Death in the time of coronavirus

My beloved mum died at the end of August and I’ve been wondering how to write about it for a while now.

I’m not sure it has much to do with the subject of my blog but I want to write about it and it’s my blog, so here goes.

Mum took ill at the care home she lived in in Glasgow one day in late August. She was taken to hospital, and things deteriorated very quickly. Two days later, my five brothers and I found ourselves on a call together where we had to decide whether to authorise a specific medical procedure, which would be distressing for mum and had no guarantee of success, or to stop treatment, have the staff make her comfortable and let nature take its course. It took us seconds to come to the unanimous decision that we didn’t want her to suffer if it could be avoided. Less than two days later, she was gone.

I took a train up to Glasgow from London as soon as I could after that call. Mum died less than 36 hours after I arrived – and less than eight hours after my older brother, the oldest of my siblings, arrived, having flown back urgently from abroad. My other four brothers were already there.

Mum, who was 83 and had dementia, never really regained consciousness after entering hospital. Nonetheless, perhaps she sensed the constant stream of love that flowed towards her in her final couple of days as her children, daughters-in-law and grandchildren came to sit and spend time at her bedside. Others – grandchildren who couldn’t be there for whatever reason (Covid-related restrictions largely), sisters-in-law, son-in-law, children’s partners, nieces and nephews, and friends – video-phoned to say goodbye, or passed on their goodbyes via those of us who were there.

We are all beyond thankful that she was moved to hospital from the care home she was in. After months of enforced non-contact because of Covid, we were finally able to kiss her, touch her and hold her hand.

Towards the end, all six of her children were with her, gathered round her bed. The usual talk and banter that happens when we’re all together was mixed in with the sadness and sense of occasion.

It was a very special time. We all felt very strongly the bonds that linked us all. It was a privilege to be there.

Mum had been such a focus for myself and my brothers since our dad died almost five years ago. Her death is huge loss. However, as the pandemic rages on and we face another lockdown, I think we also feel a certain sense of relief.

While this gracious and giving elderly lady didn’t die of coronavirus, she was most definitely a victim of it. She thrived in company. The restrictions introduced under the pandemic deprived her among other things of almost all contact with the family she loved and her resulting decline was sad to witness.

The pain the pandemic has caused and is continuing to cause is immeasurable. The way in which it is affecting people in care homes seems inhumane. It beggars belief that in seven months we haven’t found a way of enabling relatives to spend time with their loved ones in care homes, many of whom – no matter how high the level of care they are receiving – are suffering huge mental anguish and physical decline as a result of their enforced isolation. We’re protecting lives at the expense of quality of life or living and I can’t genuinely say I think that’s the right thing to be doing.

When it became clear that the virus was here for the duration and that visits to care homes would be severely curtailed, my brothers and I would chat about what the best outcome might be for mum. We used to say – in all seriousness – that the best thing would be for us to take her from her care home, have her spend a week with each of us during which time we’d have her singing, dancing and enjoying being in the moment – at the end of which she would somehow simply pass away. We knew it wasn’t practical but it was a nice idea.

My mum wasn’t aware I’d been diagnosed with incurable breast cancer. When I found out myself some 20 months ago, I decided there was no point in telling her. My brothers were quick to agree. Her dementia meant she would either forget we’d told her or she’d be terribly distressed by the news – or indeed both, at different times. I’m glad in a way that she didn’t know; that’s not the kind of news a parent needs to hear.

The photo below is from a year-and-a-half or so ago; it’s one of my favourites.

I take comfort from the fact that I saw my mum in good health and in good spirits – relatively speaking – just a few weeks before she died. It had been nine months since I’d last seen her. I don’t believe in fate, but on this occasion I feel a huge urge to thank my lucky stars that I made the decision to take that trip up to Glasgow when I did.

We’re lucky in comparison with the many, many people who weren’t allowed to be with their loved ones towards or at the end. There was lots we weren’t able to do because of the restrictions, but this was as good an ending as we could have hoped for – even in non-Covid times, I think it would count as a good death. Never in our wildest dreams did we think that we’d all be able to be there with her, together.

Not only that, we were able to deliver a eulogy as part of the funeral service in my mum’s local church. It was the first time this had been allowed since the start of the restrictions. Most of the immediate family was in the church, including all 13 grandchildren. The allowed maximum number of funeral attendees in Scotland at that point was 20; we managed to make it 21 by having one daughter-in-law as the cantor! The service was streamed so people could watch it online. While we weren’t allowed to carry the coffin out of the church, my brothers and I were able to carry it from the door of the church to the hearse that was waiting just a few yards away. This was symbolic as much as anything but the six of us had carried my dad and it just felt right that we would carry on this last part of her journey this woman who’d carried us – both physically and metaphorically.

Relatives and friends who hadn’t been able to attend the service gathered at the cemetery – in foul weather.

Afterwards we even managed to have a socially distanced buffet for the immediate family.

A day or two after my mum died, my brothers and I gathered together to reminisce and play cards. The following day, restrictions were put in place that banned indoor gatherings in that part of the city.

It seems the gods were on our side in many ways.

I’ve been wondering what all this has to do with my condition.

It’s relevant because the way I look at death has changed as a result of my diagnosis. I’ve had to come to terms with the fact that I will die “before my time” and for me at least, it helps to talk about it, to acknowledge it, and to plan for it. It’s not an easy thing to do, but we should all talk more about dying.

As part of that process I came across Dr Kathryn Mannix, a palliative care doctor in the UK who advocates for more openness around the topic of death. I’d highly recommend her book, With The End In Mind (how to live and die well).

Coincidentally, Dr Mannix shared a thread on Twitter just as it became clear to us that my mum would not be with us for much longer. I in turn shared the thread with my brothers. We all took comfort and strength from her words.

“When we take our turns at the bedside, or the virtual bedside, of our beloved dying person, it’s a memorable and profound experience. It is life-changing. It is our privilege to be there for each other as we learn the lessons of the deathbed.

As we sit with our beloved dying person, we are exchanging our final gifts. We are giving them the gift of our companionship and attention, and they are giving us the gift of showing us how to die. It’s an act of love.”

That’s exactly how it felt. We felt blessed.

When I wrote my last post, I’d just had my first scan since starting on oral chemotherapy at the end of May. I’m happy to report that the results showed my cancer is stable, with no signs of progression. Overjoyed wouldn’t be an appropriate emotion given that things can change from one month to the next, but that’s as good news as I could hope to get. Also, the tumour marker level that went up last month went down slightly this month – not by much at all but at least it didn’t go up. Again, the word thankful springs to mind.

Recurrence 6: I can’t stand that Jamie Lawson song

I was sitting in the kitchen earlier today enjoying the late summer sunshine reading the Sunday papers and listening to the radio when I heard Jamie Lawson sing his hit song, “Wasn’t expecting that”, on stage at BBC Radio 2’s Live in Hyde Park “festival in a day”.

Who would have thought that a song that ends with a middle-aged woman dying of cancer would be so popular? But that’s just what “Wasn’t expecting that” is about, isn’t it? A lot of people clearly love it. For the record, I’m not one of them. I can’t stand that song.

I guess it might be a cancer other than breast cancer that kills the woman in the song. It doesn’t matter. It’s all lovely, lovely, lovely, then the final few lines when they come are like a punch in the stomach. I guess you’re meant to think you weren’t expecting that. Clever, eh?

You could argue the song’s raising awareness about cancer recurrence. In breast cancer, recurrence is definitely an area that needs more attention (see Recurrence 1, 2, 3, 4 & 5). Even so, I really don’t like it; it’s just too sad, and as if that weren’t bad enough, it’s maudlin too. Take a look at the last verse (ignore the bad grammar in the first couple of lines!):

When the nurses they came
Said, “It’s come back again”
I wasn’t expecting that
Then you closed your eyes
You took my heart by surprise
I wasn’t expecting that

I rest my case. Now I know as kids we would all belt out the Terry Jacks 1974 chart topper, Seasons in the Sun, but that was then and this is now. I would have been a carefree 11-year-old in 1974; now I’m a 53-year-old who’s had breast cancer.

Incidentally, I’m back at the hospital tomorrow for my third cycle of zoledronic acid, the bone-hardening drug I currently have a dose of every six months to counteract the bone-weakening effect of letrozole, the anti-hormone therapy that I take daily to reduce the risk of my breast cancer coming back. Zoledronic acid, too, has been shown to improve survival in post-menopausal women like me (Breast cancer does indeed “come with baggage”), by reducing the rate of breast cancer recurrence in bone. I can’t believe it’s six months since I had the last round. When  I see the oncologist tomorrow, we’ll also discuss my “trigger thumb“, a painful and really annoying condition in which your thumb catches or locks when it’s bent. It’s a known, although rare, side effect of letrozole and I’ve had it in my right hand for nearly two months now. Potential options include, it seems, corticosteroid injections and/or surgery. Hey bloody ho.

PS Jamie Lawson, if you ever read this, I love the rest of your stuff!

 

 

Yes, you could get hit by a bus but…

Lots has already been written about what to say and what not to say to people who’ve got or who’ve had cancer. As for me, now that I’ve had a chance to think about it, I know there are certain phrases that I myself may have used in the past that I will never use again in any circumstances – except perhaps as a joke.

I’m aware I’m probably more sensitive to things like this now, and I know we often say things with the best of intentions, but I’m banishing the following from my vocabulary from here on in:

  • “It could be worse.” How often do we say this? Of course it could (almost) always be worse, but if you’ve been diagnosed with breast cancer, it could also be a whole lot better.
  • worse“You could get hit by a bus.” Again, of course you could, but it’s extremely unlikely. Everyone knows, or knows of, a good few women who’ve had breast cancer. How many people do you know or know of who’ve been hit by a bus*? The most recent figure I could find for pedestrian fatalities in road traffic accidents in Great Britain is for 2014 and it’s 446. And I imagine most of those casulaties will have been hit by a car, not a bus. In the UK, there were around 53,700 new cases of invasive breast cancer in 2013 and around 11,360 women died of breast cancer in 2014. There’s no comparison really, is there?
  • “We’ve all got to die of something.” This one now strikes me as particularly insensitive. Of course it’s true, but if you could choose how to die**, I’m assuming no-one would ever choose breast cancer, or indeed any kind of cancer.
  • “If you’re going to have cancer, breast cancer’s a good one to have.” I’d heard this and kind of accepted it as fact… without any knowledge whatsoever. I know why people say it. Breast cancers generally don’t grow as fast as some other cancers, it’s usually obvious how to treat breast cancer and lots of people who are diagnosed with breast cancer and treated are effectively cured – in that it doesn’t come back. But there’s no guarantee. Also, there’s breast cancer and there’s breast cancer; some cases are much more serious than others and there are different types, some of which are much harder to treat than others. The bottom line is that no cancer is good to have.

It’s obvious why we say phrases such as these. We have a need to try and rationalise things that happen to us that we weren’t expecting and that frighten us. Or we want to say something to reassure either ourselves or the people we’re talking to. Or we’re embarrassed and we feel words are better than silence. We mean well. Nonetheless, I won’t be saying these particular phrases again. I don’t think my vocabulary will be any the poorer for it.

*I do in fact know someone who was hit by a bus. She’s a very good friend and was on her bike at the time. Many years later she still has a dent on her chin from the encounter!

**If I had any say in the matter, I think I’d choose to die the way my 94-year-old mother-in-law died just this weekend… of old age, peacefully, in the company of loved ones. Lilian was an important and lovely part of our lives; we’ll miss her.

Being a ninja and benchpressing cadillacs

I really don’t buy into the idea that what doesn’t kill you makes you stronger cadillacso I loved this cartoon about benchpressing cadillacs when I came across it.

Challenges such as having cancer are life changing for sure, but it’s clearly nonsense to say that every hard knock you take in life makes you stronger. I’ll come out of this different, certainly. Chastened, definitely, and more appreciative of what I’ve got and grateful to be alive. But stronger? I’m really not sure. Anyway, as my two teenage sons would say, what does that even mean?

As for this second cartoon, about God and ninjas, I just love it. ninjaThat really is the way I would feel at the moment if I were at all religious.

All the way through my treatment, I was determined to stay positive and work my way through it, taking things as they came. I was determined not to feel too sorry for myself… and I didn’t want anyone else to feel sorry for me either. Then my dad died (In Glasgow again, but for the saddest of reasons) and I thought, ok, there really is only so much a person can be expected to handle at once. So when a friend posted a version of the ninja cartoon on Facebook* the other day, I thought that’s got my name written all over it.

Even now though, I can’t bring myself to be too despondent. It’s tough, but my treatment has gone well, I have an amazing support network of family and friends, I’ve learned a lot, made new friends and met some amazing people, etc, etc. As I’ve said before, things could be worse (It’s not all bad).

That said, it would have been nice if Scotland had beaten England at rugby in the Six Nations Tournament yesterday! And this weekend I’d have loved to have been sorting out my own ski gear as well as helping Andy and the boys sort out theirs for when they head off to France this coming Sunday for the half-term week… while I stay here and plough through a week of radiotherapy.

To be fair, it was I who persuaded them to go skiing. Andy took a bit of convincing but for the boys it was a no-brainer. Hang about in London with mum at home most of the day cramping their style or go skiing with dad and friends? I know what I’d have chosen. “Do you think it’s right to go skiing without mum?” Andy asked them a while ago. The reply: “Well no offence to mum, but she goes skiing without us.” Fair enough, I guess (I love Glasgow, but it’s not Geneva). I think I can hear the sound of chickens coming home to roost.

I genuinely hope they have loads of fun. I’ll enjoy it all the more if I go next year for not having gone this year.

*The cartoon that the friend posted on Facebook was funnier than the one I’ve used here. The FB one used the real f word – but my mum reads these posts so I looked for a version that wouldn’t offend her! 

 

 

 

 

 

Why do we have to “battle” cancer?

Veteran BBC television and radio presenter Terry Wogan died earlier today after a “short but brave” battle with cancer. David Bowie died of the disease a few weeks ago after “a courageous battle”. Actor Alan Rickman followed Bowie; unusually, his family seemingly chose not to use any fighting analogy.

It seems if you’ve got cancer you’re almost always seen as battling or fighting it, more often than not bravely. We never hear of anyone dying of the disease after a lacklustre, take or it or leave it, weak-willed tussle.

Can’t we be allowed just to have cancer and get on with it? Especially if it’s terminal as it was with Wogan, Bowie and Rickman.

In Glasgow again, but for the saddest of reasons

How do I work into a blog about my breast cancer and me the fact that my dad has just died? The only way, I’ve decided, is to come straight out and say it.

Because how else do I explain the fact that I’m up here in Glasgow less than a month after my operation (Saturday’s op – a daunting prospect but a key step on the road to wellness) when I really didn’t plan on moving very far at all from home in south London for a good six weeks?

I got a phone call at 5 o’clock on Sunday morning from the oldest of my five brothers saying my dad had died unexpectedly a couple of hours earlier.

That’s the dad who throughout my breast cancer ordeal asked questions about how I was really feeling that no-one else asked and that showed how much he cared and understood. That’s the dad who with my mum had phoned me every single day since my operation on 19 December to see how I was doing. That’s the dad who had recently taken to telling me he loved me at the end of every phone call. That’s the dad who again with my mum read my blog religiously and when I wrote about the bad days told me how sorry they were that I was suffering. That’s the dad who felt bad he wasn’t mobile enough to come down to London to be with me after my operation. And that’s the dad who was so, so grateful that I made it up to visit between one chemotherapy session and the next in September last year (It’s not all bad & Thanks, baby bro!) and then again before my final chemo session in November (I love Glasgow, but it’s not Geneva & 19 December – it’s official).

I declared myself fit enough to travel and took the train up to Glasgow on Monday afternoon, straight after my appointments at the clinic with the oncologist and the physiotherapist (A busy week with welcome news – “no mass identified” and “no further surgery necessary”). I’ve been here since, staying with my mum. Everyone is very conscious that I’m recovering from major surgery. Rather than me help look after my mum, she and I are being looked after in a sad but incredibly nurturing atmosphere by an army of carers comprising my brothers, sisters-in-law and an assortment of nieces and nephews.

Those 20151122_005054 (2)two recent visits of mine were the last occasions my parents, brothers and I were all together. Over the past few days, we’ve wondered at the ironies of life and reflected upon the fact that these gatherings only happened because I had cancer. What’s lovely is that all of us – my dad very much included – appreciated at the time how fortunate we were to be together.

Later today I’ll head back home to London, where I’ll be until I come back up to Glasgow a few days before the funeral on 1 February. I’ll have been here these past few days for the saddest of reasons, but much as I’ve missed my three boys at home, I really couldn’t have been anywhere else.