Wednesday, 29 September 2010

Today's Gonna Be Good Day

Today's Gonna Be Good Day ......... "Oh yes it is!"

After the previous 24 hours of increasing pain and discomfort I was beginning to over react to my perception of what the impact of all this was having on me: "Every facet of my life; my appetite, my routine, my activities, my hobbies, my pleasures, my plans, and every inch of my body, from the hair on my head to the soles of my feet, will gradually be invaded by the effects of the disease and it's treatment. How on earth am I going to cope with whatever the future may throw my way if I can't cope with the minor irritations that have presented so far?....... just as long as the emotional weaponry in the armoury stays serviceable and effective I am fighting hard to control the physical and practical aspects; but for how long and in face of what unknown horrors ahead?"

And all because of the frustration of having to cancel a foray with friends to The Vyne NT estate at Basingstoke yesterday morning. This was due to my now unblocked bowels having cleared with a vengeance several times since early that morning. The ensuing build up of painful wind throughout the day meant that I had very little respite and no chance to catch up on near complete loss of sleep from the previous night's tumour pains, which are proving to be steadily more persistent. Eventually, with overall control restored by use of several over the counter remedies, I did manage to sleep through the discomfort, waking only once briefly at midnight, until five o'clock. At which time it dawned on me that I felt rested and comfortable and if this was to be the pattern, albeit with variable degrees of severity, that good days would follow bad days then, compared to the indescribable anguish and risks to life which several friends, both real and cyber who are also suffering with various forms of cancer, are facing right now, who was I to complain and start feeling fragile!

I'll report back later.

P.S. 09.30 - Tesco home delivery service just arrived with necessary ingredients, so time to get out the Le Creuset casserole and russell up a large batch (16 portions according to the recipe) of Delia's Authentic Ragu Bolognese sauce - should be ready in four hours; just in time to meet Caroline for what looks like being a wet expedition with the dogs.

P.P.S. 20.30 - I can confirm it did indeed turn out to be a good day, though somewhat dull and grey weatherwise this afternoon, during a walk to Long Bottom Pool at Ceasar's Camp, Aldershot with the Anna (thanks for the piccie), Caroline, Jeanette and their canine charges. But when you have such great company the sunshine in their smiles banishes any gloom.

A motley mud splattered crew - Caroline, Jasper, me and Chaka (playing the green eyed monster)

Top photo taken on ridge under trees (centre horizon)
Later in the day, after collecting Geraldine from work and having the opportunity to thank her boss for making things that much easier for us through his understanding and co-operation, we had an early supper at The Forresters in Church Crookham before driving home tired but happy.

Monday, 27 September 2010

A Memorable Weekend

They say a picture paints a thousand words and as I am now too tired to type (just kidding!), I'll let the two albums from my Facebbook say it all:

Saturday's Album
Sunday's Album

It was a very special two days; and the the added bonus was that, after running 1/13th of The Windsor Half Marathon, I enjoyed a couple of pints of Timothy Taylor at The Jolly Farmer on Sunday evening, and the combinaton of the beer and the exercise has got my bowels moving again too - joy of joys! (as long as they don't overdo the favour)

Onwards and upwards.

Saturday, 25 September 2010

Jet Lagged

After resting up for a day and a half to shake off the 'jet lag' from my first flight on Air Chemo, and despite the lousy weather which at its worst had prevented an earlier outing yesterday morning, I met up with my good friend Caroline and her dogs to give Chaka a long walk in Minley Wood in the afternoon. It was so good to get out in the fresh, if dank air and see all the autumn colours exemplified by a profusion of different fungi starting to appear amongst the trees. The only reminder of my plight was that my effected fingers tingled on the cold barrel of my camera lens!
Sulphur Tuft
Fly Agaric
Cauliflower Fungus - (stuffing for trout)
Now awakened again in the early hours of this morning the implications of how much the pattern of my life is having to change and just what is going to be involved to be able to enjoy such simple pleasures (with the list of 'allowables' or 'no longer desirables' ever increasing) are becoming a little overwhelming. (I'm thinking of taking shares out in Lloyds pharmacy or just moving into my local branch permanently). Now matter how much support I know there is available from family, friends (real and virtual), the MDT, the research team, my local GP and surgery nurses, The Phyllis Tuckwell Hospice home care team and even the alternative therapists and consellers at The fountain Center drop-in at St Luke's, I am starkely reminded by those, unwanted, negative thoughts of the darkest hours that the one weak link in this chain is feellng desperately stress fractured at the moment and liable to snap at any time. I realised today too that bearing the brunt of that frustration was resting very heavily on my wife's shoulders as she calmly tried to ignore my outburst of short temper and divert me into some forward planning. It's too, too soon to see my resolve to protect those close to me becoming flaky and that scares me more than what I have to face personally .

Counting my blessings is not having the same effect as counting sheep and reminding myself that I am permiited to have these thoughts doesn't make them any easier to understand or cope with.

Chaka and Bailey in full harmony for the first time in 5 years

Rant ended and wry smile resumed by recalling a couple of funny and endearing images from yesterday: One I photographed of Chaka the dog and Bailey the cat sharing one bean bag bed today for the very first time in the five years they've lived together; so with them forming a mutual support group things can't be all bad. The other, I described to Caroline and as yet imaginary while I still have my hair, of me, when walking the dogs in the future, donning one of those bright ginger wigs with tartan bonnets that the Scottish rugby supporters wear to matches. The deal being she has to wear the equivalent Irish version of green wig, beard and Leprechaun hat!

Must be approaching time for my porridge and Capecitabine (though I used to prefer it with demerara sugar)

Catch you later folks as it looks like a fine morning for an early walk and there's a 4lb rainbow trout in the fridge that requires my culinary skills to put to the good a recipe supplied by cyber buddy Crystal if we are to lunch well when Jennie and the grandchildren arrive later for a visit.


P.S. I have always found poetry an emotive form of communication and this one, courtesy of Sharon from MacMillan, sums it up so eloquently for me:

Unwelcome caller...

This dreaded thing called cancer knocked upon our door one day.
We tried to say that we're not home, so sorry, go away!
But cancer wouldn't listen, uninvited in it came.
We knew that from that moment on, our lives were not the same.
Cancer then got settled, and made itself at home
It decided to take a look around and have a little roam.
"Please don't," we said, to no avail , it seemed it didn't hear
Took over every part of life, everything that we held dear.
"Get out!", we said. "Please go away, we wish we'd never met"
It seemed to laugh and say to us, "you ain't seen nothing yet!"
We knew that it was here to stay, there was only one thing to do,
"If we can't get rid," we said to it, "then we have to live with you!"
So we share our lives with cancer, and we've learnt to get along
Its not a guest that we would chose, but it's taught us to be strong.
And every day that passes, we gather friends along the way
We may have cancer in our lives, but we're living for today!!!

By Sharon xx

Thursday, 23 September 2010

Ahead on points after the first round

Weighing in at 106 kilos and in good time for an eight o'clock start for my first bout with that over-weight pansy in the blue corner with 'Chemo' emblazoned in pink sequins on his shorts; the other contender for the EOX heavyweight title, I climbed into the ring at St Luke's at 07.45 yesterday morning. After a trouble free journey and an almost unlimited choice of parking I was definitely looking favourite for the fight, but an early low punch rocked me back on my haunches when, after some preliminary sparring and the loss of a little blood, it was discovered that two of the ringside judges, namely 'research' and 'pharmacy' had forgotten to discuss the rules about allowing drugs in this particular contest and as a result mine were not available. The fight was postponed for a couple of hours while me and my cannula took refuge in the tranquility of the Fountain Centre charity dressing room. Unfortunately my confidence was tearfully undermined when browsing the bookshelf I spotted a tome entitled 'Dying Well'. After some counselling by one of the lovely volunteers, a rub down with a wet tissue and some refreshment in the shape of coffee and dunked ginger nuts I was back in the fray with even more determination to conquer. I guess that I had reached a watershed and that after weeks of training and building up my strength, both physically and mentally, to peak fitness the realisation of actual combat suddenly hit me: And that was the only thing I was going to let hit me for the rest of the day!

Back in my corner of the Chilworth Suite day ward, and with the gloves off, the referee, Leanne (Chemo Support Sister), noticed that my cannula was not fitted properly and quickly replaced it with another one further up my forearm before manually administering the first 'Epirubicin' jabs which reigned down for about half an hour. Undaunted I settled into a defensive stance for a two hour tirade of pumped punches of 'Oxaliplatin' which proved so lightweight that I was able to enjoy the total distraction of photo editing on my laptop with an interval when lunch was served. During the whole onslaught I felt none of the blows which the aggressor hinted might be coming my way and by 3 o'clock I was back in the safety of my corner with my lovely second, Natalie the trainee on my research team armed with a bag full of tablets and a schedule for continuing the tussle at home with some powerful anti-emetic and of course the 'X' Factor - 'Capecitabine'; apparently with a bigger ego than Simon Cowell!

So far since leaving St Lukes I have discovered the mild side effects of glancing blows in the form of a very tender left forearm up the vein where the drip was administered, which responded well to over the counter painkillers, and the tingling, needles and pins feeling in fingers (cue for a Searchers song which no doubt dates me) and mouth which rendered my celebratory pint of Bishops Finger on the way home a wee bit of a challenge owing to the susceptibility to cold and the fact that it tasted as if it had been laced with space dust.

Chaka was glad of our arrival home especially as I felt well enough to enable us take him for a long walk in Minley Wood where we discovered a cache of fresh Chanterelles which I prepared, in my favourite fashion (see Menus page) for Geraldine's supper. Unfortunately being somewhat exhausted by the day's events I only had the appetite for an Activia yogurt as basis for my tablet intake, and an early night, which, as you will realise reading the post time on this episode, was short lived. In all honesty I don't feel particularly poorly in the immediate aftermath but I suspect that may change over the next few days: Que sera,sera!

I had intended to put in a brief appearance at my daughter's 36th birthday bash just to let her know her ol' 'champ' was still in there scrapping like a good 'un, but that would have been a bridge too far and being there in spirit was sufficient.

Wednesday, 22 September 2010

Let Battle Commence

My treatment, by way of participating in the Real 3 clinical trial starts today in the relatively pleasant surroundings of St Luke's Cancer Centre, Guildford. Not so much 'D' day as EOX day! I am not in the mood to add a detailed update to this blog as since the relaxing weekend away the tempo has increased again and the information overload has addled my brain.

Hopefully later today, while resting after my first bout of chemotherapy,  I will get round to posting all the latest news and more photos from the New Forest (see Albums page).

Wishing "Happy Birthday" today to  my lovely daughter Jennie and so glad that, after our final preparation visit to Guildford, Geraldine and I enjoyed a celebratory lunch with you and your Mum; it meant the world to me.  It was also lovely collecting Ellen and William from school while you had your consultation with a specialist and how mightly relieved we are to know it's nothing too serious. Love from Dad XXX

Thursday, 16 September 2010

Gullet's Gutted but Willy's Well

Although the staging is more or less complete we are still in what I term the diagnostic phase in as much as later to day I pay my first visit to St Luke's Cancer Centre at Guildford for the purpose of meeting members of the Real 3 clinical trial team. This will involve discussions with Sarah Oakes, Research Sister, and one of the research doctors. There will also be blood tests, ECG and a history questionnaire to negotiate as well as another CT scan: All of which will determine my suitability in matching the criteria necessary for participating in the trial. Having considered all the implications I have opted for this route because in my view it satisfies at least three of the most important priorities: Firstly my acknowledement of and my agreement with the advice of the MDT that this is the best option for me as opposed to a standard course of chemotherapy using a slighty different combination of drugs. The possible cocktail of side effects is more or less the same either way, the outcome is as equally unpredictable, but I anticipate that the care, attention and monitoring will be second-to-none. Secondly my willing acceptance allows me to maintain the positive attitude necessary to uphold the initial committment I made to myself to shield my loved ones from as much anguish as possible. This was the first thought that entered my head when told I had cancer and it drives my determination to be strong. And thirdly if participation in the trial proves in the slightest way beneficial to future generations of cancer patients then my journey will have not be in vain, so finally there is a useful purpose to whatever remains of my life.

With this episode over Geraldine and I are heading down to Willy's Well, our favourite getaway at Bashley in the New Forest, for a much needed break from the traumas of the last few weeks. From our previous experience of the fellowship of the people and our appreciation of the beautiful countryside it is hoped we can recharge our batteries in preparation for the arduous task ahead.


Tuesday, 14 September 2010

Thought For The Day

Giving thought to the question '.....can anything ever really prepare us for how the mind works when diagnosed with cancer' I am simply going to quote the response I posted earlier today on the Cancer Research UK forum:

"My thoughts on a subject very pertinent to what's going on in my head at the moment, and whilst realising that I am in danger of overstating the obvious, are that nobody really knows how it will affect one mind as opposed to the next. With so little personal experience, in view of the relatively short time I have been in this situation, I find that the main benefit gleaned from reading and hearing about the experiences of others in a similar situation is realising that, no matter for what all the leaflets and professional advice prepare you, there will always be the gut wrenching extraordinary and unexpected occurrences along any individual journey. Knowing that you are not alone in this general respect serves to lessen the anxiety caused by such eventualities regardless of whether or not they are positive or negative.

The recounting of the emotional highs and lows experienced by Shents and others endorses my current feelings that, paradoxically, since learning about what I now know to be my incurable oesophageal cancer I appear to have been on an artifical high; taking everything in my stride, staying strong for those dear to me and, to an uncharacteristic OTT degree, living life to the full. A deliberate coping strategy or my mind taking control to mask out the reality? My nearest and dearest and I are aware that I may well need some counselling to address that question in order to prevent me crashing back down to earth sooner or later. Also in this respect my wife feels it may be useful talking to someone outside the cancer zone.

Approaching my possible participation on a trial and needing to stay on an even keel to face it I fear that I am rapidly becoming overwhelmed by the information overload and all these peripheral considerations. The situation is complicated by the fact that though still able to take advantage of a healthy appetite I am finding it increasingly difficult to actually talk: A bit of a handicap when contemplating talking therapies."

Answers on a post card please...............


Monday, 13 September 2010

Wicked Weekend

Now before you all get too excited I am using the the alliterative adjective 'wicked' in its modern parlance of 'cool' rather than 'debauched', so sit back from the edge of your seats, curb the lascivious enthusiasm, settle down and I will explain.

After a somewhat hectic week and feeling a little jaded I was looking forward to a long lie-in on Saturday morning to view the last of this season's Tri Nations rugby matches between Australia and New Zealand. Naturally you can always trust a kid brother to scupper your plans and sure enough on waking up every phone in the house had a message requesting me to phone Sarah, my niece, in London. Wondering what the panic was I duly obliged and was greeted by the sound of Mike's voice offering to buy me lunch. Not that remarkable you may be thinking, but, considering that fifteen hours prior to that he was at home in Johannesburg, you can understand my surprise and delight at his unexpected arrival in the UK on a fleeting business trip. We arranged to meet for lunch at The Thames Court, Shepperton where we spent a leisurely afternoon catching up on all the family news over a few beers, a bottle of Chenin Blanc and good meal.

Yours truly, Sarah and Mike

As Mike was departing for Paris on Sunday, Geraldine and I rounded off the weekend by celebrating her brother Tony's birthday at our local, The Crown and Cushion, Minley: 'Go on then, if you insist, I think I can managed one more pint of Bishop's Finger!'

Gary, Chaka, Cheryl, Geraldine, Tony and Max
Now, just in case they think I'm carrying out my own treatment by drowning the tumours in alcohol, I really do need some peace and quiet before the next bout of scans and tests to determine my suitability for the trial.

Thursday, 9 September 2010

Awaiting Trial

The picture was taken on Wednesday at The Belvedere Arms, Sunninghill during lunch with my wife and daughter after my appointment with Dr Middleton, the oncology consultant. The pained smile reflects the fact that my esteemed crowning glory (glowing golden in the sunlight, above) had potentially just been given its marching orders. The explanation rests in this summary of my current situation following the latest news revealed earlier in the day by the good doctor and Mary Townsend, the Nurse Specilaist, who, prior to my appointment and inbetween her ward round and clinic, kindly managed to squeeze me in for a long chat so that I could run a few things past her.

So what is the current state of play? 

The long and the short of it, having now had the opportunity to discuss my situation at length with three members of the MDT, is that Goliath* is a Stage 4 cancer consisting of a T3 tumour of approx 10cm in the lower end of the oesophagus (from 35-44cm). The cancer has spread to nearby lymph nodes in the form of small peritumoural nodal disease, and to a larger (approx 19mm) node in the hepatogastric ligament (between the liver and stomach) . There is also an infected node in the thoracic inlet (in the region of my neck). It is also staged as M1 because of secondary (metastatic) cancer in the L3 vertebrae of my lower (lumbar) spine and also a suspicion of metastases in my liver and lungs.

Because the nodal disease in the thoracic inlet is inoperable there is no curative treatment available and so palliative chemotherapy is the option open to me as the best way forward.

According to Dr Middleton the nature of the primary tumour and the node in the hepatogastric ligament give good indications that, subject to a further CT scan and tests, I may well meet the criteria for inclusion on the Real 3** research trial at St Lukes Cancer Centre, Guildford. Dr Middleton has outlined what this would involve and I am very amenable to the idea; despite the fact I will lose my hair as the result of a known side effect of epirubicin. Other considerations in this respect include diarrhea, (I may live to rue the day I said this, but in view of how all this started out,a change is as good as a rest as far as I'm concerned - see anecdotes), PPE, which effects the susceptability to cold in palms of the hands (never been known to drink cold ale anyway) and soles of the feet, and angina.

So it's back down into the tube (the one where the workers aren't striking) for another CT scan before the final decision is made. I appreciate the fact that all three main advisors are in the same team and are all singing from the same song sheet but I detect no discordant notes and trust their harmonised judgement implicitly. Hence at this juncture I feel totally comfortable with disregarding any thoughts about a second opinion; a point of view endorsed during a call to a Macmillan nursing advisor.

I have to admit that incurable was not where I wanted to be after this time but it could be a damned sight worse. If I am accepted for the research trial then I will have the best of a bum deal. And at least, on the basis of a marked disinterest amongst the professionals, I have shaken off the gremlin of what I envisioned to be the consequences of the secondary tumour in my spine which had me on the verge of booking a ticket to Switzerland on Air Dignitas! 

So though the trial is yet to start, I'm relatively happy with the sentence. 

On a lighter note, today at Fleet Pond I managed to persuade some of my dog walking compatriots that a quick adrenalin rush from a spin on a makeshift tree swing would do us all a world of good: I have no intention of growing old gracefully.



 * How I inadvertently came to dubbing my adversary with this most appropriate of names is recounted in the anecdote pages.
** "A randomised open-labelled multicentre trial of the efficacy of epirubicin, oxaliplatin and capecitabine (EOX) with or without panitumumab in previously untreated advanced oesophago-gastric cancer"

Monday, 6 September 2010

David and Goliath

After a bit of an up and down weekend I had to laugh this morning when the post arrived with a copy of a letter from my Consultant Surgeon to my doctor confirming the details of his intial findings. Bearing in mind my giant stature, and that Carole's recent references to the relative sizes of the combatants in this fight had brought to mind a certain bible story, I was amused to read the following typo: "His subsequent US showed a tumour from 35-44cm....". Would that be length, width or girth? So having now re-christened my tumour 'Goliath', this David is up for it!

On a serious note I am still dwelling on the latest news about the secondary outbreaks in my neck and spine and finding it very difficult to cope with that setback. I know after tomorrow's MDT meeting I will have a clearer picture but just at the moment the future's not looking to bright from where I'm sitting. On Saturday I found solace from a pleasant outing with Geraldine and our friends Dave, Sheila and family along the Thames Path between Chertsey Bridge and Shepperton Lock, which included lunch at The Thames Court. Despite almost total hoarseness I managed Lobster bisque, Char Grilled Chicken ForestiƩre and Lemon and Blueberry jelly and ice cream washed down with 3 pints of Brains IPA; so that has to be a big, big bonus. And while I have the appetite and the ability to swallow I'm determined to make the most of it!

Sunday's mood was a bit more subdued and I spent nearly all day in bed watching various rugby matches with somewhat muted enthusiasm before getting up for supper and finally crashing out again just before Andy Murray did the same thing at the US Open. Not a pattern to be repeated too often by either of us it is hoped.

River Thames below Shepperton Lock - 4 September 2010

 (Weight: 16st 3lbs/103kg)

Saturday, 4 September 2010

Fight fair you *******!

I never expected this war to be anything other than dirty but yesterday's news made me feel like someone had just lobbed me a primed hand grenade. There was an element of the 'good news, bad news' in what my consultant had to tell me: There was nothing significant regarding the lungs - hooray, but the "spanner in the works" revealed by the PET scan were incursions into the neck and spine - boo, bloody boo! Two further explosions from the next salvo - "inoperable" and "incurable" - left me reeling from shell shock; my blank mind desperately trying to refocus on the previous day's sunny  image. So, after beating a hasty retreat into numbness, where do we go from here? There wll be a meeting of the Multi-disciplinary Team (MDT) on Tuesday morning after which, having gone over all the data from the scans, I can expect a phone call from the Clinical Nurse Specialist about their deliberations. In approximately 2-3 weeks I should be into the sytem for chemo-. There was also mention of the possiblity of a trial. My team is headed up by my consultant and the oncologist who have specilaised together in this field for over 13 years so I feel the troops will be well lead. But from my own perspective the oesophageal cancer has taken a back seat to the new kid on the block and all the frightening implications in the area around the spine. And there was me foolishly thinking I had the backbone to withstand anything they threw my way! I need yet another set of questions answered and quickly.

In the meantime, having looked at the ominous black specs on the printout of the PET scan and compared  them with the dust marks I see sometimes when digitally editing my photos, I reckon all my problems would be solved with a quick application of the clone brush in Photoshop. Unfortunately I didn't notice a Creative Suite qualification on Mr Singh's CV - you just can't get the staff these days!

I think it's time for a long weekend away in Scotland to get away from it all:

Thursday, 2 September 2010

Oh it's such a perfect day,.........

.......I'm glad I spent it with you

Ellen and Jennie
No matter what the surgeon has to tell me tomorrow this will be the picture in my mind

On the eve of my next appointment with my consultant to discuss the results of last Thursday's PET scan, and  coincidentally with Barak Obama announcing the withdrawal of all combat troops from Iraq, my enemy has conversley stepped up the offensive in our battle: Over the past few days the discomfort of the dysphagia has presented a distinct sea change in its nature by becoming much less localised, spreading downwards more intensely with associated nausea, and what's more increasingly resistant to the efficacy of the doses of paracetamol. In my ignorance of knowing what to expect from these developments, this now chronic reminder day and night gave rise to a minor panic attack. My two pronged attempts to contact the hospital, in order to discuss both these concerns and the matter of my follow up appointment, initially resulted in finding out that reinforcements had either already withdrawn or were about to. Mary Townsend, Nurse Specialist, is on annual leave until 6 September and Gill, the consultant's secretary was also about to depart for a month but did inform me that the scan results had not materialised yet and to phone her temporary replacement on a daily basis. The chances of seeing Mr Singh this week were begining to look pretty slim and even more so when messages left on answer machines were unacknowledged. Finally persistence paid off and this morning I managed to speak to the chief surgeons's secretary who advised me that the results had arrived on Mr Singh's desk and my best bet was to avail myself of a vacant 11.30 slot during his Friday clinic in out patients at Frimley Park. I win again (this skirmish at least)!
With this news safely tucked under my bandolier, and after giving Chaka a good run for his money at Tweseldown with my dog walking buddy Caroline and her charges,

I headed for Windsor for lunch with my daughter Jennie and the grandchildren. In the warm bright sunshine of the afternoon we took Ellen and her bike to The Great Park where eventually, as the top photo shows, the trials and tribulations evaporated and I was ready to face the next onslaught with girded loins (well at least my knees wouldn't be knocking).