Celebrating Ian's Life

Thank you to everyone who have sent their messages of support through all kinds of digital and analogue mediums since our final post, they really do mean a lot to us.

We will be holding Ian's funeral in private as a family but would like to invite people and the readers of this blog to a celebration of his life at a later date. This will be held on Friday 15^th May 2015 in Ian's village.

If you would like to attend the celebration and require more details, please email us at celebration@fircroft.f9.co.uk

…Second star to the right — and straight on ’til morning.

We are sad to report that Ian died peacefully late last night, Thursday 2^nd April, with Diana and his children by his side.

This will be the last post on this blog which meant so much to Ian. We'd like to take this opportunity to thank everyone from the bottom of our hearts for being with him, supporting him, and allowing him to realise what a difference he made to so many lives on his epic journey through this Universe.

For the final time with love,
iDASH

Calm, comfortable and an anglepoise

It is likely Ian will not move to the hospice as a result of the infection in the ward. We feel this is actually a blessing as it has now become such a peaceful place to be with the most wonderful caring nurses. An anglepoise gives us warmth, like the red one Ian cycled all over Bristol to buy for Diana for one misguided birthday present!

We have no timelines to work to as we now sit with Ian as he sleeps calmly and comfortably. We hope and pray it is not too long now as his family sit chatting celebrating a wonderful life together reminiscing about some amazing achievements he has accomplished.

With Love,
iDASH

Attitude is a little thing that makes a big difference

Winston Churchill couldn't have summarised these last few weeks any better. Firstly, we're pleased to report that Ian has a bed waiting for him in a local hospice, we're now waiting for an infection in the hospital ward (not in Ian!) to pass before he's allowed to go. Secondly, we'd like to reflect on those words from Winston.

Throughout Ian's battle against the strongest opponent of his life, he has continued to maintain a stoic positivity and optimism that only he can project. We hope you have seen this through his blog. His and our attitude has not wavered in these last few weeks as we have all come to terms with the realisation that the scientifically engineered tools used to fight against this strongest of opponents have now been replaced by the less scientifically, but equally engineered and effective tools of: love, faith, positivity, and down right determination.

This allows us as a family to experience some wonderful moments of clarity and obscurity in equal measure as we sit with Ian. It allows us to laugh and joke as Ian himself realises the chemical concoction in his brain has made him hallucinate the strangest of things. It allows us to have thoughtful, insightful and meaningful conversations covering all kinds of topics.

Maintaining this positive attitude has made, and continues to make, the biggest difference in this battle. We are truly fortunate to be led so inextricably in this by Ian.

With Love,
iDASH

Arrows of Time

We would first like to let the readers of Ian's Blog know that it will now be a collaboration of his family, with Ian maintaining his careful oversight.

Whilst Diana has been making a second home by Ian's bed supporting him with the love, care and attention only she can give, they have discovered how their perception of time has shifted. Or rather they have discovered new arrows of time in their Universe.

Ian's time is like being a constant centripetal force holding events and people around him with their own varying angular velocities. A bit like being the cog in the centre of a spinning (and bent) bicycle wheel. These events include a school bell being rung for meal times and the nurses coming round doing their regular checks (as well as, among other things, hallucinating ice cream vans!). The people spinning around Ian include family and friends who send their messages of love and support, as well as those who visit, which keep Ian going through the low and high velocities he perceives from the centre of his bicycle wheel.

Diana's time is a lot more one-dimensional, with an ever changing state of energy. Time is transient as she commutes daily between home and the hospital, but slows to almost a standstill when she is at Ian's side, sometimes with the presence of time itself vanishing. Anywhere else, time becomes more radiative, with the ebb and flow of (almost) normal life speeding up and slowing down time.

As you can hopefully infer from all that blabber, Ian is still in hospital being cared for by the wonderful people that make the NHS work. We are hoping to get him to a hospice next week or even get him home at the Manor House using a "care package" of a hospital bed coupled with frequent visits from Nurses - but as we all know, the arrow (or source) of time in the NHS is quantum (or uncertain)!!

With love,
iDASH

A change in the wind...

Hello all, this is Ian's children typing. 

We're sad to report Ian's journey has changed course, and he will be stopping treatment from now on. He's currently in hospital, having had fluid drained from his lungs and abdomen, awaiting a bed to become available at a local hospice so that he can be looked after more comfortably closer to home.

There is no prognosis at this time, with the fluid build up resulting from the progression of his disease and the treatment no longer being effective. We're told the fluid is likely to return, although we don't know how long it will be until it does. Ian continues to fight in the same positive spirit that we continue to admire him for.

Ian, Diana, and ourselves would like to take this opportunity to thank you all for your continued love, support, prayers, and thoughts. 

A, S, and H 

A challenging road

Well, so this is what they mean by long term chemotherapy. It's been a really challenging week. Diana's been marvelous as I've been shattered, almost like wearing a heavy blanket permanently holding me down, no matter how "enthusiastic" I might be to get up and get on. We're used to a low period early in the first week, but this time it's taken to today (Sunday) for the  blanket to slip of.

Still, we know Avastin is a powerful drug, with excellent results, so we have to hope it's doing its job and I can withstand these side effects for a while longer; although we hope to discuss any mitigation of these effects tomorrow in the clinic.

So it's critical for us to realise these *are* side effects, and - as far as we can know - not the cancer. My next scans are at the end of the month, when we will know if they are, or not.

Meanwhile I hope this better feeling stays with me till the next cycle begins.

The slower road

I'm pleased to say therapy went well on Thursday; the sun coming out over the Carousel just in time on Wednesday. But, maybe inevitably, the expected high over the weekend has been a little lower than before. Energy levels down (thankfully not mental - day spent doing village hall accounts!) and a sense of slowness.

And that set me thinking, as I added up and took away... Does it matter how quickly we live our lives?

In the old days, I'd hare off in the car, or train or plane "going places to do stuff", usually very enjoyable and definitely making a difference for fellow architects on their own career paths.

But what about the journey? Eyes forward, on the road or into a laptop, never really aware of the world I was passing through.

Now, living at an enforced slower pace, I can take the time to look left and right, taking in the scenery, the beautiful scenery of the English countryside (metaphor or otherwise!). Not just getting "somewhere", but taking pleasure in the "getting" bit.

So, yes "making a difference" often means "eyes forward" and "focus" working hard to achieve goals and objectives; but there's also room for a little "me time", taking in the world from all directions, and taking time to enjoy what we see.

3 of 11

No, I have no idea what it means either. But more of that later.

Sorry I've been away for ages; it's been a very challenging couple of weeks, with the side effects of chemotherapy knocking me for 6 as they failed to lift as they normally have done - the Carousel has turned slowly this time.

But these physical and emotional effects, while being tough to cope with, aren't as interesting as the psychological ones. These I also know well, all be it intermittently since they have tended to coincide with the short(er) low time; but unlike the physical and emotional stuff, I do not pretend to understand them!

2 in 1
How many "me"s are there? Two! At times, usually during that never-never time between sleep and wakefulness (at any time of the night!) "we" have to agree before "we" can do something/anything. And, more strangely, I also feel I have two of everything I really have only one of, and these also have to "agree" before I can do anything.  Most bizarre is the disorientation as "2 become 1", a little like those weird "Top of the Pops" or Dr Who special effects from the 70's / 80's!

3 of 11
This is really weird, and I have no idea what it means. But through the night, my chemo-driven dreams will crave "3 of 11", or "we need 3 of the 11" or "which 3 of the 11 is it?". I have no idea what it's 3 of, nor why 3 and 11 are "it".

If anyone has an idea, tell me!

It's been suggested they are chakras (Western tradition says there are 7 but eastern beliefs allow for many interpretations)... Hum... Or that they are "astral energies"(of which, I am told there are 10...), with the first 3 being "awake",  "asleep", and "out-of-body"... OK... Or that 11 is the number of people in a team...

Or is it just a random effect of the chemo?

(Diana thinks it's a partial memory of my "attraction" all those years ago to Star Trek's 7 of 9... but that's another story!)

Why do I blog?

We've just had a great weekend with all the family here, celebrating two birthdays (32 and 5). And, during a lovely evening's conversation, talk turned to my blog.

It seems the children all get a lot from it, and in particular (to my relief) all appreciated my recent thoughts on time.  But this triggered the question "why do I do it?"

When I started, this time last year, the answer was simple - keeping friends and family in touch with my progress,
as a means of saving you all "enquiring" as to how I am/was during those early chaotic days.  But since then it seems to have evolved into something more.

I have discovered it's turned out to be enormously therapeutic to write; something more than just a diary, its also a powerful tool for me to keep positive, marshalling my thoughts forwards and focusing on "life".

And something else struck me - might I be its most frequent reader? It seems to have the same value "on reflection" as it does "in the moment", specifically during these "low" steroid-less days immediately after treatment it reminds me they don't last forever; they do pass and life eventually returns to something like normal for a week or so. Just like myfitnesspal is a help in maintaining a good diet, so blogspot has become a powerful means of me helping me reflect on the good things in life, whatever it may throw at us.

I admit this reason was not intended or anticipated, but I've always been a great believer in the law of unforeseen consequences, although usually anticipating them to be "unhelpful". Such a pleasant surprise to find this one to be such a positive consequence!

Finally, and tightly tied into this unexpected benefit, please keep those comments coming, however you get them to me. Every one adds to the deep sense of support I get from this blog, whoever writes the words!

A postscript to time

(I was going to name this post "the last word on time" but that seemed somewhat final.)

Thank you all who responded so positively to my thoughts, I have to admit the concluding sentences were not in mind when I started it! But they work for me, as well as they seem to have for you.

It was my brother who made a very different but as insightful comment; he recalled a post from earlier last year, in which I reflected on the positivity (for me at least) of "counting up" (or not counting at all!).

And he perceptively noticed that my reflections on "powers of 10" had a hint of counting down. He was right, but I have to admit it was not intended.. And as he agrees, this doesn't fundamentally alter the central conclusion of living "now".

Is there a way of living now?  "making a difference" was/is my mantra. But Diana was inspired by Roman Kent, who spoke at the recent Auschwitz anniversary ceremony; where he called for an 11th commandment. “You should never be a bystander”.  A great philosophy that definitely makes a difference with a deep underlying message.

No news

On the 18th April 1930, the BBC decided there was nothing newsworthy worth reporting, so broadcast some piano music instead.

Sort of feels that way today, particularly since I'm listening to Chopin's 24 piano preludes, at the end of a very quiet week.

But maybe there is a little bit of news...

Down: Have had some challenges with tummy aches and pains that have been tough going from time to time, reducing my energy levels and opening up my emotional side; denying me that end-of-cycle fillip. Probably the muscles still healing from last year? I guess the Carousel ran a bit slow this time (seems a good metaphor given my last posting). A quiet time, flowing with the chemo, not fighting it.

Up: was in clinic for chemotherapy yesterday - and am pleased to say my vital signs were 'normal', including white and red cell count (red deficiency could have explained the tiredness, but I'm pleased it was not), and my liver function.

Up: out and about a bit more, including my first bit of physical work in months, helping Diana move a cubic meter of logs! So, combined with today's dose of steroids, the sun's come out and my Carousel horse is back up to speed.

And while I was in therapy, Diana popped out and bought me a new engine for my train set! And a lovely surprise it will be for our grandson!!

Steady as she goes...

Time is of the essence

(This post was triggered by two events. First, one of you rightly observed that my blog was often quite factual, and that they were missing "my hilltop", i.e. insights into "my world".

This coincided with me reflecting on how the last post-but-one was before the events of the weekend, while the one I have just published was after...  Hum...  before... and after...)

Once, before all this happened, my sense of time was very comfortable. I don't mean "what time is it?" I mean "what is time, and how do I relate to it?"

The answer? Maybe the same as yours: with some degree of indifference.  When I did occasionally think consciously about it, it was without regret or fear. Put simply - Time past: I can honesty say "none wasted". Time present: "using it well". Time future: "there's enough".

Time past: when I think about what I have done these last 56 years, it is with a real, clear sense of accomplishment, whether it be in my professional or personal lives; "making a difference" as Diana would put it. As for "time present", living here in this wonderful house in a truly vibrant village community, contributing my few talents was more rewarding than I could ever have imagined.

Time future? Oh boy.

Then, it was a vague sense of  "there's enough" (did you know there are roughly 10,000 nights in 30 years? That's the gap between me and Dad! Plenty of time yet!).

But now...

It's complicated.  10,000 nights is a distant impossible dream, even 100 sometimes feels beyond me. Let's split the (logarithmic!) difference and go for 1,000! Impossible? Not probable but a valid target none-the-less, even if it is so clearly finite.  And that fact is sometimes so tough to grasp, particularly when the treatment lays me low and another day goes by.

But whatever the number is, and it's hard not to have it in mind most of the time, the only way of "being" I know is to continue trying to make that difference, whatever the chemo and lesions throw at me and whatever that difference may be.

Put another way: while it's so tough to do,  I still go back to the beginning of this blog 12 months ago - "normal is good". Or as Captain Mainwaring would have said: "carry on!" Here's to all our futures!

A wonderful few days

A good full-of-life few days!

(this was written a couple of days ago, but I suffered writers block on the next post - pretend it's last Monday!)

My last therapy was on Wednesday last week because Thursday we were of for a night away in a lovely English country house hotel, having dinner with the couple who introduced us 36 years ago. And what a great evening! Good food, company, conversation - and accommodation(*)!

Then on Saturday, a real privilege - CST at home! So a real chance to reap the the benefits of the therapy, enjoying an hour's recovery afterwards.

And in amongst these, the pleasure of doing ordinary things such as work(!) and model making.

All of which set me thinking...

But first, that (*) from earlier:  as it happened, the delay in chemo meant we were away while I was on steroids, which we saw as a good thing - I would be more able to cope with the effects of the trip. And indeed I did feel good the whole time we were away... except I wasn't taking steroids!! Instead I was mistakenly taking something else, far less influential on my body - the power of the placebo! OK, I did wain rather, but once we spotted the mistake, I then had the pleasure of an extended period of support.

So to those thoughts - about time.

Back on track

I am delighted to be writing this from the therapy unit in my clinic!

Yes, my white cells are now behaving again - in fact they have gone OTT! This time last week they were "1.03", 0.5 below the treatment threshold. This week they are 9!! That's way out at the other end of the spectrum, well beyond the norm.

But no "complaints" - we're back on the Carousel, already feeling the benefits of the steroids!

Why do I say "back on the Carousel"? Because it's been an interesting week or so, something of a paradox that while my "numbers" have continued to be brilliant (neutrophils not withstanding), I've been a tad tired and listless. No immediate explanation, although we suspect a surfeit of iron; so we've agreed to cut the iron supplement down and see what happens. Such a juggling act!

But its not been a constant struggle - we had a brilliant "Burn's Night" last Saturday evening; with great food, super company and brilliant entertainment (Diana starred on her melodeon, and I even sang!). And now we're looking forward to a night away, tomorrow, having dinner with the couple who introduced us almost 36 years ago :-)

PS: today is a notable day: exactly a year since my first chemo session. Then I was so anxious, even frightened. Now I am among good friends - quite a few who I met that first day, and with whom I have a wonderful relationship.

Therapies: one postponed and another enjoyed.

Yesterday I should have been in therapy, but frustratingly my white blood cell count was down below a threshold  :-(  And that's a no-no for chemo.

Seems these things happen, and there's no way to predict what white cells might do. I wondered if it might be because of this cough (and intermittent sore throat) but it seems not. All the medics would say is chemo attacks white cells like everything else.   I'm therefore on an out-of-cycle course of the "white cell stimulating" injections, with a hope that the number will be good on Monday, enabling therapy to restart next Thursday.

And, talking of good numbers, the blood test that highlighted the white cell challenge also showed my CEA marker is down... again!

We're now in uncharted territory, nudging the 100's.  Maybe I need to look at the effect of this chemo regime on white cells as "just" collateral damage of its positive effect on the lesions? Who knows...  So long as it continues to work, I'll take anything.

But, yesterday I did have therapy - of the Bowen and CST kinds! Once I heard the news about  chemotherapy, we quickly decided to book a session with our physical therapist,  and a great session it was too.  Highly recommended!

It's smaller!

Yippee!
It's all worthwhile!

Just home after our consultation with the SIRT specialist... and learnt, for the first time since we began this journey over a year ago, that my liver's lesions have shrunk!

The MRI and CT scans have shown that the combination of SIRT and avastin/folfox has in the last few months reduced the tumors in my liver "to some degree",  although it is not possible to say which has done what.   But given the way my CEA number has been steadily dropping I'm inclined to believe the MAB/chemo has been more significant, and that the SIRT's impact has turned out to be less than we hoped/prayed for.

But, actually, that's not a bad thing per se, since SIRT was a one-off treatment with a wide variety of possible outcomes, whereas Chemo is an ongoing therapy and will hopefully continue to make a difference over the coming months. ("no reason why not")

And, to add to our joys, the scans showed no developments anywhere else - all our attention can be focused on my liver without worrying about lesions elsewhere.

So GOOD NEWS all round!

In "other news"; Monday was a great day (more brilliant CST),  but the days that followed have been tough, being the most difficult in the 2 week cycle - I've learnt to go with the  flow, take it easy and stick to light duties.  Returning strength today has been well timed!!  And I continue to put on weight... and cough.

The Carousel spins...

Sunshine and Showers

Whatever the weather outside (and it's vile), the last week has been "sunshine and showers" for us. The lurgy remained with us for a few more days, being particularly nasty to Diana, and its after effects are only slowly diminishing (such a frustrating cough!) - but the rain storm over the Carousel is clearing...

...to sunny spells.  I was delighted my blood test late last week declared me "clear"of virus and bugs, or at least well enough for treatment this week.  Sadly, there was no available chairs on Tuesday (as originally planned) so I have had to slip a full week, being infused on the "regular Thursday", albeit three weeks (not two) after the last treatment.  But, as per my last posting, those extra days off did prove useful, and I am still feeling really well (if it wasn't for this blasted cough!) - and quite active too, enjoying walking again - particularly to a close friend's for tea!

And just 6 days now to the review of my SIRT scans...

PS:
Several of you (mostly overseas!) had not heard of the lurgy or lurgi (more exactly "the dreaded lurgy") - a mythical deadly illness, first discovered in the 1950's during a radio comedy show called "The Goons" - and said not to have killed a single trombonist (the only cure is to play a brass instrument).  It is still a common phrase, refering to anything "nasty" like a bad cold or man-flu.

And "fillip" was new to some too - "a boost or stimulus"

Paying the piper. But good news too

I guess it was almost inevitable... The moment everyone left us on Sunday, Diana and I came down with the lurgy. It's laid Diana pretty low , me less so; but it's definitely not nice! Both now on antibiotics, and my treatment day's been postponed to early next week - the first time ever in 12 months, which I guess is quite remarkable.

But I am delighted to say one of our children has come back to help, both practically (shopping!) and emotionally: because I can't afford to get too physically close to Diana (our symptoms are not the same) means it's hard helping her - and not being able to touch her has been really tough to take. Needless to say, his presence has been a real filip, and we both seem to be on the mend at last.

While the last few days has been a challenge, before falling properly ill I did manage to get myself to hospital for my post-SERT scans (MRI and CT), so am still on track for the results in 2 weeks time.

And does every cloud have a silver lining? This one may - I now have 4 "extra"  days before more chemo. Assuming we continue to improve, I'm going to enjoy them! Particularly given the GREAT NEWS I had on Monday: almost all my "vital signs" are as good as they have been in 6 months! Red cells - a shade below your normal range! White cells - in the normal range! And best of all, my CEA number lower than it's been since May, and the third lowest ever!!

So maybe, just maybe, after a shaky start, 2015 will turn out to be a good year after all! HAPPY NEW YEAR!