Friday, 30 July (04.15hrs)
Two weeks after having an OGD at the Endoscopy Unit of Frimley Park Hospital, and during yesterday’s last minute appointment with Mary Townsend I was told that I had cancer of the oesophagus. Blissfully ignorant of the role of Nurse Specialist, Upper GI Cancer Team, I had misguidedly pinned my hopes on the assumption that such devastating news would come straight from the surgeon at a forthcoming consultation. Therefore the first lesson learned is: No matter how apparently sound the logic, try not to second guess the outcome!
It is impossible to single out any one particular train of thought from the scrambled network currently occupying my mind and preventing me from getting back to sleep, but there again that’s not unusual in my experience: The difference being that my anxiety is more sharply focussed on one important subject rather than a myriad of no-urgent problems, and, surprisingly for once, I don’t feel the intense frustration resulting from the ongoing inability to draw a satisfactory conclusion from my unstructured deliberations.
I know that from now on the going gets really tough on a journey which has been lurking over the horizon for some considerable time. Over the course of recent years, undergoing various medical procedures and investigations, I had often tried to anticipate what my reaction would be to yesterday’s scenario and I am totally surprised by the calm that presently surrounds me. I guess it’s very much a lull before the storm; being in a state of shock before the reality of the situation sinks in. This paradoxical tranquility is fostered partly by both the amazing, flawless professionalism displayed by Mary in delivering this kick in the crotch so painlessly and Geraldine’s efforts to remain outwardly in control through her measured approach to difficulties. With that kind of support I feel that initially I am better able to cope with what lies ahead and therefore set out with the intention of making it as easy as I can for those loved ones close to me. Naturally the nagging doubt is that, with my history of mental illness, will I have the strength of mind to remain positive and see it through? Fortunately life’s experience has taught me that in times of real stress, as opposed to the vagaries and perceived panics brought about by the chemical imbalances of a bi-polar disorder, I can function more than adequately in the lead role.
No doubt later today I will start the process of going over the information imparted so far, and researching the documents and references given to me, in an attempt to begin to come to terms with what is in store and how best to break the news to the family. The first hurdle is the occasion of Ellen’s seventh birthday today so that will take some deft manoeuvring around the family gathering.
Steeling myself for the next bout of tests in order to determine the best way forward, nobody said it would be easy! At least the dawn is breaking with blue skies and sunshine so I can look forward to a pleasant walk with Chaka to start the day.
Geraldine woke up feeling it had all been a bad dream but in the cold light of day realised the nightmare was very real. (Weight: 16st 10lbs – 106kg)
Saturday, 31 July
Rudely awakened at dawn’s darkest hour again this morning made me realise I had to find a strategy to combat this tiresome occurrence. On this occasion it was evident that Geraldine was having a very disturbed sleep too and soon we were both awake whiling away the hours cuddling and chatting. It’s proving very difficult for her to verbalize her worst fears and we both realise that at this early juncture, and until the results of the next set of tests, all the speculations and suppositions about the future are pointless as nobody knows yet exactly what it is we are dealing with. But it still doesn’t stop all the ‘what if?’ thoughts even if there are no options or answers yet! The fear of the unknown is decidedly more difficult to cope with……or is it? After a cup of tea we did both eventually doze off again fitfully until a more reasonable hour in the morning.
Later in the day and reflecting on yesterday’s events, during the quieter moments of which there was just a hint of the ebb and flow of feelings of overwhelming fear and trepidation, it was obvious that some sort of project or occupation was going to be necessary in order to keep those unguarded and idle periods to a minimum. On the whole we managed to keep fairly busy all day and it passed successfully albeit still in somewhat of a trance like state of mind.
I started the day by reading the leaflet that Mary had given to us so that I could refresh my memory about the information she imparted during our appointment in preparation for relating any relevant content to those who would be told that day, and to assess my symptoms on a scale of 1-10. I purposely did not ‘google’ any more references.
After a walk with the dog and a visit to the in-laws we were still undecided about what to do regarding Ellen’s birthday but eventually made arrangements to meet just Jennie and the grandchildren for an evening meal at The White Hart, Moneyrow Green, after she had taken them to see Toy Story 3 at Maidenhead.
It all went surprisingly smoothly with both of us easily maintaining our composure (except as can be seen here during a game of Jenga) and thoroughly enjoying the evening. I fear that today’s meeting with Jennie to tell her the news will not be so easily achieved.
Tuesday, 3 August
Prompted by the receipt of an appointment letter from Frimley for a CT Scan at Aldershot on Monday 9 Aug, the buried thoughts of recent days were resurrected with a bit of a jolt: I was expecting to go for an Endoscopic Ultrasound first! Appears they are going straight to CT to determine whether the cancer has spread.
The relative tranquillity of the past few days is rapidly dissolving. I have been determined to ‘carry on regardless’ for as long as possible having persuaded myself there was absolutely nothing to fear, except fear of the unknown itself, until the results of the forthcoming tests.
Events during the intervening days had all passed with the expected consequences: Meeting Jennie and Andy at the Henley T&V regatta on Saturday to tell her the bad news naturally left her distraught and in a state of shock but at the same time resolute enough to provide me with common sense reassurance and filial support; Dave and Sheila’s farewell barbeque on Sunday and their reaction to the ludicrous present we bought them;
phoning Valerie reinforced my equilibrium, and embarking on the kitchen project with Gary kept me preoccupied. The only blip was phoning South Africa while in bed on Sunday to let my brother know. I found that especially difficult for some reason and the resulting flattening of my mood needed some stern recriminations and the urge to refocus on trivialities like how irritating this cough is getting, the mind numbing hours I was likely to spend in outpatient waiting rooms, the loss of my crowning glory of red hair as a result of therapy, the cost of hospital parking, and letting DWP know my change of circumstances etc.
Meeting friends out and about whilst walking Chaka provided an added bonus of knowing I had extra support and could call on them to look after him if needs be. Both Paul and Debbie, and Caroline volunteered to walk him if and when I wasn’t in a position to do so.
During one walk a newly emerged peacock butterfly landed on my shoulder and admiring its fresh colours I was reminded of both the beautiful and ugly extremes of nature. Because of the exhilarating effect this encounter with a wondrous creature had on me I dubbed it ‘Peacock: Panacea for Pain’ as it flew off carrying away all my troubles.
Having Gary around the house working on either his Canada Holiday Photobook or the redecorating of the kitchen (choosing between two has G’s full permission of course) is a boon and makes me realise how important it will be to remain as fully occupied with hobbies and projects in future.
Wednesday, 04 August
Another unwanted early arousal brought with it some of the darkest thoughts from out of the recesses and shadows of my mind. Triggered both by the deviation from the anticipated and expected pattern of ongoing tests and by Geraldine opening up for the first time yesterday after continuing to maintain that her coping strategy for the time being was, outwardly at least, to play the ostrich. Her outpourings were very much focussed on the agreements and plans made in talks with her boss which, in the circumstances, were extremely generous and understanding, and also on the reasoning behind pushing forward on the kitchen and other such projects. Other than the sacrosanct need for mutual support, verbalizing anything directly related to the cancer itself obviously still remains almost impossible for her and as a result we both jointly feign the stance that there is no point overtly worrying until more is revealed. I am trying to dismiss the thought that somehow we both have different levels of information and that she may have been burdened with advanced knowledge of a more serious and urgent situation. This train of though is endorsed by the fact that she has contrived to not once make an initial disclosure to either family or friends in my presence. There again there could be perfectly reasonable explanations for this centred on her own means of coping and desire to shield me from seeing just how upset and fearful she really is, rather than the notion of protecting me from the truth.
Is my mind beginning to play tricks and am I imagining that the physical discomfort is increasing slightly? I really cannot tell. Maybe the time has now come to actually do a bit more reading up on what this particular cancer is all about.
Tuesday, 10 August 2010
On Thursday I received a vague appointment letter, which I eventually discovered, from several calls to Frimley, was for the Endoscopic Ultrasound test, the days pass unremarkably having now accepted that the booking of ongoing tests depend on availability and also reassured Geraldine knows no more than I do. A quiet weekend followed the experience of Friday’s 9 hour solo child minding stint at Windsor. Once again the grandchildren were as good as gold for their granddad. Gary is still doing a good job on both the kitchen and his Photobook. Jennie and Andy are enjoying a holiday in Sardinia.
Yesterday’s CT scan at Aldershot went by routinely as a stepping stone on this journey – Not a milestone as no further information was ever likely to be available at this juncture. I have a further wait now until the Endoscopic Ultrasound on 17th August and presumably a follow up appointment to discuss the various results. My weight is holding steady at around 16st 10lbs and there is no appreciable change in any of the symptoms.
Saturday, 14 August (03.57)
I was not surprised to note the above, now very familiar, time when I eventually checked the clock and got up amidst one of those ‘darkest hours just before dawn’ episodes that represented the first real panic attack associated with my current situation. Both the pain in my gullet and that in my shoulders (not related to the cancer, but to arthritis surrounding old rugby injuries) seemed more chronically intense and suddenly the core within that false steel shell of my being turned to a mush of hopelessness. ‘I wasn’t going to be able to cope after all’ and ‘Would it all be over quicker and more traumatically than I had previously imagined’ kind of thoughts were accompanied by a vision of two parallel railway tracks along which the express train of pain was accelerating past the chugging locomotive and tender of investigations and results: Inevitably the first crashed and burned long before the latter reached its destination.
Before getting out of bed I managed to clear the debris and calm myself with the logical assumptions that the extra richness of the luxury fish pie which I had cooked and served for our supper guests and the very damp walk in the afternoon were respectively responsible for my increased discomfort in the areas I described. So I sit at my computer with a cup of tea waiting for the paracetamol to take effect in the hope of returning to bed for some more shuteye. Oh and just by the way it was Friday the 13th ;-)
Reflecting on the remainder of the past week it was on the whole very positive: Gary is doing a good job on the kitchen and in between had completed and ordered his Photobook of Canada as well as sorting out the turmoil of his life regarding the completion of a house sale and signing on for benefits: all with more than a little help from yours truly. Having him and his problems around the place is proving a welcome diversion and we are getting along together famously especially as he relishes all the grub that I’m dishing up. A very busy day yesterday started with a mad dash to Windsor caused by the shambolic last minute scheduling of Jennie’s washing machine repair man’s service visit which I agreed to cover while she is on holiday in Sardinia; two walks with Chaka, and Dave and Sheila’s evening visit.
In the early hours of Friday morning, on the pretext of staying up late to watch the Perseid Meteor Shower, I did finally muster up enough courage to refer to the Cancer Research website which, other than registering and posting on the forum, resulted in reaffirming that the immediate crux of the matter centres on determining the stage at which the development of the cancer has reached. And that’s a scary enough proposition in itself without any forward thinking about the various treatments (from time to time I do that regardless, along with deferring some serious forward planning) Oh for knowing that I have the luxury of taking it all one step at a time. But there again there’s really no alternative!