Sorry we’re late with this week’s blog, but we’ve been kept very busy with R and R.
Is that ‘Rest and Relaxation’ or ‘Repair or Replace’? It really depends on how you look at things. Take this past week for example…
Le Creuset are a well respected brand for cookware, and they are certainly not cheap. So you can imagine we were a bit taken aback by a fairly loud bang while Val was simmering something gently on the new induction hob. We couldn’t find the cause and so put it to the back of our minds… until, two days later the bottom plate fell off one of the pans while cooking. It took a bit of nimble handywork to move the offending plate without burning fingers. So Val phoned Le Crueset who were very surprised – they asked us to send it back freepost so they could examine the offending item and provide a replacement.
Our enjoyment of Wimbledon was a little bit hampered when the TV soundbar began emitting sounds like a demented giant wasp on steroids. So a quick call to Richer Sounds was needed. Initially they wanted us to take it off the wall and return it to the shop where it could be examined and possibly sent away for detailed testing, but they agreed to get the chap who had installed it to bring us out a replacement and swap them over. So that should be happening in the next few days.
Friday night (Saturday morning, really) we were awakened by a bright flash and a very loud thunderous crack at around 5am. We noticed that the bedside clock was no longer illuminated and assumed that the circuit for the upstairs sockets had tripped. When we got up in the morning we found we were right, both the upstairs and downstairs sockets circuits had tripped. So we reset them and everything came back online. But we noticed all of our mobile devices were having trouble connecting to the internet – after breakfast Jimmy headed upstairs to the the study/office to sort things out… alas, even digital Jimmy couldn’t fix it, and he therefore rang PlusNet customer services.
After a 35-minute wait (it was OK, an 0800 number) he got through to support staff who went through various tests involving unplugging and re-plugging varios power and network cables, replacing network cables with spares and much crawling about and stretching under desks – not the most comfortable of ways to start the day considering his tumours and pain in much of his abdominal region. They noted that our internet connection had dropped at around 5am (the exact time of the thunder and lightning) and suggested that a lightning strike somewhere had fried part of the innards of the BT modem. Given the very high volume of reported faults their normal turnaround time of 72 hours was likely to be up to 5 working days. If, after that time they couldn’t provide an external fix an engineer would call to arrange a visit to swap out the modem and assess any damage that might have been done elsewhere.
Saturday evening we noticed our wireless telephones were misbehaving, apparently unable to communicate with the base station (in the dining room). Sure enough there was no power to the base unit and no dialling tone on any of the wireless handsets. Luckily the handset connected to the main point of entry (in the office/study) still works, so we can send and receive calls from there. On closer examination Val found an area of the external cable connecting upstairs phone to downstairs phone seemed to be stripped very cleanly of its outer sheath… hmmm… doesn’t sound good. So, that may well be a costly replacement/repair. Does house insurance cover lightning strike?
So much for ‘Repair or Replace’ – what about ‘Rest and Relaxation’?
It’s been quite a busy week. On Monday we visited St Oswald’s Hospice in Gosforth for a relaxation session. Unfortunately it didn’t quite hit the mark. The background ambient music and soothing sea sounds were anything but – one of the group members is almost deaf, so the volume was cranked up to the point where it sounded more like a raging storm with giant seabirds swooping down to attack and carry off unsuspecting small children and pets. We came away feeling more stressed than when we walked in!
Tuesday saw us at Wansbeck Hospital for our long awaited appointment with the dietitian getting some pointers on how to keep Jimmy’s weight up as his appetite is completely shot. Little and often is the motto and basically eat all the stuff that is ‘bad’ for you (cakes, biscuits, double cream, etc). We followed that with a visit to friends Jim and Allyson in Hebron and we had a lovely time sitting out in the garden. After being very well fed and watered Jimmy needed to lie down so he flaked out on a sun-lounger… aaah, relaxation indeed (and, no, he didn’t get a tan).
On Wednesday we visited Pete and Rachel in Morpeth and then drove through to Prudhoe to meet up with Jimmy’s sister. We hadn’t seen her for quite some time and it was good to catch up. We also popped in to a local pub for old times sake, but this time it was coffee rather than beer or lager (or whatever we used to drink in those days).
We were back at St Oswald’s hospice on Thursday – this time it was Reiki (for Jimmy) and a massage (for Val). We both felt somewhat relaxed and refreshed afterwards, and we’ve got another five weeks of that to look forward to. But we’re still not sure about the group relaxation sessions on Mondays – we’ll probably give them a miss.
The weekend as been spent in the company of Anthony John as we’ve worked further on the DVD project. He has been going through all the source material we have amassed and writing script and additional commentary etc. We’re also part way through designing the artwork for the DVD case sleeve insert. The whole thing is taking shape very nicely. Watch this space as they say.
Jimmy was getting some new pains, separate from the obvious abdominal pain that we’ve come to expect. Angela, our Macmillan nurse said that this is ‘referred’ pain. Basically, nerve ends are being jostled a bit as the tumour grows and pushes harder against things. So, an additional painkiller has been prescribed and it seems to be working out OK so far.
No major changes to report – some good days, some not so good, but plenty of R and R to keep us going.
Jimmy & Val (jiva)
Over the last few months we’ve had our share of not-so-good days, but then there are good days, and then there are better days. And, do you know, the not-so-good makes the good and better even more special.
We’ve been busy working on Anthony John Clarke’s DVD project, editing audio and video files and producing some early rushes for him to see how it’s progressing. We have lots of material to work with, and the difficult part will be deciding what to leave out! (There’s a limit to how much can be fitted on a single DVD disc.)
Monday and Tuesday saw us visiting two local hospices, St Oswald’s and the Marie Curie Centre – don’t worry, Jimmy hasn’t been hospitalised – we were asked if we’d be interested in complementary therapies… relaxation, massage, reiki etc. So we got an appointment for an assessment visit, Jimmy was given a short reiki session and we’re both booked in for our individual sessions for the next six weeks. And, yes, we have been checking out their full time facilities for when we will eventually need them, but we’re in no rush!
Wednesday was a rest day for Jimmy. The morphine wasn’t doing it’s job of pain relief as effectively as it has been in the past, so we decided to take things easy with plenty of time set aside for cat-napping and lazing in front of the best that that BBC iPlayer had to offer on TV. [Edit: After chatting with our Macmillan nurse, she advised that we increase the morphine dosage… and that seems to be doing the trick.]
It was great to see Allan Taylor on Thursday – he drove up from Leeds to spend some time with us, catching up with everything, chilling out, and Val preparing a lovely lunch too! Naturally we talked a lot about music and guitars and it was really good to have him play some of our family of guitars. We enjoyed hearing the unique Allan Taylor style blend with the distinctive Taylor guitars sound. It’s amazing how different players manage to stamp their own individuality on any instrument. We’re fortunate to have the triple-A treatment from three of our favourite players… Allan Taylor… Anthony John Clarke… Andy Higgins.
Most of Friday was spent editing video files and applying the occasional special effect. It’s very satisfying to see a few minutes of quality video develop from editing and merging three sound sources, six or seven video clips, and self-designed custom graphics. Nice work if you can get it!
And Saturday was one of those even better days. We started off by combining rest and relaxation with work – we say ‘work’ but it’s fun to do, challenging and fulfilling. We decided to revisit the storyboard of Anthony John’s DVD and see if we could script the first 10 or 15 minutes worth… but, but, but… we did it away from the computers, making notes on Jimmy’s Note 12.2 tablet while relaxing peacefully sitting up together on our bed. And that approach seemed to work. We think we’ve got something worth pursuing – watch this space.
Rested and happy we headed off to the Davy Lamp Folk Club at Washington to see Cathryn Craig and Brian Willoughby – what a super night! We are fortunate indeed to count Cathryn and Brian as friends, such lovely people as well as excellent writers and performers. Treated to front row seats we had an evening to treasure. They gave two wonderful sets, including our favourites “Two Hearts, One Love” and “These Dreams” as well as a wonderful new song “Soft Place To Fall” (and too many others to mention individually)… but, unbelievably, they included our very own “One More Song” and invited us up on stage to sing it with them. How special is that… we were at a loss for words, and shed a few joyous tears after the show. Thank you for a wonderful evening and we wish you safe travel and a great time back in Nashville.
Jimmy & Val (jiva)
Well, the new TV is installed – but we’ve been so busy we’ve not had much time to watch it… though we have played about with some of the bells and whistles and can report that it’s all good stuff. Not only does it give a brilliant 50-inch picture but it also has an internet browser, a media player for videos and photos via USB, but we can also stream our entire mp3 music collection (downloads – legal and paid for – as well as our entire CD collection ripped to mp3) from mobile devices via the Amazon importer and player.
And the new induction hob has at last been installed in the kitchen. After delivery delays and inability of Curry’s KnowHow team to do the installation our new-found favourite electrician came to the rescue – new wiring, floorboards up and a new switch and junction box too. And Val loves it!
We’ve also been out visiting, catching up with friends… sharing stories and reminiscences, and even playing “The Chief” (Val’s old Taylor 810CE Guitar) now under the proud ownership of John Jeffrey having previously been bought from us by Fool’s Gold.
And we’ve had the pleasure of the company of Anthony John Clarke, his wife Julia, and Elizabeth van de Waal. It’s been great to chill out, share some laughs, and talk through some serious issues. We also took the opportunity to revisit Anthony John’s DVD project, do some more filming and audio recording, and have a whale of a time doing it.
Their visit culminated in Anthony John and Elizabeth van de Waal at The Davy Lamp Folk Club in Washington last night. What a superb night. Not only did they perform some of Anthony John’s well known songs but there were also songs from his new CD “Beyond Karaoke”. The icing on the cake? Anthony John performing for the first time a song which was written by Jimmy a few years ago, but never added to our repertoire – “Road Song”. It was wonderful, and brought a few tears to our eyes. And the second layer of icing on the cake? Anthony John finishing his second set with our “One More Song”.
To hear the whole audience joining in had us crying again! An evening we won’t easily forget.
Not much to report this week, except another visit from our Macmillan nurse, with more decisions to be made for the months ahead and some appointments scheduled for next week.
Jimmy & Val (jiva)
It’s been heartening to receive so many messages from people encouraging us to keep blogging, and spreading the positive thoughts when we can, and providing health status updates… and so – with your permission, we’ll carry on, but with a slight change. Initially the plan was to leave all the medical stuff till after the watershed horizontal line that can be found in recent blogs but we hadn’t bargained for how much of our time and effort and waking thoughts would be filled with the stuff – so it is becoming increasingly difficult to keep health issues totally separate from the rest of life. Our life and routine are dominated by things related to pain management, medication, diet, tiredness, appointments, phone calls, therapy, sleep (lack of or too much), health visitors, doctors, nurses, etc that it would be extremely difficult to write more than a few sentences without reference to to that kind of stuff. So things will probably end up being jumbled together – a bit like our minds these days… apologies in advance.
However, this week, we have managed to keep the heavy stuff below the line.
People are funny – not always funny haha, some are funny strange, and others just oddball. But isn’t it nice when people are nice, when they go that extra mile even when they don’t have to. It makes up for the times when you sometimes think that people are selfish or arrogant or downright rude (sometimes all of at once).
We had an electrician around recently to quote for a job, and we were happy with the quote. When he came to do the job he found some bits didn’t need replacing once he’d dismantled the previous stuff and he reduced his charge accordingly even though he had come prepared with all new bits. Nice, genuine, honest chap (and tidy worker too) – so we enquired about another job in the near future and agreed a good price for that too. It can be difficult finding good tradesmen/professionals these days, so it’s good to have someone on hand whose work is excellent, whose prices are good (and anyone who calls Val ‘Flower’ must be all right).
And then there was a district nurse who unexpectedly popped in to check that we were both OK and to see whether there was anything we needed – lovely lady, but her Scottish accent combined with the speed at which she spoke meant we had to keep asking her to repeat things… quite comical, even though we were talking about heavy subject matter… health deterioration, home hospice or dedicated hospice care etc. So having patiently whirlwinded through things numerous times she left, promising a return visit in a few weeks. Phew!
Wednesday saw us spending a large part of the day in Jedburgh – an invite to hang out with toast and tea in the hot sun was a lovely break from the norm, and just what the doctor would have ordered. So good that it should be available on the NHS. We included a bit of computer health check and surgery, some laughs, some deep discussion and the chance to admire another CD artwork project in its finished state… boxes of CDs, and lots of albums already packed in envelopes ready to boost the Post Office coffers. Due to Jimmy’s condition we couldn’t stay long but it was a lovely day which fortified us for what was to follow.
After deciding we needed more time and more discussions before deciding on the chemotherapy vs no chemotherapy question we drove to the hospital on Thursday feeling like naughty children heading worriedly along the corridor to see the headmistress. Afternoon appointments in hospitals are always subject to delays due to emergencies and over-running of previous appointments, so we weren’t surprised at the 55 minute wait for what turned out to be a 10 minute chat going over some of the same ground we’d covered previously with one important addition… the effects of chemotherapy would be cumulative week on week on week with a slight respite every fourth week (ie no treatment that week). OK then, decision made, boxes ticked, I shook hands with the consultant and stepped out into the corridor a bit light headed. Our specialist nurse was very caring and understanding and concerned how Val and I were both feeling and encouraged us to call any time if we want/need to go over anything again.
Friday was a bit of a mixed bag. We’d had a an early morning chat with our Macmillan nurse about lots of things – everything from complementary therapy, hospice care to pain relief and the effectiveness of current medication. It was decided to double the morphine dose as the previous level wasn’t working as well as had been hoped, and so Jimmy opted to stay at home and dose/sleep off any initial effects while Val drove off to do the shopping on her own. A strange experience for Val, knowing that Jimmy was alone at home having an equally unfamiliar time of being on his own. But that was soon remedied when Jimmy’s sister Anne and husband Max called in for a cuppa. Anne had taken a day’s holiday from work and travelled up from Northampton to lay flowers on some family graves and to catch up with us. We chatted a lot about families and life in general and aspirations and plans… and, sure enough, there was plenty of discussion regarding cancer and short and long term effects on all concerned. But, thankfully, it wasn’t the be all and end all of the conversation even though it hangs there in the air, never far away, always at the back of our minds.
Saturday was a bit disappointing in that the new cooker hob arrived (6 weeks after paying for it and for installation and removal of the old one), but all was not well… “Sorry mate, can’t fit it. Your existing wiring/box needs replacing so you’ll have to get your own electrician to do that.” Ho hum, not the delivery team’s fault but we were a bit miffed to have waited that long and, to add insult to injury, the price had been reduced between us ordering it and taking delivery! Undeterred, Val phoned customer services of the retailer and, after two attempts, got them to agree to let us have it at the reduced price and a full refund of the fitting and disposal charge. So Val contacted our new friendly electrician and her flower power resulted in him somehow finding a slot to take a look and hopefully do the job next week. We have a sneaking suspicion that our 10 year old fusebox/board may need to be upgraded (and that might be expensive)… ah well, it’s only money.
Val does quite well at standing her ground and getting companies to back down – she did the same thing with our new TV installation. You may remember we ordered a new TV and soundbar for the bedroom and paid everything up front, including installation charges. When contacting them to confirm installation they said they’d not charged us for the wall bracket and so we’d need to pay for that before installation. Val joked that they could be generous and knock £20 off the bracket price as it certainly wasn’t our mistake… and sure enough they did. We got to thinking about the day in the shop when we bought the stuff and we distinctly remembered the chap who was extolling the virtues of different mounting brackets being asked for the price by the chap behind the counter who was efficiently ringing everything up on the till. We’re certain the response was along the lines of “Don’t worry about the exact hardware price, we’ll adjust the installation fee to include it”, and that’s what they did. So Val rang back to explain, and they agreed to go along with that and also that their installation fee would now cover all charges (hardware and labour) for the aerial installer too even though we had been expecting to have to pay the third party aerial installer separately… Flower power strikes again..
You lose some, but then again you win some too – we’ll settle for breaking even.
Health update (the heavy stuff):
Well, after much debating and soul searching we have decided against chemotherapy for Jimmy. Some will be surprised that we’ve chosen not to have weekly visits to hospital to have the drugs injected as they probably believe that any treatment which might add a few days or weeks to lifespan should be taken. Others will be of the opinion that chemotherapy might be so bad as to make the remaining weeks/months unbearable. And many many others will have no idea how they might possibly choose if they were in that position.
First and foremost, there is no cure for Jimmy’s condition. There is no light at the end of this tunnel. The cancer has spread so far throughout different organs and tissues that surgery is totally out of the question. Even if chemotherapy could reduce the tumours, it can not do so to an extent where operations would be possible.
So for us, the decision is about quality of life rather than longevity. In reaching the difficult decision we’ve tried to balance the possible slight benefits against the very likely side effects and impact on quality of the time remaining. And we want whatever time we have left together to be the best we can make it.
It is a frightening prospect, but now we have made the decision it is one less thing to worry about, one less dark cloud hanging over us and demanding attention. We have enough to think about right now.
Although some days are worse than others, and there’ll be more of those days to come, life is good… and we want to keep it as good as we can make it for as long as we can.
Jimmy & Val (jiva)