An update

In the grand scheme of things, I’m quite relieved at the results of my latest round of blood tests.

I met the oncologist earlier this week to discuss the results of the tests I’d had done the previous day. The best I could have hoped for was for my tumour marker to have stayed at the level it had jumped to in December. I figured that was unlikely given that it had risen by a whopping 20% between the November and December blood tests. In the event, it went up by around another 10%.

On the upside, on the blood front things are good. The secondary breast cancer that has spread to my bones has also infiltrated my bone marrow and so reduces my body’s ability to make healthy blood. It was therefore good to hear that my haemoglobin count is up from last month and is again within the normal range, albeit at the very lower end. My neutrophils, while still below the normal range (they’ll never be there again), are 40% up on last month. That means I’m a little better placed to face any infection that comes my way – a positive in the current climate.

Once again, it’s swings and roundabouts. The tumour marker is up but bloods are ok.

With the pandemic still on the rampage, every effort is being made to minimise the number of trips patients on treatment make to hospital. For example, every other appointment with the consultant over the past nine months has been on the phone rather than in person. In fact, I may have had more over the phone than not. Some people don’t like this way of communicating but it’s fine by me. In addition, for my next two rounds of treatment, I’m going to self-inject at home the bone strengthening drug (denosumab/Xgeva) that I have at the start of every new cycle. It’s usually done by one of the oncology nurses at the day treatment unit at the hospital. I did it myself last month at the unit under supervision and that too was fine.

The fact that the marker is going up indicates that there is increased cancer activity somewhere in my body. That’s what happens with secondary cancer. It eventually outwits every possibly treatment. While these latest results were far from disastrous, you do have to be practical. The oncologist therefore discussed with me what drug(s) I might move onto if the scans I’m to have in seven weeks show signs that the cancer has progressed to the extent that we need to change to another treatment. The scans could show any number of things. While you can’t predict a precise course of action in advance as you don’t know what you’ll see, you can be thinking of what might need to happen under various scenarios.

The discussion was quite sobering. But let’s not pre-empt things. That decision – if indeed a decision needs to be taken – is eight weeks away. In the meantime, I carry on with my current treatment and just get on with things.

One of those things is reporting my health status daily on the Covid Symptom Study app – covid.joinzoe.com – that is used to study the symptoms of COVID-19 and track the spread of this virus that is causing such devastation and unimaginable heartache to so many. (On a personal level, next week will see the funeral of a good friend’s husband who died from COVID-19 just after Christmas. His death was heartbreaking on many levels.)

It seems heartless to carry on writing about my own experiences having just written those previous two sentences, but the case is that I reported having a runny nose on the Zoe app, as it’s known, one day last week. While a runny nose is not a symptom of infection with the virus, I, together with any other household members, was “invited” via the app to take a test. It was all very efficient. The test kits were delivered the day after we requested them, we posted them back the following day and got the results – negative in the case of both myself and my husband – 36 hours later via text and email.

I reckoned the results would be negative but, with transmission rates as high as they are, you can obviously never be sure. Our two boys are back at uni and so it’s just my husband and me in the house. I work from home so it’s been a few weeks since I’ve been out for anything other than to exercise or attend hospital appointments. In my husband’s case, it’s for exercise or shopping. I now exercise on my own; I’ve even stopped the walks with friends that had become such a regular and welcome feature of life.

I’m feeling well on the whole and another thing that I’m doing now that I don’t meet up with friends for walks is go out almost every day either for a run or a bike ride. The reason is that I have signed up to a bit of a mad challenge that involves running and/or cycling a total of 192 miles between the beginning of January and the end of March. I could do it all on the bike but I’ve decided to do as much of it as I can on my own two feet rather than on two wheels. Running is so much more challenging than cycling, at least it is for me given the pace at which I cycle. I run incredibly slowly but I guess it still counts as running in that I do overtake people who are simply walking!

There’s no way I’d be running if a friend hadn’t suggested we both sign up for this challenge. Even after having signed up, I’ve had to come up with an incentive to get me out running. I wanted to listen to Transmissions, a multi-episode podcast that I’d heard was really good – about the iconic Manchester bands from the 1980s, Joy Division and New Order. I decided I would only listen to the podcast while running. It was a good plan and it works both ways. I’m loving the podcast so much that I go out running so I can listen to another episode and listening to the podcast makes the runs easier.

This has been a good week for running. I’ve got the week off work, so I’ve got no excuse really. I’m in the category of people for whom work has never been busier and I worked part, if not all, of each of the four working days between December 24th and 31st. It has been so relaxing to have a big chunk of time off. The house is very quiet now that the boys are away again. We had a lovely Christmas together. It’s usually just the four of us anyway on Christmas Day so in that sense at least it wasn’t so different from other years.

The photo above on the left is of me on the 25th, relaxing on the sofa with two of my presents after an almost two-hour spin on the bike – out to Richmond Park, a favourite destination around seven miles away.

The photo on the right was taken in our garden by my husband not long after the bells on New Year’s Eve.

Hogmanay, as we Scots say, normally makes me feel quite melancholic. This year, though, presumably because of all the sadness that 2020 held, it felt important to celebrate and look forward – both because of and despite what the future may bring.

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.