Well, it's been a tough few days...
Treatment last Thursday was as per normal, a pleasant day "sitting"; but sadly it highlighted a continuing Mg deficiency (just!), which meant an appointment with my now expected 4 hour dose on Saturday.
And what an experience! Lack of ordinary chairs meant I was upgraded to first class (frequent flier miles?!?!), in a very pleasant side room, on the most comfortable adjustable bed, receiving visitors like some maharajah!!!
(As it happens, Saturday was a dreadful day of thunderstorms, and the sideroom shielded me from the worst of a direct lightening hit, which took out the centre's power and phones! Generators are a wonderful thing...)
But we've discovered a side effect of the side-effect-combatting Mg infusion - it screws up your insides (it's a pretty heavy dose!) - it's not just coming off steroids, it's a double wammy of my body having to cope with the chemo/MAB, and the Mg!
Which meant Sunday through Tuesday were very hard work, basically repeating the cycle 12 pattern of duvet days. But this time around we were ready, and in particular rolled with it, using other side effect combatting drugs in time and letting "nature" take it's internal course (literally!) - which meant, unlike last time, Wednesday was NOT a duvet day! Far from it... I got up and made diana's mornomg tea!! And while I'm a little wan today, we're on a far far better trajectory, looking forward to more "better days" than the last cycle.
Suffice it to say we are definitely sticking with the infusion (more ideas for limiting it's effects for next time) - we do not want the Mg pills. So overall we're still on course, 13 uninterupted fortnightly cycles, with #14 in a week and a scan in 10 days...
Thursday, 24 July 2014
Saturday, 19 July 2014
How I am, physically
Some of the more (physically) distant of you have asked "how I am, physically", possibly triggered by my brilliant liver news.
Well, I am " well" is the most vital thing to say - different levels of wellness, depending on where I'm at in the cycle (first Monday to Thursday after treatment Thursday are getting really tough), but I'd not have been allowed to get this deep into the aggressive chemo/MAB regime if I was not!
As you can imagine my oncologist and the centre's nurse practioner verify each and every patient is fit for treatment, via a 20 minute (sometimes much longer!) face2face interview and comprehensive blood tests every single cycle. (For me, vital signs of things like white cell count and infection remain AOK - the focus is my Mg level (last time 0.56, cf. 0.60) hence the 4 hour infusions)
So, the most obvious things to say are that I've lost around 2 stone since diagnosis, and 1 stone since treatment began: back to my weight (10 stone 10 lb) and waist (32 in!) when I was 30!
All my hair has not fallen out! In fact it's showing signs of recovery, particularly my beard (blondie-white) and very bushy eyebrows (black, and curly eyelashes!). And my "hair" hair looks closely trimmed, rather than clumpy.
No sense of taste, appitite or fullness, but managing a proper diet thanks to Diana's cooking blended with the fantastic range of wholesome ready meals (currys etc.) around today. And the smell of food continues to be A1, hence a preference for "aromatic" dishes rather than meat, potatoes etc: lamb rogan Josh, not roast beef.
Insides now more-or-less behaving themselves, which is a blessing, partly down to the medication, partly diet. I loose weight when they don't, and can't put it back on :-(
Very dry skin generally, with some cracking and inflamation of cuticles managed brilliantly by a daily routine of a special moisterisers and sudacreme (brilliant stuff); I'm more moisterised than David Beckham!
The cetuximab rash has migrated from my chest and back to legs, on it's way to my feet I guess! And my face looks weathered rather than rashy.
Maybe the only pain (not physically, thankfully!) are the daily self-injections, one to control clotting (of which I believe I am now free), and one (5 days in the 14) to keep my white blood cells going (which they are!).
As Diana say's, overall I look really well, even on duvet days, even if i am slightly too slight! If only I could do more "standing up things" - energy levels estimated at 50 to 60% normal across the fortnight.
And Sean the Stent and Paddy the Portacath continue to quietly and with no fuss "do their jobs" brilliantly!!!
Well, I am " well" is the most vital thing to say - different levels of wellness, depending on where I'm at in the cycle (first Monday to Thursday after treatment Thursday are getting really tough), but I'd not have been allowed to get this deep into the aggressive chemo/MAB regime if I was not!
As you can imagine my oncologist and the centre's nurse practioner verify each and every patient is fit for treatment, via a 20 minute (sometimes much longer!) face2face interview and comprehensive blood tests every single cycle. (For me, vital signs of things like white cell count and infection remain AOK - the focus is my Mg level (last time 0.56, cf. 0.60) hence the 4 hour infusions)
So, the most obvious things to say are that I've lost around 2 stone since diagnosis, and 1 stone since treatment began: back to my weight (10 stone 10 lb) and waist (32 in!) when I was 30!
All my hair has not fallen out! In fact it's showing signs of recovery, particularly my beard (blondie-white) and very bushy eyebrows (black, and curly eyelashes!). And my "hair" hair looks closely trimmed, rather than clumpy.
No sense of taste, appitite or fullness, but managing a proper diet thanks to Diana's cooking blended with the fantastic range of wholesome ready meals (currys etc.) around today. And the smell of food continues to be A1, hence a preference for "aromatic" dishes rather than meat, potatoes etc: lamb rogan Josh, not roast beef.
Insides now more-or-less behaving themselves, which is a blessing, partly down to the medication, partly diet. I loose weight when they don't, and can't put it back on :-(
Very dry skin generally, with some cracking and inflamation of cuticles managed brilliantly by a daily routine of a special moisterisers and sudacreme (brilliant stuff); I'm more moisterised than David Beckham!
The cetuximab rash has migrated from my chest and back to legs, on it's way to my feet I guess! And my face looks weathered rather than rashy.
Maybe the only pain (not physically, thankfully!) are the daily self-injections, one to control clotting (of which I believe I am now free), and one (5 days in the 14) to keep my white blood cells going (which they are!).
As Diana say's, overall I look really well, even on duvet days, even if i am slightly too slight! If only I could do more "standing up things" - energy levels estimated at 50 to 60% normal across the fortnight.
And Sean the Stent and Paddy the Portacath continue to quietly and with no fuss "do their jobs" brilliantly!!!
Wednesday, 16 July 2014
1 day
What a difference a day makes!
Last day before treatment #13, and I'm at last well and truely "up"! Not that I've slipped back since those duvet days, far from it - it's just that I've realised it's taken longer to get back up in #11 and #12 (a full week) than #8 and #9 (just a few days after the "dip"); which is an obvious expectation.
Had a great session with a locum doctor at the clinic on Tuesday (some have said "Great? With a locum!?!?"), she was on the ball, knew my case, and discussed some knotty issues with candour and sensitivity - not that the doctor on leave is/was any different, but the fresh view was welcome.
And we got one great piece of news: as indicated by each recent cycles' blood tests, my liver is operating "perfectly normally"! It wasn't, at the start of treatment, but it is now!! So my oft recited mantra " it's the chemo not the cancer" turns out to be true; and I'm not going to fight the chemo: "roll with it, let it do it's job!".
Here's to #13... and #14 before my next scan...
Last day before treatment #13, and I'm at last well and truely "up"! Not that I've slipped back since those duvet days, far from it - it's just that I've realised it's taken longer to get back up in #11 and #12 (a full week) than #8 and #9 (just a few days after the "dip"); which is an obvious expectation.
Had a great session with a locum doctor at the clinic on Tuesday (some have said "Great? With a locum!?!?"), she was on the ball, knew my case, and discussed some knotty issues with candour and sensitivity - not that the doctor on leave is/was any different, but the fresh view was welcome.
And we got one great piece of news: as indicated by each recent cycles' blood tests, my liver is operating "perfectly normally"! It wasn't, at the start of treatment, but it is now!! So my oft recited mantra " it's the chemo not the cancer" turns out to be true; and I'm not going to fight the chemo: "roll with it, let it do it's job!".
Here's to #13... and #14 before my next scan...
Sunday, 13 July 2014
200 days
In and of itself, it's not a big deal I guess; after all it's a somewhat random start point, but last Friday was 200 days since my diagnosis on the 23rd December 2013.
Having said that it's a random number, I think it is a significant fact, I might even say success, that Diana and I have lived with/through those 200 days, from the turmoil of the first weeks to our now more positive and hopeful balanced states of mind, aided and abetted by so many family, professionals and friends.
But we have to admit life does still feel like the fairground game of "bash the monkey" (*); no sooner have we tackled (bashed) one unforeseen challenge, than another pops up at random!
Hey ho, KBO as Churchill constantly muttered...!
(*) Take a mallet, stand in front of a table full of holes, and try to bash the wooden pegs that pop up far too frequently out of those holes in random places!
Having said that it's a random number, I think it is a significant fact, I might even say success, that Diana and I have lived with/through those 200 days, from the turmoil of the first weeks to our now more positive and hopeful balanced states of mind, aided and abetted by so many family, professionals and friends.
But we have to admit life does still feel like the fairground game of "bash the monkey" (*); no sooner have we tackled (bashed) one unforeseen challenge, than another pops up at random!
Hey ho, KBO as Churchill constantly muttered...!
(*) Take a mallet, stand in front of a table full of holes, and try to bash the wooden pegs that pop up far too frequently out of those holes in random places!
Thursday, 10 July 2014
Duvet Days
What a wonderful weekend, celebrating my (belated) birthday!! Had a marvellous Saturday (following my 4 hours of Mg infusion!), all evening with the whole family in the garden enjoying an al fresco meal (thank you, M!), warmed by two fires (thanks to S!!) and... a stunning malt whisky!
But... Maybe things have caught up on me (three hectic weekends) because once the steroids wore off on Sunday, down under the duvet I slipped. Really "feak and weeble" for the last three days: I'm only grateful it's taken to cycle 12 to get me - it could have been a few cycles ago, but somehow I've "escaped" the worst of this tiredness to now.
Still, Diana and I knew it would happen at some point, and took to heart the very sound advice a fellow patient offered many weeks ago "roll with it, go to bed (get up for meals!) and it will pass". And, in large measure it more or less has. Still well below the curve, but no desire for duvets today! letr's hope for a continued recovery over the weekend.
Thursday, 3 July 2014
Reflection: it is the way it is, and WE can handle it!
Looking back through this blog, I see a constant pattern, of accepting the way it is - and handling it. but "handling it, whatever it emerges to be" is not just "me" - what I found more heartening and warming as I read there entries is that this is not "me", it's "us".
"Us" is most obviously me and Diana, supported so well by the wonderful nurses and staff at my clinic - but quite critically and vitally important to both of our wellbeings is that, to me, "us" means me and you.
"Us" is most obviously me and Diana, supported so well by the wonderful nurses and staff at my clinic - but quite critically and vitally important to both of our wellbeings is that, to me, "us" means me and you.
Ups and Downs (or downs and ups!)
So cycle 12 begins! It's now 22 weeks since my first session - oh boy that both feels "like, for ever!" as well as "wasn't cycle 1 only yesterday?" all at the same time.
And I guess that's a major part of the explanation of this post's name - after 11 cycles in I'm bound to be feeling "wan". Particularly since we've had an amazing fortnight (that's biweekly to our American cousins!) socially, with the village Fete two weeks ago and then an "Open Gardens" weekend just gone; with both organizing committees chaired by Diana! Under normal circumstances I'd have been heavily involved in the "heavy lifting" of erecting Marquees (tents) and transporting chairs and tables etc., but this year... no energy = no lifting!
I guess this is to be expected at cycle 12 - my Oncologist is amazed how I'm still coping with a fortnightly cycle of every drug he can throw at me - but none-the-less this "permanent weakness" is tough to take. Of course, all our friends who could do the heavy lifting did, fully understanding my predicament and were delighted to step in, but it's still a challenge. So a downer... then an upper: we all have numerous talents, and some I'm blessed with are more "sitting down" than "standing up" - like liking numbers (i.e. taking on the accounts) and using the computer to create/publish visitor programmes!
So if the cytotoxins are doing this to me, what are they doing to the cancer?!??! Well... that was the other downer - and then an upper! After 8 or 9 cycles of reassuringly steady decline, my CEA number had been slowly climbing again for a couple of cycles; not in and of itself directly significant (there are several reasons why, not all of which are malign), but none the less enough of a worry for my Oncologist to consider bringing my next scan forward... but, wonderfully, this week's reading was slightly down again, and the scan remains "as scheduled"!
So, on we go... after a hectic June, we're now looking forward to this weekend full of children, grandchildren - and steroids (what a combination! :-) ) to celebrate my 57th Birthday!!!
And I guess that's a major part of the explanation of this post's name - after 11 cycles in I'm bound to be feeling "wan". Particularly since we've had an amazing fortnight (that's biweekly to our American cousins!) socially, with the village Fete two weeks ago and then an "Open Gardens" weekend just gone; with both organizing committees chaired by Diana! Under normal circumstances I'd have been heavily involved in the "heavy lifting" of erecting Marquees (tents) and transporting chairs and tables etc., but this year... no energy = no lifting!
I guess this is to be expected at cycle 12 - my Oncologist is amazed how I'm still coping with a fortnightly cycle of every drug he can throw at me - but none-the-less this "permanent weakness" is tough to take. Of course, all our friends who could do the heavy lifting did, fully understanding my predicament and were delighted to step in, but it's still a challenge. So a downer... then an upper: we all have numerous talents, and some I'm blessed with are more "sitting down" than "standing up" - like liking numbers (i.e. taking on the accounts) and using the computer to create/publish visitor programmes!
So if the cytotoxins are doing this to me, what are they doing to the cancer?!??! Well... that was the other downer - and then an upper! After 8 or 9 cycles of reassuringly steady decline, my CEA number had been slowly climbing again for a couple of cycles; not in and of itself directly significant (there are several reasons why, not all of which are malign), but none the less enough of a worry for my Oncologist to consider bringing my next scan forward... but, wonderfully, this week's reading was slightly down again, and the scan remains "as scheduled"!
So, on we go... after a hectic June, we're now looking forward to this weekend full of children, grandchildren - and steroids (what a combination! :-) ) to celebrate my 57th Birthday!!!
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