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!

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.

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!

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!!!

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!

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!

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!

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!!

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...

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.

Two moments

I've been meaning to write this post since I came home 8 days ago: two notable things from the recent "event"...

1) " calcified foreign body... within (Sean the) stent"

While it seems the blockage is indeed the tumour waking up, the crisis was actually precipitated by what we now think to have been a paracetamol pill!!!

Somehow (and neither the radiologist nor surgeon know how) a bog-standard paracetamol got all the way around my innards and lodged in my stent!  But in the long run this was a good thing (although I'd have argued otherwise at the time!!!!), because it alerted all of us to the problem, precipitating the whole dialogue about surgery.  Without it, the probability of spotting a blockage was innimment was low and therefore the chance of delay was high...  

But how did it get so far?   I have my theories, based on how my insides were working at the time, but the bottom line from now on is  "dispersible only" - definitely not the cheap and cheerful supermarket "bomb" like tablets!!!

 2) The 7up! Angel

 About 3 o'clock in the morning of my last night in hospital I "suffered" a massive craving... For an ice cold fizzy drink of all things!!  By chance a nurse was passing on her rounds, and I caught her...  "Is there any chance... At this hour... Your busy... But..."

 And the most remarkable thing happened... She found a can of 7up! !! The closest to nectar I've ever enjoyed!  At 3am!  Where it was from I will never know, but she was a true angel...

Date for operation...

...is 24th September - 9 months to the day since Sean the stent went in and changed my life.  He's done his job brilliantly, in no small measure due to the expertise of the surgeon who put him there.

I'll actually be admitted on the 23rd, so I've 8 days to (a) keep things moving while (b) gathering my strength.  There was talk of operating this coming Thursday, but my body would still have chemo in it - far better to wait a week and give it the maximum chance of healing.

Home at last

Phew. Home again, yesterday (Sunday) lunchtime.  Still very weak, and lost a lot of weight, which is why rest and diet here at home is by far the best option; while my hospital is excellent, life on a ward is not conducive to recovery!

So now we're focused on getting my insides working again, and gaining a little weight ahead of the operation.  To that end, I do detect slight improvements, in that I can again face proper food (but thank heavens for Fortisip!) - if only it would "stick"!  (I never expected to enjoy porridge again, and as for corned beef...!)

So, the only way is forward, and onto the next hurdle. To switch from the track to fell walking... Such a rocky path, but we're over the scree in one piece!

Complications, but a "good" outcome?

I've had a blockage, and currently in hospital feeling pretty grotty.  Not as grotty as two/three days ago, so we're on our way back. Bottom line is it's sortable, and with an outcome we'd hoped for anyway - the news I hinted at in previous posts is I'm to have an operation to remove the primary.

It seems the cause of my regime change was indeed the primary "waking up", and appearing to grow around the end of the stent, slightly blocking the bowel.  Two things we don't want, and therefore we must consider removing the primary.  Added to which is the concern that the stent may increase the likelihood of a serious Avastin side effect, hence the desire to remove the stent, which can only be done via surgically removing the tumour.

So three birds with one stone!  Tumour, blockage, and stent in one go.

Subsequently, after the op (no date yet, but 10 days or so), we hope to be on a full regime (Avastin andFilofox) within the month... because the GOOD NEWS is the treatment seems to be reducing the liver Mets!!!

So bottom line is - in 6 weeks we'll have no more primary and a reducing secondary... Wow!

Round 15

Yep, that's 30 continuous weeks of chemo, and I'm still standing... At 11 o'clock at night!!! OK, you guessed it - it's the steroids!  None the less I'm delighted to say this is the best start to a cycle in weeks:  all because of a blood transfusion...

We've known my red cells had been "down" for a few weeks (contributing to my constant fatigue), but had agreed to try and tackle it via diet and "full nutrition" supplements. This worked, but only partially (I've put on 2 kilos!), so we decided to take Plan A and had a transfusion, which was last Tuesday (2 days ago)  And it quite obviously has done the trick.  But for a couple of days its working was masked by an ongoing bad bout of tummy trouble - which cleared this morning!

So by a matter of only a few hours I was fitter ahead of treatment than I have been for some while, which means I am now enjoying the rewards of being wide awake at 23:30!  But also I'm immediately aware of the cumulative effect of the "cold sensitivity" side effect of Oxyplatin - bare feet on a cool bedroom carpet tingle like mad.

We know this better-than-average start presages the all but certain dip, as my steroid supply runs out, but for the moment we're enjoying feeling well.

In other news... Scan confirmed for "one day next week" - in time for my next consultation with my oncologist; at which we will, I hope make some next step decisions about taking Avastin, and plans for interviews with other specialists.

Oh, and our son's camping holiday in the New Forest is going fantastically well!

No news is no news

Sorry I've been away so long; it's been a tiring week, with fatigue and indigestion keeping me below the line (and losing a little more weight).  Unfortunately, this has coincided with "no news"; either on dates for meetings to discuss " what next?", or for my next scan... as someone who craves information, this is hard for me, particularly since we've currently only got (old) mixed messages on the tumours' (then current) behaviour.

But all this was expected, both my state of health and the scheduling of our next steps; we just have to live with it.  And things are, as we'd expect, looking up a little - we got out on Thursday for Reiki (me, bliss!) and Bowen (Diana); and last night we managed the 100 miles to come and see our son and two grandchildren (his wife's away)!  First time we've made it down here, or anywhere so far since... well, probably my diagnosis!

They are marvellous, so full of energy - I'm "grandchild sitting", trying to keep them out of mischief, while Diana helps with the preparing ans packing for a camping holiday! Thankfully, the weather's meant to be OK, at least for these next few days!

All change, maybe!

Well, one thing's definitely changed - this sensitivity to the cold!  Having had cycle 2 of the new regime (that's 15 in total!), my hands' sensitivity to cold has become sensitivity to cool: step outside, on a chilly late afternoon and - oh boy!  Exquisitely painful tingling!

But at least this is avoidable - just stay warm! Thank heavens for an Aga!  All other previously unavoidable Folfiri side effects continue to be absent, and we're handling the indigestion a little better I think, partly because we understand the need to act quickly and preemptively, and...

...partly because we had an excellent session with the clinic's chemo-specialist dietitian while in the clinic yesterday. She reassured us that we cannot do more than we are with my diet - it is "well known" Folfox causes indigestion, weight loss is inevitable with chemo, and weight gain all but impossible.  She therefore prescribed a dietary supplement (not I emphasise a dietary replacement!) that boosts both calories and protein by a significant %age, to be the basis of mini meals between my three main meals, in order to stabilise my weight....

...as well as suppress indigestion!!  To such a degree that today I relied solely on the tummy protector (aided by the steroids!).  So much so that we enjoyed a wonderful few hours at lunchtime with friends, and I'm still feeling really good!

So why "maybe" in the heading?  Because my regime may not turn out as we thought, at least in the short term: there's a rare side effect of Avastin that I may be susceptible to, and which my Oncologist is "taking council" on to discuss options.  I am having another scan soon to support this discussion.  Nothing more for now, other than to say I am just as excited by one of the options, after which Avastin becomes a viable "weapon" again...

this is such a roller coaster

A week since my last posting... And quite a week.   Once the steroids wore off, I took to my bed!  Maybe predictable based on experience, but quite a change nonetheless.  And mostly caused by just one wholely unexpected thing: permanent indigestion.  Not ordinary indigestion, but "Folfox" indigestion, a permanent phenomenon 24 hours a day for days... Groan...

Sadly, this well known effect of Oxyplatin can be well handled, even prevented in some cases, by the tummy protector; and I've now been told to double the dose around therapy day...  but I'd mistakenly been off it entirely for a full week beforehand!  Groan * 2!! Anyway, while it was a real challenge for both of us, it is now wearing off.

But the great news is all other previous (Folfiri inspired) side effects seem to be much reduced, or even non existent, which makes a fantastic difference (except tiredness of course!)  And this sensitivity to cold remains really weird!  (For those asking, no sign yet of neuropathy - that's pins and needles but moreso to you and me.)

 If we can handle the "uber-indigestion" then I think we can handle this for some while...  It just needs to be working!

Well that's better!

Or as per an earlier blog "what a difference a day makes?"!

First things first:  as per our educated guess, "it is more than likely" that stopping the tummy protector two thursdays ago was indeed an oversight and caused my wholely unexpected dip. As a consequence a note has been made in my record and a discussion of "tummy protection" considered on a wider basis - both excellent news, but trumped by the practical personal step of also supplying an extra just-in-case "stash" (yes, stash!) Of protector to guard against future mishaps!!  It also turns out that on particularly challenging days I can safely take a second (from the stash!): so i'm now covered "top, middle and bottom"!!!! (Apologies to the gameshow!)

As for " now" - the combination of steroids, return of the tummy protector, and absence (this first cycle) of the MAB (Avastin) means I am 100% better than two days ago.  Previous (none tummy) side effects continue to wain, while not all of the new hopefully lesser ones have yet manifested themselves.

But one that has immediately made iself known is wierd!! Reaction to cold (only surfaces so far - not been down the chiller aisle of a supermarket!).  Holding something straight from the fridge causes a strangely painful cold (VERY cold!) sensation in the fingertips!  And the same in the soles of my feet on cold stone floors! And mouth drinking fridge cold drinks... Whether this is intermittent (only immediately after treatment?) or gets worse with increasing cycles is yet to be seen, but definitely tolerable, and avoidable. But WIERD!

So, back on an even keel, riding higher in the water, and generally far more "up" than we were!!  "Way to go, Folfox!"

A good week off? Not... :-(

Well that was disappointing... the good week off turned out not to be: constant tummy troubles!  All week too; we forgot two things - the Mg infusion last Thursday has significant tummy side effects, and I was "off" the tummy protector drug :-(

And, a good thing this, probably the Folfiri and Cetuximab were STILL working?

So we're now on stage 2, with my first cycle of Folfox well underway here in the clinic. Since it's the first time, I'll have to sit for 2 hours while they check my reaction to the Oxyplatin, so therefore here for 6+ hours! Avastin enters the fray next time.

And, being out of my original cycle, (now "even" weeks rather than "odd"!) we've met another group of people, just as positive and focused on success as my old group!

And we too remain positive and hopeful - there are still weapons at our disposal, all of which have good track records; and my body and mind remain strong  (most of the time!) in spite of all the side-effects!

Mixed news

Well what a week.  

Jumping to the end and reading backwards... my treatment is changing from Folfiri, to Folfox.  The difference is on the key drug (from Irinotecan to Oxaliplatin: see what they did with the trade names?), which has a different action.

We're changing because yesterday's hastily arranged scan indicates the cancer in my liver is showing signs of resistance to Folfiri.  This is to be expected (and was suspected when my CEA number stopped falling, even though the timing seems a tad earlier than the average) - in the clinic roughly half of us are on one with the others on the other; and many if not most of us switch at some point (as it happens, a fellow patient we know well is going the opposite way at the same time).

I'm also switching MAB, to Avastin(!) which complements Folfox and also has a different action to Cetuximab.

But the really good news is the scan shows it's not spread, that the primary is stable, and (most critically) the pains in my lower ribs I had on Monday, which caused the scan's hasty reschedule, were not as first thought related to any "developments" in either bowel or liver - not that any of us (medical or otherwise) can now explain them!

It also seems the effect so far of the resistance is minor and we are definitely "steady as she goes", just on a different ship (bear in mind the fact that we have something to change to is a modern miracle).

Side effects may be slightly different: trading current "significant" funny tummy for a less testing digestive system, but with tingling fingers and sensitivity to cold.  On balance, l'll happily make the trade!

Oh, and a small short term benefit: because of the short notice of the switch, we get an extra week off, starting Folfox next Thursday with Avastin added in the next cycle - so we're looking forward to a GOOD week "off"!!

Side effect side effects!

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...

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!!!

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...

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!

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.

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.

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!!! 

Reiki II

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.

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 :-(

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!

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!