In the autumn of 2016 I lost my beautiful wife Valerie, suddenly, to an acute form of leukaemia. While most of 2016 was a great year with some fine highlights, in the last quarter the wheels fell off my life.
This, for posterity, is the diary I kep during that period.
Writing a ‘cancer diary’ is a bit of a cliché, but I felt I needed to document this ‘journey’, this unpleasant ‘adventure’ that we’re going through.
It’ll also provide a useful diversion for the early hours of the morning, when sleep is elusive.
I concede that this diary will mostly be about the whirlwind that rotates Val, who’s fighting this pernicious disease.
Val is very much alone in the eye of this storm, fighting her own battle, while the rest of us are buffeted by the raging tempest outside.
I actually started writing this in mid September – we’ll catch up in due course – but 2016 was a year of milestones which makes it easier to bookmark and chronicle certain events, so we can start by rewinding a bit.
Please excuse any random changes in tense.
Saturday July 1st – Val’s 70th birthday
I guess this is as good a day as any to start, Val’s seventieth Birthday.
We’d arranged lunch for a group just shy of thirty people at ‘The Lion Inn’ at Boreham, just outside Chelmsford.
It’s a restaurant we enjoy visiting, but deliberately only visit occasionally, to keep it ‘special’. They have accommodation and we stayed overnight for our wedding anniversary a few years ago.
John and Joanne came down from Chesterfield, Kit & Elaine from Rotherhithe and Phill & Anne from Sri Lanka – although it should be noted that they were already scheduled to be back in Blighty for Phil’s 65th birthday.
The food and service were excellent, and the birthday cake – from ‘Patisserie Valerie’ – was memorable.
After lunch, most people came back to our house for Prosecco, drinks and nibbles; other guests called by and a good time was had by all.
The last guests left at about 10pm and while Val was weary – it had been a long and busy day – she appeared fine in both health and humour.
Saturday August 6th – Hyde Hall Flower Festival
A few weeks later we went to Hyde Hall for their annual flower festival. We spent several hours walking round the gardens; I would guess we walked close to a mile and a half.
Okay, so Val had to sit down and rest a few times, but her energy levels were pretty good.
We then went to The Hawk at Battlesbridge for lunch and Val enjoyed a seafood linguine.
Saturday August 20th – Jan’s 70th birthday
Jan chose to celebrate her significant birthday with drinks at ‘Club Woodham’. I drove us into town at about eight, dropped Val off and parked the car. We found her a seat at a table with friends and I took some time to ‘work the room’ catching up with many friends and acquaintances whom we’d not seen for a while.
By about nine Val declared that she was tired and wanted to go home.
Jan later told me that several friends had expressed concern over the state of Val’s health, but we all assumed it was the progress of the Parkinson’s that Val had been fighting for ten years.
August Bank Holiday weekend
John and Joanne paid us their annual Bank Holiday visit; they’ve been visiting every year since we moved down to Essex in 1986 and we always look forward to their visits.
We spent Saturday walking down Maldon high street – after we’d enjoyed a breakfast of Eggs Benedict at the Oak House bistro.
On the Sunday we visited the craft fair at Hyde Hall; again Val needed frequent rest stops but she enjoyed the day.
We had a lazy Monday, and Val showed some signs of confusion; those were possibly my first concerns – late on Monday evening Val decided that she wanted to take her top off, which wasn’t wholly appropriate with guests present.
Those were the first alarm bells.
Thursday September 1st
Later that week I suggested dinner at ‘The Royal Tiger’; we’d won a voucher a few weeks earlier for a ‘meal for two’ and I thought it might make an interesting diversion, so we drove up there.
We ordered our usual dishes and Val enjoyed her regular starter of ‘King Prawn on Puree’ – or at least she enjoyed the king prawn curry, if not the Puree bread.
When the main courses arrived Val decided that she’d had enough; the main meals were decanted into ‘doggy bags’ and we headed home.
Saturday September 3rd – Karen’s birthday
Karen and Bill had invited us to a chic restaurant in Chobham, about twenty minutes from their place. We arrived mid afternoon and enjoyed a very pleasant meal, although Val’s lack of appetite meant that we shared a main course. Towards the end of the meal Val got confused and absentmindedly picked up my wine glass. She also whipped out her debit card to pay the bill, even though it was Bill’s treat.
Things deteriorated further back at Karen & Bill’s, it was a warm, muggy evening and Val again decided to take her top off.
I managed to dissuade her, but it was distressing for Karen.
Val had a troubled night and we headed home after bacon butties next morning, Val then slept for much of Sunday 4th.
Tuesday September 6th
I’d managed to blag an appointment for Val with our GP.
We’ve known our doctor – John Cormack – for thirty years, since the time I walked into his surgery in July 1986 and asked if we could join his ‘club’. John always appears to me to be Michael Palin’s younger brother, he’s a great GP, and both he and his wife Sue have been kind to Val through her various travails.
‘Normal’ scheduled appointments were booked for at least ten days ahead, but I’d described my concerns when I saw John to discuss some council business a few days earlier. He squeezed Val’s appointment in before his early evening ‘commuter clinic’; Val was tired and very confused, which helped make my point.
John ordered a full set of blood tests, so wheels were finally in motion.
Wednesday September 7th
Val seemed to be okay when she woke, she was mobile and lucid, but her condition deteriorated through the day.
We had gardeners working on the garden at lunchtime, and Val tried to pay them with her debit card. This upset the gardeners, and it was evident that things weren’t well.
By the evening Val was reduced to shuffling around and was unable to answer ‘complex’ questions. It took nearly half an hour to get her upstairs to bed, and she was restless through the night.
Thursday September 8th
Having tried, without success, to get a blood test arranged locally, I took Val to St Peter’s Hospital in Maldon where they hold a daily ‘drop in’ blood test clinic. We had to wait for nearly two hours, and the fifty yard walk to the clinic from the car tired Val out, but the tests were done.
After the previous day’s bed time experience, we took her upstairs early, she was in bed before nine and soundly asleep by the time I went up.
Friday September 9th
Friday September 9th was the day the wheels fell off our lives.
Val slept soundly until at least 9am and showed no inclination to get out of bed. I had prepared a ‘to whom it may concern’ letter for our doctor’s practice, got Val to sign it as best she could and I took it in to the practice.
The practice then called at lunchtime suggesting that I get in there as quickly as I could, and that Val should get prepared for travel. I drove to the practice in a matter of minutes and the doctors presented me with a letter to take, with Val, to the A&E at Broomfield Hospital.
The letter included the words ‘indicative of acute leukaemia‘ which was – to say the least – a shock.
Less than an hour later, we were presenting ourselves to A&E at Broomfield; Val was on their list as an ‘expected medical admission’.
We had an unfortunate experience with the triage nurse while being checked in.
“When was her last dose of chemotherapy?” He asked.
“She’s never had chemo.” I replied.
“But she has cancer.” He retorted.
“We’ve been told she has leukaemia.”
“Yes,” he responded as though lecturing a child “and that’s a type of cancer.”
“Yes.” I replied. “And we found out forty minutes ago.”
The nurse clattered away at his keyboard, somewhat embarrassed.
They got Val to a ward late in the afternoon and they immediately set about taking further blood samples, while I headed home to inform Karen and Gary.
They were difficult calls to make.
Saturday September 10th – Broomfield
Val was very confused through the day, I spent the afternoon with her but frankly I’m not sure the extent to which she knew I was there.
I was there though, which was important to me.
Val’s arms were black and blue, the hospital had had problems getting blood samples, and her blood clearly wasn’t clotting.
Val was on a saline drip for the whole weekend.
Despite my best efforts at keeping Val hydrated over the previous week, I had clearly not been as successful as I would have liked.
Sunday September 11th – Broomfield
Again, I spent the afternoon with Val at Broomfield, she was on a saline drip and a selection of antibiotics, anti viral and anti fungal drugs. She was very confused and her arms were mottled with bruises, they took another set of blood samples and wired the results to Bart’s Hospital in London.
Val’s lack of platelets meant she was still bruising easily.
I spent Sunday evening in my local, as usual, and brought some of the guys up to date. It’s not something I was shouting from the rooftops, but people needed to know what was happening.
While in the pub that evening I received a text from Bill – Karen’s husband – advising me that Alan – Val’s first husband – had died. Karen had warned us that he had been battling liver cancer and that he was due to be going into a hospice, but he never made it.
Monday September 12th – Broomfield
I went in to Broomfield at lunchtime and found Val to be fairly lucid, still on a saline drip, but less confused.
I took the opportunity to tell her the news about Alan and she had a little weep, as much for the kids as for Alan, I think.
Broomfield had been waiting for Bart’s to find a free bed for Val; Sunday’s blood test results had indicated ‘ALL – Acute Lymphoblastic Leukaemia’ and the news of a bed at Bart’s came through mid afternoon. They loaded Val onto a stretcher and headed into London at about 5pm.
I had a ‘senior moment’ back home, running a full wash cycle on an empty washing machine, before running it again with some shirts. I then spent a quiet evening in front of the TV with Layla snuggled up beside me.
Layla was clearly confused and missing Val, and while Layla is never going to be the world’s most affectionate cat, she needs the occasional cuddle as much as anyone.
Tuesday September 13th – Bart’s
I drove into Chelmsford and left the car at the Civic Centre car park, I had a City Council Cabinet meeting in the evening, followed by a Town Council meeting. Life has to carry on as best it can, and I like to think that my Council work allows me to make a small difference.
Both council meetings were finished by 9pm and I then headed home to Layla.
Val was in a pleasant enough room on ward 5C at Bart’s, sharing the room with a tiresome, Guardian reading, woman who was coming to terms with Type 1 diabetes; she sighed and complained a lot which was annoying.
Again Val was on a saline drip for the whole day.
Wednesday September 14th – Bart’s
I spent the morning pottering about the house, ironing shirts, cutting the grass and popping up to Broomfield Hospital to get a health insurance form signed – they charged a tenner for a signature and a stamp! I then drove into Chelmsford and left the car at the Civic Centre, again catching the train into London from Chelmsford.
I arrived at Bart’s just after twelve thirty, a doctor was taking some samples, they were smeared on microscope slides. The doctor said that she’d be back later to discuss things.
Val was less confused than she’d been of late, and was no longer on a saline drip, so possibly she’s sufficiently hydrated.
Karen and Bill came in mid-afternoon, having enjoyed lunch at Gordon Ramsey’s ‘Maze’ restaurant – that we’d bought them for Christmas last year. Val was down for an ECG scan when they arrived, but was pleased to see them when she returned. They stayed until about five, but despite regular requests to the nurses there was no sign of the elusive doctor.
By six I had had enough waiting and made enough of a nuisance that the doctor appeared. She told me that the tests had confirmed ‘ALL’ (Acute Lymphoblastic Leukaemia) and that they would start a treatment of steroids immediately, followed by chemotherapy.
I’m not sure that Val yet fully comprehends what’s happening, but at least we know the name of the monster we’re battling, you have to name the monster before you can beat it.
I got home at about eight, microwaved a ready meal and had a couple of beers in front of the television, with Layla snuggled alongside.
Thursday September 15th
Sleep is elusive. I woke at about three and while I dozed a little, I decided to start this journal.
The entries prior to this are retrospective and possibly clouded with hindsight.
Wide awake, before 8am I wrote emails to both the City and Town Councils appraising them of the situation and advising my intention to continue as best I can. There are projects, both underway and planned, that I want to progress, and the Councillor allowances are useful!
I received many supportive emails from fellow councillors, offering help and support. It’s gratifying, but I’m not sure what I could ask, other than asking our neighbours, Grahame and Annette, to feed Layla when I’m running late.
Our friend Elaine (whom I’ve known longer than I’ve known Val) called in briefly to see Val, and was pleasantly surprised with how well she looked.
Val was certainly the most lucid I’d seen her for about a week.
During my afternoon visit we had a discussion with a cardiac specialist and he asked what treatments were planned for Val. I explained that they were starting with Steroids before starting the Chemotherapy. Val’s ears pricked up at the ‘chemo’ word and I had to explain that what she was suffering from was actually a type of leukaemia. I think she comprehended what I was saying, we shall see.
Back home in the evening it was the new routine of ready meal, sofa, and snuggle with Layla.
Friday September 16th
I was woken at about three by some distant rumbles of thunder, but we escaped the worst of the storms that hit south east England. After a couple of unseasonably warm weeks, summer ended abruptly and noisily.
Gaz had asked me to take some things into London for him, Karen will collect them, in preparation for their father’s funeral next week. He’ll be traveling light and so needed his suit and shaving kit.
Val appeared very well when I arrived; she’d been moved to room 7, which was a private room with a view of the (largely empty) Merrill Lynch offices and the dome of St Paul’s cathedral.
During the afternoon they gave Val a bed bath, changed her wrist cannula (the previous one had been fitted on Monday in Broomfield), and finally – at the seventh attempt – succeeded in taking a set of lumbar puncture samples.
I was collared by Val’s consultant just as I was leaving:
“I need a chat with you both. I thought her daughter was also visiting?”
“Yes, she was here for two hours.”
“Oh, right, well we need to talk.”
“Fine, I’ve been here for four hours.”
So I stayed. The consultant wouldn’t have been working over the weekend anyway, there may indeed be a seven day NHS, but it hasn’t filtered up to the consultant level.
She went through the proposed treatment plan, slowly and carefully – enunciating every potential problem and contra-indication, before presenting us with a consent form which we duly signed.
The treatment is going to be Chemotherapy – Vincristine (Oncovin) and Idarubicin (Zavedos) intravenously – they’re going to insert a different ‘deep’ cannula (PICC) along with Methotrexate.
The Methotrexate is usually given as a spinal injection, but Val’s spine isn’t conducive to that. Previous damage to her lower spine was the cause of the difficulty in getting a successful lumbar puncture.
She’s likely to be staying in Bart’s for the next few weeks, then (hopefully) home with follow up blood tests and chemo boosters for the next twelve months.
She’s in an ‘over pressure’ room to reduce the risk of infection and is receiving antibiotics, anti-virals and anti-fungal drugs to further ward off infection as her immune system is compromised.
I also ‘went public’ and posted news about Val’s health to friends on Facebook. We received over a hundred messages of support within twenty four hours which was gratifying and heartening.
Saturday September 17th
Saturday morning, and the trains into London from our part of Essex were disrupted by ‘crossrail’ engineering works, so I was forced to take an alternate route into London. This necessitated driving down to Pitsea and taking a train in from there. It actually proved faster and cheaper – with air conditioned trains – than either the Southend or Chelmsford lines.
And the trains went into Liverpool Street, which was a result.
Bart’s was running on reduced staffing for the weekend, so while Val still hadn’t had the ‘deep’ cannula fitted – probably Monday – they replaced her wrist cannula. The wrist cannula had been fitted on Friday by a very smug female doctor but it wasn’t working.
Val seemed a tad more confused than on Friday, but still infinitely better than just a week before.
On the way home I called in for a quick beer with my good friend Jeremy.
Jeremy runs a cancer and depression awareness page on Facebook and it’s always good to catch up and talk other stuff – cars and Formula One – for a change.
Back home I microwaved a ready meal and watched rubbish on TV with Layla snuggled up beside me.
Sunday September 18th
Karen had agreed to visit Val on Sunday and collect Gaz’s suit, which let me off the hook for a day, which was a pleasant, if guilty, break.
Somewhere along the line I’ve driven nearly 180 miles in the past week and spent more than eighty quid and eighteen hours on trains.
I wasn’t that lazy though, I washed and ironed the laundry, vacuumed through the house and made myself a tomato sauce with home grown ‘heritage’ tomatoes.
Karen texted in the evening to say that Val had been tired, but lucid. Good enough.
Monday September 19th
The weather is clearly cooling down; Layla has started coming upstairs to our bedroom. There’s now every chance that I’ll be disturbed by a gentle scrit scrit on the shoulder as Layla creeps under the duvet. Unfortunately once woken I’m struggling to get back to sleep, so I feel like I’m living in a different time zone.
I had my normal Monday morning 8am business call, and appraised my guvnors as to Val’s status and the expectations for the next few weeks. While they’ve told me to do ‘whatever it takes’, I am travelling into London after 11 most mornings, so I can offer to do some hours work each morning before I leave.
I drove to the local station, planning to travel on the 11:16, except there had been a bridge strike so there were no local trains. Instead I drove to Chelmsford, left the car at the Civic Centre and made it in to London at about the same time.
In Bart’s, Val was sitting in the chair, which was an improvement and now has a therapeutic ‘air mattress’ to prevent bedsores (they’re expecting her to be in for a while). They had to do yet another cannula (Val evidently has very fine veins), but were planning on starting chemotherapy later in the day. Tomorrow (Tuesday 20th) they’re planning on a chemo injection in her spine and installing the heavy duty ‘PICC’ (Peripherally Inserted Central Catheter). These are both done ‘upstairs ‘ on the day care ward, but it could be a heavy day.
We also met Sam, the specialist leukaemia nurse, who is almost painfully sincere and sympathetic, but means well. She handed me a pile of reading matter – one book claims 90% remission after first chemo – and discussed wigs with Val. It’s likely she’ll lose her hair, and the suggestion that I would shave my head in sympathy was not terribly well received.
Back home I cooked tortellini with the home made tomato sauce, and Layla snuggled with me as I read the booklets I’d been given earlier.
Tuesday September 20th
Val was in good spirits on Tuesday, she was sitting in her chair again, and managed half a sandwich for lunch. They’d given her a blood transfusion on Monday evening and a further transfusion of platelets while I wad there.
They didn’t get round to installing the PICC, it was scheduled for 3pm but didn’t happen. They took her up for her spinal chemotherapy injection at about 4:15 so I headed home after a chat with one of Val’s consultants.
I expressed concern that there didn’t seem to be much sense of urgency, and that there seemed to be delays in starting the chemo.
She responded that yes, there had been scheduling problems, but that Val had been on steroids for several days, had had ‘full blood’ and platelets, and was now receiving the first type of chemo.
I’ll feel better when they get the PICC line fitted.
She also confirmed that this phase of treatment is likely to last ‘three or four weeks’ after which Val would be allowed home, subject to follow up blood tests and further chemo as necessary.
In the evening I had a Town Council meeting, nothing too heavy but, as a City Councillor, I took some flack for a decision (that I’d been party to) to close the town’s information centre. These things happen, and the City Council should save tens of thousands. I just hope it’s largely forgotten come election time.
Wednesday September 21st
I had another City Council meeting in the evening, so I made another journey in from Chelmsford – after a sneaky Eggs Benedict at a local café – it threatened to be a long day.
Once again Val was sitting in the chair, but was more confused than she’d been for a few days. The spinal chemotherapy yesterday (Tuesday) was unsuccessful, so they’re going to have to try again on Thursday. This could be a problem, because they’re likely to have to do these twice a week. Meanwhile they’re questioning whether she’ll need the promised PICC line, as she’s now on chemo tablets, no more intravenous chemo in this phase – although she will continue to need to undergo blood tests.
If they do the PICC it will be at the Royal London Hospital early on Friday morning.
We also met with an occupational therapist, who discussed likely changes we will have to make at home, additional grab handles around the house, in the en-suite and so on.
And finally, I caught up with Sam, the sympathetic nurse. I texted her before 1pm and told her that I needed to leave before 6pm to get to my council meeting. She eventually turned up just before 6pm, with the schedule of chemo treatment – four full weeks, of which we’re currently on day three.
I was not happy, even when she explained that she was contracted 9-5 but had worked since 7am and hadn’t had a chance of a drink.
While I was sympathetic, I had other commitments and was thirty minutes late at the City Council meeting back in Chelmsford.
I arrived home just after nine, time for a cold beer and a snuggle with Layla, who is still very confused by Val’s absence.
Thursday September 22nd
Back to travelling into London from South Woodham Ferrers, with the promise of a quiet evening in.
I texted an apology to Sam, the sympathetic nurse for my grumpiness the previous evening, she called and advised me that they’re changing the chemo schedule to a more intense schedule and that they would probably do the PICC line at Bart’s, after the spinal injection, which I now know to be known as ‘intrathecal’.
Val was very confused, the nurses confirmed that she had an infection of some sort and they were treating it as best they could without knowing what sort of infection it was.
At one thirty they took her up to the seventh floor for the intrathecal injection and the PICC line. I was told that the injection was straightforward and that they will probably schedule future injections for Mondays and Thursdays as those days the consultant with the appropriate knack will be around.
While she was away I met with Sam, the sympathetic nurse, she gave me a revised schedule of treatment and data sheets for the various types of chemo that Val’s receiving. Sam told me that she’s contracted to work 9-5 and worked through until ten on Wednesday evening. I’m glad I’d texted the apology, I’m sure they get more than their fair share of anxious partners.
I also had another meeting with the occupational therapist about grab handles for the en-suite, I’d taken some photos and she suggested rail heights and so on.
Val hadn’t returned by five thirty, and I hadn’t made alternate arrangements for feeding Layla so I ducked out and headed home. I’d only spent an hour with Val, but the afternoon hadn’t been a total write off.
Friday September 23rd
The weather is turning autumnal, Layla slept in her bed in our bedroom, a clear indication that it’s now warmer upstairs than down. At least she slept until 4am when she decided she wanted to clamber into bed beside me, then tried to nudge me out of bed. Thus I was to be found wide awake at four thirty with a grumpy cat back in her bed.
Whilst slightly chilly, Friday was a bright and sunny day. I called into Maplin on the way into the hospital to get a spare phone/iPad charger to leave in Val’s room. Boys and their toys, eh?
In the hospital Val was much less confused than recent days, her temperature had come down.
Val didn’t know how long the PICC line had taken, but it was in place and the various infusions were a lot simpler to deliver. Just as well as they were continuing to pump anti-everything drugs into her to beat the infection.
We also had a visit from the Bart’s ‘wig lady’ who left a glossy wig brochure for Val to look through, she said she’d come back sometime the following week.
At three thirty they took Val down for an ECG scan, she was back an hour later, just as Gaz arrived.
We stayed for about an hour before heading homeward, sneaking down to the local for a couple of beers and some ‘social networking’.
Back home I slept the sleep of the just.
Saturday September 24th
Gaz and I headed over to ‘The Thomas Kemble’ in Rettendon for their ‘all you can eat breakfast’ – that turned out to be a mistake as they had no bacon – what’s a ‘full English’ without bacon? – and the rest of the food was pretty dire. In theory we could have refilled our plates and coffee mugs all morning, but we were in and out in fewer than twenty minutes.
From there – after a brief diversion to allow Gaz to stock up with pork products to take back to Abu Dhabi – we arrived at Pitsea at about eleven thirty, in good time fog the 11:48 train into London. The train was twenty minutes late, packed with passengers, and was rescheduled to terminate at Barking. It got ever more crowded with each stop and was crammed like a Tokyo tube train by the time we were unloaded at Barking. We fought through the crowds to the platform for the ‘District’ line and boarded the first train only to be told, by the driver over the intercom “You can board the train but I have no idea when we’ll be moving.”
Eventually we moved and the train crawled along to Mile End where we could change to the ‘Central’ line for St Paul’s. The train journey, which had been smooth sailing the previous week, had taken just shy of two and a half hours.
In the hospital,Val appeared fine, if tired, although her legs were ‘jumpy’ and causing her some annoyance. It was, however, a great improvement over recent days and weeks. Val spent some of the afternoon looking through the catalogue that the wig lady had left the previous day, before starting to doze.
Despite the long journey to get to Bart’s, we ducked out at about four thirty to allow Val to get some sleep. The journey home was painless and then Gaz and I snuck down to the Prince of Wales for dinner.
Sunday September 25th
Sunday didn’t start well; I got up to find Gaz in tears. He’d been talking to his sons – Kalin and Elvin – by Skype and Kalin had said that he thought his daddy didn’t love him, because he hadn’t visited. I’m not sure where that came from, but Nicole, Gaz’s wife, is not averse to a little mischief making.
Needless to say, twenty minutes later Gaz was at Pitsea on a train towards London and then onto Biggleswade.
My journey in, later in the morning, was less stressful than Saturday’s, delivering me to St Paul’s in a little under an hour.
Val was slightly less tired than the previous day, although she said she hadn’t slept well. There was little sign of confusion and her legs weren’t causing any problems, she was just tired and bored.
Gaz arrived from visiting the boys at about three thirty.
Karen messaged me in the afternoon to say that she thought that she was going down with a cold, and so might not be visiting on Monday. Val’s immune system is so compromised and the hospital is doing so much to ward off infection, it would be stupid to knowingly invite infections in.
In the evening Gaz and I snuck down the road for some social networking.
Monday September 26th
And a very early start, Gaz was booked on the 09:30 from Heathrow, which meant a 5am departure from home. Traffic around Heathrow was heavy, even at 6:15am, with a tailback from Junction 15 through to the drop off point.
I dropped him off at Terminal 5 and turned round. I was home, weary, by 08:30.
Karen messaged me to say that she felt she would be okay to visit, so I took the day to catch up with housework, tidied up the wreckage after Gaz’s visit, cut the grass, ironed my shirts, and so on.
Karen called me later to report that Val was pretty much as we’d left her on Sunday, she’d taken Val some ‘superfood’ salads in. There’s a fridge in the room, so on Tuesday I’ll see if Val will try them – providing they’ve been kept cool.
Tuesday September 27th
Tuesday was a relatively uneventful day, however train problems suggested I would be better travelling in from Chelmsford.
I arrived at Bart’s a little earlier than usual, just after twelve and so was present when the doctors did their rounds. I spoke with the consultant and the registrar and both were pleased with Val’s response to the chemotherapy. Val had had the intrathecal injection on Monday afternoon and was due still more infusions.
I managed to get Val to eat some of the salad Karen had prepared – salmon, avocado, tomato and quinoa. She seemed to enjoy it, it was certainly more appetising than the hospital food.
After lunch they started the infusions and Val started to doze – the doctors had advised that lethargy is normal at this stage of treatment – so I ducked out and headed home mid afternoon, well ahead of the rush hour.
I had a Town Council meeting in the evening, the Town Council and about a dozen residents were complaining about new policies at the Town’s recycling centre. At the end of the discussion, while not a member of the committee, I made a proposal that the Town Council write to the County Council expressing their concerns. That was accepted, I then ducked out of the meeting and snuck down to The Curlew for a quick pint with Pete.
Wednesday September 28th
Outside it was a sunny and warm day, for September at least, possibly summer’s final flourish, but in Bart’s it was a dark day.
I was informed that Val had had a restless night, and despite half hourly observations, had managed to fall in the bathroom and remove the PICC line that had been so much trouble to get fitted.
I later learned that the doctors were considering changing the PICC line anyway as they suspected that Val was suffering from a low level bacterial infection and the line might have been the source. One of the nurses had struggled to get blood samples from the line the previous day.
Val was asleep when I arrived, but when she woke and needed the bathroom they took the opportunity to shower her and change the bed. The doctors then had to fit another peripheral cannula to her wrist for the day’s infusions.
I met the wig lady (Victoria Wood) while Val was showering and we discussed wigs that would hopefully pass muster if Val loses her hair. She’ll bring them back on Monday.
The doctors remained optimistic at Val’s overall progress, but they cautioned me that in the coming weeks and months there would likely be good days and bad days.
I left Val sleeping, it had not been a good day.
At home I spent the evening on the sofa with Layla.
Thursday September 29th
The hospital called me, while I was on my way in to London, to warn me that Val’s condition had deteriorated.
That they’d called me was in itself sobering – a word I’ve used a lot of late.
I’ve written before that the perceived wisdom (from the hospital and MacMillan) is that they ‘beat’ this type of leukaemia 85-90% of the time.
This was the moment when I realised that Val might not be in that percentage.
When I arrived, at midday, there were two nurses in with her and at times there were several doctors and nurses around the bed.
Distressingly, when the doctors asked Val if she recognised me, her eyes glazed and she wasn’t able to answer, it broke my heart and I struggled to fight back tears.
Similarly, Val was unable to tell them her date of birth or what the year was, clearly this was a deterioration from her condition on Wednesday.
They later put a second cannula in Val’s other hand and a gastro-nasal tube to get food and medicine in, as she’s had far too little to eat of late.
One of the consultants (Doctor Wrench) took me aside into a ‘relative’s room’ for a ‘chat’. She explained that while the tests showed that there were no traces of leukaemia cells in Val’s spinal fluid – which was positive – they were becoming increasingly concerned at the worsening confusion, which was possibly caused by the underlying infection.
The consultant also suggested that it might be appropriate for Karen to visit sooner rather than later as they don’t know whether Val’s condition might deteriorate further. I called Karen and she and Bill headed in to Bart’s, arriving at about three thirty.
Val had gone down for an X-Ray and MRI scan when Karen & Bill arrived, so they didn’t get to see her. They spoke with the doctors though, and they explained that Val’s confusion might be caused by the infection, in which case we would all have to see whether her condition improved after they’d beaten it.
The worst case scenario was that the leukaemia had spread from the spinal fluid into the ‘grey matter’ of Val’s brain, in which case the prognosis is far from good. Indeed if that proves to be the case, then the doctors explained hospital would be reluctant to exercise ‘heroic efforts’ to extend Val’s life in the event of failure of another organ – such as her heart.
I left at five thirty, emotionally drained; I had a City Council meeting in Chelmsford at seven and arrived home just after nine. I skipped dinner, I’d lost my appetite.
It had probably been the darkest day of my life.
Friday September 30th
It’s difficult to believe that it was only three weeks earlier that we whizzed Val to Broomfield hospital, so much has happened over those weeks.
Karen and Bill arrived a few minutes before me – just after eleven thirty – there had been problems with trains again. We found Val to be slightly less confused that the previous day, she appeared to recognise us, but struggled to communicate. She was able to squeeze the consultant’s hand when asked, which was an improvement.
The consultant confirmed that there appeared to be some improvement – we’ll take that – but explained that they hadn’t managed to perform the MRI scan as Val had been too anxious. The plan was to give her some mild sedation (Midazolam) and then conduct the scan. They would then fit a ‘central line’ while she was relaxed, replacing the missing ‘PICC’ line. She also confirmed that they were giving Val ‘full spectrum’ antibiotics. Val’s temperature had ‘spiked’ at 38.4 degrees but was back down to a healthier 37.2 degrees while we were there.
Val wasn’t in pain, the staff were anxious to confirm that, and when asked she would shake her head and say ‘no’ but she was clearly suffering some discomfort, triggering troubling resonances of my mother, in the hospice, ten years earlier.
I accompanied Val downstairs to reassure her while they transferred her onto the MRI Scanner bed, and waited while they conducted the scan in case she needed further reassurance. The scan took about a quarter of an hour and the radiologist confirmed that they’d managed to get some good pictures. We then waited to see what the specialist neurologists make of the pictures.
Later, after a couple of hours ‘social networking’ I called the hospital, but they hadn’t received any update from the MRI scan output. Maybe tomorrow.
So, Friday was a marginally better day than Thursday.
Back home, I made a few ‘phone calls, keeping friends and family updated, then snuck down the road for a few beers. I later found myself falling asleep on the sofa, it had been a tiring week.
I didn’t think we were out of the woods yet, but I’d take any improvement we could get.
Saturday October 1st
I had originally planned to attend my “boys’ club” meeting in Chelmsford. We meet on the first Saturday each October, but the conversations of previous days with Val’s doctors and consultants suggested that my time might be better spent withVal.
Accordingly, having sent my apologies to the boy’s club, I travelled up to town on Saturday morning from Pitsea, there still being no trains on the main lines into Liverpool Street. Indeed there were also works on the ‘C2C’ line and my trains were diverted through the Essex hinterlands of Stanford Le Hope, Tilbury and Grays; a route I’d never before travelled.
I was reading Bruce Springsteen’s autobiography and the resonances between the Thames corridor and the ‘swamps of Jersey’ never seemed stronger.
I arrived at the hospital at about eleven thirty and found Val soundly asleep, she’s always been a sound sleeper. The nurse informed me that Val had had a restful night, her observations were good and her temperature coming down.
Val looked peaceful, which was a relief compared to earlier in the week.
We were still waiting on the neurological reports from Friday’s MRI scan. I stayed until four, the doctors were tied up in intensive treatment, but were waiting on the radiology registrar to release the report to their consultant who would then release it to the 5C consultant and then it would be communicated down to the doctors on the ward.
The nurse said that they would phone me if and when they get the result otherwise, I told them that I’d be back in at lunchtime on Sunday.
Val remained soundly asleep throughout my visit and didn’t appear to be aware that I was there, but neither did she appear to be in any discomfort.
Back home, domestic god that I am, I did the laundry on Saturday evening.
Albeit laundry with another ‘senior moment’ I washed four light coloured shirts, not realising that I’d left a yellow highlighter in a shirt pocket. Whoops! Thank heavens for colour catchers, they saved the day.
The hospital were true to their word, a doctor called to inform me that Val’s scans didn’t appear to show any deterioration from the scan that they had done earlier in Val’s treatment.
Sunday October 2nd
From the previous week’s experiences I knew that the journey into London, even on the ‘C2C’ line, would be tortuous, requiring a drive to Pitsea then a change of trains at West Ham and Mile End.
The journey wasn’t as bad as I’d anticipated, I was in the hospital before mid-day, to find Val still asleep. I managed to have a chat with the doctors and they advised me that they were reducing her ‘opioid’ painkillers, but keeping them handy in case she showed signs of discomfort. They were also increasing the dosage of antiviral drugs, as the antibiotics; frankly, weren’t beating the infection.
A serious, but sympathetic doctor told me that they were doing everything that they could, but that Val was very, very poorly and it would be appropriate to keep the kids informed. I called them both when I got home and spoke with them, appraising them of the conversation I’d had with the doctor.
Karen would be coming in to the hospital on Monday, it’s trickier and more expensive for Gaz, back in Abu Dhabi.
As I looked over at Val sleeping, with oxygen tubes, a feeding tube, a catheter and two different drug infusions, it was obvious that she was indeed very poorly, and I recognised that the doctor was trying to manage our expectations.
Miracles happen, but even I could see that the doctor was telling me to prepare for the worst.
Monday October 3rd
My company holds a weekly ‘start the week’ call at 8am on Mondays. I was sat at the computer waiting for the call when one of Val’s nurses phoned to tell me that Val’s condition had deteriorated, and that I ‘might’ want to catch an earlier train into town. I hurriedly showered and drove to the station, just in time for the 08:37, which comprised just four carriages and was rammed full.
I arrived at the hospital just after nine thirty to find Val pretty much as I’d seen her at the weekend, sleeping soundly with no obvious signs of distress, a bit of a throaty rasp, but nothing too concerning. The nurse (Laura) later apologised for calling me, but she’d acted in good faith; there’s never a good time to arrive or leave when visiting, you just have to try and balance your life.
Karen arrived later and we both sat with Val for a few hours, I doubt Val knew we were there, but we made attempts to communicate with her.
I’d emailed the wig lady to advise her that her planned visit wasn’t necessarily appropriate, and she didn’t show, which was fine. I also spoke with Sarah the consultant and Sam the sympathetic nurse; they confirmed that Val was receiving all the drugs she might need to fight the infection, and was being fed high energy food through the gastro-nasal tube. No sign of the ‘death pathway’ here, it’s all down to Val fighting.
Karen, who’s being incredibly strong about this, summed it up “Hope for the best, prepare for the worst.”
Tuesday October 4th
After Monday’s early morning rush I caught the first ‘cheap’ train up to town, arriving at the hospital just after eleven; just as ‘the professor’ (actually Professor Cavanagh – I later learned he is a leader in clinical haematology – so he knows his stuff) was doing his weekly rounds. It was interesting to see the normally haughty registrars reverting to ‘minion’ mode.
Professor Cavanagh took the time to explain to me that, in their opinion, when Val had been admitted to hospital, the leukaemia had already spread from her spinal fluid – which they can and did treat – into her brain – which they “don’t have the tools to treat”. So the confusion that everybody had thought was caused by an infection, was actually the cancer in her brain.
Of course all the hospital MRI scans were comparing against scans done since she’d been admitted to hospital, so they couldn’t show deterioration that might have happened before her admission.
He confirmed that Val was not in any pain or discomfort, that they would continue to administer palliative care, but that – in his experience – she would probably “go in the next few days”.
Karen arrived a few minutes later and I related the conversation with the professor, and effectively the end of hope.
We sat with Val, holding her hands and talking to her.
I have no idea whether Val knew we were there, but as Professor Cavanagh had said, there was no evidence that she was in any pain or distress.
Later, as I left the hospital, the nurse who was treating Val – a charming soft spoken Scot named James – confirmed that the hospital had my ‘phone numbers.
Back home I spoke with Gaz and conveyed the news, he was stunned, particularly coming so soon after the loss of his father.
There wasn’t much more to be said, really.
Wednesday October 5th
I’d exchanged texts with Kit and Elaine on Tuesday, and had agreed to meet them at a pub near Liverpool Street on Wednesday afternoon, so I walked to Woodham railway station rather than taking the car, just in case.
I arrived at Bart’s just after eleven, again, part of this painful routine, to find Val’s condition unchanged. If there was anything positive to take, it appeared that she’d managed to fight off last week’s ‘infection’.
I exchanged text messages with Karen and agreed that she should stay home, she’d sold her car that morning so would have been in later, but as I’ve written previously, there’s never a good time to arrive or leave.
At the ‘tea station’ I spoke with a fellow relative whose son – only twenty eight – had been been in Bart’s for nearly five months. He’d visited every day, from Finchley, and was at pains to tell me that the people at Bart’s work miracles. I didn’t have the heart to tell him that sometimes they can’t.
While I was visiting, they gave Val a 24 hour ‘power syringe’ containing morphine and Midazolam to keep her calm, it was housed in a locked Perspex box, presumably to prevent ‘accidental’ overdoses.
They also decided to reduce her fluid intake, as the fluids seemed to settle on her chest, causing a disturbing ‘rattle’.
Several nurses, who had cared for Val just a week ago, were shocked to see how much her condition had deteriorated.
It’s the sympathetic looks – and I know that they mean well – that tear at your heart.
I met with Kit and Elaine as planned for a couple of beers on my way home and then, as I approached South Woodham, I received texts from Pete and Gary, so I snuck into the local for a couple more on the way home. Layla was singularly unimpressed.
I also responded to a few phone calls, we really are blessed to have so many good friends.
I wrote at the start of this journal that Val was in the eye of the storm and blissfully oblivious to the tempest raging around her. Today I felt like a sea captain lashed to the mast, trying to keep some semblance of control.
An early night, with Layla snuggled up beside me.
Thursday October 6th
I managed to do some work before setting off on Thursday morning, my employers have been incredibly understanding, but there had been a couple of interesting news announcements on Wednesday so I wrote a blog post about them for the corporate website.
Then it was down to the painful routine, usual train into town, arriving at the hospital just after eleven.
Val was asleep, but somehow ‘closer to the surface’; on occasion she would cough or splutter and her eyes would half open. I’m not sure how much of ‘Val’ remained behind those eyes, but Karen and I would encourage her back to sleep and the eyes would close again.
Shortly after we’d arrived a couple of nurses asked us to leave the room while they made Val ‘more comfortable’
There were fewer tubes in evidence, the feeding tube and drips had gone, but Val was still receiving oxygen and the ‘power syringe’ I mentioned yesterday.
I saw both Sam the sympathetic nurse and Sarah the consultant before I left, the consultant confirmed that they didn’t expect Val to last much longer, and that they had withdrawn most of Val’s drugs as giving them to her seemed to cause distress.
She confirmed that the hospital’s focus was keeping Val as comfortable as they could.
And Sam the sympathetic nurse was just, sympathetic, I guess it works for some people.
Back home, I had a call from John, one of my guvnors. He was staying at Burnham on Crouch and suggested that we meet up for a couple of beers. It was good to catch up and learn how things are going at work.
Friday October 7th
It’s astonishing to think that just four weeks ago our lives were ticking along.
Looking back I can acknowledge that Val was tired and confused and had lost much of her appetite, but we had no idea that she was so very seriously ill. She was at home and happy to sit and watch ‘Escape to the Country’.
Anyway, I caught the ‘usual’ train up to town and arrived a tad before Karen. Val was soundly asleep, but responded to me opening the door. Whether that was to the noise or to my voice I don’t know, but Val soon settled back to a sound slumber.
Karen was concerned at the withdrawal of food and fluids and we chatted with ‘Anna’, on of the palliative care nurses. She explained that Val’s body had started to reject both food and fluids which was one of the causes of Val’s chesty ‘rattle’.
This is, Anna advised us, quite normal, and an indication that Val’s body was starting to shut down.
I’d been up to ‘Top’ Woodham on Thursday afternoon. Val and I had attended a friend’s funeral ‘up there’ last year and Val had observed that it was a peaceful place with stunning views over the local countryside. I showed Karen the pictures and she agreed that it looked a nice place.
I also called into our local Garden Centre – ‘Meadowcroft’ – on the way home from visiting Val and met with Sharon the florist. It’s a sure sign that you spend too much time (and money) with a business when they know you by name. Sharon was heartbroken when I told her of Val’s condition; she told me that she looked on Val as a ‘mother figure’, and we hugged each other, in tears, in the garden centre.
Later, I caught up the ‘the boys’ for a couple of beers ‘down the road’, then snuggled up back home on the couch with Layla.
Saturday October 8th
I woke stupidly early on Saturday, but decided to watch the F1 qualifying from Japan, so was showered and dressed before seven. Layla needed a ‘mani-pedi’ – I’ve neglected her a little of late – so I whizzed her up to see our vets; a nine o’clock appointment after which I drove down to Pitsea. I caught the 9:25 train and was at Bart’s by 10:40.
I walked into Val’s room to find her awake, and she recognised me.
That smile and “Hello honey bunny.” lifted my heart.
In the next couple of hours we chatted, although her voice was slurred, she managed to speak to both Karen and Gary on my mobile – a rare occasion when I was able to get a signal in her room.
I spoke to Harriet the doctor and she cautioned that the slurred speech reinforces their thoughts that Val’s brain is under attack and that the long term prognosis is still grim.
She smiled a sad but knowing smile, and suggested we make the most of this unexpected interlude.
Val became increasingly restless and agitated as the day progressed, but the nurses – at the second attempt – made Val comfortable and I left her dozing.
I did some shopping on the way home, met Jeremy (who is going through his own crisis, he needs an MRI scan on October 17th for a suspected brain tumour) for a couple of drinks,. Then when home I cooked up a batch of ‘Bolognese’ sauce for the week ahead, and did the laundry.
Despite the chilly, overcast weather, it had been a sunny day.
Sunday October 9th
I woke early, as usual, I’ve not had problems crashing out at night, but tend to wake at about four, which isn’t helpful. I made myself a cuppa and watched the Japanese Grand Prix on the iPad. Then, after showering and getting dressed I spent half an hour online (unsuccessfully) trying to get Glastonbury tickets for Karen. I was also deliberating how I was going to get to Bart’s – there were no underground services running anywhere near Fenchurch Street and no trains into Liverpool Street. Karen suggested getting a taxi from Fenchurch Street and that’s what I ended up doing, arriving at Bart’s just before eleven.
Val was awake, and reasonably lucid, although it was sometimes difficult to understand what she was trying to say.
She did say that she would like a glass of wine in the conservatory.
Karen and Bill arrived sometime after one, their journey into London had been as tortuous as mine. They chatted to Val, and then we chatted as she dozed. I left Karen and Bill with a dozing Val at about two thirty and headed homeward.
I know in my heart that Val’s overall condition hasn’t changed, but – by waking – maybe expectations and timescales have now altered. We will have to see what the professor says on Tuesday.
Back home it was a case of ironing last evening’s laundry then heading down the road for some social networking.
I had some good news to relate.
Monday October 10th
We knew that the weekend had been a bonus, so while it was a disappointment, it wasn’t a surprise to find, when I arrived at the hospital, that Val’s condition had deteriorated. She was more confused and appeared to be in more discomfort.
I spoke to a specialist – a different Sarah, but one who’d treated Val earlier in her stay – and she said that temporary improvements like we’d enjoyed at the weekend were not uncommon. Sarah also shared my concerns regarding Val’s discomfort and prescribed increased doses of both Morphine and Medazalan in the syringe pump.
I would rather Val be sleeping and in no pain than otherwise.
After Val’s comment on Sunday I’d bought a small bottle of Chardonnay, but her deteriorating condition suggested that she wouldn’t be drinking it.
Tuesday October 11th
The end was inevitable, and not unexpected. The hospital called me at about three thirty to report that Val’s breathing was becoming laboured and that they didn’t expect her to see out the hour.
They called an hour later – I was already driving to Wickford for the four fifty train – to advise that she’d passed peacefully. I walked in to the ward at six, and found Val laying peacefully in bed, no tubes, no laboured breathing.
Karen and Bill arrived at about eight and said their farewells, I spoke with the consultant and then said goodbye to the nurses. They had all been so very kind to Val over the last four weeks – it was strange and scary to think Val had only been at Bart’s for four weeks.
Karen, Bill and I then walked over to ‘One New Change’ – a chic shopping plaza near St Paul’s- and found a restaurant for a reasonably healthy breakfast. They then headed home across the Millennium Bridge while I walked back to Liverpool Street.
I called into the funeral directors on my way home, places to go, people to see. We can’t do too much until we have the necessary papers from the hospital, but the hospital phoned later to confirm that the papers would be ready for collection on Wednesday morning.
I’d earlier posted news of Val’s loss to my friends on FaceBook and received over 150 replies, messages of support. Karen and Gary did the same, with similar reactions, it’s exactly a month since they’d lost their father, they’re really going through the wringer.
Much of the afternoon was spent doing admin stuff, re-registering, insuring and taxing the car in my name, and phoning Val’s friends and families in Liverpool.
In the evening I went ‘down the road’ for a few drinks with friends and, despite having assured everybody that I was taking care of myself, I skipped dinner.
It had been the toughest day of my life.
Wednesday October 12th
Overnight, I slept the sleep of the just, waking at about five thirty, that’s good for me.
I had a mid morning appointment at Bart’s to collect the necessary paperwork, I then had to register Val’s death at the Guildhall, as she’d died in the City environs. It was my first visit to the Guildhall since I gained my Freedom of the city, on Val’s birthday back in 2005.
I arrived at the hospital at about eleven, having called in to a branch of ‘Hotel Chocolat’ en-route to get a ‘thank you’ box of chocolates for the nurses on the ward. One nurse commented that they’d never received ‘posh’ chocolates before; I figured it was the least I could do after all the care they’d shown Val.
She, and they deserved more than a tin of ‘Quality Street’.
I then headed over to the hospital’s ‘bereavement department’ to collect the necessary paperwork, then over to the Guildhall to meet the registrar. It was all sorted by just after mid-day and I wandered over to Spitalfields for some lunch, caught the train back to Chelmsford and did some errands.
I also called round to see John and Steph Scott for a cuppa and a chat. Steph is a fellow Conservative City Councillor and I count both she and her husband John to be good friends; we enjoyed John’s seventieth birthday bash a week before Val’s.
Back home I made some calls and started sorting through paperwork in the safe.
Then a quiet evening on the sofa with Layla.
Thursday October 13th
I was wide awake at 3am with a thousand and one things rattling round my head. I made myself a cuppa and watched something on ‘catch up’ on the iPad.
I guess my sleep patterns will be shot to hell for a bit.
The rest of Thursday was a case of making phone calls (SAGA, BUPA, Good Housekeeping – cancelling Val’s subscription), and downloading various forms (probate, National Savings and so on).
It was my first day home since taking Gaz to Heathrow over two weeks ago and I didn’t leave the house. Layla was quite confused, but enjoyed a snuggle on the sofa in the evening.
What I have learned, having regularly teased Val that she watched crap on television, is that there’s a heck of a lot of crap ‘out there’ beyond the soaps that Val used to watch. I find myself watching ‘box sets’ on the iPad with the TV turned off.
This evening’s viewing was a couple of episodes of ‘Lucifer’ on Amazon, a bit of fun, loosely based on a premise by Neil Gaiman, one of my favourite authors.
Friday October 14th
I had a ten o’clock meeting at the funeral directors’ to sort out arrangements, choice of casket and so on. Karen and I had discussed a wicker casket rather than ‘veneer’, less polluting, better for the environment and all that. Val and I had already discussed music, so that was less difficult.
Unfortunately the vicar is on vacation in Kenya for a couple of weeks, but we’ll have time to sort the order of service when she gets home.
My mate Alan (ABJ) popped round with a card, we enjoyed a cuppa before I had to go to the local newspaper to sort out a ‘press release’.
I spoke with both Karen and Gary, I think they’re coping well, although Gaz is struggling a bit, being three thousand miles away.
Then it was down to more admin and notifying people.
We’ve received literally dozens of cards, and a nice letter from our MP – which was unexpected, but very nice.
I snuck down the road for a couple of beers, then back to ignore the crap on TV.
The date for the funeral’s sorted, we just needed to sort Val’s final resting place, but that was less urgent.
Saturday October 15th
This will sound really corny, so bear with me.
Chelmsford recently opened a new shopping precinct – Bond Street – ‘anchored’ on a new John Lewis store. Val had actually received an invitation to a preview evening while in hospital and was disappointed to not have been able to attend.
I figured that, had Val been home, she would have wanted to visit, so I decided to give it a go.
The corny bit is that “it’s what she would have wanted”, but I recognised that my visit was much cheaper than had Val been with me.
Then home a few more forms to fill in and inevitably, laundry.
Sunday October 16th
Sunday was a lazy day, maybe life’s getting back to normal, or at least my new normal.
I went round to Tricia’s for a coffee and a chat – Tricia is a good friend and fellow City Councillor, she’s also Mayor of Chelmsford this year.
I also received a few texts from ABJ who had been taken into hospital, he’d had some stomach problems of late, but they’d been identified as stomach ulcers, which was (hopefully) less serious than we’d feared.
I returned home to a bit more form filling and, in the afternoon I sat in the conservatory; Val had commented – the previous Sunday – that she would have liked a glass of wine in the conservatory, so I enjoyed a glass on her behalf.
Then, down the road in the evening. I saw two foxes on my wander, which is nice.
Monday October 17th
Another part of ‘back to new normal’ was the corporate 8am Monday call and then ‘stuff’ to do.
I took some time out to pop into town to take some of Val’s clothes to the funeral directors, and spoke to the local Village Hall about the Wake.
Things are starting to get sorted, I guess my life will start to get ‘back’ to ‘new normal’.
I guess that’s it, for now.
Thanks for bearing with me.
I visited ABJ – Alan Bryant-Jones -on November 5th, his two carers were also visiting. He told me that the specialist had told him that “We’ve seen something in the MRI and we’re going to go in and take a look. It might be something nasty.”
They operated the following day and removed a metre and a half of cancerous colon, this had clearly been going on for some time, and they said that the cancer had spread to his lungs. He was on a ventilator in the High Dependency Unit (HDU) when I next visited him.
I visited a few times during the week, and then was ‘summoned’ – along with his two carers – to see him on the evening of Monday November 14th; by now he was in the Intensive Care Unit.
“I don’t understand what’s happening.” He said.
“Yes you do.” I replied.
“Well, tell me straight.” He said, through the full face oxygen mask.
“They removed most of your colon. It was cancerous, and the cancer had spread to your lungs. The oxygen mask is keeping you alive, as your lungs can’t cope on their own.”
He thought for a moment, digesting this information.
“So, what are the chances of me taking this mask off and going for a pint somewhere?”
I shook my head.
“It’s not going to happen, mate.”
“Okay,” he decided, “call the doctors. I’ve had enough”
And he took off the mask that was keeping him alive.
I’d spent too much time in hospitals of late, and understood most of the various numbers displayed on the monitors. His SAT (Oxygen Saturation) dropped over the next couple of hours from 98% to about 45% and he dropped into a deep sleep.
The doctors kept him topped up with sedation and pain killers through the night.
At midnight I called a Chaplain and we said a few prayers over Alan. He came close to the surface and grumbled when she recited the 23rd psalm, but I think that was his objection to the ‘new’ words.
That was the last conscious act we saw.
By next morning, as the ITU lights came back up, much like an overnight flight, the nurses suggested that I should go home as Alan could linger in his current state for days, and they would move him back to ‘HDU’.
I called a few times during the week, and was advised that Alan was unresponsive without medication – so effectively his body was on auto-pilot.
I received the inevitable call at about 6am on Thursday November 17th, Alan had passed peacefully.
Alan was an only child, with no surviving relatives, he was divorced in 1982, and his will read “I leave everything to my good friend Bob Massey to dispose of as he sees fit.”
No pressure there then?