Tuesday 27th February 2007. Jill’s stability continued into today with a well re-established appetite and desire for Ribena and various liquids obviously to make up for dehydration. I took the oppportunity to get a mini shop in though it is time to go somewhere else other than ASDA, sick looking at the place. Jill got up in the afternoon determined to cling to routine and Susan O’D called by with a welcome chat with Jill and a magnificent orchid to add to the ‘flower shop’ atmosphere. Now it is time for me to have hay fever in the winter and according to one unsolicited caller a free hearing aid test...tell me about it! I took the opportunity to grab 40 winks which helped a lot and after the usual video calls from all round the day ended well.
Continuing Monday 26th February 2007. The day started early at 0400 with Jill being ill and continued right through until around 1430 this afternoon. This was a very unpleasant period for Jill but as I viewed the declining situation with concern I called in support. It was clear the sickness suppressing pharmaceuticals were not working. Lesley our District Nurse in conjunction with the specialist nurse at the C unit was entirely supportive and promptly removed another prescription log jam at the Doctors who were being pedantic as usual. Lesley came by later just as stability was being re-established and I had a complete briefing session about further support that is available including minders while I have a breather now and again.
Hillary & Geoff called by..happy birthday H... and Jill as usual had a prezzie arranged previously by the front door.
Barbara W of salmon mousse fame, our neighbout, popped in with some home made soup. This helped to restart Jill on food retention and was thoughtful and helpful.
Donal(US) , Deb & N, and Rachel with a slightly upset Charlotte(US) all video called for a happy brief chat and then it was back to work.
By late evening with the support of the specialists we seem to have Jill condition stabilised and she was retaining food and relaxing somwhat after rather a crises strewn day.I am sure that this type of crisis is to be expected and probably cyclical in nature after each treatment but after the magnificent support we have had we are now right back on top of the situation.
Monday Morning 26th February 2007. On Saturday Adrienne C came by with a stunning lemon cake which is well squirrelled away as a morale booster! Susan PH took the time off from her holiday to call to see how things were. It is kind to know someone is thinking about Jill far away and most particularly while on hols.We wish them well...
Michael & Helen A arrived for a long put off visit to discuss the fortunes of ManU with their co-super fan Jill. M&H have had heavy colds and it is requirement during the C treatment that Jill is not unnessarily exposed to any form of infection no matter how trivial.
Sunday morning Fred, Susan, and Hannah came by with hot X buns and a gossip and departed shortly after with Deb & Nicholas a short time behind.
D&N have been here since Thursday and Jill and I decided it was time they both went home because she has a husband and another family to look after. Deb left us in fine shape and worked tirelessly to ensure every corner was tended to. It allowed me time to ‘standdown’ a little and re focus on other pressing issues.
The old familiar knock came to the back door and there was Colin H the Golden Harp’s long standing First Mate. Colin has been family for ever. It was good to talk about old times and we covered much ground but there remains much more to talk about. We wandered about the workshop the scene of many constructive adventures in the production of the Golden Harp last heard of somewhere up in the Clyde...or should that be on the Clyde!
A welcome email came in from Janet & Georges R in Switzerland and they will be added to our growing thank you list...
Over night Sunday/Monday it has become clear that the treatment is starting to kick in but the District Nursing System have visited and are on call in addition to the specialist support at the hospital.So we are well supported in this respect.
Friday 23rd February 2007. This morning we had an appointment at RPH for the ENT department to look at Jill’s voice box. Ahead of our appointed time we saw the Consultant who carried out a LA on Jill’s throat and proceeded to insert another endoscope. After a brief but thorough examination the specialist reported that Jill's voice box is a little bruised from the past endoscophy but functioning perfectly. So this started the day well. We were in and out in a truly remarkable 20 minutes.
After this morning's good news Jill went off in good spirits with Deb and Nicholas to spoil him with gifts of clothes and love. Perhaps the thought might have been that it may well be her last opportunity. Very nervous and filled with old wives tales no doubt, things however went well with, at this stage, no immediate adverse reaction. It is a splendid place well administered with a well practiced regime. I took comprehensive notes for my education to ensure I miss no vital point for observation or action and I have all the drugs and support booklet records as well with emergency contact points etc.........so far so good. Now to the detail…
Today at 1500 we received our comprehensive brief and treatment began with IV injected anti sickness drugs followed by 30 minutes of IV Gemcitabine followed by flushing with saline solution and then 1 hour of IV of Carboplatin clearly the heavyweight puncher in this attack also followed by saline flushing.
They came from all walks of life in the open area treatment room with all the services including sandwiches coffees and teas to hand as each sat in a comfortable armchair hooked up to their individual pump mechanism. The air of tranquility was all pervasive and clearly the nervousness drained away.
Later we received a back up visit from a care specialist accompanied by the drug support regime to be followed over the next 3 days, mostly anti sickness pills, though there is little sign of reaction at the moment.
I had pause to think that all these cancer treating drugs are cytotoxic(directly toxic to all living cells) and would if spilled require the full attendance of the Fire Service suitably equipped. Indeed I added the new sign to the latest edition (November 06) of the Symbol Seeker though I noticed not a single sign announcing their presence in the area…….soon to be corrected.
Jill’s white cell blood count may fall but this is picked up at each pretreatment blood test 24 hours before each session. It is very early days but I have a feeling things will be all right for the moment. However as the bio battle breaks out in earnest things may be different but Jill’s morale is encouraged by her old colleagues call just now from Lanzarote. Truly remarkable that people should care so much and think about Jill so far away and we are eternally grateful.
So, like many others, we are treading very carefully into a minefield on our way to the vale of hope...
Thursday 22nd February 2007. Victoria and Andrew K came by to light up our morning. Old friends are best and certainly Andrew is looking older by the day and Vicki not a day older...
Spoke to my old boat building friend Colin H . Colin is simply family and always will be. His shock and concern for Jill was the Colin we know. It was mighty good to talk about the many years we spent together on the Golden Harp and recalling family and friends and where are they now....all to be continued ...
Today came news from the NHS Jill is due at ENT at 1000hrs tomorrow to see what if anything can be done about the voice and then back again at 1500hrs to the Ribblesdale Cancer Suite to let battle commence...
Deb and Nicholas arrived to prop up the forces of care for tomorrow and the weekend and they are more than welcome...semper fidelis...or perhaps pro deo semper pro et al...
We had a video conference between Charlotte and Nicholas to see who could chew off the most keyboard keys and cause the most mayhem in the least amount of time...it was a draw....this time! A breath of youth and a breath of promise to come...
Wednesday 21st February 2007. Michael the Pirate rang and guided me through the complexities of configuring a wireless computer router I had obtained, (the fourth in a week-long tedious story resolved by a kindly young manager at CPC), -and then it was up and running.
This morning our doctor rang to re-establish contact and turned up at 1230hrs. I left Jill to her ministrations while I dashed out to the Post Office to scoot off some essential mail and to sell a few books.
Seems, as we know, that the pain management has to be readjusted upwards because as the doctor said “ no one should be in pain these days”. This increase has of course sinister implications and the trend will continue as the ‘beast’ progresses unless checked by the commencement of chemo on Friday. I set off immediately with the prescriptions and returned with a very heavy bag of ‘goodies’.I suppose in this respect the NHS works and provides us with expensive drugs we have in any event payed for long ago.
Then its back to balancing the other books which have been in disarray.With the stroke of a key every 'unbalance' can be reconciled, isn’t accounting like this easy!
Later we ambled off to ASDA the supermarket and because the C-in-C was in charge got all the labels right this time plus a few extras of Jill’s favourites like creme brule, wonder where I can get that in bulk around here?
First came Auntie Kath's magnificient flowers and a short time later a call from Auntie K herself. Auntie K was a Leading Firewoman attached to a Fire Column in London during WWII. A person of living history. Unfortunately this has left its mark as it has with me, hearing loss.So we tend to communicate using Nato phonetics with lots of Rogers and wilco followed by affirmative and negative. Sometimes it all goes adrift with me answering questions posed two questions ago or perhaps it is two questions behind. Sync is definitely a problem for us both but atleast I can try to lip read Jill's answers on my behalf, or is it to Kath. Near the end of the 'conversation' Kath finally concluded it was me she was talking to not Jill though by this time Jill had gone to the toilet to change her underwear.There has to be a technical answer to all this for us both.This was definitely the deaf and lip reading blind leading the incontinent.
A few visitors called in or dropped by including Rachel and Charlotte by video from the US and then it was back to peace and quiet as usual...
Tuesday 20th February 2007. This was the morning to look at the motorhome and have it removed from the tight storage space it is in to a place nearer and available for instant use should we need to call on it . All is well with ‘her’ and there is a certain air of regret for all the plans we have now set aside to visit central Europe, France in particular.Seems our grandiose plans are slowly ebbing away down to short jaunts out and away days if possible though still Jill prefers to be not far from home right now. The note from the NHS states that Jill’s first treatment will commence at 1500hrs on Friday. The preparation are made at home with any temperature variation to be alertly followed up and any sense of the unwell to be reacted to immediately by using a ‘hot line’ to the hospital. So our equipment is checked out for new batteries and we are good to go.
Jill seems to wake with morning sickness which given the circumstances is something, when recovered, Jill laughs about.
In the afternoon the money men came and in a blizzard of legal signatures it seems we both no longer require parachutes as it were, though when the family are around flak jackets are probably best to guard against a sudden unprovoked inheritance attack....
Rachel & Charlotte swung by on video link brightening our day and breaking the MM sombre mood.
Jack C came by with a proper floor mop. I cannot abide these spongy excuses of the current vogue. When a man has to mop he needs a mop and he and Adrienne returned later for a gas. I am reminded about a fire report I checked once reporting a motor scooter fire...he reported as a mophead??
The phantom factory cake shop had better watch out as opposition springs into action...I hear
The flower power machine continues to grind out the wonderful mrs bouquets and bring great beauty to our home and the cards come winging in from afar from exotic destinations...
Tomorrow is a new day and occasionally the genie of awful thougths escapes from his bottle but not for long...the sun will shine again tomorrow...
Monday 19th February 2007. This was a ‘normality’ day when we both got stuck into the old routine with me eventually charging off around the shops ...taking care not to read any of the labels and ending up with cherry diet coke and blueberry porridge! I never realised you could get these gastly concotions and after a very knowing glance from the expert behind the meat counter and a helpful...”it is really expensive you know!” ..I readjusted the ham and togue sandwich meat order massively downwards. Mostly all went back later....perhaps this shop thinks I am a pricer for the opposition...
Then it was into the neglected garden chasing the ring around the sun as rain was foretold and finishing by relaying a ‘rocky’ flag in the drive just as the first few sprinkles appeared. Jill watched and supplied the coffee. It was all quite tranquil and as near as normality as we have been for some time or perhaps some time to come.
After tidying up, the gilt on the gingerbread, as the sailors of old used to say...This was a red letter day for Jill for Rachel in the MI suddenly appeared on the webcam screen with Charlotte chewing every thing in sight. This was quite wonderful and even though Jill’s voice remains an increasing challenge she enjoyed the visual contact immensley.
Jill's stomach pain seems to be surfacing through the morphine and I fear it is time to look at this issue again though on the NHS front we seem to have entered the ‘living dead’ void, though the peace and quiet has been most enjoyable but people still drop by and are more than welcome. One of our neighbours Barbara brought a home made salmon mousse the like of which I have never tasted and Jill is chasing down her receipe we both enjoyed it so much.
Next on the struggle list is to set up a WiFi router to the laptop so we can go ‘mobile’ with the web cam.
Sunday 18th February 2007. Today we went to Southport. We were invited to Alexandra’s 18th birthday party. Alex is Susan’s eldest. It was a nice journey over with the hundreds of Canadian Geese flocking around on the saltings at the mouth of the Ribble estuary a few ‘twitchers’ were present with their binoculars spotting the rare birds. At this time of year I am never too sure whether the birds are still moving away from the cold of their normal habitat, or are here on warm Costa Southport or are gradually moving further north or east at winter departs.
Rather a reminder of the restless transeant nature of all life. All the young members of the family were there chattering away with the older generations mostly free of all responsibility just content to sit back and watch and so it was at the Birthday Party. The chocolate cake was rather yummy and Jill really enjoyed a time away from all the grey side of life.
Later in the evening quite by chance Donal (Irish for Daniel) my brother punched through the ether and in a hilarious pantomime of button clicking and shouting we finally got the web camera linked all the way to Nebraska. Must say he needed a haicut but perhaps it goes with the ‘nutty’ Professor image. It was fun to talk and such was the volume Jill did not need WiFi to hear upstairs. This was a very encouraging technical step with the ambition for Jill to see Charlotte Grace Burns(G/daughter) in Grand Rapids Michigan regularly using the desktop and then the laptop and camera in the comfort of bed or lounge as the occasion arises.
Saturday 17th February 2007. Today has been a great day of hope. It has reached 12C (54F) and after a Bovril toast start for Jill, well I suppose it beats my porridge oats, we headed out this afternoon for a well deserved ice cream at Robinsons in Leyland. One of our old stomping grounds with the children. Simple things are the best as Jill said when she married me 37 years ago.
The sun shone all day and the snowdrops by the wayside were nodding a goodbye to winter with the crocuses, primulaes and daffodils peeping out from shelter and bowing gracefully to the promise and hope of a not far off Spring. We meandered the highways and byways up by Parbold Hill and admired the views towards the fells of north Lancashire and then joined the motorway flow and ‘pensionered’ our way gently back with Jill nodding off in the seat under a streaming sunshine.
The drivah instructions were clear… home by 1630 drivah…Man U cannot be missed on the tele and so to the front doorstep and home from home.
In the meantime I left Tim struggling more manfully than I by remote Windows control trying to sort my box of tricks out. A few successes but still a few gremlins to chase away.
At this moment in time we enjoy the calm before the storm.
On the morning after her final diagnoses Jill told me she had been thinking about my situation and had decided that she was not going to take part in any trials as this would just prolong the agony for me. I was taken aback but immediately said every day was just as precious for both of us …in sickness and in health…Man proposes and God disposes, not a moment early nor late, and so I declined her loving offer. Greater love hath no man…
That is why Jill is such a special person, loving, forgiving, thoughtful, and perpetually caring for others, but above all else, a Lancashire Rose of Courage…
