14-Jun-2015 Flower Power

snoopyIt’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.

keepcalm-flowerpowerSaturday 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.


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