A Wedderburn visit to Feshiebridge to remember B

 It's almost seven months since B died, and it's been very strange getting used to the idea that she isn't with us any more. B was cremated, and we gave a great deal of thought before deciding how to look after her ashes. In the end, we decided on two destinations.
First, half of her ashes were interred in the Wedderburn family plot in the Dean Cemetery, just a mile or so from Lennox Street. The photos below were taken by Joanna's daughter Sarah. The cemetery is a lovely peaceful spot, a place where you can hear birdsong and enjoy quiet thoughts and memories.

 B's marker stone is at the foot of a rough hewn Celtic style cross which carries engravings remembering Zander's parents, known to us as Grandpop and Granny, and also Grandpop's parents, who are all buried at this spot. It's a lovely family place for us all to visit for ages into the future.

We decided to scatter the rest of B's ashes in one of her favourite places - Feshiebridge in the Scottish highlands, just past Kingussie. We arranged for a family gathering there on Saturday 20th August. Zander, Chris, Nadia, James and Kirsty came up from Edinburgh, Joyce, myself (Pete), Anna and Ella flew in from Ireland that morning, Joanna came across from Aberdeen with Sarah and Becs travelled up from Manchester with Ben. We were joined there by Auntie Sue who lives just half an hour away from here.

We knew the exact picnic spot where we used to go as a family, but this was difficult to access, with steep paths and fallen down trees, so we looked further afield, enjoying the views and atmosphere of this lovely part of the Scottish Highlands.

We eventually found a flattened area of grass close to the river's edge, and we had a family picnic here, with food provided by Sue, Joanna and Chris. Plans for a small fire to cook sausages (as we did back in the day) had to be dropped because times have changed - it's busier there now, with stricter regulations on things like fires.

 

Aunt Sue had brought some lovely sweet pea flowers along, and after the picnic, we then moved upstream to a quieter spot which overlooked some fast moving water. We gathered here together, and had our own peaceful thoughts about B while we scattered her ashes into the water, accompanied by the sweet pea blossoms. It seemed so fitting: beautiful flowers accompanying our mother into the Scottish wilderness as we said our farewells.

It was a sad time, but it was the way that we know B would have liked it to be - saying goodbye while also remembering the many happy, enjoyable episodes of earlier times.
We then gathered to take some family photos, and we travelled on to the coffee shop at Loch Insh close by, where we enjoyed coffee and tea (thank you Aunt Sue!) as well as delicious chocolate via Chris. Afterwards, we travelled back to Edinburgh together, enjoying more extended family time over meals, with plenty of chat. We set up some DVDs that Zander has had made from old cine films, watching B diving into the River Feshie nearly forty years previously.

All in all, it was a lovely celebratory weekend: one to treasure in our memories for many years.

(click on any of the pictures below to see a bigger version)

Becs, Ben, Aunt Sue, Joanna, Anna, Joyce, Ella, Pete, Nadia, Zander, Sarah, James, Kirsty and Chris

Kirsty, Chris, James and Nadia Wedderburn

Kirsty, Ben, Anna and Zander

Back in Lennox Street, Ben, Ella, Joyce, Joanna, Zander, Becs, Anna, Anna's friend Katie and Sarah

Sarah, Pete, James and Ben

Sad news about B

B, a beloved, remarkable, beautiful woman, died last Sunday after five years in a care home with Alzheimer's. Soon after, Zander sent out this email to friends and family: 

" B died at 7am this morning. The care home phoned me at 0230 and again at 0530, so I went in and sat beside B. She was very peaceful, breathing gently and at 7 her breathing stopped.A good life and a peaceful end". 

We've set a date and time for B's funeral - see the link below from today's Scotsman. We'd love to see any of you there if you are around and free, but please don't feel that you need to travel big distances to join us - through the miracle of social media, we all feel connected to folk anyway.
After the celebratory memorial service, there will be sandwiches and coffee in the Undercroft Cafe beneath the church.
We all really appreciate the support and messages that everyone has sent us: it's been a difficult time and it helps to know that folk out there care.
With love from us all, Z, C, P, J, B.
++++++++++++++
WEDDERBURN Bridget Mary
(nee Johnstone) (Edinburgh)
On January 10, 2016, B, beloved wife of Zander, adored mother of Chris, Pete, Joanna, Rebecca and much loved Grandbee of Anna, Cameron, Ella, Tom, James, Kirsty, Sarah, Ben. A private funeral will be followed by a public Memorial Service at St Andrew's and St George's West Church, George St, Edinburgh, at 1 pm, on Friday, January 22, 2016.
++++++++++++++
The announcement was posted in today's Scotsman.

In her memory, here are a few pictures of the one-and-only B :-)

Pete's trip to Edinburgh Wed 20th to Sat 23rd May 2015

I've just spent 4 days with Z  in Lennox St and I'm just writing a brief diary of my time there, with a few photos.

Z is in great form, and in good health. His only issue has been a chronic sore back which is why he went to his GP on Tuesday, the day before he arrived, and she had arranged x-rays. We went back to her on Friday for the results, and it was GOOD NEWS!

The quiet worry had been that a sore back could perhaps be caused by some sort of spread of cancer but there is no sign of that at all - instead he just has the normal wear and tear of an 80 year old back. So nothing much to worry about - she says he can take paracetamol 500mg ,2 tablets four times daily, if he needs to. But he says he doesn't really need them so we'll see. She also suggested a physiotherapist to help with his back and with general exercise so he is on the NHS list but I think he should just go with a private physio -there is one on Comely Bank who even does house calls. Z still insists that he wants to live forever, so I've been telling him that if wants it that much he will have to do some regular exercise.

That blooming curling game on the computer is so addictive that Z spends ages doing that. Mind you, he enjoys it a lot and it was a bad sign when he stopped doing it. AND it IS quite fun when you get in to it :-)  Certainly much more fun than sit ups or burpees or star jumps.

Anna came over for the day on Thursday - she had missed Z's 80th due to exams, and she hadn't seen him for ages, so this was a good opportunity. We went to see B (who gave a big beaming smile when Anna moved into her vision) and we then went on for lunch at the Scottish Parliament. We then sat in on a debate about the changes being introduced in the wake of last year's referendum to give Scotland more powers over its own finances etc. It was boring though: politicians monotonously reading out a typed up script. Still, it was a memorable visit.

The girls love Zander's breakfast choice: sickly sweet refined cereals like Curiously Cinnamon, not to mention Cocopops and others. What happened to healthy eating with muesli and whole grain stuff and fruit? Come back Nadia, all is forgiven!

But wait, what's that? Yes, it's an extra-large organic free range egg, boiled for 5 minutes to soft perfection every morning, as an instant antidote to Nestle's "healthy nutrition".

On the Saturday morning before I left, I went for a lovely run along Princes St to Carlton Hill, where Z reckons they ought to have built the new Scottish Parliament.

I took a few photos with my phone as I jogged by - it was a classic Edinburgh blue skied sunny day - isn't it the most magnificent city?

Then back home to join Z to drive to his church, where they were having a debate today. Z's red-nosed car gets comments all the time: something to do with red nose, red car I think.

This was the debate (see below) - very relevant in the post-Christian world, as they referred to it...

Richard Holloway was the chair - he is the ex-Bishop of Edinburgh, who now calls himself a Christian agnostic. He summed up his personal belief very clearly: he believes that we are more than just chemicals - that our brains are "chemicals plus something transcendental". I got the sense that he believes in God still, but that he is very honest about it, and he can't help having some doubts.

The chap pictured below is Tom McGuire, a humanist/ secular celebrant of  naming ceremonies, weddings and funerals. Astonishingly, in 2015 for the first time, there will be more Humanist weddings than Church of Scotland weddings. It's a sign of the times.

I had to leave before the debate finished, which was a shame. Sad to leave: planning my next trip to Edinburgh and Z already...

Pete's visit to Z in Edinburgh on Wednesday 25th March

I had another good visit to Edinburgh today. My ridiculously early flight (alarm set for 3.45am) meant that I was at Lennox Street by 9am, greeted at the door by Nadia. We had breakfast together, then Zander awoke and joined us. His own breakfast place had been beautifully laid out as usual by Nadia.
After breakfast, Z and myself had a short snooze before heading down to the Western General Cancer centre where we had an appointment with Dr Phillips at 10.30am. We have seen him before, and our visits seem to alternate between Dr Sorcia Campbell and himself: they both know Z's case well.
Dr Phillips started, as all consults seem to, by asking Z: “How have things been?”
Z was clear that there has not been much change “Very steady, have put on a tiny bit of weight (0.2kg, which is better than losing weight), sleeping a lot.”
He has gone from 62kg to 62.3kg, so this is pretty much unchanged.
He then talked about his appetite – "I have to make myself eat but I am managing - soup, moussaka, fruit, chocolate brownies"
He said that he had no difficulties swallowing but his energy levels are low – he's sleeping a lot – "12 hours at night, and 12 hours in the day time".
Z then asked the critical question: "Have I got a tumour or not?", and Dr Phillips explained:
The CT in January scan showed that there was thickening of of his gullet around the site of the tumour but this could have been caused by scarring after the radiation treatment. Even in patients that do well on radiotherapy, the gullet tends to look different on scan. Another scan is unlikely to tell whether or not some tumour tissue is there, and the only way to get more information is to do endoscopy and if necessary take biopsies. This is not the most pleasant of things to have done. Z had it done while conscious last time, but some have a general anaesthetic. If Z was very keen to find out exactly what's going on, endoscopy is better than a scan, because the scan finds it difficult to tell difference between tumour tissue and post-radiation scarring.
Dr Phillips felt that Z is now fit enough to have endoscopy but is aware that he has been a bit fragile recently and any test could be a bit traumatic, and could set off a reaction that is better avoided. It could be a bit like the fall on the ice after curling: it could set him back, and put him back into hospital for a while. Dr Phillips'  gut feeling was that he would avoid a scan just now because it would be an imposition on Z and it would not change what should or could be done for him, especially as swallowing is not an issue for him. (If that was the case, then they would be more likely to do scan because they would want to work out the best way of dealing with it.)
At this stage, most of effect of radiotherapy should have passed. Z's ongoing tiredness is probably several things – radiotherapy, poor appetite, weight loss, having been in hospital. Blood tests showed that liver, kidney, thyroid were all fine so these are not causing tiredness. His haemoglobin was 12: slightly low but not low enough to cause symptoms.
 

Dr Phillips said that the main aim should be to optimise his nutrition.... and he suggested drinking full fat milk. A dietitian called out to see Z and Nadia last week and she also had some ideas: extra snacks in between meals etc. Another idea is that Z should see feed like medicine that needs to be taken rather than an option to take or not, depending on his appetite.
Z has been on prednisolone (steroid) tablets but these are just finishing off now. He did not feel that they made much difference to him, and Dr Phillips seems happy to let them stop.

The biggest concern is that it is nearly 4 months since the end of Z's radiotherapy and he is not yet back to normal. Generally after 6 – 10 weeks people improve in general well being and that lack of progress is a bit of concern. Frailty is an increasing issue too.

So that was it: the next check up with the oncology team will be in 7 weeks, on 13th May. 

 James was in good form - enjoying local school

Zander's fridge - hmm lots of low fat yoghurt!

Update & Correction: Zander is going home from hospital today!

Changing stories about Z's stay in hospital

Zander texted me at 6pm last night to say that they had just told him he could now go home. This was rather confusing for us all, in that we were told on Wednesday that he was staying in for three weeks. So what's going on? I spoke on the phone with his consultant geriatrician, Conor Maguire, and it seems that there has been a bit of a miscommunication/ misunderstanding.

Wednesday's story

I asked his oncologist, Dr Sorcia Campbell, how long should he stay in hospital? She said at least until at least his weight had stabilised and his general energy levels had improved. He should focus on getting more active etc and eating well, physiotherapists, dieticians, occupational therapists etc.

When I asked her what her plan was, she said "to keep Z in hospital for about another 3 weeks, then to spend a week at home, then to come back for another review appointment (4 week from now i.e. Wednesday 25th March)."

Friday's story

I spoke on the phone to Dr Conor Maguire, the consultant geriatrician and the man in charge of Z's stay in the Acute Assessment Unit in the hospital. He said that yesterday, Z had an assessment from a physiotherapist and an occupational therapist. They decided that he was able to go up and down stairs unassisted, and he was able to carry out basic daily activities unassisted, so yes, he could go home.

The misunderstanding

Dr Maguire seemed a bit frustrated that Dr Campbell had said that Z would be in hospital for another three weeks, since that is not her department or her decision, and she had apparently not been told that this was going to happen.

With hindsight, he agreed that it would have been better if he had had a conversation with Dr Campbell before our oncology consultation, or if Dr Campbell had said "I am really not sure how long he will stay in for - that's up to Dr Maguire's team to decide". She was right to say this: he would stay in "until his weight has stabilised", and indeed, his weight has stabalised (see below). 

The only misunderstanding was over how long his stay would be. 

I think it's better that he's going home, in any case.

Zander's weight

We all know that losing weight can be very significant with illnesses like cancer so it has been a big worry to hear reports like "Z has lost 6kg in the past couple of months" which is what someone at the hospital told Nadia. It seems that the truth is somewhat different and not so worrying.

Last July, Z weighed 66kg

He then lost weight before the treatment started, and during/after the treatment

In November, he weighed 63.9kg

When he was admitted to hospital last week, he weighed 60.2kg

This is a loss of 3.7kg, which is very different to "more than 5kg"

He was weighed today at 60.3kg, which means he has stabalised, or even gained a little.

His (and Nadia's) aim is to put some weight on before the next oncologist appointment in 4 weeks.

How do doctors weigh patients compared to vets?

It's easy for vets: their patients don't wear clothes
Z is weighed every time he visits the hospital, by standing on electronic scales, but he is always fully dressed and surely this must have some effect. Is he wearing a jacket? Carrying keys and a phone? Does he have a stuffed wallet in his breast pocket? All of these will have an effect and I think it means that we cannot trust reported weights as "absolute". But still, the general idea is correct and he does need to try hard to eat/drink plenty so that he puts on two or three kilos.

Pete's visit to Edinburgh 25th Feb 2015 for review with Z's oncologist

Introduction

I went over to Edinburgh for a day trip again today: the main reason was the scheduled review with Dr Sorcia Campbell, Zander's consultant oncologist, to discuss the findings of last week's MRI scan.
Zander had been doing well after the radiotherapy finished in late November, gradually getting more energy and a better appetite. He felt so good that two weeks ago he went curling two nights in a row - on the Monday and Tuesday in Kinross. Unfortunately, on the second night, he slipped on the ice and gave himself (and others) a bit of a fright. He was only bruised, but after that he seemed to go downhill quickly, stopping eating as much and spending more time in bed. His GP came out, said he was dehydrated, and he was admitted to hospital a week ago. They rehydrated him, treated him for the pneumonia that the bloods and xrays suggested, and they went ahead with his MRI scan last Friday. They decided to keep him in hospital as he has been much weaker, unable to walk more than twenty or thirty yards and inclined just to lie in bed as much as possible.

Breakfast

Before going to see him, after arriving in Edinburgh today, I went to Lennox St for a pleasant breakfast and coffee with Nadia and James. James is starting at Broughton High School in two weeks, probably studying biology, maths, english, PE and music. So we had plenty to chat about. I reckon he should do his darnedest to sit a Higher (or equivalent) in Russian - it'd be a stroll for him, but it isn't on the High School list, so not sure about this yet.

Electric bike

Anyway I then headed off to see Z in hospital - I went on Z's electric bike, and fell in love with it. What a marvellous way to whizz around: no parking hassles and no need to pedal hard up hills. The only problem was that i whizzed around so much that the battery eventually went flat and I had a long hard unassisted ride up Comely Bank Avenue at the end of the day!

Z in hospital

It was good to see Z - he was dressed smartly (I had thought he might be in pyjamas) and although he's very thin and a bit quieter than his usual self, he smiled a lot and was in good form. It was a long way from his ward in Royal Victoria to the Oncology Clinic in Western General so he sat into the wheel chair and I pushed him. I found myself wondering why not electric wheelchairs just like electric bikes for ageing children like me.

Appointment with oncologist

So we arrived just in time for the 11am appointment with Dr Campbell. It was good to see her again  - she has a reassuring, friendly, positive presence and we feel like we know her well, even though it was only the second visit to her.
First, she asked Z how he was - and he said "fine".
She asked him why he had been taken into hospital - he didn't know
Then she explained the results of the xrays and MRI scan:
1. His oesophagus is a bit bulkier in area which was treated with cancer.
2. There are some patchy changes in the bottom part of both of his lungs

She was honest with us: she is not sure how to interpret either of these findings.

1) The bulkiness of the oesophagus could be due to inflammation after the radiotherapy, in which case it is harmless and will settle down with time. We could confirm this by doing endoscopy but she is not keen to do this to Z when he is not so well. Her view is that we need to focus on getting him better, with good nutrition etc, then maybe do it later.

2) The changes in lungs could be pneumonitis but she was not definitive about this ( in fact, on reflection she said it is probably NOT this.... it is more likely that these are just Z's lungs - the changes are similar to what he had last summer. His lungs were worse last summer with a similar pattern: he probably has fluctuating changes linked to his smoking and repeated infections.

Dr Campbell then summarised her main concerns: Z has lost over 5kg in past month - this is rapid and significant weight loss - and also he is feeling very fatigued.

Some of this could be due to the residual effects of radiotherapy, some could due to infection (which is being treated) but some could be due to something else, and of course the ongoing worry is that this could be some manifestation of the cancer. Having said that, there is no evidence on xrays or scans of spread of the cancer in the chest or abdomen at the moment,  and these tests are sensitive to a couple of millimeters.

In some ways he is doing very well: his blood tests have improved since he started the antibiotics, with a reduced level of inflammatory markers etc.

So what is the plan?

He will see the dietitian in hospital to sort out his food and make sure that he is getting optimal nutrition. How long should he stay in hospital? She says at least until at least his weight has stabilised and his general energy levels have improved. He should focus on getting more active etc and eating well, physiotherapists, dieticians, occupational therapists,

Treatment at the moment

He is on a course of antibiotics (amoxycillin) plus prednisolone at 40mg daily reducing over weeks to 30, 20, 10, 5mg. This is an anti-inflammatory drug that should make him feel a bit better and a bit more hungry. If gets worse as the dose of prednisolone reduces, they may increase again.

Summary and conclusion

Dr Campbells's plan is to keep Z in hospital for about another 3 weeks, then to spend a week at home, then to come back for another review appointment (4 week from now i.e. Wednesday 25th March). I will book a flight to go over for the day again then.
If he gets worse in the meantime (especially if his swallowing gets worse), they will do the endoscope sooner. In general though, she feels that it's better to wait for a while before doing the endoscope so that it's more likely that any radiation effect will have settled.
Dr Maguire is the "care for the elderly" physician who is in charge in hospitalisation period.
Dr Baird is young female doctor who is in charge on the ward day to day.
So Z is under their care, in a bright, airy room, for the next three weeks, then we'll see.

B wasn't worried and Pete was dashing around.

The rest of the day was spent beetling around. I electric-cycled over to B, and she was tired but in good form. She smiled broadly when she saw me, and we chatted a bit. She said "Don't worry lovey" three times. (I think I might have been frowning!). I told her that it was her birthday soon and asked her how old she thought she'd be. "Thirty one?" she said questioningly. I told her it was quite a bit more than that, but I didn't dare tell her it was eighty!
I then tried to get Zander's mobile internet working but it's a bit trickier than I thought - I am working on it now with Nadia and we should sort it this weekend. Z is quite isolated without his emails etc and he will rapidly adapt to an iPad Mini once we get the internet connection sorted.
I was also looking at translation/interpreting work with Nadia - now that she knows Z will not be back for three weeks at least, she can plan to do a bit more with her time because she doesn't have to prepare meals for him etc.
So that's it. Apologies for the long report but I wanted to be as comprehensive as possible. Any questions? Just put a comment below and I'll get back to you.
Love to you all
P x

Update on Zander's health

Just to keep you all updated: it's now over two months since Zander finished his radiotherapy. He was doing really well, getting more energy and being more active, until about 10 days ago. He was out curling in Fife when he slipped on the ice and got a bit of a fright, bruising himself but not serious injuries. After that, he found himself getting more tired, and weaker. He started to sleep a lot more, and found it difficult even to drive to see B.
He seemed to be getting worse, so on Monday of last week, his doctor called out to see him, putting him on antibiotics and suggesting that he should go into hospital for a more detailed work up.
So on Wednesday morning, he went into hospital, and they did a series of tests- xrays, bloods, and on Friday, an MRI scan (it had been scheduled then anyway, to see what effect the radiotherapy had on the oesophageal tumour).
The full results are not in yet - I am travelling over to Edinburgh for the day next Wednesday to be with him for a full review with his oncologist. But the main diagnosis and the reason for his recent problems has been made: he has pneumonitis. This is inflammation of the walls of the alveoli - the air sacs in the lungs. It affects around 10% of people who get radiotherapy of the chest, as he has had. It is treated with anti-inflammatory medication- he is now on prednisilone which Granny used to get for her regular chest infections. The prognosis is good with early diagnosis and management. You can read all about pneumonitis by clicking here.
So he is still in hospital, in a lovely new building next to the old Western. It's spacious and bright and he has a room to himself. He is not online, so a bit incommunicado, although he has his mobile if anyone wants to call him.
I will post another update here after the visit to Edinburgh on Wednesday.

Pete's visit to Z & B early January 2015

I've just spent a week with Zander at Lennox Street, and this is my report to update you all

It was a lovely time - just relaxed and easy. I am fortunate that I can do 70% of my weekly work on the move (my writing) so it is not so difficult for me to settle into a place like Lennox St with my laptop. When Z has his afternoon snooze from 2 - 4pm, I get on with my writing.

The daily routine was simple: get up around 9am, slow breakfast till 11.30am,  go to see B from 12 to 1pm (where they always gave us lunch), home for a sleep/write till 4pm, then preparing dinner till 6pm, then an evening spent curling online. Well, variations on that theme, anyway. Z happily buzzes about town in his Toyota Yaris - he has a blue disabled driver badge these days so he can park anywhere he wants :-)

I loved being in Edinburgh - the old Georgian buildings, the clear crispness of January. 

On Sunday, Z led the 945am church service with John Innes. A gathering of 20 or so people, before the main family service at 11am. A social and quietly spiritual time - an important part of Z's week.

I had a school reunion with a few friends - I hadn't seen some of these folk for 35 years.....

Z took part in the East of Scotland Squash Championships, playing games on Saturday and Sunday. Three games in total. He still has that flick of the wrist and clever placement of shots, although he isn't diving into the corners these days, which is fair enough.

We visited B often - she sometimes slept (as on this visit) and other times she was awake and chatty, asking questions and understanding, apparently, what was going on. Very difficult to know what it must be like being inside B's head these days. The new care home is great - they now get B into a chair, and into the living room area most days, which must surely be more interesting and less mind numbing for B than just staying in her room, day in, day out.

Z always feeds B, and the care home always bring him a meal - three course soup, main and dessert - whether at lunch or in the evening. They fed me too!

We did some good socialising - Teresa called round for coffee and chat. She's a loyal B visitor, and her care is much appreciated.

We also had a day trip - down to the Borders. Went to see Iain Gillespie, my old vet boss, in the wilderness between Galashiels and Lauder. His remote farmhouse defied the best ability of the sat nav, and we were driving in circles for a full hour before finding him!

We went to see Gillian and Michael too - lovely to catch up with them. By the way, Z deliberately put on a silly face.... don't worry, he really isn't that strange looking!

I called round to see Astrid one evening - she is in good form, enthusing about her young grandchild.

Z has also restarted his weekly curling competition. We drove up to Kinross on Monday evening, and he put on a good show, as you can see in the photo.

There's much more to say about the week, but I just wanted to put up a few photos and the gist of it as soon as I could.  It's really lovely to have had the opportunity to spend time just living life in Edinburgh together :-)