Wow what an experience!
Just home from my second Reiki session, and it was better than the first! I guess this time I knew what to expect, and engaged more with the philosophy (whatever the physiological reality may be!); it was definitely a hugely positive thing to "breath in the energy" being offered by the therapist. And, whatever the reason, her hands (and my legs) felt a lot warmer than might be expected from simple touching...
As the session came to an end, and definitely afterwards, the feeling of complete well being is undeniable (I'm fortunate that I have an hour's "sit" as Diana is treated with a far more physical therapy - running village fetes and bad backs are not a good combination!)
So, as we (hopefully) come to the end of the 2nd quarter of my fortnightly cycle, I can hope to feel a lot more energetic than these last few days; which as per the norm have been somewhat tiring and more tiresome than normal. As it happens, I probably have no choice other than to "improve" by Saturday - we're heavily involved with our village's "Open Gardens Weekend" (Diana doing teas!).
All being well, next week will be a quieter social week albeit meeting with my Oncologist on Monday (with all the usual questions.... are my white blood cells recovering? Is my Mg level satisfactory? What's my CEA number? Can we tell anything about the cancer's activity?)
(*) The regular cycle of fortnightly meetings with the Centre's Nurse Consultant (dealing with the effects of the treatment on me) alternating with fortnightly sessions with my Oncologist (who's focused more on the effects of the treatment on the cancer) is quite brilliant.
Thursday, 26 June 2014
Monday, 23 June 2014
23rd June 2014...
...is exactly 6 months since my diagnosis.
It's of course been tough - very tough sometimes; but greatly eased on so many occasions by your support.
Today, at this moment, we feel betwixt and between, with so little knowledge of what's actually happening "inside" other than "it was stable" 4 weeks ago... All we can do is continue to do our best to treat the side-effects (admittedly most of which the side-effects drugs are coping with - it's the numerous more niggly rest that are being overcome by Diana's mastery of first aid, skin care, and diet!).
We just have to do our best to keep me fit and well - and I feel fitter and weller than in weeks past - so I can maintain the most aggressive fight-back I can; hoping and praying that we can beat the odds (*).
I think I've commented before that my state of (good) health, combined with the outcome of the last "stable" scan does mean we're continuing on to cycle 13 and beyond, at the same aggressive (tough) 2 weekly frequency, thereby extending the original regime (of 12 cycles) to be "for as long as it takes". Either we'll see a marked improvement ("way to go, Cetuximab!"), or I will eventually succumb to the effects of the Cytotoxins... We expect(!) the former!!!
(*) While I am not quite so "nervous" as I was - it's over 9 months since I last had "something" (other than cancer!) - this ned to stay well does mean continuing to avoid close-proximity groups of people, including my long-forgotten pleasures of bell ringing and singing, as well as missing regular and and one-off group and village events :-(
It's of course been tough - very tough sometimes; but greatly eased on so many occasions by your support.
Today, at this moment, we feel betwixt and between, with so little knowledge of what's actually happening "inside" other than "it was stable" 4 weeks ago... All we can do is continue to do our best to treat the side-effects (admittedly most of which the side-effects drugs are coping with - it's the numerous more niggly rest that are being overcome by Diana's mastery of first aid, skin care, and diet!).
We just have to do our best to keep me fit and well - and I feel fitter and weller than in weeks past - so I can maintain the most aggressive fight-back I can; hoping and praying that we can beat the odds (*).
I think I've commented before that my state of (good) health, combined with the outcome of the last "stable" scan does mean we're continuing on to cycle 13 and beyond, at the same aggressive (tough) 2 weekly frequency, thereby extending the original regime (of 12 cycles) to be "for as long as it takes". Either we'll see a marked improvement ("way to go, Cetuximab!"), or I will eventually succumb to the effects of the Cytotoxins... We expect(!) the former!!!
(*) While I am not quite so "nervous" as I was - it's over 9 months since I last had "something" (other than cancer!) - this ned to stay well does mean continuing to avoid close-proximity groups of people, including my long-forgotten pleasures of bell ringing and singing, as well as missing regular and and one-off group and village events :-(
Thursday, 19 June 2014
An "OK" end of cycle
Phew!
Sitting here in therapy at the clinic, feeling pretty OK. But it wasn't quite the "upbeat" fourth quarter I anticipated - nothing untoward (other than the ongoing challenge with my feet), just not so energetic as previous cycles. Maybe it was to be expected because we did more (which is great - see last post!) - and there's alway sgoing to be a randomness about these things.
No randomness about my magnesium level tho - 't'is down still. Right on the line (0.60), and well up on the week previous (0.54); but nonetheless I've another 4 hour infusion on Saturday.
Which in and of itself is not an issue - 4 hours in a comfortable chair reading or blogging, even working is not exactly hard - but it means I miss my village fête :-( Which is particularly frustrating since Diana will be working her socks of a chairman(sic!) of the fete committee. Oh well, I guess I've done my "back office" bit with producing and printing numerous signs and light "transport" duties.
(if the idea of a "fête" is foreign to you, Google "village fête". Such an English thing - don't be fooled by other country's attempts to copy!)
Of, and the cracks/etc on my feet are hugely improved, thanks to Diana's inspired use of the right creams!
Sitting here in therapy at the clinic, feeling pretty OK. But it wasn't quite the "upbeat" fourth quarter I anticipated - nothing untoward (other than the ongoing challenge with my feet), just not so energetic as previous cycles. Maybe it was to be expected because we did more (which is great - see last post!) - and there's alway sgoing to be a randomness about these things.
No randomness about my magnesium level tho - 't'is down still. Right on the line (0.60), and well up on the week previous (0.54); but nonetheless I've another 4 hour infusion on Saturday.
Which in and of itself is not an issue - 4 hours in a comfortable chair reading or blogging, even working is not exactly hard - but it means I miss my village fête :-( Which is particularly frustrating since Diana will be working her socks of a chairman(sic!) of the fete committee. Oh well, I guess I've done my "back office" bit with producing and printing numerous signs and light "transport" duties.
(if the idea of a "fête" is foreign to you, Google "village fête". Such an English thing - don't be fooled by other country's attempts to copy!)
Of, and the cracks/etc on my feet are hugely improved, thanks to Diana's inspired use of the right creams!
Tuesday, 17 June 2014
A night away
What a great 18 hours!
One of our sons is working away from home (well, they both are, but this one's working in the UK!), and has discovered a delightful country hotel, or as he puts it "restaurant with rooms". He's been staying there a while, and will probably still be there for several more months (weeknights only thank goodness!); and late last week he had the great idea of not coming to us for the odd night (which he has been doing), but for us to go to him (1.5 hr drive) for the evening - and it was brilliant: good company, good conversation, and good food and drink (for him and Diana!).
And, amazingly, it was our first night "away" since before all this broke on us at Christmas!
Yes, we've been to the kids' a few times, but not to a hotel, somewhere "unknown": it was quite liberating! somewhat scarey to be away from my (physical) comfort zone, but none-the-less a good "barrier" to have broken.
As for me, this second week of the cycle has not been as "energised" as others; all-be-it a marked improvement on the 2nd half of week 1 (as expected) - more "sitting down" than "standing up"! Also, had a reassuring session with the clinic's inspirational Nurse Consultant on Monday last, in which the (new!) sideeffects of broken skin on my feet were confirmd to be just that: side effects of the MAB and all to do with drying skin, not a separate infection or something unusual. So Diana's working miricles with a foot cream/balm, and both feet are both back under control - the problem won't go away entirely (not until I stop taking the drugs), but my feet no longer hurt to walk or when I wear shoes.
In all other regards (bar one) the Nurse Consulant was delighted to say I'm tolerating the thereapy "remarkably well", and therefore she has no doubts about continuing treaatment into the foreseeable future - good news indeed. But there is one area of minor concern: my Magnesium levels stubbonly refuse to climb much above the threshold, so I may need regular 4 hour fortnightly Mg infusions - far preferable (she says!) to daily magnesium tablets!
One of our sons is working away from home (well, they both are, but this one's working in the UK!), and has discovered a delightful country hotel, or as he puts it "restaurant with rooms". He's been staying there a while, and will probably still be there for several more months (weeknights only thank goodness!); and late last week he had the great idea of not coming to us for the odd night (which he has been doing), but for us to go to him (1.5 hr drive) for the evening - and it was brilliant: good company, good conversation, and good food and drink (for him and Diana!).
And, amazingly, it was our first night "away" since before all this broke on us at Christmas!
Yes, we've been to the kids' a few times, but not to a hotel, somewhere "unknown": it was quite liberating! somewhat scarey to be away from my (physical) comfort zone, but none-the-less a good "barrier" to have broken.
As for me, this second week of the cycle has not been as "energised" as others; all-be-it a marked improvement on the 2nd half of week 1 (as expected) - more "sitting down" than "standing up"! Also, had a reassuring session with the clinic's inspirational Nurse Consultant on Monday last, in which the (new!) sideeffects of broken skin on my feet were confirmd to be just that: side effects of the MAB and all to do with drying skin, not a separate infection or something unusual. So Diana's working miricles with a foot cream/balm, and both feet are both back under control - the problem won't go away entirely (not until I stop taking the drugs), but my feet no longer hurt to walk or when I wear shoes.
In all other regards (bar one) the Nurse Consulant was delighted to say I'm tolerating the thereapy "remarkably well", and therefore she has no doubts about continuing treaatment into the foreseeable future - good news indeed. But there is one area of minor concern: my Magnesium levels stubbonly refuse to climb much above the threshold, so I may need regular 4 hour fortnightly Mg infusions - far preferable (she says!) to daily magnesium tablets!
Wednesday, 11 June 2014
50!
This is the 50th post in my blog!!! And to think I wondered if I'd get to 15, even 5! It's a testament to you, that you've encouraged me so much to "keep going".
And that's the point - you do seem to add that "extra something" that's so important, whether it's a knitted hug (yes, honestly!), or a chat that allows me to express things ordinary conversations don't touch. Illogical maybe, but self evidently true!
Currently at what's become my lowest ebb in the cycle - the few days immediately after the ceiling hugging steroids. But even this is OK this week: i've just accepted being physically tired and have focused on doing sitting down stuff! Other "low" symptoms have not kicked in, which Diana and I put down to getting my diet right (not so much dairy) and our conscious recognition of the situation - we know things will get better, particularly as I'm on the "2 week" regime and able to rest and recover more easily.
So, 50 posts in and still counting, still fighting back; and still "being normal"!!!
And that's the point - you do seem to add that "extra something" that's so important, whether it's a knitted hug (yes, honestly!), or a chat that allows me to express things ordinary conversations don't touch. Illogical maybe, but self evidently true!
Currently at what's become my lowest ebb in the cycle - the few days immediately after the ceiling hugging steroids. But even this is OK this week: i've just accepted being physically tired and have focused on doing sitting down stuff! Other "low" symptoms have not kicked in, which Diana and I put down to getting my diet right (not so much dairy) and our conscious recognition of the situation - we know things will get better, particularly as I'm on the "2 week" regime and able to rest and recover more easily.
So, 50 posts in and still counting, still fighting back; and still "being normal"!!!
Saturday, 7 June 2014
Cycle 10 starts really well...
...with more magnesium!
Overall, I think we're getting the hang of this, with 2 great days immediately following therapy last Thursday, balancing the steroids with my body's reaction to the drugs - and hopefully a few more days yet! Rather than being my lowest days, as we expected originally, these early cycle days have turned out to be some of the best.
Way to go, steroids - keep me on the ceiling!
Just a pity that my Mg level's slipped back, marginally below the threshold (0.57 v 0.60), so it's another 4 hour infusion here in the centre!
But hey, it's a comfortable chair, Diana's sent me out with a goodie bag to die for (did I just say that?!), and plenty of work to keep me occupied for 44 hours!
Tuesday, 3 June 2014
Way to go, Reiki...
Well, what an experience!
Even more "left field" than Bowen, Reiki turns out to be an amazingly
therapeutic experience!!!
My session on Monday left me totally relaxed, content, and in a funny way, confident. Not prepared to say anything either way on the theory, but the practice was perfect.
So have decided to go every other week ("off cycle" weeks), alternating between Bowen and Reiki!!
Steady as she goes!!
So my Oncologist's expectation is fulfilled - it was a good scan!!! "Everything is stable!".
Exactly as " plan A" anticipated, we have met the cancer head on and I'm holding my own "for the foreseeable future" (at least to the next scan in 10 weeks time!). It seems this is "the normal positive progression" with early treatment cycles usually seeing an improvement, as mine did, with the second phase more a case of consolidation. (Of course some experience the opposite outcomes...)
And secondary indicators are also good - specifically my CEA (Carcinoembryonic Antigen!) number actually dipped below 200 for the first time since my diagnosis last Christmas (dropped to 189)! OK, it's 210ish now, and below 100 would be good, but hey this is progress!!
And overall we're doing well. Admittedly the amazing day 8 did not repeat itself, but "records show" we're both in as good a place emotionally as we can recall - even if physically I'm in the lull between self-injecting the white cell stimulants (which are known to cause tiredness; as all my drug's seem to do, and their eventual positive impact.
And Diana's OK too, doing normal things as well a sterling job with me, particularly the ongoing fun and games we have with daily menus and diet! Say "well done you!!" next time you see her!
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