Today has been spent funeral planning for Dad’s send off, we’ve discussed Dad’s wishes with him before his death, as a family since and with the priest who will be taking the service today. The next week or so will be spent pulling together a tribute/euology/speechy thang that I’ll say on the day. I discussed it with Dad the week before he died, he was quite traditional in his views and I was worried he’d tell me no but I thought I had to let him decide, but he didn’t say no. In true Bobby fashion he was pragmatic ‘Won’t make much difference to me, I don’t have to listen to ya’ and as ever ready with advice ‘…make sure it’s good, but don’t waffle on for too long’.
I’m quite relishing the challenge of pulling something together, of gathering memories, thoughts, quirks, habits and Bobby’isms. I reckon speaking it on the day will be a killer, but I want to do it, and I want someone who knows Dad to do it so he gets the proper send off he deserves.
One of the things we realised when we started reminiscing was how much of Dad’s life we don’t really know about, and how important it is to try and capture memories while they’re fresh for people. So we’ve decided to give people postcards at the funeral to scribble down a favourite memory of Dad….and what better implement to be used for such a purpose than an Ikea pencil! Dad *loved* those chubby Ikea pencils – he’d pocket a handful every time he went, nothing like a bargain….and ideal size for tucking behind your ear when working on DIY projects. I thought I’d chance my arm and get in touch with Ikea and see whether we could buy some pencils for the occasion, I decided to use the live chat and spoke with Surinder. Transcript as follows:
|Surinder (16:40):||Hi, thanks for contacting IKEA! My name is Surinder, how can I help?.|
|User (16:41):||I have a rather odd request! My father died last week and we”re planning his funeral….he loved Ikea pencil”s and I wondered if it would be possible to purchase a box to use at his funeral?!|
|Surinder (16:44):||Are these the ones that are available in the store to use for customers?|
|User (16:45):||Yes, that”s the ones – we were hoping we could acquire some for people to use to fill out a memory postcard!|
|Surinder (16:46):||Which is your local store please and how many are you looking for and when do you need these by|
|User (16:47):||My local store is Bristol, the funeral is next Thursday (and it may be possible for someone to come and collect or we would pay for postage) and we”d ideally like about 100.|
|Surinder (16:56):||I will ring the store for you, it may take a little while or you ok to wait?|
|User (16:57):||Yes of course, thank you|
|Surinder (17:08):||The person I need to speak will not be available for about 10 minutes, is it ok to wait or can I call you?|
|User (17:08):||Yeh happy to wait, am online anyhow, thanks|
|User (17:10):||Hi Surinder, I”ve just been speaking with my brother and his local store is XXX if that helps/is easier?|
|Surinder (17:11):||Thats fine I can contact them for you aswell.|
|User (17:12):||Brilliant, thank you – I think XXX would be easier because we actually live two hours from the Bristol store, but my brother lives around the corner from XXX. Thank you.|
|Surinder (17:20):||When are you able to go to the store (XXX)|
|User (17:22):||I”m sure it would be possible one evening between now and next Wednesday, or maybe at the weekend. I”m sure my brother could be flexible to suit them.|
|Surinder (17:29):||You can go into the store anytime and speak to any co-worker and say that you have spoken to the contact centre and XXX (Marketing Manager) has authorised 100 pencils for you to have. If you have any problems please ring the contact centre on XXX and ask to speak to me. I will not be available on Friday 23/11 or Sunday 25/11. Somedays I am here til 8.00 pm|
|User (17:30):||That”s brilliant, thank you so much. Really appreciate it. You don”t know how much my Dad would have loved that!! Thank you.|
|Surinder (17:31):||You are welcome. Hope everythings go well for you. I am sorry to hear about your father.|
|User (17:31):||Thank you|
So there we have it, Bobby’s funeral will be complete with memory cards and his beloved Ikea pencils. An amazing piece of goodwill marketing by Ikea and a brilliant result for us. Love it.
A former Torbay magistrate once described a ‘man of the people’ by a court colleague has died aged 94. Bert Langmead, a retired manager with the Post Office, joined the bench in 1962 and served on it for 26 years. During his last nine years on the bench until he stood down in 1988, Mr Langmead was also chairman on the licensing justices. When Mr Langmead retired from the bench, numerous tributes were paid to him by policemen, solicitors and court officials. Colin Jones, who was clerk to the court at the time, described Mr Langmead as
“A man of the people” and added ”You take with you not only our thanks and respect but our genuine affection and goodwill”.
Retired Torquay estate agent Barney Bettesworth, who served on the Torquay bench from 1975 to 1990, remembers his former colleague as someone who brought a common-sense approach to administering justice.
“He was a very amiable guy who was well balanced and brought a level-headed approach to the bench…I remember him as being very down to earth and someone I respected hugely during my time as a magistrate”.
During his time as licensing chief, Mr Langmead was critical of the drinking culture which was starting to develop among young people in Torbay. He told the Herald Express “Young people today are being conned – there is more to life than just boozing yourself to death”.
Mr Langmead was employed by the old General Post Office for 46 years. He joined in 1932 as a telegraph boy and worked his way up to postal superintendent in Torquay via stints in Teignmouth, Exeter and Paignton. He and his wife Margaret were married for 71 years. They met at the youth club run at Christchurch, Ellacombe in Torquay when he was 13 and his wife to be 11.
Gran and Grandad’s 67th wedding anniversary on my sister’s wedding day in 2007
In the months before the outbreak of World War Two, he enlisted in the Territorial Army and when was was declared was posted to France. Mr Langmead later served in Norway. When British forces were evacuated from Norway, he returned to this country and spent some time with an anti-aircraft duty in Kent. The couple were married in June 1941, in Exeter, and within weeks he was sent to Burma, where he served for the remainder of the war.
Mr Langmead was a regular churchgoer and served on the Cockington-with-Chelston Parochial Church Council. He was a churchwarden at St Matthews Church. Mr and Mrs Langmead have two daughters, Sylvia and Marion, five grandchildren and five great-grandchildren, with a sixth on the way. Daughter Sylvia said her father enjoyed a full life well into his 80s when, inevitably, his pace slowed.
“My father was a man of integrity and a true Torbay gentleman who will be sadly missed by everyone who knew him” said Sylvia.
Mr Langmead’s funeral took place yesterday at Christchurch in Ellacombe where he had been a boy chorister more than 80 years ago, followed by a burial service at Torquay Cemetery.
It was my Grandad’s funeral today. At 1pm sharp we walked into the Church where he sang as a boy. The 1pm sharp bit was quite lovely, Grandad was a man of orderliness, you could set your watch by the time him and my Gran sat down for dinner, at 1pm every day. Today it was not a Granny dinner that called us together, but a celebration of Grandad’s life. The Church was busy and lots of people hang around for refreshments afterwards once we’d been up for the burial.
The chat beforehand was that they’d be ‘no piping the eyes today’, a stiff upper lip was attempted by all but managed by few. It wasn’t so much the loss of my Grandad that hurt, he was a lovely man who’d had a full and fabulous life, but seeing my Gran follow his coffin out the Church was lip quivering for the best of us. They met in the Church youth club 80 years ago and had celebrated their 71st Wedding Anniversary last month. The other thought I couldn’t shake, and haven’t been able to shake for the last few weeks, is that this really was some sort of dress rehearsal for Dad. He was joking with the undertaker at the graveside and promised to avoid fat ladies singing for the near future. Here’s hoping.
Goodness and mercy all my life, shall surely follow me. And in God’s house for evermore my dwelling-place shall be.
Last night I noticed a tweet from @StuartBerry1. It had been retweeted by @amcunningham – if you are in any way interested in health or medicine, and you’re not already following Anne Marie on twitter then stop now and go follow her (if you’re not already on twitter then you’re really missing out).
Anyhow, Stuart was collating ideas for hints and tips of how to get the most out of a 10 minute GP consult. It’s years since I’ve seen a GP but I have attended numerous doctor or hospital appointments with my parents since my Dad was diagnosed with cholangiocarcinoma (bile duct cancer) five years ago. This blog is full of my version/experience of my Dad’s illness, it’s not his experience or views, just mine so it’s already once removed, and it is obviously heavily influenced by who I am, my world view and my experience. That said, I contributed a few ideas to the GP conversation and there has been a healthy amount of discussion about one of my ideas since.
I shared that on two occasions I’ve used my phone to record conversations with Dad’s medics. I thought twice about whether to share that information, and felt it was a little risky to do so, because I knew some people wouldn’t necessarily agree with my course of action, or approve of it. If I’m honest I’m not exactly confident of my own actions because on one occasion I didn’t seek permission to record it.
The first occasion was in A&E (a couple years ago now) and I asked the doctor if they minded me recording what they were saying so I could have it as a record and to share with family members. They had no problem whatsoever, seemed almost indifferent. I just recorded what they told us, listened to it a couple times after and I no longer have it as I’ve changed my phone since then.
More recently I recorded one of my Dad’s oncology consults. On this occasion I didn’t ask permission, the appointment was already 90 minutes late, I didn’t think of it, and it was only once the consultant started explaining something complex and I could see my Mum struggling to take notes, that I thought I’d just record it on my phone again. I can’t tell you how many times my Mum, Dad and I have all sat through the same conversation, with the same person, at the same time and yet come away with different understandings or memories of what was said.
Certainly my experience of Dad’s current situation is that it is extremely complex, and extremely complicated. It doesn’t really fit with my mental stereotyped image of clinical science. In fact i’d go as far as to say it doesn’t feel like science, and thats no bad thing, its much more human than that. My Dad has (with a few minor exceptions) received outstanding care over the past five years, he has defied all odds, and its not much short of a miracle that he is still here. None of that would have been possible without the phenomenal skill, compassion and knowledge of the many medical professionals he has come into contact with. At this stage though, as Dad is receiving palliative treatment (blood transfusions to counteract bleeding tumour, chemo, scores of drugs) it seems that it is more art than science. Everyone who comes into contact with Dad seems to have a different interpretation of what the best course of action is, or they don’t know – sometimes that honesty is refreshing, sometimes it’s just plain scary.
What I have learnt over the past five years is that there is probably no such thing as a textbook case, certainly if there is my Dad isn’t it. Consequently so much of Dad’s care is very personalised and tailored, things change quickly, we’re aware he is in a very precarious situation. I consider the best thing I can do is support him and Mum, and my siblings who live away, so we are all as aware as possible (or as aware as we want to be) about what the current status quo is, for as long as that lasts. To that end I don’t regret recording his consultation, even though I feel a residual guilt that I didn’t ask for explicit permission (it upsets the ethical researcher that runs through my core), it felt like the best course of action at that time.
I’ve listened to the recording twice since, with my Mum. No-one else has heard it, it’s something that is quite precious to me. On the one hand it serves as a factual record for when we start doubting ourselves and on another it is a recording of my Dad discussing critically important decisions with the man who has in my opinion (along with his surgeon/previous consultant) done the most to sustain his life. I can’t imagine anyone outside my own family ever hearing that recording, unless I figure out how to save it elsewhere I could lose it at any time, but I like the idea at the moment that one day my 2yr old niece may be interested in knowing more about her Grandad and she could hear for herself how brave he was, how he faced what I would have considered impossible conversations a few years ago, head on. It’s evidence of his spirit, and my fantastically brave and spirited Mum’s attempts to do the absolute best for him.
I appreciate the ethics are dubious, but I’m glad I did record it. I also think there could be a really useful application of this simple technology in everyday consultations. Lots of patients have smart phones that enable recording nowadays, I’d like to think that there is a GP out there who would embrace the idea – how about actively encouraging recording, even if it wasn’t a verbatim record that people wanted, I think most doctors surgeries could help people to get more out of their allocated slot if they encouraged people to think of the questions they wanted to ask before seeing the doctor.
Some of the obvious concerns are around litigation, but really, really in our enlightened world of empowered patients is this an acceptable argument? OK, so I’m playing devils advocate but really look at how much information is collected from the patient by the doctor in an average consultation. No patient I know of has ever been asked if they mind if the doctor takes notes. How about taking a leap of faith and embracing the opportunity of supporting patients and their families. Who wouldn’t want to?
A week ago I wrote a post explaining Dad’s latest situation with #cholangiocarcinoma Don’t give up the ship, fight her till she sinks. At the time we’d just seen his oncologist and heard the news that Dad’s one remaining option was to have chemotherapy in an attempt to stem the tumour in his stomach bleeding, which in turn is causing him to become severely anaemic and requiring regular blood transfusions.
On Monday Dad went to the unit where he receives the chemotherapy to have his prep session and bloods taken. Less than a week since his last transfusion and he’s anaemic again and his haemoglobin level was down to 7. The fantastic staff did all that they could and managed to fit him in on Tuesday for another blood transfusion, in order for him to start chemo today as they’d originally planned. All of this organised at the drop of a hat, with Dad’s specialist nurse doing what he seemingly does best, twisting arms and calling in favours. So today was his second day at the unit, ten hours at a time, so far so good. The chemo is very risky for Dad, but its a game of odds and the balance of probabilities suggests that doing nothing is even riskier.
Possible side effects include all the usual things (anaemia, hair loss, constipation, wind, loss of feeling, impaired immune system), a major bleed (not surprising given the amount of blood he is losing anyway) and neutropenic sepsis.
Dad has had sepsis on a couple of occasions, including the last time he was on chemo, they’ve warned us that the most dangerous time will be this weekend. Anyone who has ever been taken ill on a weekend, never mind a Bank Holiday, never mind Easter…will know that you don’t want to end up in A&E then. That said, I’m really impressed with the fact that they have raised the issue and reassured Mum that we have to be explicit that we need attention, and it’s also good to know that the hospice palliative care team are aware too. Unless you’ve had to do it I don’t think you can necessarily appreciate how hard it is to request attention once you’ve been admitted into hospital, especially in a busy A&E Department where you’re surrounded by other poorly people. This leaflet, and it’s explicit time bound permission statement to go back and insist on action, is really powerful stuff. Very impressive. This flimsy piece of A4 paper could make the difference on whether someone like Dad survives, I know that with this piece of paper in her hand my Mum would go and ask for further attention, without it there’s a slim but outside chance she might speak up but evidence so far suggests she’d rather not make a fuss/appear ungrateful/nag/push in etc etc etc. Never underestimate the power of a piece of paper for a generation who were brought up to respect authority!
The other possible side effect of one of the many drugs Dad is on is that it could alter your mood. I’m staying at my folks house tonight for moral support and I can honestly say that this drug has altered Dad’s mood….he was treating his sick bowl as a fashion accessory. My Dad has always been a little off the wall, in fact his party trick when I was a kid was to drive the car with his knees and no hands, but I’ve not seen him in a playful mood in ages. Obviously having the chemo and taking some step to fight it is a good thing, for now.
I was slightly wired all day today, I was up in London for a meeting, and I felt so far away if anything had gone wrong. That said it was a good meeting and nothing did go wrong and Dad is insistent that I don’t put my life on hold for him. Having been home for most of March, unfortunately I have stacks of travel planned in April. If I’m truly honest I’m absolutely dreading what the next few days and weeks hold. That said everyone who has dealt with Dad over the past few weeks has done so with such kindness, that it makes me feel reassured and humbled, and a little more daunted (because my suspicious mind assumes that this is a sure fire indication that this really is coming to an end now). I’ve also been blown away by the number of you who have left blog comments, sent tweets or DMs and those of you who text me when I was silent to check how things were going. Thank you all so much. I know it’s hard to know what to say or do in this situation, I know that some people would just rather not think about it, and I know that I am a walking, talking, ball of emotion at the moment and I’m not the easiest person to deal with at the best of time. Thank you all for your patience, virtual hugs and moral support, it’s really appreciated. I’ll leave you all with the man himself modelling an NHS sick bowl!