything that might have bacteria on or in it like soft cheese and lettuce), but otherwise ANYTHING!
So what to have first? Something I've missed for 11 months... Diana's chocolate stuff! (recipe on request). An emotional moment.
(*) another brilliant session, a blend of CST (tummy) and - for the first time in ages - massage on my back and neck (McTimoney)
Yep, BK... We were on our way home from our physical therapist(*) and the urge overtook me... a burger!! Double cheese burger with bacon, plus fries. And, do you know, they don't do green tea!
But that's not the only highlight of the day... I'd been pondering how careful I need to be over Christmas re food: I've been very careful to stick with the food stuffs I was advised to eat following the operation, and wondered if I could have a "break" for a few days... A quick call to the excellent support team came back with the answer from my surgeon... "you can eat anything now, and not just for Christmas"!!
Wonderful news! I still have to be careful with foods that might compromise my immune system (anything that might have bacteria on or in it like soft cheese and lettuce), but otherwise ANYTHING!
So what to have first? Something I've missed for 11 months... Diana's chocolate stuff! (recipe on request). An emotional moment.
(*) another brilliant session, a blend of CST (tummy) and - for the first time in ages - massage on my back and neck (McTimoney)
Monday, 15 December 2014
Still going strong II
This is great. I think the carousel has Christmas lights on it!
Just to say I continue to feel very well, and that even the expected cyclical dip (due last Thursday/Friday) was really rather shallow, just as it was last time; and I was more-or-less back on the "up" for dinner on Friday night celebrating my father's 87th birthday with my brother and Diana, and then on Saturday getting to our monthly village/church "Big Breakfast" in the village hall (and more bacon butties!).
Also to say Diana and I are just back home from our regular pre-treatment review with my Oncologist, who continues to be thrilled (there is no other word) with my well being. So bring on "round 5"!
Just to say I continue to feel very well, and that even the expected cyclical dip (due last Thursday/Friday) was really rather shallow, just as it was last time; and I was more-or-less back on the "up" for dinner on Friday night celebrating my father's 87th birthday with my brother and Diana, and then on Saturday getting to our monthly village/church "Big Breakfast" in the village hall (and more bacon butties!).
Also to say Diana and I are just back home from our regular pre-treatment review with my Oncologist, who continues to be thrilled (there is no other word) with my well being. So bring on "round 5"!
CEA numbers - update
Well I never!
My Oncologist was facinated by my story (weaving together "patient perspectives"and how we react the "CEA measurement scale"), and has promised me some "meaningful data" in the current 2 / 20 / 500 / 900 format, for me to convert to the "Richter like" 3 / 13 / 27 / 29 scale; so he can better understand the implications. he has also promised, that "if it works" he is more than prepared to take the idea forward!
Watch this space...
My Oncologist was facinated by my story (weaving together "patient perspectives"and how we react the "CEA measurement scale"), and has promised me some "meaningful data" in the current 2 / 20 / 500 / 900 format, for me to convert to the "Richter like" 3 / 13 / 27 / 29 scale; so he can better understand the implications. he has also promised, that "if it works" he is more than prepared to take the idea forward!
Watch this space...
Wednesday, 10 December 2014
CEA numbers - footnote
To my delight I have had far more comments and emails about this post than ever expected - all saying the same thing: "we agree!". Thank you for the encouragement, and I will if at all possible raise these ideas next time I see my medical team.
Out and About
I'm really lovng this new "carousel" metaphor - while today has been slightly "below the curve" (it's that time in the 2 weekly cycle), it's been no where near as deep a dip as in months gone by. Mind you it's not surprising; the previous days were positively energetic - I don't think I've been out-and-about for 5 consecutive days in many months!...
Having enjoyed a family weekend for H's birthday the previous weekend, I was thrilled last Saturday to walk down to our Church's annual Christmas Fair, where I saw more friends than I could have imagined - and who seemed as pleased to see me as I was them! The bacon butties were amazing!
Sunday saw us out walking(!) across the village to visit close friends for the morning (great chocolate cake, P!); then Monday off for CST followed by afternoon tea (creaam tea!) with one of Diana's cousins.
And more ringing of bells and more morning goodies yesterday!
Anyone spotted the underlying theme? Yes, I am pleased to say I'm holding onto my sense of taste and managing to not only keep my "intake" well up, but to still be enjoying food and meals. Pity it's not being reflected in body weight, but I do feel fitter and my muscles appear better toned (two flights of stairs without stopping!), so hopefully we remain on track for a good Christmas!
Having enjoyed a family weekend for H's birthday the previous weekend, I was thrilled last Saturday to walk down to our Church's annual Christmas Fair, where I saw more friends than I could have imagined - and who seemed as pleased to see me as I was them! The bacon butties were amazing!
Sunday saw us out walking(!) across the village to visit close friends for the morning (great chocolate cake, P!); then Monday off for CST followed by afternoon tea (creaam tea!) with one of Diana's cousins.
And more ringing of bells and more morning goodies yesterday!
Anyone spotted the underlying theme? Yes, I am pleased to say I'm holding onto my sense of taste and managing to not only keep my "intake" well up, but to still be enjoying food and meals. Pity it's not being reflected in body weight, but I do feel fitter and my muscles appear better toned (two flights of stairs without stopping!), so hopefully we remain on track for a good Christmas!
Sunday, 7 December 2014
CEA numbers frighten me... needlessly! (aka, looking at the world from the patient's perspective)
Apologies - this is a long, and at times technical post - but it represents, for me at least, a really classic example of the challenge the doctors face in being "patient centric"; one of my biggest interests in the management of serious illness by the medical professions.
In summary -
The Detail -
The CEA number is one of the markers used to determine the activity level of colon cancer. While it is never used in isolation by the medical staff - and anyway they are far more interested in its change than absolute value - it can be hugely "influential" on the patient as an easy way of comparing notes with other patients, as well as their own "level of illness".
This next part is for anyone with an interest in maths.. and that means you!!!!
It seems that the CEA number, unlike almost all of the other numbers we get to tell us "how we're doing" is not what mathematicians call an arithmetic progression, but closer to a geometric progression. In other words, most other "markers" and indicators change in a simple way - the difference in significance between a "2" and a "3" is the same as between a "12" and a "13", or a "72" and a "73". Therefore if my number is 12 and yours is 2, we can say we're "pretty much the same" (the difference is only 10) whereas the difference between 12 and 72 is "massive" (a whopping 60!!)
But geometric progressions are different - the numeric gap between successive values gets bigger and bigger, rather than staying constant. And the CEA number seems to be one of these geometric progressions - as it gets bigger, the gap also gets bigger between "significant numbers", meaning the impact of a change from "2" to "3" (1.5 times bigger) is the same as a change from 20 to 30 or from 200 to 300.
OK - you can start reading again...
A "good" CEA value is a 2 or a 3 - that'll be your number. An acceptable target for a cancer patient is in the 10's. But mine was 900 two weeks' ago!!!! Oh boy, that's BIG!!!! It's now 500, and all the professionals are delighted. But 900!!!! even 500!!! when the target is 20-50!!!! Oh crikey!!!!
The CEA number does not work like that - it seems the number "runs away from you" as it gets bigger - hence the "ease" with which a huge chunk (400) was lopped off my number in just 14 days (and of course, in much the same way, it can increase in a frightening way in the first place). In other words, it just so happens that the difference between your level of a "2" and my target of say "20" is the same as me getting from "200" to "20", or "500" to "50" - each bigger number is 10 times the smaller one.
Which can of course instil a false sense of the challenge - "only another 450 to go (500 to 50), and I managed 400 in a fortnight!". The reality is that getting from a 900 to a 500 has a difficulty of, say 1.8 (900/500), whereas 500 to 50 has a difficulty of 10 (500/50) - which is why one inevitably fails to see a "constant improvement" and feels depressed as a consequence...
Is there a different way, which would still satisfy the medics as well as not frightening me?
YES!!! It's to adopt the same approach as is used for other similarly behaved measurements, such the strength of an earthquake (the Richter Scale) or deciBels, as used in audio and electronic systems
OK, more maths...
The trick is to use a logarithmic scale, in which the absolute number ("2", "20" or "900") is converted to it's "log-base-10" value. For example a "20" becomes 1.3. If the same convention is then used as for deciBels, we'd refine this to a "13".
You can start reading again...
In this approach, a "2" becomes 3, a "20" is 13, "500" is 27 and "900" 29. This instantly does two things:
In summary -
- If a key "wellness marker" in a healthy person is a "2", and cancer patients aspire to a "20", then if my marker is "500", then that's frightening and, more importantly, appears to be quite misleading.
- But if a different numbering scheme (such as is used for deciBels and the Richter Scale) were used, these marker values would be a "3", "13" and "27" - far less daunting, and a much better indication of reality.
- The Oncologist - whose primary focus is on the cancer and its treatment regime (with a fair amount of interest in the physiological impact that has on the patient).
- The Chemo-nurse - whose primary interests include the readiness of the patient's physiology to take that regime, as well as their real-time and between-times state of health and the management of these "side effects".
- The Patient - whose many interests include an understanding of "how am I doing? Am I getting better or worse, and can I cope with more?"
The Detail -
The CEA number is one of the markers used to determine the activity level of colon cancer. While it is never used in isolation by the medical staff - and anyway they are far more interested in its change than absolute value - it can be hugely "influential" on the patient as an easy way of comparing notes with other patients, as well as their own "level of illness".
This next part is for anyone with an interest in maths.. and that means you!!!!
It seems that the CEA number, unlike almost all of the other numbers we get to tell us "how we're doing" is not what mathematicians call an arithmetic progression, but closer to a geometric progression. In other words, most other "markers" and indicators change in a simple way - the difference in significance between a "2" and a "3" is the same as between a "12" and a "13", or a "72" and a "73". Therefore if my number is 12 and yours is 2, we can say we're "pretty much the same" (the difference is only 10) whereas the difference between 12 and 72 is "massive" (a whopping 60!!)
But geometric progressions are different - the numeric gap between successive values gets bigger and bigger, rather than staying constant. And the CEA number seems to be one of these geometric progressions - as it gets bigger, the gap also gets bigger between "significant numbers", meaning the impact of a change from "2" to "3" (1.5 times bigger) is the same as a change from 20 to 30 or from 200 to 300.
OK - you can start reading again...
A "good" CEA value is a 2 or a 3 - that'll be your number. An acceptable target for a cancer patient is in the 10's. But mine was 900 two weeks' ago!!!! Oh boy, that's BIG!!!! It's now 500, and all the professionals are delighted. But 900!!!! even 500!!! when the target is 20-50!!!! Oh crikey!!!!
The CEA number does not work like that - it seems the number "runs away from you" as it gets bigger - hence the "ease" with which a huge chunk (400) was lopped off my number in just 14 days (and of course, in much the same way, it can increase in a frightening way in the first place). In other words, it just so happens that the difference between your level of a "2" and my target of say "20" is the same as me getting from "200" to "20", or "500" to "50" - each bigger number is 10 times the smaller one.
Which can of course instil a false sense of the challenge - "only another 450 to go (500 to 50), and I managed 400 in a fortnight!". The reality is that getting from a 900 to a 500 has a difficulty of, say 1.8 (900/500), whereas 500 to 50 has a difficulty of 10 (500/50) - which is why one inevitably fails to see a "constant improvement" and feels depressed as a consequence...
Is there a different way, which would still satisfy the medics as well as not frightening me?
YES!!! It's to adopt the same approach as is used for other similarly behaved measurements, such the strength of an earthquake (the Richter Scale) or deciBels, as used in audio and electronic systems
OK, more maths...
The trick is to use a logarithmic scale, in which the absolute number ("2", "20" or "900") is converted to it's "log-base-10" value. For example a "20" becomes 1.3. If the same convention is then used as for deciBels, we'd refine this to a "13".
You can start reading again...
In this approach, a "2" becomes 3, a "20" is 13, "500" is 27 and "900" 29. This instantly does two things:
- It's less frightening - if my target is 13, which is a whole 10 higher than a healthy 3, then getting from 27 to 13 is about the same "gap", and therefore I feel happier that I need "only get half way" to the healthy number.
- It presents a more accurate representation of the number's meaning - the reduction from 29 to 27 seems to be is a more realistic representation of my recent "improvement", without giving false hope of "getting to 13 in two weeks" - rather, if it were at all possible to achieve to a smooth trajectory downwards, then three months might be more reasonable... not that cancer is ever reasonable!
Saturday, 6 December 2014
Avast(in) there me Hearties!
Roughly translated from "Pirate" to "proper English", with a little artistic license, this is "Hold on a moment chaps, let's jolly well consolidate our position, what?"
Oh boy! Now we ARE fighting back! For some while now, even before "those 10 weeks", I've been looking forward to this moment... After all the preparation (basically the operation to remove Sean the Stent as well as the colon primary, allowing total focus on the liver), as of Thursday's treatment (cycle 4 of the new era) we now have all THREE available points of attack on my liver's Mets in place:
Mind you, Thursday did try our patience a little - 9 hours in the treatment chair! Well, quite rightly (with an engineering level of caution) the process includes a "rest" after each new treatment, to ensure any negative reactions can be properly attributed to a single cause, increasing confidence in their restorative treatment. So I has an hour's rest after the Avastin (which itself was administered slowly this first time). Then the increased concentration of Oxaliplatin had to delivered more slowly than will be normal in future. This then accentuated the consequence of our failure to spot a stopped pump, meaning another infusion had to be given afterwards and not at the same time as the Oxaliplatin.
Still I got A LOT of work done! Both "home" and "professional" - thank heavens for wifi!
So we are, at last, hoping we can consolidate, with any number of "regular" 2 weekly cycles ahead of us, allowing us to continue riding the carousel...
Oh boy! Now we ARE fighting back! For some while now, even before "those 10 weeks", I've been looking forward to this moment... After all the preparation (basically the operation to remove Sean the Stent as well as the colon primary, allowing total focus on the liver), as of Thursday's treatment (cycle 4 of the new era) we now have all THREE available points of attack on my liver's Mets in place:
- SIRT - OK, it's done what it's going to do, we just do not yet know what this "radio-active scalpel" has done (the scan on 30th December, with a consultation on SIRT's outcome early in 2015). But given the way I am feeling, we have to assume its effect has been positive!
- Folfox (which when combined with SIRT is briefly known as Folfire!), continuing to do it's best at killing things - given my current wellness, my Oncologist has raised the concentration of the specialist "...ox" part of Folfox, Oxaliplatin.
- Avastin (aka Bevacizumab), the MAB designed to starve the tumor of blood and therefore ensure it "withers" - I assume to make it more susceptible to the Folfox cocktail. While it has no "real-time" side effects of it's own, it does raise a couple of existing risks (blood clots and colon damage), so I am being particularly fastidious in my Tinzaparin injections!
Mind you, Thursday did try our patience a little - 9 hours in the treatment chair! Well, quite rightly (with an engineering level of caution) the process includes a "rest" after each new treatment, to ensure any negative reactions can be properly attributed to a single cause, increasing confidence in their restorative treatment. So I has an hour's rest after the Avastin (which itself was administered slowly this first time). Then the increased concentration of Oxaliplatin had to delivered more slowly than will be normal in future. This then accentuated the consequence of our failure to spot a stopped pump, meaning another infusion had to be given afterwards and not at the same time as the Oxaliplatin.
Still I got A LOT of work done! Both "home" and "professional" - thank heavens for wifi!
So we are, at last, hoping we can consolidate, with any number of "regular" 2 weekly cycles ahead of us, allowing us to continue riding the carousel...
Life's a Carousel!
We're still going strong!
Apologies for my silence this last week and a bit, I know this often means a dip in form, but not this time. Rather, we've had a great week with a marvelous family weekend in the middle. So, instead of the roller coaster, it's been a Carousel ride, gently undulating between "great" and "slightly tired".
The family weekend was in celebration of H's birthday, and we managed to get everyone here - a double bonus since Christmas will be more a case of "ships (= children) passing in the night" as A and S each spend different parts of the Christmas period with their wive's in-laws (that's, M and L's parents!). So an amazingly vibrant and joyful "11 for dinner" (ages 3 to 86) last Saturday and Sunday, and nothing prepared "specially" for me!! (ref. "diet").
I have to admit to some trepidation before they all arrived - more than anything else, family can bring out all the emotions in me, as well as highlighting the "reality" of things, but it is a delight to remember one of the most wonderful couple of days in months - I didn't want it to end!
The next three days were a little more tiring; still well above the line (those carousel horses make a wonderful metaphor!) - but not a surprising consequence of the weekend; Diana was a bit shattered too after coping with everyone, including me! So Thursday (treatment day) came to the rescue, giving me just enough of a boost (it'll be the steroids!!!) to lift the carousel horse up again...
(*) Apologies to "The Band", whose track "Life is a Carnival" is featured on the movie sound track Album "The Last Waltz", IMHO one of the best rockumentaries around.
Apologies for my silence this last week and a bit, I know this often means a dip in form, but not this time. Rather, we've had a great week with a marvelous family weekend in the middle. So, instead of the roller coaster, it's been a Carousel ride, gently undulating between "great" and "slightly tired".
The family weekend was in celebration of H's birthday, and we managed to get everyone here - a double bonus since Christmas will be more a case of "ships (= children) passing in the night" as A and S each spend different parts of the Christmas period with their wive's in-laws (that's, M and L's parents!). So an amazingly vibrant and joyful "11 for dinner" (ages 3 to 86) last Saturday and Sunday, and nothing prepared "specially" for me!! (ref. "diet").
I have to admit to some trepidation before they all arrived - more than anything else, family can bring out all the emotions in me, as well as highlighting the "reality" of things, but it is a delight to remember one of the most wonderful couple of days in months - I didn't want it to end!
The next three days were a little more tiring; still well above the line (those carousel horses make a wonderful metaphor!) - but not a surprising consequence of the weekend; Diana was a bit shattered too after coping with everyone, including me! So Thursday (treatment day) came to the rescue, giving me just enough of a boost (it'll be the steroids!!!) to lift the carousel horse up again...
(*) Apologies to "The Band", whose track "Life is a Carnival" is featured on the movie sound track Album "The Last Waltz", IMHO one of the best rockumentaries around.
Thursday, 27 November 2014
Diet
(Sorry, not the Japanese parliament!)
How powerful is our attitude to food, how influential our approach to it can be on our overall well being!
For a long time, particularly during "those 10 weeks" and even more in the awful following 10 days, I had wholly abdicated my responsibilities for food to Diana (bless her), not caring if I had a Fortijuce or sponge pudding for dinner, and only vaguely aware of my nutritional needs. Maybe the most telling thing of all was the fear of having to eat three times a day, every day for ever. A truely debilitating thought. And even though it's all explicable in terms of my reaction to the radio-therapy inspired fatigue and chemo tiredness, that's no way to recovery and no wonder I lost so much weight. The negative inward dark spiral was, I now see, fed by my failure to eat. Diana cared so much, but there was only so much she could do to keep my body and soul together.
And then something happened. No idea what - effect of steroids? CST? Some magic moment? Whatever it was, something 10+ days ago swapped the spiral round (around the time of my "light at the end of the tunnel" posting?), and my desire to eat returned. Or was it the other way around - did my desire to eat switch the spiral? Whatever the cause, I know there is a direct correlation to this joyful wellness I feel now and an increase in calories from c. 1400 per day to 2200.
But it's not only the quantity - being "well" means you can think positively about the next meal (let's have Chicken wraps for lunch!) while still eating breakfast - such thoughts would have been impossible then. Indeed, if Diana even mentioned food I'd struggle dreadfully... Now, it's a real quality of life thing, something we all take for granted until it's not there...
And there's more - you know I'm a bit of a technology person, and via my son we've discovered a wonderful "diet tracking" app, that not only adds up calories (reading bar codes into a tablet computer still amazes me!), but also tracks protein levels, carbs, fat and all the other vital nutrients we need. And, being me, you also will not be surprised to hear it fascinates and helps me to have that feedback, for example that my protein balance is close to the mark, that I'm getting enough iron and vitamin C etc., and most intriguingly being able to compare foods (not all bagels are the same!!!)
I always knew that diet (and exercise!) is is the one major positive factor I can directly control, how it influences the impact of all the other side effects I have to cope with, and which make me a happier or sadder person. If only dietitians had a bigger influence in the overall cancer-care regime... (and - almost impossible I know - if hospital food was more carefully tailored to the patients' needs).
PS: Weight wise I'm stable right now - the effects of chemo on my digestive system are such that my body is less effective at absorbing what it needs than yours. So while the app is predicting weight gain, I'll probably have to wait to week 2 of each cycle to see any evidence of that.
How powerful is our attitude to food, how influential our approach to it can be on our overall well being!
For a long time, particularly during "those 10 weeks" and even more in the awful following 10 days, I had wholly abdicated my responsibilities for food to Diana (bless her), not caring if I had a Fortijuce or sponge pudding for dinner, and only vaguely aware of my nutritional needs. Maybe the most telling thing of all was the fear of having to eat three times a day, every day for ever. A truely debilitating thought. And even though it's all explicable in terms of my reaction to the radio-therapy inspired fatigue and chemo tiredness, that's no way to recovery and no wonder I lost so much weight. The negative inward dark spiral was, I now see, fed by my failure to eat. Diana cared so much, but there was only so much she could do to keep my body and soul together.
And then something happened. No idea what - effect of steroids? CST? Some magic moment? Whatever it was, something 10+ days ago swapped the spiral round (around the time of my "light at the end of the tunnel" posting?), and my desire to eat returned. Or was it the other way around - did my desire to eat switch the spiral? Whatever the cause, I know there is a direct correlation to this joyful wellness I feel now and an increase in calories from c. 1400 per day to 2200.
But it's not only the quantity - being "well" means you can think positively about the next meal (let's have Chicken wraps for lunch!) while still eating breakfast - such thoughts would have been impossible then. Indeed, if Diana even mentioned food I'd struggle dreadfully... Now, it's a real quality of life thing, something we all take for granted until it's not there...
And there's more - you know I'm a bit of a technology person, and via my son we've discovered a wonderful "diet tracking" app, that not only adds up calories (reading bar codes into a tablet computer still amazes me!), but also tracks protein levels, carbs, fat and all the other vital nutrients we need. And, being me, you also will not be surprised to hear it fascinates and helps me to have that feedback, for example that my protein balance is close to the mark, that I'm getting enough iron and vitamin C etc., and most intriguingly being able to compare foods (not all bagels are the same!!!)
I always knew that diet (and exercise!) is is the one major positive factor I can directly control, how it influences the impact of all the other side effects I have to cope with, and which make me a happier or sadder person. If only dietitians had a bigger influence in the overall cancer-care regime... (and - almost impossible I know - if hospital food was more carefully tailored to the patients' needs).
PS: Weight wise I'm stable right now - the effects of chemo on my digestive system are such that my body is less effective at absorbing what it needs than yours. So while the app is predicting weight gain, I'll probably have to wait to week 2 of each cycle to see any evidence of that.
Still going strong
Well, this is remarkable. I really didn't expect these last few days to be so good - ordinarily we'd expected "the dip", which just hasn't happened this time. Instead, we've continued to enjoy "a good time", getting out to a classical concert in church, a trip to Diana's brother, walks around the village, plenty of visits from friends, "real" work... And more CST! Maybe I'll get to work on the train set later!
And who knows - maybe my insides are showing signs of recovery - certainly from the radio therapy, and even surviving the effects of the chemo more effectively.
But we reckon a major factor is a huge improvement in my diet, helping the "spiral" to continue cycling very positively outwards (more on that in a moment).
And who knows - maybe my insides are showing signs of recovery - certainly from the radio therapy, and even surviving the effects of the chemo more effectively.
But we reckon a major factor is a huge improvement in my diet, helping the "spiral" to continue cycling very positively outwards (more on that in a moment).
Saturday, 22 November 2014
A good (the best?) end to the week
I am delighted to say the excellent 2nd half of cycle 2's "inner wheel" has continued through cycle 3's treatment day and into this weekend - it's those steroids again! Nonetheless and however long it continues, it's great to feel as well as I did back in May!!
As well as this contented well being(#) we've had two good reviews with my Oncologist (chemo) and Interventional Radiologist (SIRT).
Overall, my Oncologist continues to be amazed at how I've survived these last several months (thanks in part to you of course!). I likened myself to Mr Wobbly Man from Noddy(*)!! So much so that he's planning to introduce, at long last, Avastin (technically, the MAB Bevacizumab) to the mix next time... Side effects = ? Ho hum!
The Radiologist review was more about the last few weeks and the immediate future than treatment and results per se. They were not, of course(!), surprised to hear of my tribulations since the injection; although concerned they'd not forewarned us sufficiently. It was good that, as an "articulate and intelligent patient" (!!!!), I could help them understand this, and in particular how their/my definition of "fatigue" needs explaining. (Going forward, they did warn us of a common 2nd "mini fatigue dip" that may hit sometime soon... Ho hum!)
As for the outcome of Yttrium's decay from aw90 to aw89... my body has already completely benefited from that "radioactive scalpel", but we will not know what that outcome is until a consultation in the week following Christmas, following MRI and CT scans in mid December. Ho hum!
But enough of this ho humming, not only have I rung bells this week, I've walked further and more strongly than in ages, done more work than since September, and enjoyed your company and conversation more than ever. Long may it continue!
(#) as close to "happy" as it gets!
(*) For my overseas readers: the series of "Noddy" books were written in the 1950's by Enid Blyton (see wiki). Popular with children of my generation (who in the UK remembers "Why have elephants got Big Ears? Because Noddy won't pay the ransom!"), and in spite of an attempted revival via animated TV series in the 2000's, his popularly in the UK has waned. Not so in France and India! It happens that one of the character's in the books is a Mr Wobbly man, a roly-poly toy who's bottom half is a weighted hemisphere so that he always springs back upright whenever you try to knock him over!
As well as this contented well being(#) we've had two good reviews with my Oncologist (chemo) and Interventional Radiologist (SIRT).
Overall, my Oncologist continues to be amazed at how I've survived these last several months (thanks in part to you of course!). I likened myself to Mr Wobbly Man from Noddy(*)!! So much so that he's planning to introduce, at long last, Avastin (technically, the MAB Bevacizumab) to the mix next time... Side effects = ? Ho hum!
The Radiologist review was more about the last few weeks and the immediate future than treatment and results per se. They were not, of course(!), surprised to hear of my tribulations since the injection; although concerned they'd not forewarned us sufficiently. It was good that, as an "articulate and intelligent patient" (!!!!), I could help them understand this, and in particular how their/my definition of "fatigue" needs explaining. (Going forward, they did warn us of a common 2nd "mini fatigue dip" that may hit sometime soon... Ho hum!)
As for the outcome of Yttrium's decay from aw90 to aw89... my body has already completely benefited from that "radioactive scalpel", but we will not know what that outcome is until a consultation in the week following Christmas, following MRI and CT scans in mid December. Ho hum!
But enough of this ho humming, not only have I rung bells this week, I've walked further and more strongly than in ages, done more work than since September, and enjoyed your company and conversation more than ever. Long may it continue!
(#) as close to "happy" as it gets!
(*) For my overseas readers: the series of "Noddy" books were written in the 1950's by Enid Blyton (see wiki). Popular with children of my generation (who in the UK remembers "Why have elephants got Big Ears? Because Noddy won't pay the ransom!"), and in spite of an attempted revival via animated TV series in the 2000's, his popularly in the UK has waned. Not so in France and India! It happens that one of the character's in the books is a Mr Wobbly man, a roly-poly toy who's bottom half is a weighted hemisphere so that he always springs back upright whenever you try to knock him over!
Tuesday, 18 November 2014
Stop the presses - Ian's been bell ringing!
Yes indeed; probably a year to the week since I last rang a Church bell, Diana and several friends persuaded me to do something "normal" today.
So for the first time since November 2013 I went bell ringing!
Very nervous, both of my own body and my memory...
Fortunately my excellent long term teacher was on hand in case of disaster - so we started with me on my own: it turned out to be like riding a bike! At least riding it in a straight line! A real joy.
So then to "Rounds", with all the bells being rung in sequence (like in murder mysteries on the TV) which was OK - the metaphorical bike can turn corners... And then I got cocky... I asked to ring "Call changes", where bells change places in the sequence, and it all went a bit wonky!!! So next time I'll need to get my metaphorical bike to change gears properly!!
But it was great to get out at last and for the firat timw do something unrelated to my condition since before the op. It felt like a real milestone.
PS: Diana was enticed to have her first " lesson", and she was really rather good!
So for the first time since November 2013 I went bell ringing!
Very nervous, both of my own body and my memory...
Fortunately my excellent long term teacher was on hand in case of disaster - so we started with me on my own: it turned out to be like riding a bike! At least riding it in a straight line! A real joy.
So then to "Rounds", with all the bells being rung in sequence (like in murder mysteries on the TV) which was OK - the metaphorical bike can turn corners... And then I got cocky... I asked to ring "Call changes", where bells change places in the sequence, and it all went a bit wonky!!! So next time I'll need to get my metaphorical bike to change gears properly!!
But it was great to get out at last and for the firat timw do something unrelated to my condition since before the op. It felt like a real milestone.
PS: Diana was enticed to have her first " lesson", and she was really rather good!
Saturday, 15 November 2014
Wheels within wheels
Sorry I've been a way so long... explanation follows!
I've often posted about the "chemo cycle" I'm on - every two weeks another relaxing (honest!) day on the clinic's treatment room being infused with chemotherapy specifically chosen to attack my form of cancer.
And how within that two weekly "wheel" there's another cycle, slightly less precise, on the way I react to the injection of "drugs" - a few usually glorious days during which the side-effect combating steroids do their stuff, followed by a "down" period when my body is left to cope as best it can, before it begins to recover in time for the next outer cycle to begin.
Only that didn't happen this time. The wheel didn't exactly come off(!), and yes, I was delighted the first couple of "down" days were shallower than the norm, but we'd not reckoned on the lasting effects of my operation (7 weeks ago) or radio-therapy (3 weeks ago) - combining with the chemo these conspired to keep me fatigued(*), tired, and in constant (low level) pain for a lot longer than we naively expected. :-(
But then I had more CST on Friday! :-)
Admittedly I'd woken Friday morning feeling a littler perkier anyway, but - oh boy! Did I get value for money from my CST Therapist! A truly wonderful hour (part tummy, part head) that left me feeling 100% better for the rest of yesterday. Which of course then set me up for "doing stuff" (first time I'd "done stuff" since the last posting!), followed by a good night's sleep, and then an even better feeling this morning...
It is quite amazing how spirals can turn so quickly - one moment it's ever downward (sorry, that's a helix - I should say inwards and increasingly confined!), then suddenly something happens and one's heading in exactly the opposite direction (i.e. outward and more expansive towards the light!). Never have I realised more clearly how one's mental attitude to life influences things, and equally how one's mental attitude can be so easily affected by one's physical well being.
(*) An interesting word. IMHO not the same as tiredness. Much closer to weariness: "battle fatigue" is something we can easily distinguish from "post-marathon tiredness", "I'm so weary I can't be bothered". A time when one's intellectual self can be many miles adrift from one's emotional self. Delighted to say, however, that they are back arm-in-arm!
I've often posted about the "chemo cycle" I'm on - every two weeks another relaxing (honest!) day on the clinic's treatment room being infused with chemotherapy specifically chosen to attack my form of cancer.
And how within that two weekly "wheel" there's another cycle, slightly less precise, on the way I react to the injection of "drugs" - a few usually glorious days during which the side-effect combating steroids do their stuff, followed by a "down" period when my body is left to cope as best it can, before it begins to recover in time for the next outer cycle to begin.
Only that didn't happen this time. The wheel didn't exactly come off(!), and yes, I was delighted the first couple of "down" days were shallower than the norm, but we'd not reckoned on the lasting effects of my operation (7 weeks ago) or radio-therapy (3 weeks ago) - combining with the chemo these conspired to keep me fatigued(*), tired, and in constant (low level) pain for a lot longer than we naively expected. :-(
But then I had more CST on Friday! :-)
Admittedly I'd woken Friday morning feeling a littler perkier anyway, but - oh boy! Did I get value for money from my CST Therapist! A truly wonderful hour (part tummy, part head) that left me feeling 100% better for the rest of yesterday. Which of course then set me up for "doing stuff" (first time I'd "done stuff" since the last posting!), followed by a good night's sleep, and then an even better feeling this morning...
It is quite amazing how spirals can turn so quickly - one moment it's ever downward (sorry, that's a helix - I should say inwards and increasingly confined!), then suddenly something happens and one's heading in exactly the opposite direction (i.e. outward and more expansive towards the light!). Never have I realised more clearly how one's mental attitude to life influences things, and equally how one's mental attitude can be so easily affected by one's physical well being.
(*) An interesting word. IMHO not the same as tiredness. Much closer to weariness: "battle fatigue" is something we can easily distinguish from "post-marathon tiredness", "I'm so weary I can't be bothered". A time when one's intellectual self can be many miles adrift from one's emotional self. Delighted to say, however, that they are back arm-in-arm!
Friday, 7 November 2014
It was the light!
Yes, I'm delighted to say this roller-coaster took us to the top of the curve, and i've felt really quite well for the last few days since therapy, helped in no small part by a lovely stream of visitors!
So here's to the next few weeks/familiar chemo cycles(*), hopefully building towards a great family Christmas... What a year it's been.
(*) Yep, that exquisite cold pain in my hands and fingers has returned!!
Tuesday, 4 November 2014
Is that a light at the end of the tunnel?
We hope so...
I'm at last on the up, mostly. Fatigue and tiredness much improved as the effects of chemo- (cycle 1) and radio-therapies abate, and the healing muscles begin (at least in small measure) to settle down and behave - I actually slept last night!
This comes to you from the clinic, towards the end of a 9 hour stint - as well as the normal therapy (cycle 2 of the new era) I'm enjoying a blood transfusion: it seems the fatigue/tiredness was anaemia caused by the radio therapy, so a "couple of units should help". I reckon my red blood cells were on their way up anyway(*), but still at such a low level that a little help won't hurt...
But it is good to be feeling so much better, if not yet fully well.
(*) interesting how the decision to do a transfusion was based on a "false" downward trend (high just before the RT infusion through to a low level today), whereas the probable trend has Ben up, from a deeper low soon after the infusion. Practical example of getting the sampling rate wrong!
Tuesday, 28 October 2014
This is so tough
No, we did not expect this... We thought the 8 challenging weeks had finally run their course, and this week I'd back on the "normal" chemo course...
Far from it.
I had no idea of the fatigue the radiotherapy would trigger - I guess we should have realised it would cause inflammation and therefore reduce the effectiveness of my liver: this is why it's not possible to judge the radiotherapy's effectiveness for weeks, waiting for the liver to recover.
And on top of this, chemo tummy's back, along with those "" healing" pains in my abdomen again :-(. Hopefully, particularly as the radioactivity subsidies, my energy levels will rise, and I'll cope better. For now, we're hanging in there.
Friday, 24 October 2014
Craniosacral Therapy
Like Bowen and Reiki, I have no idea how it works, but for me it does.
Classically, I am told, CST focuses on "massaging" the head, but - as the name suggests, it can be applied anywhere between the head ("cranio") and pelvis ("sacrum"); and in my case that means the tummy area.
And to great effect! More "hands on" than Bowen or Reiki, the therapist gently massages the troubled areas, with a delicate circular pressure and a lot of mental focus. Just enough for me to feel the pressure, - but enough to be relaxed and soothed by; it is remarkably calming. And provides a continuing sense of well being (and pain-free-ness!) long after the therapy session is over.
Given my radioactive state, I have to wait a week before my next session! :-(
Stage 2: went really well
At least from my perspective! The interventional radiologist was also very pleased, although we will not see evidence of the Yttrium pellets' effectiveness for 10 week or so - it's very hard to separate any influence on the tumors from the peripheral effects of the radiation on the liver as a whole (inflammation etc.). Only when this has abated can they tell.
And of course in the meantime I'll have had more cycles of Folfox, as well as begun the Avastin! So that scan (early Jan?) will be a big moment, having the effect of all three treatments...
But at the moment I am feeling AOK. Maybe it's a combination of an excellent Craniosacral session on Monday and the steroids from chemo, but the outcome is that, in spite of everything these past two days, I feel fine and quite pain free!!!
So, we're now back on the merry-go-round of fortnightly Folfox... Wonder when the cold fingers will kick in, if/when my sense of taste will change, and how my appetite will hold up? But for now I am enjoying the moment!
Monday, 20 October 2014
A busy week ahead
Well it seems Stage 1 was successful - we've not heard otherwise! So Stage 2 is still on for Thursday/Friday... Excited and scared in equal measure! 7 days of (more or less) quarantine might be tough...
But before then we recommence chemo (Folfox) tomorrow, Tuesday. I hope I'll cope with this continuing abdominal pain, which is generally better for sitting down. And, thank goodness, we've confirmed with my surgeon the pain is indeed just the normal internal healing process.
However, last Friday we managed to get to our physical therapist, who worked a minor miracle on my tummy and abdomen, using craniosacral therapy. In the same class as Bowen and Reiki, for me and for whatever reason, CST had a really calming and easing effect, reducing (relaxing?) the tummy pains for a good 12 hours... so effective was it, I'm going back this afternoon in the hope it can set me up for the rest of the week!
Chemo, Radio, MAB... the fightback restarts here!!!
Wednesday, 15 October 2014
Stage 1: surprisingly straightforward!
Home again, feeling AOK from yesterday's procedure (still got tummy pain though from the earlier op).
We'll not know if it was successful for a day or two (when they've analysed the Technetium "dummy run"), but the surgeon seemed very positive, so fingers crossed!
One thing though - I was a little awry on the objectives of stage 1 - not to put in tubing, but just to block off unwanted pathways, so that the pellets only go where they're wanted.
Come next Thursday, they will run a catheter upstream along my femoral artery, turn right into the liver's tributary (now facing downstream), and navigate to the ends of the artery, hunting out the appropriate capillaries into which the pellets are injected.
But for the time being, we're focused on getting me fitter, particularly since chemo starts on Tuesday!
Tuesday, 14 October 2014
SIRT - the detail
If you are interested in the technical details...
SIRT (Selective Internal Radio Therapy) is not just a hose, saline and a bunch of pellets inserted and "fired" into my liver for 5 minutes!
It's also not widely available.
It's one of the most sophisticated procedures available from the NHS - only 10 hospitals are qualified to do it, and they do 1 per week each!! I feel so fortunate to be accepted onto the programme - for that's what it is, still a trial funded by the NHS.
First of all, it involves 2 overnight hospital visits - today for the plumbing, and a week on Thursday for the pellet injection.
Today, I am going to have to lie still fojr 5 hours as they insert tubes and bungs to ensure the injection through my femoral artery goes to all the right places in the liver, and avoids the areas it is not needed via "coils" (bungs) that block off other unwanted routes - whether those pathways to still healthy parts of my liver, or to other organs.
This stage concludes with a "dummy run" with a very weak radioactive source (technetium, 6 hour half life, gamma ray) that's tracked through my body from the injection site to check all is well.
Then just over a week's time they will administer the pellets.
These are microscopic, smaller than the width of a human hair, with millions in the small vial of serum. They are yttrium 90, manufactured only in Australia, and decay to yttrium 89 via beta particle (electron) decay, with a 2 day half life. The electrons have very short range (1 to 2 cm), hence the need to get them to the right places.
But as they are absorbed, they emit X rays that leave the body, which is why we do not want to expose me to too many people for 7 days from the injection - however the levels are very low, and Diana is perfectly safe given we take simple precautions.
The efficacy is still "unknown" (it's a trial!) But strongly believed to be "good" in the majority of cases. It also must be delivered in conjunction with chemo, hence I recommence that treatment next week, in between the two stages of SIRT.
Overall we are very excited - not only no primary any more, but also THREE treatments on the secondary - SIRT, chemo and the MAB (Avastin)... one of them has got to work!
SIRT - here we go!
This comes to you from a radioactively shielded side room, designed to keep the (low levels!) of radioactivity in (not out!). Yes, here we go...
...well, not quite - our excellent meeting with the professor last Friday had two results; a better understanding of the two-stage procedure, and that we're doing it now!
Stage 1 (today) puts in place all the "plumbing" catheters needed to guide the radioactive pellets to the cancer cells, from my groin (femoral artery) to numerous exits in my liver, while also blocking off the side capillaries going to other places.
Then a week on Thursday I come back for stage 2, the injection of millions of microscopic radioactive beads, which will "attack" just those cells in the immediate vicinity of the catheters.
If you're thinking "wow!" you'd be right - this seems to be "one of the most sophisticated procedures available on the NHS", requiring 6 different professions during the op, taking 6 hours to perform stage 1, and only 10 hospitals being registered to perform it.
So here goes!
Thursday, 9 October 2014
Getting better all the time... (*)
A good(ish) few days... Strength building and plans forming, with only one real challenge of internal pain, as my insides "de-inflame"; maybe including movement of the newly located bowel!! As I've said many times a man with a funny tummy is not funny!!
But we've perambulated around the village without too much effort, and I'm doing copious circuits and bumps around the house to get strength back in the legs - I'm still heavier than before the op with (I think!) better "tone" and general mobility much improved.
And I've just woken this morning without the same level of internal pain! Granted I've not moved much yet, but it does feel a lot better - progress!!
And other progress too - meeting the Radiologist tomorrow to discuss SIRT, the use of internal radioactive pellets in the liver!! Very excited, particularly since they've arranged MRI and CT scans on the same day; feels like good progress.
And seeing my Oncologist Monday to discuss next chemo steps... It really is all go!
(*) with apologies to the Beetles!
Sunday, 5 October 2014
I'm home! (A few days ago!)
I''m so sorry not to have posted earlier, but I was fit enough to come home last Tuesday, only 6 days (to the hour!) after the operation - such was the power of the "enhanced recovery programme".
Granted I was still feek and weeble, (the journey home was tiring) so there wasn't much energy or appetite for blogging Wed or Thur.
Anyway, delighted to say recovery continues a pace, with side effects abating, pain reduced to the healing process around the keyhole, and insides working quite well. We have an interview with my oncologist in 8 days time, so I anticipate this sojourn to end in a couple of weeks when we get back on the chemo, then the Avastin. No news yet of the SIRT treatment.
So, overall Plan A has worked out exactly as we hoped, giving us a great chance to focus on just the one thing! All I have to do now is recover body weight and muscle, before the next onslaught - thank heavens !y taste has returned!!
Sunday, 28 September 2014
A better day!
Now four days after the op., and all seems AOK! My internals have now settled down (both the reconstructed bits and otherwise), and the keyhole(!!) is itching nicely.
Which tells you we are still on "plan A" - the ideal path as Diana and I call it. A few more days yet to be sure all is holding strong, but the "signs" are good for a recovery to "normal processes". Let us hope and pray things continue on this path.
And another hoped for positive is emerging - a return of taste! Ten day break from chemo and food is a pleasure again - even hospital food. Cheese! Bread! Meat! Wine... no, only joking, no idea yet on that...! Yes, OK it'll go again when we restart the full cocktail of chemo, but let's enjoy these few weeks of surgical recovery, and regain a little weight...
Tuesday, 23 September 2014
A good day
Sitting on my hospital bed, having had a good day, maybe the best day in weeks... Just in time for the operation tomorrow! But Diana's done a brilliant job, food and otherwise: gained over 3 kilos since I came home, and systems firing on more cylinders than not. And just as importantly, I feel good.
Have had a great chat with my surgeon, who explained all in clear detail, giving me tremendous confidence and hope for the future - I'll spare you the details, at least for now
All I crave now is a good night's sleep, and a smooth ride tomorrow.
Have had a great chat with my surgeon, who explained all in clear detail, giving me tremendous confidence and hope for the future - I'll spare you the details, at least for now
All I crave now is a good night's sleep, and a smooth ride tomorrow.
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