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A sense of community

Malvern is a medium-sized town, but sometimes it has quite a small-town feel about it. Pretty much every time I go into town shopping, I meet someone I know and stop for a chat. This seems to astonish my sister, who has been visiting recently, as she lives in commuter territory in Greater London where one may well meet up with friends after work in the centre of London, but one doesn’t expect to bump into them at the butchers, or to block the dairy aisle chatting in the supermarket.

Like many close-knit communities, gossip flies around Malvern quickly, so it seems that most people already know what’s happened, and offer me their condolences. And not just friends either. I’ve had a number of tradesmen around recently as there are chores still needing to be done, and I vowed months ago to “get a man in” rather than “do it myself”. I found it really surprising that all of them already knew that Chris had died, and not just from reading the death notice I put in the Malvern Gazette – someone had told them what had happened. Some people might find that uncomfortable or intrusive. I rather like this sense of community, however, and I’ve found it very comforting in recent weeks.

01 10 2010 Gillian cancer Comments (2) Permalink

….and a hook for the bathroom door

I took another donation along to the hospice on Thursday, in addition to an envelope full of cheques. I didn’t want to give it to the Appeals Director along with the money, as I’d never met her before so wasn’t sure whether she had a sense of humour. However, I noticed that the receptionist was a woman who had been on duty much of the time when I was virtually living at the hospice last month, and we’d had a number of chats at the time.

So as I was leaving, I stopped by at Reception, and said that I had another donation that I wanted to give to her to pass on to the correct person. I reached into my bag and pulled out ……. a chrome-plated double hook from my local hardware store. I explained that this was a hook for the back of the bathroom door in the guest suite. She looked rather nonplussed, so I explained that I’d found nowhere to hang my clothes when I was having a shower. I’d had to pile them up on the loo seat. Then of course when I got out of the shower dripping wet, I had to lean across the heap of clothes to reach the towels on the towel rail. So my clothes got damp.

The receptionist burst out laughing, and said that no one had ever mentioned it before. I pointed out that, when one’s husband is dying down the corridor, a few damp clothes were neither here nor there! But nonetheless it was unnecessary and easily fixed – hence my donation.

The receptionist laughed some more, and said that no one had ever given them a hook before – chocolates, benches for the garden and even a brace of fancy ducks for the pond. But never a hook. I replied that was obvious – otherwise there wouldn’t have been a problem!  She was still laughing as she promised to hand the hook on to their facilities manager, together with a note explaining exactly where it needed to go………

25 09 2010 Gillian cancer Comments (7) Permalink

St Richard’s Hospice

I went back to the hospice today give their Appeals Director all the donations which people so kindly gave in memory of Christopher – both at the crematorium and subsequently via the funeral director.  The total came to just under £1500, which I then matched. Together with whatever is raised by the scrapping of the faithful little Polo, that will bring the grand total to over £3000.  I am very grateful to you all – this will help them to help other people in our situation in the future.

St Richard’s is a major local charity, and one can’t live in Worcestershire without being aware of its existence. But I for one didn’t know anything more about it a few months ago. I certainly was not aware of what it offered to those in need. So I thought I would blog a bit about it, and its difference from a hospital, so that you can see where your money has gone.

At the hospital, the staff were totally focussed on Christopher as the patient. Although (almost) everyone was polite and kind to me, I felt somewhat extraneous – I was the driver, the fetcher-and-carrier, and the person who queued in the pharmacy. Rightly so, as Chris was the one being treated, and I had not been referred to them. Some of the junior doctors took this attitude to extremes, and didn’t even bother to find out my name or introduce themselves to me, so focussed were they on treating Christopher as efficiently as possible.

At the hospice, the atmosphere was completely different, from the moment we walked in the door on our recce visit. They are part-funded by the government, so the medical staff all wear NHS badges and the computer systems are integrated with those of the hospital. They even share some of the same medical staff as the hospital. But the over-arching attitude is driven by the ethos of the hospice and is refreshingly different.

The hospice believes in “holistic care” of the patient and their family. Frequently in a healthcare context the word “holistic” really gets my hackles up, as it is a term so often abused to mean  (in my opinion) “alternative quackery”. In this case though, they are using it in its true sense of treating the whole patient – not just the medical needs (as the hospital does) but also the overall situation. Their view was that Chris couldn’t be comfortable unless I was comfortable – and so my welfare both then and indeed continuing on now was just as important as his medical needs. That’s the bit which is funded by the charitable donations, and we were both extremely grateful for it.

Some examples:

I was able to stay all week at the hospice in a very comfortable en-suite family room and, when things got bad, on a camp-bed next to Christopher. I could order meals from reception, so that I never went hungry or had to leave Chris to find food. In fact one day, when things were so grotty that I got distracted and forgot to order any dinner, the team saved a meal for me anyway.

I had a dreadful tension headache the whole time I was there (hardly surprising really), and the nurses were more than happy to hand me some strong pain-killers. Better yet, they arranged for me to have a very comprehensive back-massage from one of the volunteer therapists, which made a huge difference to the knots in my shoulders.

Perhaps the most telling detail occurred a few days before Chris died, when one of the nurses asked me if there was anything at all that they could do to make me more comfortable. I confessed that actually, I’d been meaning to get my hair cut for the last few weeks but had to put it off. It was only a small thing, but my fringe had got so long that I was having trouble seeing out. “No problem” said the nurse – they had a fully-equipped salon in the hospice, and one of the health-care assistants had trained as a hairdresser before changing career. She was more than happy to trim my fringe. And it was done straight away.

All those little details added up over the two weeks that Chris was there. And the care hasn’t stopped even now. One of the family support workers is in regular contact with me to see how I’m doing, and to help talk me through things. She is available to help me for just as long as I need her – whether that be weeks, months, or longer. I’ve also had help with filling in the probate form, and more such help is on offer should I need it.

So overall, the amount of help and physical, practical, and moral support that is available to those in need is staggering, and so very welcome at an extremely difficult time.  All those extras, over and above the exemplary medical care, come out of the charitable donations. And that is what, between us all, we are helping to provide in memory of Christopher.

23 09 2010 Gillian cancer Comments (3) Permalink

Farewell, little car

We bought our VW Polo new, 15 years ago. It’s been a super little car, with a very willing engine, but we really have run it into the ground. The electrics have been dodgy for years – the central locking hasn’t worked for ages, and the electric window in the driver’s door broke about seven years ago, in the ferry terminal at Calais. It took 3/4 hour in the pouring rain to take the door assembly apart and fix it. The window then let us down again on several subsequent occasions, including in a carpark in Edgbaston, making us late for the final day of a Test match against the Aussies while we made the car secure. Eventually we got fed up of taking the door apart to fix it, and our bodges clearly weren’t working, so we taped the window permanently shut with duct tape.

Every year, the car needs work to pass the MOT test, and about 15 months ago we took the decision that it would be cheaper overall to scrap it. We both worked at the same place, and the number of times we actually needed a second car was very limited, and could easily be managed with the occasional taxi.

But then Chris found out that he was going to be made redundant, so it made sense to keep the car so that his day wasn’t tied to taking me to and from work. Even when he was ill, he kept driving until nearly the end, and it was really useful to have the second car so that he could go out & visit his friends for coffee etc while I was at work.

Now, of course, a second car really is superfluous. It wouldn’t be worth much to sell, and I was wondering how best to dispose of it. Then I read an article in a newspaper about giveacar.co.uk. They will take your old unwanted car, scrap it, and donate the proceeds to a charity of your choice. So the car gets taken off your hands at no cost to yourself, it gets disposed of legally and safely (and you get a certificate confirming it’s been scrapped) and your chosen charity gets a donation on your behalf. It sounded almost too good to be true, but I did some digging and it really does appear to be genuine.

I phoned giveacar on Monday afternoon, after work, and gave them the details of the car and the charity I wanted to benefit (St Richard’s Hospice). A local car parts dealer phoned me back on Tuesday morning to arrange a time to collect it, and they came that afternoon to complete the paperwork and tow it away. I should hear in a week or two how much it’s raised for the hospice. It probably won’t be a lot, but it is one more thing dealt with that I can cross off my list.

16 09 2010 Gillian cancer Comments (2) Permalink

Sorting out the estate

I can see why solicitors charge a small fortune for acting as executors of a Will. It’s taking me around an hour a day, every day, to sort out Christopher’s estate – and that was with us knowing that he was dying so trying to get things straight beforehand. I’m trying to do one thing each morning, before I go to work, and another in the afternoon when I get home, as each delivery of post seems to bring yet more things that need to be dealt with.

I’ve got a huge long list of people to contact and things to do. As soon as I cross one thing off, more appear, so the list never seems to get any shorter. So far, people I’ve contacted include three banks, two building societies, three utility companies, three telecoms companies, the DVLA, Dept Work and Pensions, the taxman, the County Council for council tax, electoral roll, the life assurance company, his pension provider, three credit card companies, paypal, and sundry others.

It’s really fascinating seeing the difference in customer service ethos between the different organisations. Some will take my word over the phone and change things into my name there and then. Most want copies of the Death Certificate (good job I thought ahead and bought multiple copies of it when I registered the death, because only some companies send it back to me promptly). Some want copies of the Will too, and yet others want proof of my identity – up to and including marriage certificate, birth certificate, copy of passport and current utility bills as proof of my address. That last was difficult, as all of the utilities were in Christopher’s name, so I had to change those first……

I think the life assurance company was the easiest to deal with – after all, their business model assumes that a proportion of their customers are going to die in any given year, and their procedures were easy to follow and worked like clockwork.

The most challenging are the people who host the icyjumbo.com domain name and webspace. I strongly suspect that the companies involved were set up by eager twenty-somethings who haven’t ever acknowledged their own mortality, so haven’t thought through what needs to be done if one of their customers dies. I was told to fill in a form that needed Christopher’s signature (duh!) or to log in online using his password (ouija board anyone?). I had to bluntly say that No, I can’t do that because HE’S DEAD! That seemed to shock them into thinking of a way around it. However, I’m still not convinced that things have been transferred correctly into my name, so if this blog disappears overnight on 29th September it’s because they’ve tried to charge his (closed) paypal account, rather than my credit card.

One other memorable exchange was with O2, who have been providing a 3G connection for his iPad. I don’t need or want that, so I’ve been trying to cancel it. I noticed that a monthly debit was still appearing on one of his credit cards, even though I had notified the bank concerned, cut up the card and closed the account. Turns out he had given O2 a recurring mandate on his credit card, and that could not be stopped at the bank’s end – sounds like a bug in procedures to me. The executor is expected to know which companies have a recurring mandate, and to contact each of them individually to terminate the agreements – which I think is unreasonable. Anyway, I contacted O2 and it turns out that Chris was the first person in the country with an iPad 3G data plan to die – and they didn’t have a process for terminating the agreement! An order number was no good for actually identifying an order (!), and they couldn’t find him on their system using name, address or postcode! In the end I had to take the iPad apart to take out the SIM card (using a bent paper clip as I have no idea where he has put the Apple-approved SIM removal tool) and email O2 the text that was written on the SIM card. I’m informed that has now allowed them to trace the order and stop it – I’ll have to  look on the credit card next month to see if that’s indeed the case.

I’m still nowhere close to getting probate, which is needed before any of the banks will release his savings to me. But I’m planning on going to the hospice tomorrow to talk through the forms with one of their trained advisers. That should help me sort out what I need to do next in order to take the next step.

14 09 2010 Gillian cancer Comments (3) Permalink

Scattering the ashes

I spoke to the funeral directors today, and Christopher’s ashes will be ready for me to collect from them on Monday.  He was quite clear about what he wanted me to do with them, indeed we talked about it quite a bit over the past few months. He wants me to scatter his ashes, a match-box-full at a time, at interesting holiday destinations all round the world. So that could be places we’ve been together and loved, such as Malta, the Dordogne and Egypt, and also places that we wanted to visit but didn’t have enough time together to do so – such as the Great Wall of China, and some of the superb Roman ruins in Syria and Libya. Christopher’s suggestion was that I use the small widow’s pension that will be due to me from his works pension scheme to pay for one really good holiday per year – and take a small bit of him with me to scatter there. I rather like that idea!

03 09 2010 Gillian cancer Comments (7) Permalink

Collected audio recordings

The good folk at Librivox have put together a collection of all of Christopher’s recordings for them, together with a CD cover and album art. It’s all available here:   http://www.archive.org/details/ChrisBoothCollection

There’s a whole variety of things he did for them – poems, book chapters and a couple of whole books. It’s great to have it all in one place. Thanks very much to them for the kind thought in collating them all.

21 08 2010 Gillian cancer Comments (4) Permalink

The funeral

I was amazed at the turn-out at the crematorium yesterday – standing room only! Thank you so much to all who were able to come, some of whom I know drove long distances to be with us. I really appreciated the efforts you all made, and I know that Chris would have too. And thank you too to those who sent me messages of support but were unable to attend yesterday. It meant a lot to me.

I tried to say thank you in person to everyone yesterday, but I know that I didn’t get to see everyone. I wasn’t up to holding a big “wake” with all our friends and family after the service – it was difficult enough holding myself together at the crematorium. But I think I had more hugs yesterday than I would normally get in a decade – so thank you all.

It’s surprisingly hard work planning a funeral – even though we could see this one coming. You have to make lots of high pressure decisions in a very short space of time. So I thought I would blog about how I came to the decisions I did – it will help me get it out of my system, and who knows may even be helpful to someone else one day.

Chris and I had the Big Conversation several months ago, in the middle of his chemo, about what he wanted for his funeral. It was the hardest conversation we ever had, but it was important to both of us that I knew and understood what he wanted, and that guided everything subsequently. He said that he wanted to be cremated, and to have a completely non-religious service to celebrate his life. If we were up to it, he would like me and a few friends to speak about how we saw him.

We’d been to a few humanist funerals, and were struck by the fact that, although the services were very tasteful and fitting, the celebrant had never actually met the deceased. It was important to me that the person I chose to lead the service wasn’t a complete stranger to Chris. We did joke about walking together into a funeral directors and planning it together, but that was a step too far.

Fortunately, yet again, the hospice had the answer. The chaplains there make a point of getting to know each of the in-patients and talking to them as individuals. And I was surprised but very pleased to learn that, even though all the chaplains I spoke to were C of E, they are equally happy to conduct non-religious services. I was told that they see themselves as chaplains first, ministering to the individual needs of the patients and families, and licensed ministers of a particular denomination second. I had a long chat with one of the chaplains, Rod, when he happened to turn up at Christopher’s bedside when I was there. Rod and Chris had already had several chats over the previous week, but I gave Rod some “homework” to get to know Chris a bit better. Unfortunately, that was the Sunday that things started to go rapidly downhill, so he didn’t have much of a chance. But at least they did get to meet and chat together before things got really bad.

I had several chats with Rod afterwards, as we planned the service together, and I really liked his style and the way he took on board my strong views about how I wanted things to be.

One of the other big decisions I had to take was the type of coffin. I really considered it a waste of money to go for the top-end range offered by the funeral directors, especially since it would cost thousands and only be on show for 45 minutes before being cremated (ever practical!). But the cheap ones looked just that – cheap and rather tacky. But the funeral director came up with an idea I leapt on – a woven bamboo coffin. More eco-friendly than a traditional coffin, looked a bit unusual, reasonably priced, and (in my view at least) not at all tacky.

For those of you who couldn’t be there, this is the order of service.

Music on entry:  John Williams playing the 2nd movement of the Concerto de Aranjuez (chosen because Chris had absolutley loved seeing him play it live at the Malvern Theatres a few years back)

Welcome: Rod Waugh, St Richard’s Hospice

Tributes to Christopher:

  • Gillian – talking about how we met, and giving a brief picture of what he enjoyed doing and what he was like as a person
  • In his own words – Rod reading “If not “fighting” then what”
  • Friends – Richard, Mike and Neil each speaking a few words about their friendship with Chris. I know they each found it very difficult and emotional, but I am really touched and grateful that they felt able to pay tribute to Chris in this manner – on behalf of all his wide circle of friends
  • The Librivox Community – the Librivoxateers put together a very moving audio compilation of them saying goodbye to Chris which we played on CD

Poem – The Jumblies by Edward Lear, read by icyjumbo. That was quite spooky, having his own voice ring out at his funeral, but somehow very appropriate. He read the poem to bring out the sense of seizing the moment, and taking the opportunities that life offers you, rather than waiting 20 years and then thinking “I wish I’d gone to sea in a sieve”

Farewell: Rod Waugh

Finale: The Jacques Loussier Trio playing Bach’s Toccata and Fugue in D minor – again chosen because we had thoroughly enjoyed seeing it played live.

We had  retiring collection in aid of St Richard’s Hospice, which  is open c/o the funeral directors for another month. At the end of that period I shall match the total with a donation from Christopher’s estate and forward it all to the hospice.

18 08 2010 Gillian cancer Comments (12) Permalink

Thank you all so much

By Gillian

Thank you for all the letters, emails, cards and blog comments which you have sent me over the last few days. Thank you for the flowers, the photographs of Chris at university before I knew him, and the pancakes left on my door step. Thank you for the donations in his memory to St Richard’s Hospice, which have already started coming in. And thank you to the Librivox Community for the audio tribute which I shall play at the funeral on Tuesday.

But most of all, thank you to everyone for your kind thoughts and words about Christopher. He would have been astonished and humbled to know that he had touched the lives of so many people. It has been a huge comfort to me in the last few days to know that you are thinking of us.

13 08 2010 Gillian status Comments (2) Permalink

Funeral Arrangements

Christopher’s funeral will be held at Worcester crematorium at 2pm on Tuesday 17th August.

Family flowers only please.

We were so pleased with the care that hospice showed us in the last two weeks of his life, that instead of flowers I should like to invite donations to St Richard’s Hospice, care of Holland Funeral Service, 71 Barnards Green Road, Malvern, WR14 3LS.

09 08 2010 Gillian status Comments (4) Permalink