Tuesday, 30 November 2010

"It's Only a Winter's Tale"

As we prepare to return to the UK tomorrow after what has been a a distinctly winterly feel to our short sojourn in Spain: One day of brilliant sunshine followed by two days of constant, if somewhat warm, rain and now flash warnings of snow from Galacia in the north to more of the same just outside Alicante here in the south! It will be an interesting journey back home tomorrow if the reports I've read from friends on Facebook are to be believed about what is currently falling from the skies around Farnborough, Fleet and Farnham. I only hope that the ever increasing snowfall in the locality of home does not mean escaping from Spain just to face an arduous overland trip once back in Blighty. I would rather stay holed up here with Lyn and Graham and enjoy the Spanish life style (just checking I have enough Xeloda to tide me over):

Supper rural style with Sheila and family at Albox:

Passionatley Paella
From hob ......
.....to table

After tappas lunch at La Manga

PS (Thursday 02.00hrs) The latest update from Spain is that it all  began to go pear shaped when it was apparent from surfing the web that no Sleasy Jet, or much else for that matter, was taking off from Gatwick first thing Wednesday morning. Hence our aeroplane wouldn't be coming to Spain to collect us. Flight cancellation confirmed on check-in at Alicante and no seats (on EasyJet) to Gatwick available until 9th Dec!!! Returned to Laderas del Sol with Lyn and Graham to trawl internet for replacement flights asap and now finally booked on Iberia out of Alicante on Thursday lunchtime for flight to Heathrow via Madrid at a cost of £1000+ notes. (Other cheaper options included Flybe to Soton on 6th but the concensus overruled despite my protestations to stay put either at Torrevieja or Albox, and avoid heading back to some remote location and into ever more deteriorating weather conditions before tackling the even more daunting task of negotiating the UK traffic mayhem) What we are heading back into heaven only knows according to the ongoing reports of heavier snow falls and the inevitable travel disruption and chaos in the UK as usaul under these conditions!

Onwards and upwards into the valley of ...........as I don't have sufficient of my chemo to last out for a few days here in the sunshine and seeing what develops; even if things at home do get worse. But there again I came off Xeloda for a week or so not long ago to get some side effects under control so I am sure a quick call to the team in UK would have sanctioned a short 'holiday' under the circumstances........What a shame never mind............ and as usual when the well meaning cogniscenti get their heads togther I am considered uninformed and incapable of planning and decision making with an opion that counts for nowt!

Admittedly a bad decision on my part regarding this trip was not advising my travel insurance company of my change in circumstances, viz-a-viz the cancer, prior to embarking on what, after all, was only going to be 'just a quick trouble free breakaway in the EU armed with only my EHIC'. So the likelyhood of any compensation for the additional expenses incurred are probably fairly remote. So my advice to anyone else in the same boat is use common sense: After all, like it or loathe it, it's what we pay insurance premiums for and the ground rules are explicit.

On the bonus side it has meant an extra day, December 1st, in now once again sunny Spain (after two days of rain and cloud) and, once the re-arranged travel was sorted, we enjoyed the benefits with a relaxing lunch at Villa Martin and a trip to the seaside at La Horadada:

The idea of a quick evening dip in the pool on returning to Laderas del Sol was just a bridge too far!

In keeping with the continuing pattern of sleepless nights I sit here in the middle of the night contemplating tommorrow's rescheduled journey home and wish to thank everyone here and back in the UK for their invaluable help and support, without which this much needed breakaway would not have been possible. Special thanks to Gary for house and dog sitting whilst drinking my best wine, to Caroline for keeping Chaka company and well exercised on daily walks, to Pete and Paula, who, without any prompting, immediately rallied to rescue us from whatever remote outstation we find ourselves transported to on arrival back in blighty tomorrow, and to Dave Lavelle for voluntarily being on standby cavalry duties. It goes without saying how much we appreciate the unstinting hospitality of our hosts here in Spain, Lyn and Graham and in particular for ferrying us all the way to Albox so that we could enjoy an evening with Shiela, Emma, Adz, Roxy and Alfie.

The First Farewell!

Friday, 26 November 2010

I`m off to sunny Spain

Well judging from all accounts it's more likely to be the warm rain on the plain than wall to wall sunshine, but hey who cares it's bound to be a more pleasant location to recover from Wednesday's bout of chemo. And Torrevieja, where our friends Lyn and Graham live, tends to have it's own micro climate anyway. Just hope the snow forecast here for this weekend doesn't hit Gatwick before we leave early on Sunday morning. Planning to return on Wednesday afternoon but with any luck well be bound in by the UK weather by then!

I am bouncing back quite well from this cycle of chemo although there were a few minor hiccoughs along the way and finding a serviceable vein remaining in my left arm meant resorting to the right after two aborted failures. Once again I refrained from the 1 off high dose of anti-emetic and steroid so the bowel balancing act is becoming easier to juggle. Though the colder weather is making me highly susceptible to peripheral neuropathy symptoms and the first night I had pins and needles in my toes all the way through. Every thing else except the pain between my shoulder blades, which seems to be baffling everybody, is making waking an experience akin to having spent the night at the base of an All Black ruck. Interestingly it may not be as I thought associated with the spinal metastasic hot spot but is acknowledged to be a symptom of the main OC tumour:

* acid reflux (symptoms of acid reflux itself include heartburn, pain in chest / feeling sick /     bloating / belching / pain when drinking hot drinks).
* difficulty in swallowing and even regurgitation of food a few mins after swallowing
* unexplained weight loss
* pain in the form of pressure, or a burning sensation, as the food goes down the oesophagus
* hoarseness or a chronic cough
* vomiting
* pain between the shoulder blades"

A relief in some ways to now know this but upsetting in others; as I have been aware of such low key nagging pains in this area for a good many years but didn't pay it much attention putting it down to wear and tear or referred pain from all the throw overs from my days of  abusing my body on the rugby field for 20 years:  How much sooner could they have caught the coming of Goliath had I reacted differently????

Never the less all is well in my world at present despite having it re-affirmed at a clinic on Tuesday with research team that in my case the non-operable status is highly unlikely to change no matter how well I am doing and how postive the results of the forthcoming CT scan on 8th Dec show up. So palliative treatment continues either in the form of the current Real 3 trial, which will not necessarily be taken to its max 8 cycles if the balance of its effectiveness and usefulness is not matched by the current quality of life its providing me just now. The side effects may become cumulative and less tolerable and although Goliath seems to have temporarily surrendered (apart from increased pain between my shoulder blades*) it is inevitable that there will be a resurgence later on which will be closely monitored and treated as best possible. On this score I am told that once recovered from the current trial there is every possiblity that new trials at The Royal Marsden are in the offing for which I may meet the criteria: Let's hope so!

In the meantime recovery from cycle 4 proceeds with less effort this time round apart from combating the lower temperatures and the increasing back pain. Anne, my visiting chiropodist pampered my feet and now if we can race the snow to Gatwick and hop on the plane to Spain before we are all grounded life will be so much more pleasant for a few days.

I had a tingly outing in the cold with Bob and James of Mutts & Moggies and managed a few shots of their canine charges including a big old bruiser of a boxer called Lenny who came to blows with Chaka after forcing him into retaliation. the encounter with old Jasper was much more sedate.
Jasper and Chaka

PS (Sunday afternoon) - Just to let you know after leaving Yateley earlier today at 03.30 in temperatures of -5 degrees we had a trouble free journey out to Torrevieja and we our now enjoying a can of San Miguel and a glass of white Rioja on the sunbathed veranda of Lyn and Graham's villa 


Tuesday, 23 November 2010

Sit (uation) Rep (ort)

Yes folks it's that dreaded hour: 04.00 when spirits are at their lowest ebb, but I must tell you how I am feeling.

"I would rather have a rose from a garden of a friend
than to have the choicest flowers when my stay on earth must end.

I would rather have one single word of kindness said to me
than flattery around my grave when life has ceased to be.

So bring to me one flower, be it pink or white or red.

For I would rather have one bloom today
than a truck load when I am dead!"

Time is flying by so fast and it's hard to believe that my 3 weekly cycle of chemo is due again on Wednesday; just as life was panning out in the now familiar pattern of being on an even keel following a couple of weeks recuperation. We have decided to visit friends in Torrevieja, Spain for a few days after the infusion as being in the winter sunshine whilst suffering is better than hanging around the UK waiting for the snow to arrive!

I have a CT scan to look forward to on 8th December but I reckon the measurements of the relevant tumours are at least going to reflect how efficacious this course of chemo on the Real 3 trial is proving to be. I am feeling fitter, save for a few irritating side effects, than I have done in many a year and, allowing for the euphoria of a chemically induced high, I have plans, subject to my daughters guidance as a professional personal trainer, to complete a Sprint Triathlon event (a shortened version of the full course) at Dorney next year. So start saving your pennies in aid of sponsorship for The Fountain Centre at St Luke's, Guildford as I will be coming round shaking a collection bucket in  the form of an online donation if successful.  I have the added pleasure of attending the official opening of the refurbished Fountain Suite and sharing a sherry (me with a schooner rather than a pint...heaven forbid) and possibly a few words with Annabel Croft, the patron of the charity: It's a tough call guys, but I guess if I am forced to drink sherry, then a glimpse of her luscious locks and lovely long legs will be just reward! 

It's not all plain sailing at the moment as first and foremost Geraldine seems to be finding it harder and harder to deal with the situation and I am somewhat at loss to know what to do for the best: It would appear that my determination to stay positive and fully involved with life as it presents itself on a day to day basis is causing her concern, insecurity and feelings of worthlessness. Though unable to express her feelings openly, in fear, I suspect, of dampening my endeavours, it is plainly obvious that she is finding this journey even more arduous than I am: Something I feared from the outset and hoped, in avoiding such circumstances, to prioritise as a main objective. The curse is that if I don't feed off the support that my involvement outside the home is providing then I might succumb to feelings of defeat. Finding the balance to give Geraldine the same attention and support that she so richly deserves and not taking too much for granted, is proving difficult whilst her coping technique is to bury her head in the sand and make herself miserable and fatigued trying to hold down a full time, stressful job as well as having no respite at home. I try and reward all her efforts on my behalf  as best as I know how but sadly it seems I am falling way short of the target, especially when my frustration gets the better of me and she is innocently in the direct line of fire. As she so succinctly points out; there is no 'user manual' available to us, and all my encouragement to seek help from the various, willing and dispassionate array of outside resources falls on stony ground as far as I know.

The other error looming large in my mind, contrary to all the lessons learned about not focusing on second guessing the route ahead, is centered on the outcome of the forthcoming scan results and the very remote possibility that the equation has inherited the 'Op' factor: I am conscious of the number of cases that when all was seemingly stable, as I feel it is in my circumstances, that surgery has in fact opened up a whole can of worms not anticipated by those involved. I do trust my care team implicitly and must be guided by their knowledge and experience, but when it comes down to it cancer still bears too many unknowns for my liking especially when Goliath and his too numerous minions have been quietly and unnervingly, away for some time at an Al Qaeda training camp preparing for another onslaught.

Finally the pain between my shoulder blades, though not confirmed as associated with the spinal metastases in the 7th vertebra, is now giving cause for concern: Woke up this morning feeling like I had been in ruck against the All Blacks. Not, I hasten to add, for the first time in a long history of similar symptoms.

'Nuff said!

To reiterate I can't believe how quickly these cycles of 3 weeks are flying past. After this next (4th) bout of chemo later today I am booked in for a CT scan (8th Dec) to determine the progress and what effect the trial is having on the various tumours.

The gist from discussion at clinic yesterday with Dr Masoor and Sarah Oakes was that it is still highly unlikely that an 'Op' will ever be in the offing. There are several options available with the objective of giving me as much time as possible with the optimum quality of life: They will not necessarily keep me on Real 3 to the bitter end (6 months max/8 cycles) if the balance between effectiveness/data collection and the ever cumulative severity of the side effects is not favourable. All being well they may just monitor me until the inevitable resurgence kicks in sometime in the future or they may even decide that there are other new trials (namely at the Royal Marsden) for which I may meet the criteria.
No doubt all will be revealed at my forthcoming appointment with my oncologist running this trial around the time of my pre- Christmas infusion

"Deck the halls with tubes and trolley,
Fa la la la la, la la la la.
Tis the season to be jolly,
Fa la la la la, la la la la."

Still feeling incredibly fit and out and about with various fungi friends and dog walkers, whose support is invaluable, and having some rare successes, but way, way behind with the updating, reporting, photo editing and contacting cyber mates at MacMillan and on Cancer Research UK forum. My apologies to one and all.

Love and light to one and all

David [[[XXX]]]

PS I received a lovely home grown bloom from Rania my friend in Athens for which I am eternally grateful:

The Red Rose of Athens

Wednesday, 17 November 2010

A 'Shrooming we will go..........

A view over Minley Farm looking in the direction of Fleet and Farnham at about 4.30 as the sun set on another beautiful day spent with Caroline and Bob and a motley crew of canine buddies (it was a mixture of thick fog patches in the morning and bright sunshine by late afternoon), and  I wend my way home weary but very happy indeed; with plans to make wild mushroom soup  from all the various species of edible fungi collected over the past week.

Coming right up to date this morning, after the best night's sleep ever since this journey began and before I head off into the distance down the M4 to Sherston to see Ian (into the path of some pretty atrocious, wet and windy weather by all accounts), I will say that last night's supper was hugely successful: being unaware of my plans Geraldine had brought home a microwaveable ready-to-go curry; very thoughtful after our respective busy days. But I was still raring to go so spent the evening making the tastiest wild mushroom soup ever, using Cauliflower Fungus, Wood Blewits, Oyster Mushrooms and Winter (Trumpet)Chanterelles - garnished with sautéed Chanterelles and Wood Hedgehogs and roasted Walnuts and Hazel cobs. (We usually abhor tins of mushroom soup, likening them to heated up dish water, but this stuff was seriously tasty, tasty very, very tasty!)

Cauliflower Fungus

Winter (Trumpet)  Chanterelle

Wood Blewit
Half of the choice ingredients were supplied by Julie Campbell, Leader of the local ABFG Foray Group - 'Shrooms, (hence the title of todays' episode) with whom I sallied forth last Sunday morning on a very successful outing at Church Crookham. So thank you for your generosity and companionship lovely lady; even though, as can be seen from the next photo, you did reject my application to join the Snake Tongue Truffle Club (Cordyceps ophioglossoides to you too!)

[Glad to see that, at least today, Julie's 'collar and cuffs' do match, but suggest that some urgent personal grooming is required in the nether regions  ;O) ]

Despite some atrocious driving conditions on the M4, the trip to Sherston was a real pleasure and it was so good to see Ian and Annette in high spirits with that ol' twinkle in the eyes again. Ian's home grown, home cooked vegetable soup was as good and as filling as ever. Thank you both for the cracking Xmas present, which, as you hinted, Geraldine gave me permission to open on returning home - your winning smiles will be the first photo to get printed as a reminder that cancer is the only loser in our world, and that the warmth and happiness radiating around that huge rambling kitchen in the Crouch homestead means we will overcome whatever lays ahead. As long as Netty has hugs to spare and share I will be back soon to the Cotswolds for more of this tonic:

Sherston, Wiltshire (Crouch homestead central on skyline with two chimneys)

N.B. In my rush to get safely home and out of the fierce winds and driving rain I have lost yet another (3 now in quick succession) cell phone when I stopped at Membury Services to fill up with petrol. Heard a clunk as I got out the car and it fell from my pocket, but it did not register and after a cursory glance around the forecourt and under the car I abandoned any further searching not realising the significance and the implications. Consequently I was more concerned carrying out a frantic search of all my various pockets, in trousers, shirt and gilet, for the one and only credit card that would prevent me being marooned with an empty tank. I am retitling the following song "Incommunicado" C'est la vie!:

Sunday, 14 November 2010

The Colours of Autumn

Since reporting in during the week of my birthday the Autumn colours have been and gone and before uploading any more photos of the spectacular display this year I must add that it continues to be a colourful time for me too.

Minley Wood, Hampshire

Minley Wood, Hampshire
New Forest, Hampshire

By way of summarizing the current situation I am taking a shortcut and quoting a forum post I made today in response to Charles, a fellow traveller along the Real 3 trial trail:

"Hello Charles

Familiar responses I must say and I can sympathize with the swelling and bruising on the arm: I have chosen to stay with the left arm for all 3 of my infusions so far (use the right arm to do photo editing while they pump the toxic cocktail into me) and without doubt the damage caused by the first procedure was, and still is, the most severe. They do pick a new vein each time. I find having a heated blanket wrapped round the arm eases the passage of the 'molotov', but cannot escape the feeling of having shards of broken glass traveling the veins whenever they remove the cannula. But as you quite rightly say it all calms down with time. The pattern forming, as they seem to speed up the infusion time as my tolerance increases with each infusion, is that it takes me a good week to get back on an even keel. I am so thankful the weather is still, generally speaking, quite mild so the effects of Peripheral Neuropathy are much reduced. I have experienced very little nausea and on the advice of the research doctor even left out the 1 dose Ondansetron 'bomb' on this last occasion, so even the bowel movement balancing act was easier to manage. As the accumulation factor comes into play the side effects continue to multiply and increase in severity but like you I have found everything so far to be easily manageable with basic meds and a huge adjustment to lifestyle. The catch phrase of the day has to be: 'Be kind to yourself', as there is no need to suffer any more than is absolutely necessary; and in my own experience the protocols are infinitely flexible if anything becomes intolerable: Sort it out, sooner rather than later, and make adjustments accordingly.

I am looking forward to a further scans after the 4th cycle on the 24th and before the next in December when decisions about the way forward have to be taken, but to my mind the efficacy of the chemotherapy is all too evident and, touch wood, I am living an almost normal lifestyle, eating like a horse, keeping my weight stable at around 100kg and feeling fitter than I have done for a long, long time; notwithstanding undergoing palliative treatment for this cursed incurable disease. Hey, I even had  a grade 2 trim on the old barnet last week. (the researchers expected me to have lost it all after the first cycle). And, miraculously, the unrepairable (according to an ENT specialist) damage to the vocal chords has healed.

So here we are five an a half months down the road since it all kicked off, and we are at a place where dreams abound and hope reigns eternal!

By the way the location of my Caesar's Camp is near Aldershot in the Farnborough, Farnham and Fleet triangle, but having lived in Bracknell not too long ago I am familiar with that which you mention. I now live in Yateley and walk my dog (and foray and forage for fungi) in such places as Minley Wood, Hawley Wood, Yateley Common CP and Castle Bottom NNR all easily accessible from my front door. (Minley Mushketeers) Last nights dinner with friends saw me prepare Braised  Pheasant and Partridge with wild mushrooms (1/2 kilo of fresh picked Wood Blewits), shallots and bacon.

The sudden onset of the autumn colours, though late arriving  and relatively short lived, have been truly amazing this year and hopefully I will be uploading some spectacular photos to the next blog update

Go well Charles and if you fancy a mooch round my neck of the woods at some time get in touch and we'll organize an outing soon



Packing loads of activities into a busy schedule tends to be somewhat of a two edged sword with which to smite the ever reticent Goliath: My positive attitude remains consistent but one wonders just how long the body can sustain its composure on such an exhausting programme whilst surviving on so little sleep and undergoing the ravages of the disease and moreover the proscribed treatment regimen. On that train of thought the lyrics of a song by Bette Midler which I have recently had playing in the car come to mind:

"This ole house once knew his children
This ole house once knew his wife
This ole house was home and comfort
As they fought the storms of life
This old house once rang with laughter
This old house heard many shouts
Now he trembles in the darkness
When the lightnin' walks about

Ain't a-gonna need this house no longer
Ain't a-gonna need this house no more
Ain't got time to fix the shingles
Ain't got time to fix the floor
Ain't got time to oil the hinges
Nor to mend the window pane
Ain't a-gonna need this house no longer
He's a-gettin' ready to meet the saints

This ole house is a-gettin' shaky
This ole house is a-gettin' old
This ole house lets in the rain
This ole house lets in the cold
On his knees I'm gettin' chilly
But he feel no fear nor pain
'Cause he see an angel peekin'
Through a broken windowpane

This ole house is afraid of thunder
This ole house is afraid of storms
This ole house just groans and trembles
When the night wind flings its arms
This ole house is gettin' feeble
This old house is needin' paint
Just like him it's tuckered out
But he's a-gettin' ready to meet the saints

This ole house dog lies a-sleepin'
He don't know I'm gonna leave
Else he'd wake up by the fireplace
And he'd sit there and howl and grieve
But my huntin' days are over
Ain't gonna hunt the coon no more
Gabriel done brought in my chariot
When the wind blew down the door

Shakin' Stevens version of This Ole House (can't find a video of Bette):

Fortunately for me all such doubts are swept aside my the memories of letting the good times roll and recently those include a weekend away in the Southhampton Hilton with Geraldine which led to visting Exbury Gardens and The New Forest, a favourite haunt, quite literally exemplified by riding the Exbury Ghost Train,

and for not the least of reasons because of the existence of Willy's Well and the friendship we have forged with Moyra and Sheila. Chaka's loyalties are divided between their own dogs and the two Ridgeback bitches Dot and Ruby; owned by Dan, the landlord of The Three Tuns at Bransgore where we invaraibly dine whenever in the vicinity. Other highlights which made for a memorable birthday celebration trip were the Hampshire Fungus Group Exhibition and Foray at The Reptile Centre and a long leisurely Sunday lunch in The Victory at Hamble on the way home.

Homecoming meant many more long walks with the gang around various local environs and teaming up with Gary and doing the photography at the Crown and Cushion for their website which Gary has been commissioned to design (Watch this space!). This resulted in more supernatural happenings when not only capturing a bride and groom and a gorgeous bar maid in my viewfinder but also, unkowingly, the pub's ghost.

Click to see Ghost

I also took on a portraiture shoot for Dave Lavelle's daughters Steph and Jen with their offspring Mia, Scarlet, the twins and Ellis

Still enjoying another favourite pastime in cooking for friends and family has meant we have on three separate occasions entertained Gary and Lori for supper of Pork Stroganoff with 3 mustards; Lyn and Graham for a Sunday roast lunch,and most recently last night I prepared Braised Pheasant and Partridge with wild mushrooms, shallots and bacon for Ken and Christine.(Thanks for a wonderful pudding  - you are that chestnut tart Christine!)

And there is no way I can round off the week without mentioning the fanatastic performance of England's rugby team who put Australia to the sword, again, in an amazingly clinical  and spirited fashion in what I consider to be one of the finest matches ever played

However the Aussies may not give a XXXX for the wooden spoon, but I reckon they are the right bunch of candidates to be next  in line to volunteer for some more  floor washing exercises with Nicky and her rubber gloves?????????????

Hi Nicky. The ponytail and french maid 
fantasy may have been shattered, but I do
like the new sophisticated, chic hair cut!

Thursday, 11 November 2010

At the eleventh hour of the eleventh day of the eleventh month...

Sgt John Arthur Edington RAF, (Observer/Navigator) - Supply dropping (including mules) from Dakotas to the Chindits in Burma during WW2

Flt Lt J A Edington, RAF (Navigator/Bomb Aimer) - 101 Sqn RAF Finningley in the 1960s - Part of the 'V' Force nuclear deterrent, equipped with Avro Vulcans armed with the Blue Steel stand off weapon. (Dad - 5th  from leff 3rd row eventually finished his long and distinguished flying career as a Blue Steel Instructor at BCBS* RAF Lindholme)

 *Bomber Command Bombing School - or affectionately known as Billy Cotton's Band Show

"A Chip off the Old Block"
Senoir Under Ofiicer  D J Edington, RAF - Officer Cadet at The Royal Air Force College, Cranwell (Sword of Honour Winner, 1970)

And when will our egocentrical politicians learn the futility of following like sheep with little other objective than vested interest, and start spending the vast billions more wisely. I'd like the money spent on saving lives.

RIP brave warrriors!


PS David Gates wrote this for his father and just how apt it is for me is beyond words