Comfortable at home

A lot’s happened since I wrote my last blog. The bottom line is that Ive stopped active treatment against the secondary breast cancer I was diagnosed with in March 2019 and I’m comfortable at home with possibly just weeks left before I die.

That’s such a difficult thing to write and a difficult thing to be living with but I can’t hide from it any longer. And it means I can have those very tender conversations with my beloved husband, sons, brothers, nieces and nephews, friends, colleagues and so many others. I can let everyone know what stage I’m at on my journey through this life.

I’ve had the support of my oncologist and her team every step of the way and frankly I can’t believe I’ve had three such good years since my diagnosis. I can’t thank her enough.

The cancer that was advancing through my body has, sadly, spread even further. In addition to the courses of chemotherapy I’ve been receiving, I’ve also had whole brain radiotherapy. There’s one further chemo available but I’m assured it won’t work and the side effects are brutal.

So for the last couple of weeks it’s been end of life care – at home. I now live downstairs, with all the medical paraphernalia that entails, including the marvellous 24/7 syringe driver that provides me with constant and continual pain relief and anti-nausea treatment.

At various critical times throughout the day, I take steroids to reduce the swelling in the brain, three or four different laxatives to tackle the constipation that the antinausea drug in the syringe driver causes and, critically, an anti-epileptic to deal with any seizures. I have blurred vision, which makes things very difficult. I can only see with any clarity at all things that are at about 8 inches away. If you come and visit me, I’ll only know it’s you by your voice unless you’re within that sweet spot. But at least I’m at home.

It took a long time to get me here from hospital; my last stay, when I was very ill, lasted two weeks. I realised I could die in hospital and I didn’t want that. But they couldn’t discharge me with the symptoms I had as they could only be treated in hospital. I won’t go into detail but I had great difficulty keeping down food and fluids, along with various other serious issues that thankfully have now been addressed. Now I have a team of carers who come in the morning to wash and dress me for the day, the evening to wash me and get me ready for bed so that I will sleep comfortably and during the day to replace the syringe driver when it’s nearly empty. All this had to be in place before I could be at home.

The healthcare teams were amazing in getting me well enough to come home. This time two weeks ago there were days when I barely knew what a phone was.

I am now under the fantastic care of the local hospice. I don’t want to be resuscitated if it gets to the stage where that’s an option. I’ve told my nearest and dearest there’s no need to feel guilty if they choose not to be there or indeed if they want to there but can’t make it. I will either die at home or at the hospice – but not in hospital. 

Life has been so, so good but it’s time to let nature take its course. Accepting that and letting everyone know is such a relief. I’ve had so many beautiful visits, messages and gifts from friends and relatives. They all agree that carrying this knowledge is much better than getting a surprise email or phone call bearing the sad news that I’ve just died. We’ve been able to celebrate our relationships with each other in a way that wouldn’t have been possible had I not been so frank. Friends have weeded and tidied my garden for me; they’ve massaged my feet and hands; they’ve painted my nails; they’ve brought frozen strawberry daiquiris; or we have simply just revelled in each other’s presence.

Those of you who follow my blog may remember I wrote about a wonderful country music song called Bring my Flowers Now (While I’m Living). That’s what’s happening now. I’m genuinely living “with death in mind” and hope that I will have a good death. 

I don’t know if I’m going to be able to continue with this blog for much longer. So let me say now how thankful I am to you all for reading it over the years and for your support. It’s been an important part of my cancer journey, allowing me to organise my thoughts and emotions. Living with advanced cancer is hard, but if what I’ve written has helped any of you, then I’m humbled and grateful.

The busy business of living under lockdown

Another four weeks gone by, another round of treatment started.

Last Wednesday, I had the usual blood tests – plus a couple of additional ones that I have every so often. The following morning, I got the all-clear to go ahead with treatment in a phone call from the oncologist, so off I went to the hospital later that day.

I had my temperature taken and was given a face mask before I could enter the oncology day unit, which has been re-sited to a stand-alone building away from the main hospital buildings to reduce the risk of patients catching or spreading the coronavirus. I had my various injections (fulvestrant, denosumab and filgrastim), was given my next 28-day supply of abemaciclib tablets and an extra filgrastim injection to give myself mid-cycle to boost my white blood cell production and headed home again.

That’s cycle #13 under way with the core drugs I started on a year ago now. On 23 April, I passed the first anniversary of my unofficial diagnosis of metastatic breast cancer. Official confirmation came shortly after that the primary breast cancer that I’d been treated for almost four years earlier had spread to my bones (mainly my spine) and was also in my bone marrow.

There were a couple of changes but no big surprises on the blood test front. The relevant tumour marker has gone up as it has done every month since November. And while my red blood cell or haemoglobin level varies by the month, this time it had dropped to slightly below the normal range for the first time since September. It’s been going down since February or March. That unsettles me. I feel fine largely, but maybe that explains why my running has become little more than a brisk walk! I need some excuse so I’ll take that one.

During the phone call with the oncologist, I decided to take the opportunity to ask her to talk me through every possible drug treatment option from here on. She did, in great detail. It seemed like a good idea at the time but I spent much of the following day really out of sorts thinking about the enormity of it all. Plenty of good things happened that day but overall I would not describe it as a good day. Days like that are allowed every so often.

It’s been an eventful few weeks, despite lockdown.

For starters, I had a week off work. It’s been super busy and it was good to get some time off, especially so when it coincided with some fantastic weather here in my little part of south west London.

I read a couple of books. I got my summer clothes out and had a bit of a wardrobe clear-out. I polished four pairs of shoes that were sorely in need of cleaning and I replaced a pair of shoe laces that had needed replacing for at least a year. I prepped the garden for some plants I’m hoping will be delivered this week or next. I thought I’d mastered making flapjacks, but then promptly burnt the next batch.

I’m in the category that I’m terming “vulnerable but no longer shielding” – my oncologist said last month that she was happy for me to go out for exercise. I decided I could safely do socially distanced cycling, so in that week off I went for a couple of longish bike rides, through a beautiful and largely deserted central London. Being out on the bike felt very good indeed.

Over the past few weeks, I’ve also had a clear-out of my “memory box”, which in my case was a suitcase. It was a joyous thing to do and I highly recommend it.

There was the odd photo; not many though – the boxes and files of photos are  another thing entirely.

There were dozens and dozens of cards. Mother’s Day cards. Birthday cards. Christmas cards. Valentine’s Day cards. Wedding cards. Postcards from friends and family. Letters from old boyfriends. Dozens of cards and letters from my now husband. Wedding invitations. Orders of service from funerals. Letters from my brothers when they were away travelling, from Sri Lanka and Australia.The two cards I received from friends asking me to be godmother to their children.

There’s a letter from my late dad from when I was living in Spain in the mid 1980s. That’s one to keep – my dad never wrote. There’s also a cutting from a Spanish newspaper; it’s a photo of me on my now husband’s shoulders at a march in Madrid from around the same time (see below). Ticket stubs from dozens of concerts, going back to when I was in my final years at school the late 1970s. The ticket from my first flight. My first pay packet, from 40 years ago – four hours work in a grocer’s at 74p an hour. My first proper job offer in London. Exam certificates and indeed exam papers, that I couldn’t possibly answer now.

Madrid, December 1984

There are also medals and certificates from various 10k runs and the odd half marathon done over the years. My fastest recorded time for a 10k run, in London in 1993 when I would have been 29 or 30, was just under 50 minutes. Not brilliant, but not bad. It would take me more than half an hour longer at my current speed.

I was brought up a catholic and there was also the certificate from my first holy communion when I was seven and the rosary beads I had as a child. It seems really strange to me now that I kept these. I’ve been lapsed for so long, but perhaps there’s something in the saying “once a catholic, always a catholic”.

I came across an English project from secondary school. I got an A*, which came with a comment of “very competent”. For an A*? That seems rather harsh. I don’t recall feeling anything other than pleased at the time but I’m outraged now! Surely an A* deserved very good, or even perhaps excellent.

And then there’s the certificate thanking me for having been a blood donor. I gave blood 22 times in the UK before a gastrointestinal complaint I had nearly ten years ago meant I could no longer donate. I remember being gutted at having to stop. I loved giving blood – it made me feel part of something bigger. I donated 23 times in total. My first donation was at a mobile unit that had pitched up at the campsite I was staying at in the south of France for the summer between first and second year at uni. The incentive was that they handed out free sandwiches after you’d donated. None of us there had much money so it was a no-brainer! As you can see, I have the certificate from that too.

I’d gone to France on the train from Glasgow with a friend from uni after seeing a notice for summer jobs on the student union notice board. We ended up selling apple donuts (no hole in the middle) and ice creams on a nudist beach for six weeks. It was an interesting experience to say the least. I’d turned 18 just days before I left for France and was still pretty naive – I was less so by the time I came back! 

I’m going to get on my high horse here and say that if you don’t give blood and there’s no medical reason preventing you from doing so, you need to have a word with yourself. Having a genuine phobia of needles also gets you off the hook but just being a bit nervous around needles or can’t be bothered really doesn’t cut it. Say you get sick and you need, for example, chemo or antibiotics via a drip, or indeed, a blood transfusion. Are you going to refuse on the grounds that you don’t like needles? No, I didn’t think so. Do it, it’s your civic duty. You won’t regret it. Incidentally, I’ve had all three procedures I mentioned. That’s incidental, though; I’ve always felt strongly about this.

Other things have happened.

Some exciting cycling plans I had for the summer have been scuppered, thanks to the coronavirus pandemic. My diagnosis last Spring meant I had to give up on plans to ride a few stages of the Tour de France a week before the real thing in July as part of a big fundraising event known as Le Loop. My heart therefore skipped a beat in December last year when they released the route of the 2020 tour and I saw there were going to be two back-to-back flat stages. Flat is not usually a word you associate with the tour, and my interest was piqued. Each stage was 100 miles but I was feeling much fitter than I thought I’d be. I mulled it over for a bit and decided that if I were still well and suitably fit come July, I’d go for it. I wouldn’t have to raise any money as the money I raised last year would roll over.

No-one knew of my plans other than my oncologist, my husband and two boys, and the lovely people at Le Loop. My plan was to crack on with the training – quietly and without any of the fanfare that accompanied my plans last year – then do the event, completing what I saw as unfinished business. Anyway, like many charitable events and so much else, this year’s Le Loop has been cancelled, having initially been moved to the end of August. It’s disappointing, but for me what matters is that I felt well enough to at least consider going for it. There may be a chance to do it next year, or there may not. There’s no need to think about that at present.

I heard someone say on the radio the other day that no matter how inconvenient things were for them under lockdown, they were very much aware that they “weren’t the victim here”. That resonates with me. Of course it gets you down and you fear for the future, but I can’t feel too sorry for myself. Too many people are losing loved ones and there’s too much real suffering going on. As for the fall-out of it all, we have no idea.

My family’s safe so far. My mum is in a care home in Glasgow. That’s a big worry in itself but to date thankfully the home has managed to stay cononavirus-free. I haven’t seen my mum since last November. That’s also tough, but we know she’s well cared for and we’re relieved she’s well. Those of my brothers who live locally pay regular visits and chat to mum from outside, through the window of her room on the ground floor.

Here in London, somewhat selfishly, my husband and I are relishing having our boys back home. They were both away at uni, in their first year and having fun, and while it’s only right that they’d much rather still be away, their very presence makes us happy. They probably find us as annoying as you’re meant to find your parents at that age, but I hope they’re at least feeling the love. They’ve reverted to pre-uni status whereby they spend a lot of time in their rooms, but supper together is sacrosanct (we all take turns at cooking) and we have carefully negotiated film dates. I am regularly woken up in the middle of the night by the smell of baking. I can’t complain when the result the following morning is freshly baked chocolate cake.

We’re being careful with hygiene in the house and while the boys do go out, they haven’t been able to consider getting jobs, for example, as they’re being careful not to put themselves at risk in light of my situation. We’ve just now started looking at potential less risky employment options for them.

My husband’s well. The boys are well. I’m well (apart from the obvious). I’m working, I can cycle, I can run (just), we live next to a lovely common, we’re in touch with lots of people and, very close to the top of the list if not at the very top, my treatment is unaffected. This isn’t the case for a lot of people.

Also recently, I had a call from the GP, asking me to arrange a care plan in case I catch Covid-19 and need to be hospitalised. It wasn’t a shock to have to think about this. I’ve already made my end-of-life preferences clear in the context of having a terminal illness. It’s written into the power of attorney document I arranged last year. If I’m in the final stages of breast cancer, I told the GP, I want to go quietly and gently, but if I get Covid-19, do whatever it takes to keep me alive. Everyone should have a care plan. No-one wants to think about their own death, but the point is to make things easier for your nearest and dearest at an already very difficult time – should the occasion arise.

It’s time for my next set of scans. It’s hard to believe it’s been nearly three months since the last lot. Over the next couple of weeks, I’ll have an MRI scan of my spine and a half-body (essentially from the top of my head to above the knee) combined PET CT scan to check for any disease progression. If they pick up what’s been causing the blood tumour marker to rise and there’s evidence the cancer’s spread beyond a certain point, we’ll be looking at moving on to the next appropriate line of treatment. That would be a big step. I’ll get the scan results when I next talk to – or possibly even see – the oncologist, at the end of April.

That’s more than three weeks away. That’s another three weeks to get on with the busy business of living.

Thoughts on dying… and living

There have been two high-profile deaths in recent weeks of UK celebrities where the individuals involved have died in very different ways. I’m trying to work out whether I think one way is preferable to the other.

In the first case, Gary Rhodes, a British celebrity chef, died very suddenly in Dubai, where he had business interests. He reportedly died of a subdural haematoma, otherwise known as a bleed on the brain. The point is that one minute everything was completely normal then a couple of hours later he was dead. He was 59. I’m 56.

The second case involves Clive James, a well-known author and broadcaster. He died at the age of 80, nearly a decade after he was diagnosed with incurable leukaemia. He’d expected to die much sooner and, in 2015, he admitted to feeling embarrassed at still being alive.

I used to think that dying suddenly – of natural causes, at a decent age – would by far be the best way to go. Much better, say, than after a long illness where for a long time you have a very poor quality of life. Naively, I only ever considered these two possibilities. The situation in which I now find myself – living with an incurable, life-shortening disease with a prognosis that’s in single figures but currently with a good quality of life – never came into it.

I say naively because, as Dr Leslie Blackhall says in a thoughtful TEDx Talk, a great many of us who are over 40 are going to die of chronic, progressive and incurable illnesses such as metastatic cancer, emphysema, congestive heart failure, cirrhosis or dementia.*

Anyway, what do I think now?

Well, it’s harder to answer than you might think. But I’m starting to think that dying suddenly is no longer as appealing as I once thought.

What my diagnosis of secondary breast cancer has done is allow me to reflect on things in a way that I think is only possible for someone who knows with complete certainty that her or his life is going to be cut short. It’s an incredibly hard piece of knowledge to live with but, over the seven or eight months since I was diagnosed, I have come round to thinking that, in some strange way, it’s something of a privilege.

I am not in any way saying I consider cancer to be a gift. I don’t and I want to be absolutely clear on that. For my family’s and friends’ sakes more than mine, I wish with all my heart that this were not happening. I’d much rather be carrying on oblivious. But I don’t have that option. What I do have is a clarity about life and living that – and I accept I may be wrong here – I wouldn’t think is possible to have under normal circumstances.

The only thing any of us really knows with any certainty is that at some point we’ll die, but it’s the one thing, for obvious reasons, we don’t talk about. I’m not facing anything that the rest of us won’t ultimately face. Among the chaos and sadness that my diagnosis has brought, I find that fact strangely calming.

It is, of course, entirely possible I will outlive some of the normal, healthy people I come across every day in all sorts of different situations. Sudden, unexpected deaths do happen, as we’ve seen with Gary Rhodes – not to mention the recent, awful killings on London Bridge. Also, I may not die of this cancer. Something else entirely could carry me off before that does. There are no guarantees on anything when it comes to life – except that at some point we’ll die. Remembering all these things helps to keep me grounded.

Finally, my diagnosis has given me an outlet for my writing. That’s something for which I have to be grateful. I write for a living but it’s only since getting my initial cancer diagnosis that I’ve written in my own time.

I write but I’m not a poet, and these beautiful words by Clive James just blow me away. They’re the final lines of his poem Event Horizon:

What is it worth, then, this insane last phase
When everything about you goes downhill?
This much: you get to see the cosmos blaze
And feel its grandeur, even against your will,
As it reminds you, just by being there,
That it is here we live, or else nowhere.

“You get to see the cosmos blaze and feel its grandeur.” Isn’t that just magnificent?

For me, the most difficult thing is the uncertainty of it all. But then none of us has any real idea of when our own “last insane phase” will be – or indeed whether we’ll have one at all or whether, like Gary Rhodes, we’ll come to our end unexpectedly and suddenly. With me, we do at least know that it’s highly improbable I’ll be here in ten years’ time, still banging on about my situation and, like Clive James, feeling embarrassed at having survived for so long.

If I am still around though, I’m sure no-one will mind too much.

On that note, Happy Christmas, everyone. Here’s to a 2020 filled with peace, love and adventures!

*I urge you to listen to the TEDx Talk by this palliative care doctor, on Living, dying and the problem with hope. Here’s the link:

https://m.youtube.com/watch?v=KQEWc3LVfyc