Tuesday 4 February 2020

Bruce’s funeral

I would like to thank all the followers who have posted kind comments to the last post. I have been overwhelmed but heartened by your sympathy.

The link below gives details of the funeral arrangements. It will be a Humanist ceremony to celebrate Bruce’s life. Please do not wear black unless you really feel you must. No flowers please but donations to the Nightingale Macmillan Unit at Royal Derby Hospital would be gratefully received.


Saturday 25 January 2020

Bruce Napier RIP

I am very sad to tell all Bruce’s followers that he passed away peacefully yesterday afternoon.

He was admitted to the Royal Derby Hospital on 2/1/2020 and after a week he was transferred to the Nightingale Macmillan Unit within that hospital. We couldn’t have asked for better care. Although I and the rest of the family are very sad to lose him there is also relief that his suffering is over.

I will not be continuing this blog as I will be staying in the marina for most of this year. However I will continue Bruce’s other blog “One More Darned Boat” as I report on the build of the new boat in a slightly modified form to suit single handed living.

Best wishes to you all.

Sheila Napier

Tuesday 17 December 2019

At least the eyes are ok.

Some good news, at least, in that we went to the Eye Clinic last week to be told the the MRI of my cranium found nothing of note. The swelling at the back of my left eye is resolving, too, and my pressures are well down. It seems quite possible that the enlarged blind spot was associated with sudden peaks of BP associated with occasional fits of vomiting I’ve had when I misjudged my dietary intake.

I’m to be seen in the clinic again in three months time – if the pressures are still down (and I’m still around) it may be possible to reduce the number of eye drops I have to use.

Otherwise, we just plod on. We saw the GP Laura Saunders last week, too, for a good session tweaking my drugs. Maxine the Macmillan nurse is coming tomorrow. I want to discuss pain control with her yet again, the slow release morphine doesn’t quite last the full twelve hours, no matter how much I take, so there may be scope to add in a neuropathic pain killer to the cocktail. The hospital bed has arrived and is installed in the spare bedroom. I’ve started using it already as I’ve been having some trouble with acid reflux (heartburn) in the night which is helped by sleeping with my shoulders propped up a bit.

Sleeping apart from Sheila, together with sleeping much more these days, feels like another slither down the slippery slope but we’re blaming all the morphine for now. Time will tell soon enough but meantime we’re both sleeping rather better.

Sunday 1 December 2019

Up and down

As always, I’m starting by saying thank you to you all for your love and support, it means a lot to me.

Things are a bit quiet just now with no dramatic investigations – the next big event will be my next Eye Clinic appointment – it’s on Friday 13, but fortunately I’m not superstitious as it’s when we should get the results of the last MRI. In the meantime, I see a district nurse every two weeks and Maxine the Macmillan nurse in the intervening weeks. I see a GP every four weeks, too, so I can keep prescriptions sorted out.

It all means that queries and concerns can be dealt with without having to ring one of the various hotline numbers I’ve got.

Overall, I’m slowly getting worse, as you’d expect. It’s nothing dramatic, but my slow release morphine, Zomorph, has had to be increased a bit and I’ve had a couple of days when I’ve not got up in the morning. I won’t go into reasons, don’t want to get too clinical on here, but each time having a day in bed sorted it. Getting the diet right is the tricky bit at the moment. It’s good to try something different for a change – home made soup with a splash of cream works well, for example – but if I get it wrong my gut takes its revenge, usually several hours later.

Anyway, enough of that gloomy stuff. The other half of the family makes it across from Lincoln every two or three weeks, they were here yesterday for a few hours, and various friends from round the marina drop in for coffee or tea and a chat. What larks, eh?

Monday 18 November 2019

Chugging on

The main events of the last couple of weeks were an MRI scan of my head including one of the orbit, the area around the eyeball, and a follow-up appointment at the Eye Clinic. The scan was a bit tedious, 45 minutes with my head in the washing machine. MRIs are very noisy, so they play some music down headphones while it’s going on. You’re supposed to get a choice of sounds, so I asked for some 60s pop, but they left the previous CD of very raucous rock on for most of the time. Not that it was much better when they did change over, it was nothing like my memory of the best ever decade for pop. And yes, I was there and yes, I do remember it.

Guess what, the results hadn’t come through by the following week when we attended out patients, but the Registrar did a very thorough review of my retinas and said that although there was certainly some swelling and a bit of a bleed there, it didn’t look sinister and will probably resolve of its own accord. I’m to go back in another four weeks.

It’s always good to be able to end these posts with another example of people’s generosity. As well as a load of transport, I’m very pleased to be able to say a big thank you to Grahame and Chrissy in the Still Waters shop. The most recent supply of food supplements, the Altrashot, the Fortisip Creme and the Complan, was a bit restricted as to flavour, mostly banana with a bit of strawberry. These are all very tasty, but all the banana in particular was becoming monotonous, a touch of a Minion diet. Sheila asked in the shop if they had any ice cream sauces in stock as a way of adding a bit of variety. They didn’t, but instead presented us with the open big bottles of sauce they keep for adding to the ice cream cones. They won’t sell much ice cream now and the open bottles won’t keep to the Spring. 

I could even have had the bubble gum flavour, but Grahame correctly sussed it wouldn’t have been popular...

Monday 4 November 2019

Downs and ups

It’s been a mixed few days. I was rather poorly weekend before last, I won’t go into detail but by Monday night I decided I needed checking out. So, Tuesday morning I rang the contact number for the community team and after a few phone calls ended up with a visit from a GP Registrar who gave me a thorough checking out. He couldn’t find anything specific but on the basis of my symptoms started me on a five day course of amoxicillin. It’s not something they’d normally do in the absence of a proven infection, but in my case the risk of a trivial infection tipping over into sepsis before it’s declared itself is too high to take the risk.

In effect, I’m being treated as though immuno-compromised like a transplant or chemo patient.

Much more fun was Friday and subsequent days. I’m finding it a struggle to walk any great distance now, even though I’m a lot better after the antibiotics, so we’d talked about hiring a mobility scooter for the duration. Sheila emailed a fellow lodge owner, Dave, as his wife uses one having had a stroke. His response was not to bother hiring or buying, Lynn has a spare which I’m welcome to use for as long as I need it.

He brought it over on Friday afternoon and gave me a course on the care and feeding of mobility scooters. It’s an excellent machine, a type 3 which means it’s set up to be road-legal with a top speed of 8mph, though it can be set to just 4mph for use in pedestrian areas. With it, I can accompany Sheila and Sally right round the marina again. 

It’s just another example of the incredibly supportive community we’re living in here.

Saturday 26 October 2019

Plodding on

I’ve not blogged for a bit as I’ve not got much more to say, except, as ever, to express my appreciation of all the messages of support, love and good wishes from you all. Main developments have been establishing contact with the district nurses and the community palliative care team, formerly the Macmillan nurses but now funded by the NHS around here at least. I’ve seen Dr Cowley twice now, first off to sort my prescriptions and then two weeks later as a follow up. She’s started me on Mirtazapine, a tricyclic antidepressant which has both improved my sleep and lifted my mood a bit.  She also wrote me up for some injectables, the “just in case” meds that live in a box by my bed together with the necessary paraphernalia for giving them. This means that if I have a sudden bad do of pain or nausea, an attending nurse or paramedic can give me the needed drugs without delay.

It’s all made us feel more supported – the nurses each visit fortnightly, so I see one or other each week, an opportunity to check out any problems and to get that all important psychological support. I’ve got a whole set of phone numbers I can call in the event of having a problem, day or night, any day of the week.

The other development health wise is with my eyes. I had a routine Eye Clinic appointment the other day. As far as my pressures go, all was well and I would normally have been discharged from that clinic to the care of my optician, but unfortunately, the fields test showed that the blind spot in my left eye had got larger. If this had been both eyes and I was also having severe headaches, one would suspect raised intracranial pressure, which would be alarming. As it is, it’s a bit of a medical mystery (here we go again!) which needs explaining if possible. Pancreatic cancer doesn’t normally spread to the brain, so this is not likely to be a secondary. I’ve had the usual routine bloods, which only showed that I’m still a bit anaemic, and I’m booked for an MRI scan of my head to look for causes. This isn’t until the 7th of November. Oh well, I’ve been missing all those trips to the Royal Derby.