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.

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).

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!

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!

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!

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!!

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!