Category: Life and Living

Why I support Dignity in Dying

I’ll never forget the day my Dad asked me if I’d heard of Dignitas. It was about a year after his inoperable cancer diagnosis and we were sitting in his lounge one Saturday afternoon. He’d told me before I got there that he wanted to talk to me about some things, and I knew it would be related to his illness. He’d started off with discussing his will, so I was already crying by the time he mentioned the assisted dying clinic in Switzerland. I knew it wasn’t just idle conversation.

My Dad was very very scared of how he would die from cancer. I’m sure he was afraid of dying too, but his main focus was the how; what would happen to his body in the lead up to the end. Effects of prostate cancer include spinal cord compression – when the active tumours press on your spinal cord leading to limited mobility or, in some cases, paralysis. He was consumed with the idea that this might happen to him. That his final days or weeks might be spent confined to bed, relying solely on others to clean and feed him. It wasn’t how he wanted his life to end.

By the time he brought up the subject with me he’d already started looking into it. He’d been in touch with Dignitas to find out the process for being accepted at the clinic. Contrary to somewhat popular belief, their services aren’t open to just anyone. It’s not enough to feel you’re done with life and want to end it all. They ask for recent medical proof of your condition and, if possible, a prognosis. They’re not in the business of helping healthy people to die. They’re there to provide a much needed choice; a dignified end for people who want to control how and when they die, and at what stage in their deterioration. For people like my Dad who don’t want to face the end in potential pain; losing their independence and dignity as their illness ravages their body.

We discussed the logistics of it; how he would want his wife and I to fly with him to Switzerland. How he would need to be there for a couple of days prior to his chosen end date in order to be seen by medical professionals and psychiatric assessors. How he could change his mind at any time. How the clinic would help with arrangements around accommodation and restaurants and things to do in the days prior. How, on the chosen day, he would self administer a lethal amount of liquid barbiturate which would send him into what looks like a deep sleep, while his wife and I were there with him, holding his hand and able to say our goodbyes. How, after around 30 minutes, his organs would slow and eventually shut down completely. How his body would be cremated in Switzerland. How it might be difficult to repatriate his ashes into the UK because of the legalities around assisted dying, and how he understood. Whether he would tell family and friends in advance. Whether we would bring his belongings home, after we flew out to Switzerland as three people, and came back as two.

It was heartbreaking.

But, that said, I completely understood. And I completely supported him.

You see, my Dad never recovered from his inoperable cancer diagnosis. I don’t mean physically, that was an impossibility. But mentally he was never able to put it to the back of his mind. Although he went on holidays and did stuff while he still could, he never had that “fuck you cancer” mentality. It was pretty much all he spoke about. And that’s an exhausting way to live. From the time he was diagnosed he became obsessed with how long he had left to live, and what that time would be like. And, the more he found out about how bad things could become, the less he wanted to let nature take it’s course.

My Dad didn’t make it to Dignitas. He made the mistake of asking his GP for his medical records, so he could send them away as per the rules of the Swiss clinic. His GP asked him why he wanted them; almost goading him into telling him why. So my Dad told him. And his GP said he would have to consult the practice legal team, who advised that they couldn’t condone ending his life in that way, so he had to mark my Dad’s medical files as a potential suicide case with strict instructions not to release his files to him.

Dad was angry. Incredibly angry. He felt he’d been tricked and blamed the GP. He sought out charities and organisations and individuals who may have been able to help. He applied for his hospital records in the hope that they weren’t marked up with his intentions. But it proved just too difficult to get the information he needed quickly enough. Dignitas required recent medical records, and by the time the hospital processed the request they were already out of date for his needs.

During that fateful GP appointment, his doctor spoke very highly of the palliative care services available in the UK. Palliative care is end of life care. Pre-death care. The intention is to make sure that people with terminal illnesses are comfortable, not in pain and not suffering. There are Macmillan nurses and hospice workers who dedicate their life to looking after people with cancer, and they do a magnificent job. But what about the mental pain? The fear and the anguish of what’s to come? You can’t treat that with a morphine injection and a comfortable bed.

Palliative care 100% has a place in the NHS, I strongly believe that. But it shouldn’t be the only option.

When my Dad was given a timescale on his illness, towards the end, his obsession with what was to come became even worse. The team from Macmillan told him he had about 4-6 weeks left to live. He was too poorly to do anything, to weak to go out, too uncomfortable to share his marital bed, too ill to enjoy food or even eat. He lost a lot of weight, needed sticks just to get around at home and was regularly physically sick. Hew was also in immense amounts of pain, because the team supporting him were struggling to get the balance of medication right. The palliative care team the doctor had spoken so highly of; who were supposed to be a real and equal option to that of Dignitas. He had no quality of life, and still continued to fear worse to come; that he would be paralysed before his body gave up. He didn’t want to have to have a bed in his lounge and be unable to live the life he had previously there. He made the difficult decision to be transferred to a hospice for specialist care.

My Dad never made it to the hospice. He had a suspected stroke in the early hours of the morning he was due to be transported there by ambulance. He was rushed to A&E where he was convulsing and writhing in suspected pain. After the amazing hospital staff managed to get him comfortable, he was transferred to a private room in a ward where we knew he would see out his last hours. He never regained consciousness but all of his family were around him for the whole day and into the night, where he died not long before 11pm. We were, thank god, able to say our goodbyes. It was, in a way, the best thing that could have happened. Had he survived another 4 weeks, as diagnosed by the cancer specialists, he would have suffered an incredible amount, lost even more weight, been even more poorly and perhaps even have become paralysed as he feared. He’d have been in a hospice, away from home, waiting to die. And that just isn’t acceptable as the only option.

Imagine how much better he could have coped from the time of diagnosis until the inevitable end if he knew that he didn’t have to face the very worst that the illness could throw at him? That he could know in his own mind when enough was enough, and end his life on his terms? Because that’s the other issue with Dignitas. You need to be well enough to make the journey, and physically able to take the barbiturate. People who do make it to Dignitas often have to choose an end date in advance of what they would if assisted dying was an option in the UK, because they need to be sure they’re capable of getting there. They need to book flights and accommodation. They need to choose an end well in advance, without knowing if they’ll definitely feel desperately ill enough by that point. People are potentially cutting their lives shorter than they need to because of our archaic laws here in the UK.

It’s also bloody expensive, so not a valid option for everyone.

This is where Dignity in Dying comes in. They’re a charity who’s focus is to change the law in the UK around assisted dying; to make it possible for people with a terminal illness and a doctor’s diagnosis to choose when to die, in their own home or place of their choice, with their family and friends around them. For people to do it on their terms. Not to have to slink off like criminals. Not to have to worry whether their loved ones who have helped or accompanied them will face legal repercussions back in the UK. Not to fear undeterminable pain, potential paralysis, loss of bowel control, loss of appetite, sickness and god knows what else while they’re waiting to die. We aren’t talking about families pushing vulnerable people to end their life so as not to be a financial or literal burden. We’re talking about people for whom there is no hope of getting better, only the reality of getting worse. People who want to control their own destiny and make their own decision on when enough is enough. People who, understandably, don’t want their final days to be full of pain and suffering; people who don’t want to potentially die alone in hospital; people who want choice. Not inevitability. Not that sense of having to give in and accept their fate. The power to say enough is enough.

I know it’s said so many times by people who support the right to assisted dying, but we wouldn’t allow animals to suffer the way we allow humans to. I recently read a comment on a Dignity in Dying Facebook post, which said a terminally ill person would probably be better off going to a vet than a doctor. You can see the point. If an animal is poorly we do “the kindest thing”. It’s an accepted part of a humane society and an accepted part of being a pet owner. It’s allowable by law. Why then are people with cancer who can no longer eat or drink towards the end, due to the illness, allowed to essentially dehydrate and starve for days until their body finally gives up? Why are people with neurological diseases allowed to become prisoners in their own body, as their muscular responses cease to function, with death the only hope of respite?

Noel’s story

Noel Conway was diagnosed with Motor Neurone Disease (MND) in November 2014. Prior to his illness he’d worked in education and been incredibly active; hiking the Shropshire countryside around his home and skiing in Europe. His illness put a stop not only to that, but to any independence of life. He can now no longer walk, has difficulty breathing and has to be hoisted from his bed to a chair. He knows he’s in the latter stages of the illness, and his time is limited. Noel’s illness is terminal and he has naturally started to focus on the end of his life, which he would like to be on his terms. So, in an incredibly brave and dedicated act, Noel became involved with Dignity in Dying; using his own experiences and position to lobby for a change in the law in the UK.

In a better, more advanced, more compassionate country, Noel could make the most of the last months of his life in the small ways he can still create enjoyment; safe in the knowledge that when he knows that the time is right for him, he could call on a doctor to help him die in his own home with family and friends around him. Of course that time may not come. Noel may decide that he wants nature to take it’s course. The key word here is choice. Noel wants the choice to be available to him. Instead, because of archaic British laws which the UK Parliament are too scared to review – in spite of overwhelming support from the British public – Noel has spent his dying months in a legal battle which he’s taken all the way to the High Court.

Today, the High Court has rejected Noel’s bid to have the choice to end his own life legally and on his own terms.

In true Noel spirit, he and his legal team are already looking into the appeal process, on the basis that the 1961 suicide act – which prevents assisted dying in the UK – is incompatible with human rights legislation. Dignity in Dying will, of course, support Noel in his appeal.

Assisted dying in California – Betsy Davis

In November of last year, Betsy Davis – a 41 year old artist also dying from MND (or, more specifically, ALS which is the most common form of MND and also the type that Noel Conway has) held a party at a Californian ranch, surrounded by 30 friends. There was music, laughter, shared stories and memories. At the end of the weekend, she was wheeled out in her bed to watch the sunset and ingest a legally prescribed cocktail of drugs which slowed down her organs until she passed away peacefully. The assisted dying law had only been in force in California for a month.

What a difference this law made for Betsy. Her fear at living the last months of her life entombed in her own body, being fed through a tube and being completely reliant on others for every day care was replaced by a sense of purpose to organise her own exit; to spend her last days and hours how she wanted to, to end her life on a high note created at her own will, rather than in potential excruciating physical pain, and certainly mental anguish.

Support for a change in the law

There is a lot of support for a change in the law; not just from the general public but from people in the public eye.

Dignity in Dying Ian McKewan

Dignity in Dying Jo Brand

The former Archbishop of Canterbury, George Carey, has come out in support of choice.

Archbishop Desmond Tutu also calls for choice, and for that choice to be respected.

Now, if men of the cloth can understand the need for a change in the law, when religion is at the very heart of some people’s objection to assisted dying, why can politicians not see the need for change?

This image of Sandy, for me, sums it up.

Dignity in Dying Sandy

It certainly would have helped my Dad, it would help Noel Conway, and it would help thousands of people both now and in the future. We’re forced to take responsibility for how we live our lives. Let’s be granted the responsibility for how we choose to die, too.

Thanks, as always, for reading. x

Friday Feeling [18] – I’m Ju to the Di

A bit of fun for today’s Friday Feeling.

Dame Judi Dench, aged 82, Shakespearean actor, theatre performer, Oscar nominated, Academy Award winning, Queen Elizabeth playing, James Bond legend and OBE…

…rapping with Lethal Bizzle.

Dame Judi Dench and Lethal Bizzle

Yes, you read that correctly.

Words can’t do justice to how fab it it, so I implore you to watch the clip!

Go Judi!

Have a great weekend and thanks, as always, for reading. x

5 things I say regularly when I’m driving

Great news today that, thanks to a Royal decree, women in Saudi Arabia will be allowed to drive. It’s impossible to comprehend such a level of sexism being acceptable in a modern day society, but obviously Middle Eastern countries operate differently to those in the West. It’s worth celebrating; Saudi Arabia is the only country in the world where women aren’t currently allowed to hold a driving licence. Who knows, it may be the start of further equality in the country (but let’s not hold our breath).

The UK government recently announced that learner drivers in England, Scotland and Wales will now be allowed on a motorway in a dual control car (i.e. with a driving instructor). Personally I’m amazed it’s taken this long for the rules to be changed. Motorway driving is quite different from normal road driving in terms of pace, speed and distances, and it seems ludicrous to me that a new driver is allowed onto such a potentially dangerous highway without any previous hands on learning or supervision.

My little sis passed her test in December last year, and bought her first car in January. She announced a few weeks back that she’d recently been on the motorway for the first time “by accident” but “it was all ok” because she “recognised all the road signs” Phew, eh?! Now, not everyone is as much of a dolly daydream as my sis (sorry Jess!) but there are people out there with little road awareness behind the wheel of a potential killing machine that puts everyone on the road at risk. Dramatic? Yes. True? Very.

5 things - the driving edition

I’m not a particularly patient driver, the fact that I’m always running slightly late means I have no patience for people who dilly dally on the roads, but I do always drive safely and with full awareness of what’s going on around me. Which is much needed because some people either a) don’t have a licence, b) have forgotten how to drive, or c) think the rules of the road don’t apply to them.

My recent experience of driving in Greece, on our day out in the Mani Peninsula, was exactly that – an experience! Apart from the fact that the steering wheel and gear stick were in the wrong place, the mountain roads coupled with the craziness of Greek drivers made for some hairy times! Greek drivers think nothing of overtaking on a bend on the edge of a cliff when a truck is coming in the opposite direction and I admit that a couple of times I just held my breath and expected the worst. The taxi driver who took us to the airport said that it’s because local people know the mountain roads so well, and know what they can and can’t get away with, but surely they don’t know what’s coming the other way?! He was also quite disparaging of drivers from other countries, so I guess we all have a higher opinion of ourselves on the road than that of other people.

Here are 5 things I can be heard saying on a regular basis!

“You’re welcome”

This is dripping with sarcasm, usually shouted at someone who has failed to acknowledge that I’ve given them right of way and let them through. Rudeness – both on the road and in everyday life – really gets my goat. There’s no need for it.

“Got no indicators?”

Often aimed at, but not restricted to, BMW drivers (sorry to generalise, but they do seem to be the worst offenders). Seriously, how difficult is it to flick the little purpose built, conveniently placed stick so that the rest of the world knows which way you’re planning to go?

“You could get a bus through there!”

People who drive a small car but think it has the dimensions of a tank. Know your vehicle and know what it is and isn’t capable of! Don’t wait for a gap the size of 3 lorries to carry on your way.

“Put your foot down, love”

People who drive below the speed limit. What is that all about? The fact you’re in a car suggests you have somewhere to be, so why not drive at the allowed limit and get there a little bit faster? There is no excuse for driving more slowly than you’re allowed to on most general roads.

“Are you fucking kidding me?”

The amount of people who drift into the wrong lane, cut you up, blast their horn when they’re in the wrong, gesticulate wildly or just act like knobheads on the road is unreal. So it makes me feel better to shout. Not at them. Just about them. It’s purely a rhetorical question for releasing anger!

Do you drive? Do you enjoy it? Do you get cross at people like I do?! I’d love to hear from you!

Thanks, as always, for reading. x

 

Friday Feeling [17] – love before status

In the embodiment of the saying “love makes the world go round” a Japanese princess is giving up her royal title in order to marry the man she loves.

In Japanese tradition, if a female royal marries “a commoner” she must renounce her Royal status. Annoyingly, male royals are allowed to marry whoever they choose without having to give up their status, but that’s a rant for another day.

Such is Princess Mako’s love for her boyfriend of 5 years, that she believes it’s worth giving up the rights she was born with in order to be with him. That’s the power of love.

Princess Mako and Kei Komuro

All together now, awwwww!

Read the full story here.

Thanks, as always, for reading! x

The last “first”

It’s been a year today since my Dad died. A whole 12 months. That’s a long time. A lot happens in 12 months. Things change. People change.

This is the last “first”.

We had the first week after he died, then the first month. Getting back from the first holiday without him being at the end of a phone wanting to know everything in detail. Then there was my birthday, with no phonecall from him pretending to have forgotten how old I was, the first Christmas without him, swiftly followed by what would have been he and his wife’s wedding anniversary. The first birthday in March, and his wife’s birthday in April. The husband and I moved house – a major life event that he would have been so proud of. Our first return to Stoupa, a place he loved so much but didn’t make it back to before he died due to chemotherapy.

And now, today, the first year of him not being here anymore.

Loss

It hurts. I know it will always hurt, but today I’m thrown back to that last day so vividly; the early morning phonecall from his wife telling me I needed to get to the hospital as soon as possible; the panic at the build up of traffic as I tried frantically to get there, close family around his bedside, the kindness of the nurses during the long long hours that followed. Hearing his breathing slow down and holding his hand; wanting him to stay for selfish reasons but willing him to go so he wasn’t suffering anymore. And the emptiness afterwards, when he’d breathed his last and we talked to him and cried – as much for ourselves and our massive loss, as for him.

Today is also my wedding anniversary. Rotten timing eh? I’m thankful everyday for the husband. The support he’s given me during this past year has been immense. He’s ace.

So it’s a day of smiling and sadness, all intermingled, as I think of the two most important men in my life now and always.

Thanks, as always, for reading. x

 

Friday Feeling [16] – school friends

With this week marking the start of a new term and “back to school” in the UK after the long six weeks holiday (RIP quiet roads and stress free commutes to work), I’m sure that there are kids – and parents – across the country who are worried about going back to school or starting a new school, the potential for bullying (such a problem, which is seemingly getting worse), or even just not making any friends.

Imagine then being a young immigrant from Syria, coming to the UK and starting school in Manchester; knowing no-one and not knowing what the attitude towards you will be in view of the negative press that refugees receive. Pretty stressful eh?

Praise then for 12 year old Jack, who saw new boy Rani sitting alone and invited him to join his group of friends. The boys bond over a love of sports and Jack helps Rani with his English skills proving that, despite their different upbringings and backgrounds, friendship can bridge gaps. Aw!

Jack and Rani Educating Greater Manchester

Watch Jack and Rani being interviewed on This Morning with Ruth and Eamonn.

The boys are also featured on new TV series Educating Greater Manchester, which follows teachers and students at a secondary school in Greater Manchester, aired Thursdays at 9pm on Channel 4.

Thanks, as always, for reading. x

A perfect summer’s day

Hey! I’m back from my week in Greece, more on that later in another post. It was so nice to land on Sunday afternoon and be met by warm sunny weather, rather than the usual shock to the system when you’ve been in warmer climes. Even better was having an extra day off in the form of Bank Holiday Monday to soften the blow of being home, and yesterday was gorgeously warm and sunny in Birmingham. Yesterday was everything that every weekend was supposed to be in summertime, but has mainly failed miserably due to our rubbish British weather.

I had a lazy start to the day, a leisurely walk to the shops for breakfast supplies, and ate a sausage and mushroom sandwich. Then I pottered around in my garden, trimming bushes and hedges, pruning my overgrown climbing roses, watering all my plants that were thirsty after a week with no love or rain, and repotting rose bushes and french lavender to give them more space to grow.

It’s been so long since I’ve been able to spend any length of time out there because of the rain and general non-summeriness. I’ve probably not had a proper potter since the beginning of July. I was in my element; it’s exactly how I hoped to be spending my summer days. In truth I’d written off any chance of it happening as summer draws to a close (boooooo) but it was great to have a last hurrah.

Sunglasses in the garden

I’ve loved populating my green space with pretty stuff. These ornamental ladders came via a well timed trip to HomeSense, after I’d spotted similar on Pinterest.

Ornamental ladders

I’ve stacked them with pretty lanterns and solar lights from Poundland; they have such lovely garden bits and pieces.

Garden ornaments

These lightbulb shape multi-coloured solar lights were last year’s Poundland, from the Charlie Dimmock garden range (there’s also a blue and yellow one hidden from view)

Solar lightbulbs

These are my favourite garden ornaments though; Easter Island head planters from B&Q with blue grass “hair”. We call them Bert and Ernie (Bert is on the left with the emo sweepy hair and Ernie has the big forehead!)


In the evening we ate Chinese takeaway in the last of the sun and then watched the last two episodes of Game of Thrones season 7, catching up on the one we missed last week while we were away, and yesterday’s season finale. No spoilers, but I was slightly disappointed; previous seasons have led to big expectations!

How was your bank holiday?

Thanks, as always, for reading! x

Friday Feeling [15] – a distraction from the horrors of real life

I could post today about the horrors in Barcelona. But what would I say? I would say that the world can be a horrible place. I would say that terrorists are evil people with a strange comprehension of what is right and wrong. I would say that I can’t imagine how the families of those innocent people caught up in a religious and political war must feel, and how they will ever put themselves back together. I would say that it’s scary how places many of us may have visited, or wanted to visit, are being targeted by these inhuman scum; that it could have been any of us caught up in another senseless tragedy.

But most of us already know those things. And saying them again doesn’t change it. We can only keep good people in our hearts and hope for better days ahead.

In the meantime, have a chortle at my favourite panda video. Because I truly believe that it’s impossible to be truly sad whilst watching pandas being…well…pandas!

Thanks, as always, for reading. x

Friday Feeling [14] – Cycling Without Age

It’s a sad fact that as people get older and less mobile, they’re less likely to get out and about; especially if their family isn’t around or they’ve had to move to a residential home.

Cycling Without Age – a volunteer staffed initiative based in Falkirk – aims to change that. Young, fit and healthy volunteers are taking elderly people out on 3 seater rickshaw style bicycles around the local area and countryside.

How amazing is that?

Look at their faces!

Cycling without age Falkirk

You can read more about it, including a link to the BBC 3 Amazing Humans film that was made about it here.

Thanks, as always, for reading. x

5 things I discovered last week

Life’s an education, as the saying goes (unless I just made that up?) and last week was no exception! I made new discoveries, refound old discoveries and created a new and tasty drink!

  • Aidan Gillan who plays Littlefinger in Game of Thrones was also in Queer as Folk (I used to love that show…)
  • Cherry lambrini adds a whole new dimension to Pimms (don’t judge me, this was the result of a Good Housekeeping article although they suggested cherry juice rather than alcoholic cherry wine, but still)
  • My stripy jeans still fit me, and are perfectly acceptable work attire (benefits of a casual office)
  • The Bob Marley song “Don’t Worry” is actually called 3 Little Birds (this one blew my mind a little)

Bob Marley 3 Little Birds quote

  • The Money Pit still makes me laugh like a drain, especially this scene – Tom Hanks does comedy so brilliantly!

Tom Hanks The Money Pit

What did you discover or rediscover recently?

Thanks, as always, for reading! x