The least scary scary things

I suspect this list will grow...

It seems silly now, but I have been scared by some really silly things... "scary things" that have turned out to be wonderful at best, and non-existent at worst!

1. My clinic.
   A year before all this started, I'd been into my clinic to see a relative with breast cancer (who's now fully recovered!).  And, just like 30 years previously when I first crossed the threshold of a school for children with special needs, I felt "worried" about the "difference" the place seemed to represent.
   
   How stupid!  Almost immediately - no. drop the "almost" - I walked in for the first time this time it hit me - the only "difference" I could detect was that there is no difference!  Things are very simple - cancer is just another (serious) disease of the human body; usually treatable, often copeable with and sometimes curable; in much the same way as almost all other serious diseases - and far far more successfully than some.  "The big C" cut down to it's proper size, simply by walking through the front door...
   
2. Tummy injections.
   Oh boy, that was a blow.  "You need to inject yourself near your tummy every day for the foreseeable future..."
   
   Well, what an anti-climax... eventually!  Yes, the first time was tough.  Very tough - a real battle of wills between my hand and my brain.  But the brain won... and what was all the fuss about?  Because the technique "pinches an inch", the only feeling is the fingers pinching the skin - the needle is so sharp and fine, there is no way any "minor pain" it might inflict can "get through"!
   
   PS:  tip from the nurses - just before inserting the needle, relax the pinch ever so slightly, it reduces the compression and the needle glides in.  Keep it firmly pinched, and it takes more effort to get it through!
   
3. Paddy the Portacath.
   "What!  I'll have something inside me for ever? And it'll be accessed by THAT needle?"
   
   (OK, the needle's not that big!)  Paddy is now my second-closest friend - closest is Sean the stent, who's very close to my heart!  Accessing the portacath with a "huber needle" turns out to be completely painless (persuading the nurses of this fact can be difficult!); and, because it's totally enclosed inside me, the risk of infection and it's complications is as close to zero as possible.  net net:  positives - a lot, negatives - none.
   
4. Side effects.
   "Oh boy, what am I in for?"
   
   Yes, I know the side effects of chemotherapy and MABs can be horrid.  I have been so lucky with mine (although of course I did not know that at the beginning).  But there are at least two factors that, for me, eases that fear...
   
   First, side effects may not kick in straight away, whether because there's no "accumulation" yet or because of the excellent side effect drugs, or maybe both.  In any event, this was something I had no idea about - I thought it was "real time cause and effect".  (So when I felt no different after the first cycle, I really wondered what all the fuss was about!). 
   
   Rather, and this is the good bit, they seem to "evolve" - which gives me and the nurses time to react and do what can be done to nip-them-in-the-bud... so long as I discuss things with the nurses sooner not later!
   
   Second - even if they cannot be avoided, it's really important and comforting to realise they are an effect of the treatment, they are probably not the cancer.  If the treatment is having this effect on me, in spite of all the anti-side-effect defences, imagine what it's doing to the cancer!

Reflection: Empathy - and Viewpoints

It strikes me that empathy (not entropy, which is what my engineer's brain first had me write!) may be the most powerful of human abilities, and IMHO one of the critical aspects of any individual or shared beliefs in "how to be human"...

Diana (who's a trained counsellor) has observed several times how a blog is the world - my world, seen in a particular way - my way).  And for some time I have known that this perfectly parallels my professional world's notion of architecture and design, although we'd refer to my blog as a model of my real world, envisioned (as a view) from a particular viewpoint (my viewpoint).

And I now get it... when you look at my blog - from your viewpoint - your "need" from it is pretty likely to be something different than I might expect; because I am not standing with you, looking with you from your viewpoint.  You "get" what I "give" you...

• If your viewpoint is "How's Ian today?" you get a barrage of facts and figures and impressions and reflections that I might think interesting - but all your looking for is "Ian's fine"...
   
• But if your viewpoint is "How does a cancer patient see the world?" then maybe that's closer to my viewpoint and you therefore can "see more" of what you want to see.
   
• And if your viewpoint is "How does a fellow patient cope?" then that's probably looking over my shoulder, and we're seeing the same view.

In architecture (and as I blog A LOT about in ianchartersde.blogspot.co.uk!), this "real world/model/viewpoint" insight is a hugely important idea, one that binds a professional community together in the way they corporately choose to think about the system or bridge or building they are designing...

...but in the real world it's called sympathy and empathy.  Standing with someone, seeing and ultimately understanding the world through their eyes, in a way that allows one to walk or  with them is empathy.  Otherwise, if I choose to remain on my viewpoint and look across at you on yours, the best I can offer is sympathy.

So, from now on, if you feel I'm not "giving you want you need", I'd love to know.  Because one of the wonderful things about this journey is the realization how close I am to you, even if we have such different viewpoints!

PS:  my favourite search engine's response to "define empathy" includes a usage timeline... zero use to 1910, miniscule increase to 1950, and a huge increase from then to now!

"It does what it says on the tin..." (cycle 7)

(If that leaves you a little nonplussed, wiki the phrase, or search for "Ronseal"!)

Had a simple, pleasant day yesterday, having "the works" (MAB and chemo * 3) - it is a relief and rather fortunate for my treatment to be so straightforward, when I see how it affects some others, sometimes a single therapy can take so much effort out of someone.

But the great news is the side effect drugs do do what they claim to do!  On the last six occasions I'd taken the standard formula cocktail and, as predicted and blogged, suffered minimal primary side effects of nausea and sickness.  Sadly, last time, I had significant "challenges" that took me down both mentally and physically; which we then discussed with the clinic's brilliant Nurse Consultant, and who immediately tweaked my prescription.

Hey presto - those debilitating "challenges" have not materialized this time!  Instead, I enjoyed the side effects the "offending" drug was designed to overcome - in other words, that drug "does (indeed do) what it says on the tin"!  As it happens, the feelings of sickness are not unmanageable and seem to be temporary, so a very positive outcome.

net net - sitting here at my desk on a "Peter-Friday" afternoon feeling fine!

Minor Reflection:  

I was mightily impressed with the refreshing approach adopted by my Nurse Consultant - although my previous experience of prescriptions was wholly second hand, it was one in which the cocktail grew and grew, with medicines prescribed to treat symptoms; whether they be underlying or caused by other current medicines.  But not here.  Rather, the whole mix was discussed and refined, resulting in a reduction in number!  Another feather in the clinic's cap.

Cola, Rice Pudding, cup-a-soup...

...and a host of other things I'd never previously expected to "enjoy"!

A couple of cycles ago, I pretty much lost my sense of taste (not smell, thankfully) and as a consequence, at least in part, my appetite. So all those things I used to enjoy; good red wine, roast lamb, chocolate (well, I can still force that down!), cheese, bread and jam now have no effect on my taste buds whatsoever. :-(

But, and this is the bizarre thing, other foods I'd never dreamed of eating have become central to my diet because they do have "taste" :-) even if they are so "left field".  The last time I had Ovaltine was as a child - now it's become a staple source of energy, and not just before bed.  Pineapple juice or sparking lemon are now great "complements" to main meals (such a change from claret!).  And where would I be without rice pudding (cold, of course!), let alone "full fat" cola and cup-a-soups!

Coping with this change, particularly since it took 4 or 5 cycles to "kick in" and was co-incident with a lose in weight has been a challenge, but Diana has been magnificent in coaxing and goading me into a routine, keeping me at or above my daily calorie target, such that I have put back on some of the weight I'd lost.

These changes are of course expected cumulative consequences of the treatment and I count myself lucky that I do still enjoy some parts of my diet - not just these odd things, but very simple things like sparkling water (some therapies even make water hard to drink); it has been a deep challenge I now see I could not have understood before it happened.

Oh, and it remains true that Japanese green tea is the best drink in the world!

Running, running, running

Back from cycle six and a half, for the "odd week" infusion of the MAB - went so smoothly, I was out half an hour early!  And I'm delighted to say an "official" increase in weight of 3 kg!!!

Also met another blogger, whose positivity was truly infectious - you might like to check her out at awasandawillbe.blogspot.co.uk.

One of our daughters-in-law completed the London Marathon this weekend (way to go, M!) raising £2,500 for Child Bereavement UK, our daughter H is doing a "Race-for-Life" (Breast cancer) very soon, and our eldest, A, is already (honest!) in training for the Royal Parks half marathon (supporting Beating Bowel Cancer) in October... all receiving amazing sponsorship from the widest reaches of their worlds... it is incredible how the Great British Public react to the needs of others (for those of you overseas, check out "Comic Relief" and "Children in Need"!)

I am so proud of them, not only for running, but also because this is another example of "normal is good" - M was already enrolled in the London Marathon well before I fell ill, and H and A had both decided to run "anyway", my condition being more a direction finder on what to run for, rather than running per se.

One of the first things I said to them all, in hospital that monumental evening before Christmas was "normal course and speed..." - not only is it critical for me to have a sense of normal, in some ways it's even more important for those close to me to have even more "normalness" (while, of course recognising it's a different normality) - and I mean for them, not me.

Which is why I am just as proud of my middle son and daughter-in-law, whose #1 "normal" goal this year is to plan and execute a house move - putting just as much "normality" into that as running, running, running (which they do recreationally anyway!)

And Diana?  Running?  :-)  Sadly her back is not up for it, and anyway - who'd feed me up if she was out training?

A tough week, but with silver linings too

Went into cycle 6 (last Thursday) a little behind the curve - we know the Tinzaparin had already affected my tummy in the days before [edit: I'm told by those that know (the clinic!) that I am  probably mistaken, much more likely to be simple coincidence], and therefore before the side effects of the side effect drugs aggregated their impact on top; so hitting me a little harder than usual... and there's nothing worse than a man with a funny tummy... just ask Diana...

But knowing it's caused by the drugs and nothing else, and that it will wear off as they wear off is hugely important for our sense of well being - I'm delighted to say I'm pretty much through it now, back on a even keel and ready for the next "batch" tomorrow.  In fact, the clinic sort of expected this cumulative "nether regions challenge", and are likely to adjust the steroids accordingly next time around...  I so hope so!

Even keel, yes - but riding high in the water:  the one side effect of the side effect of the side effect control drugs (is that three !!!s?) is I've lost rather more weight than might be considered wise, so Diana's got me on a high everything regime...  and it's already paying dividends:  +2 lb in two days... wayhey!

Silver linings?  Friends!  The encouragement you automajically instil in me continues to keep us going - whether it be a chance conversation in the Post Office, a dinner party, or when a close colleague and deep friend of many years takes Eurostar from Brussels just to come and see me for 24 hours, it can do nothing but inspire...

Comment Alert!

(Just home from "cycle 6", which was as straightforward and pleasant as always.  Did manage to confirm my recent symptoms were caused by the Tinsaparin, but that they should abate for the next few days at least - the power of steroids!)

This post is to tell you I'd not quite got the set-up of this blog right:  it seems until now you have had to "register" to post a comment.  I hope this is now fixed - comment away!  But if this exposes any negative unknown unknowns(*), I may choose to moderate comments between your submission and it's appearance on the blog.  What's the (*) reference?  Donald Rumsfeld - he's one of my linguistic heroes!  And a known unknown?  Will internet 'bots swamp me with adverts?...

Side effects, but not of the Chemo

While my scan brought brilliant news, it did also show one fairly common effect of chemotherapy; a clot, in this case in my splenic vein.  No where near as worrying as a clot in the leg (DVT), but better-safe-than-sorry means for "several weeks" I need to inject a blood thinner into my tummy each day - and that's an experience...!

But it turns out the side effects of Tinzaparin are tiredness and tummy troubles, which have been somewhat annoying [edit: I now know it was more likely simple coincidence].  Still, it's only for a while, and in fact as I sit here now things do seem to have settled down.  

(And thank heavens for friends!  It is intriguing how good company lifts the spirit - last weekend was a great weekend of entertaining and being entertained; and we're now looking forward to visits from the continent!)

Reflection: of Patients

It may be stating the bloomin' obvious, but each of us have our own unique story.  What may not be quite so obvious is, as a group, there is an uncanny sense of togetherness as we instinctively recognise our stories are indeed unique, and how we relate to one another in a way that respects these differences.  

• Each person's narrative is accepted, simply, and with empathy or joy depending on their latest scan report, their reaction to the drugs, or simply their sense of wellbeing.

• And conversely news is given with obvious respect for the circumstances of the other; never overblown when good news, and simply, straightforwardly when not.

Such camaraderie, engendered by the attitude of all in the clinic, is not something you find every day...

Reflection: of Angels

Pick your favourite search engine, switch to "images" mode, and search for "cartoon equality justice".  All being well the first image will be a three picture cartoon, of three people trying to look over a wall, one tall, one average and one short.

Whether you agree with the labels, the way it distinguishes "equality" from "justice" (they work for me, although I might prefer "fairness" to "justice") is a brilliant way of summing up the care I and all my fellow patients are getting from the NHS and its Angels.

• Equality:  The processes and proceedures of the clinic, as I think we would all expect, must treat us all equally - we all get the same excellent service from the British NHS, without exception, who ever we are and whatever our need.
• Justice (or Fairness):  But the magic is then in the people of the NHS, who recognise we are all different, that some need more care and attention than others in order for us all to be able to "see over the fence".

(And I have to say, to avoid any doubt, that we all recogise without a moment's hesitation fairness means giving more to those who need more.)

Of Angels and Patients

Of Angels…

In therapy yesterday (just 3 hours this week, for Cetuximab) - and saw the chemo nurses prove they are Angels…  their computers went down, and they did not!  Yes, it clearly caused them problems (all chemo treatments need verification in real time), but did it affect the care they gave and their demeanour to us?  Not a jot.  OK, there were some delays, but only in the name of best practice.

And something else struck me.  There is, of course, a rigorous procedure they must follow with each and every one of us – the same basic steps, but always with specifics associated with each and every treatment.  For example, because I have Paddy (the Portacath), I need specific “preparation” that’s different to other devices, followed by particular “pre-meds” (different on odd Thursdays to even ones), then either one drug (even Thursdays) or multiple drugs with intermediate “flushing” (odd Thursdays), then finally a “flush” to leave Paddy in good shape for next time.

And everyone’s treatment follows the same formally defined procedure… except we’re not “treated the same”.

Every single one of us is treated uniquely.  The way each nurse interacts with us is wonder-fully different, so “right” for the way each of us “is”.  They seem instinctively able to blend the formality of a carefully controlled, potentially harmful treatment with an ease of presence that always fits the needs of the patient.  Truly angels!  Frazzled angels sometimes, but always angels.

…and of Patients

How different we are!  Some, maybe quite a few seem to have the sort of support network you’d hope for, supporters (family, friends, colleagues) “witnessing” their journey; which in some cases is heart-rendering.  We are the positive, cheery ones, who seem able to engage and “banter” with the nurses and each other, and (almost) always have someone with us throughout the session.  Some simply need to be quiet, coping in their own private way, usually with someone “close by” walking gently with them on their journey.  But it’s sobering to see others, and it’s not a few, who are always alone, who rely on Hospital Transport to ferry them in and out, and who appear to rely on their own wits and strength.  That’s tough – and the nurses know it; caring for those who need more, more.

Whether they take a “conspiratorial” approach, bantering with those who cope “mischievously”, a respectful style to those who need space, or an overtly caring manner to those suffering their disease, often alone, our nurses always seem to know how we are and what we need; while always making sure our treatment is exactly right.

"The Cranes have landed"

Until now, I had refrained from saying anything specific about the love, prayers, and thoughts so many people have generously and unconditionally given me.  There are so many of you and so many experiences that I have chosen not to refer to any one specifically.

But, and as a portent of today's good news, one of the most wondeful gifts I have ever received arrived in the post yesterday.

1000 (yes, one thousand) origami paper cranes, each no more than one and half inches long, have been folded by a very dear close friend in Japan over the last few weeks, threaded in a traditional manner onto strings, and sent to me...  and they "landed" here yesterday - bearing one wish, for my recovery.  Oh boy.

(As you may discover via wiki and your favourite search engine, it is an ancient Japanese legend that promises anyone who folds 1000 origami cranes will have a wish fulfilled...  and in this case, that wish is focused on me.)

Good News!

I am delighted to report "It's stable!"

Specifically, the official report on last week's CT scan says "Overall, the appearances are that of static disease", but there are other indicators that may even suggest it's reducing, if ever so slightly. 

For example my "CEA" number now seems to be falling, having been on the up in the early cycles of treatment (suggesting things were at that time growing slightly but are now waning), and the size of the larger tumors in my liver are slightly smaller than they were.

Still a long way to go (5 cycles down, 7 to go on the current schedule), but wow, we are fighting back!!!!