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.

 

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...............



 

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.

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.

Caroline

Anna

Jeanette

David

 * 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"

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 Forestiére 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)

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:

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).