Back on treatment, feeling mellow

Thankfully the break in my treatment for secondary breast cancer lasted only five days.

I saw the consultant on Tuesday to find out how my blood was looking after the blood transfusion and filgrastim injection the previous week. The answer was good and I was straight on to my second round of capecitabine oral chemotherapy that very evening.

I’d had blood tests the day before. The results showed that the transfusion and injection did what they were expected to do on the haemoglobin and neutrophil front respectively. My haemoglobin count was up by a whopping 36% (it has to be said it was rather low to start with) and my neutrophil count had almost trebled.

Apparently the rise in the haemoglobin level could be accounted for partially by the fact that I’d been doing a fair amount of cycling. More on that below. Also, we don’t know how much of the fall was due to the new treatment and how much was due to the cancer. Whatever the reason, my haemoglobin was at a decent level.

The consultant is as pleased as I am about the big fall in the tumour marker level. The details are all in my previous post but, after just one cycle of capecitabine (two weeks of daily tablets), it had fallen by almost a third. While the chemo had a negative effect on my bone marrow function, it also clearly had a marked anti-cancer effect. The sooner I got back on treatment the better, the consultant and I agreed. The only objective of the breast cancer that’s already spread to my bones and infiltrated my bone marrow is to grow and spread further and cause even more havoc. You don’t want to leave that untreated any longer than is absolutely necessary.

I’m on the same dose of capecitabine as during the first cycle – 85% of my maximum possible dose, three tablets on the morning and four more 12 hours later. Because there was such a dive in my haemoglobin during the first cycle, I’m to have a blood test half way through this second cycle to check how things are going. So it’s back to the hospital – I’m lucky to live so close – first thing on Wednesday this coming week to have blood taken. The consultant will call me later that day, hopefully to say it’s ok for me to continue with the second week of the tablets. If things have gone awry again… well, we’ll face that bridge if we come to it.

I should have been back at the hospital on Thursday for my monthly injection of the bone strengthening drug, denosumab. However, the consultant brought the appointment forward so I wouldn’t have to make yet another trip to hospital that week. Instead I had the injection at the day treatment unit when I went to pick up my capecitabine tablets a couple of hours after having seen the consultant.

The consultant again emphasised the need for good foot care given the fact that a common side effect of capecitabine is the dreaded palmar-plantar or hand-foot syndrome, where your hands and feet can become red and sore and swollen. This, I’ve just found out, is caused when small amounts of chemo leak out of your capillaries, affecting, most commonly, the skin on your hands and your feet. Nasty.

So what does good feet hygiene entail?

To start with, plenty of moisturising, and, basically, socks at all times – even at home. Yes, really. No padding about bare-footed in the house, to lower the risk of getting small cuts that might get infected. No wearing flip flops or sandals that have that a strap that goes between your toes in case the friction caused by the strap causes the skin, which is likely to be fragile, to break. Given that I’m not prepared to walk round the house in trainers or shoes, that leaves me pretty much with the option of that footwear which is de rigeur for Young Folk but pretty much a criminal offence for anyone over the age of 30 – sliders and socks!

IMG_20200627_183057200We used to laugh at our dads for wearing socks with sandals but now it’s an art form. Even if it does become the norm for me indoors, I’m not sure I could ever own it quite to the extent our elder son is doing in this photo!

On the coronavirus front, my thoughts are now turning to when I might be able to go up to Scotland and see my mum and my brothers and their families. That would be very nice indeed. Our younger son gets access to his second year university accommodation in Leeds at the beginning of July. He’s keen to go up sooner than later to settle in and spend some time with his new housemates. I can’t say I blame him. A plan is forming; we could drive together up to Leeds, drop him off then drive on up to Scotland.

I don’t want to get ahead of myself but it’s nice even to think that I might get to see my mum again soon. I haven’t seen her since November. She’s in a care home in Glasgow that thankfully has managed to keep the coronavirus at bay, but she’s struggling with the lack of contact. My brothers up in Glasgow have been as brilliant as ever. They’ve “visited” regularly and talked to her, sang with her and played games with her through a slightly open window but it’s hard on everyone.

Going on a trip – if and when it happens – will be weird. Everyone’s experience of the pandemic is different but it has made a lot of people’s lives much smaller in a geographical sense.

In my case, my policy of “not shielding but being careful” and working from home means that until a couple of weeks ago I hadn’t been inside a building that wasn’t my own house for more than three months – excluding the hospital and the odd cafe for a takeaway coffee or cold drink when I’d been out for a walk or out on the bike.

Also, other than going on long bike rides, I hadn’t been travelling much further than a two-mile radius from the house. The only car journeys I’d been on until very recently were to the hospital, which is less than two miles away. I really should cycle there but I still can’t bring myself to lock my bike up at the hospital. I have PTSD from April 2019 when my bike got stolen outside the breast cancer centre on the very day my diagnosis of advanced breast cancer was confirmed. (Note to self: “You really need to get over that. Just make sure you have decent locks.”)

I know there are lots of issues and challenges regarding the loosening of lockdown restrictions. For me personally, it’s been a joy. Playing tennis in the sunshine with friends you’ve been keeping in touch with through WhatsApp or the odd Zoom call. Meeting up with friends on the common at the bottom of our road to share socially distanced coffees or cold beers or Prosecco on picnic blankets. Stopping off for cold water, a cup of tea and a chat at friends’ houses on the way back from bike rides on scorching hot days. And, more recently, an even bigger change, and all the more pleasurable for it – suppers with friends in their back gardens. One was local; the other I drove to. If it hadn’t been for the pandemic, we’d have taken public transport and probably got a taxi back; I’m not ready for either yet if I have the choice. I’m still being careful, like any sensible person.

IMG_20200627_134204830_HDRI’m four days into this second round of oral chemo and I’m feeling good. I’m writing this sitting on the sofa, feeling mellow and enjoying the view – of flowers inside and out, bike sheds and bins, and blue skies and clouds.

In my previous blog, I said I was going to put that blood transfusion  to good use by going on a long bike ride. Father’s Day dawned last Sunday, the weather was beautiful, and off my other half and I went – on a beautiful, flat and slow 100 kilometre cycle from home in Balham in southwest London into the leafy lanes of Surrey and back. It was my husband’s first 100k ride. Flat or not, that is a fair distance for anyone. I‘ve done a fair few rides of that distance and more, but I‘d be lying if I didn’t admit to being amazed and grateful that, with all this shit going on inside, I can still manage it.

We got back just in time to have showers before settling down to the classy Father’s Day supper our two boys had prepared while we were out. It was pretty much a perfect day.

A quick update and it’s rather a mixed bag

Let’s start with the good news. I’ve no idea what its relative importance will be longer term but I’m a glass half full kind of gal and I’m happy to enjoy it for what it is, so here goes.

After just one cycle of chemotherapy, the breast cancer tumour marker that had been rising since last November has gone down by almost a third. 

The behaviour of this CA 15-3 marker is very much only one part of the overall picture. However, the fact that it’s fallen is a clear sign that the chemo treatment that I started just three weeks ago – oral capecitabine – is dampening down at least some of the cancer activity that’s going on inside my body. The level had been rising faster in recent months and while a reduction by a third only takes it down to what it was at the end of March this year, in proportionate terms that’s a big fall. That has to be a good thing. 

IIMG_20200618_142526718f I’m not rejoicing, it’s because that’s only one part of a substantially bigger and more complicated picture. Also during this first cycle of chemo, my haemoglobin count took such a dive that, instead of picking up my second round of capecitabine tablets on Thursday afternoon so I could start taking them the following day, I spent upwards of four hours in the day treatment unit at the local hospital having a blood transfusion.

My haemoglobin count had been falling for a few months and this was one of a combination of factors that had led to my coming off the treatment I’d been on since my initial diagnosis of advanced/secondary/metastatic breast cancer in spring last year. I had known that if the level were to fall much more, a blood transfusion would probably be in order. That’s precisely what happened.

Coincidentally, it was almost a year ago to the day that I had a transfusion for precisely the same reason. Then, I was really taken aback when the consultant told me what she was advising. I had only recently had the diagnosis confirmed and being told I needed a blood transfusion really brought home to me the seriousness of what was happening. This time round it couldn’t have been more different. It wasn’t quite “hey, ho, let’s go“, but there was no drama, just an appreciation of the effort that’s going into keeping me as well as possible and a ready acceptance on my part that developments such as these are now part of my reality. 

There are two aspects to my disease. The cancer is in my bones, weakening them as it tries to spread further. It has also infiltrated my bone marrow, reducing my body’s ability to make healthy blood. Both aspects need to be managed, along with the side effects of the drugs. That’s what I mean about the fall in the tumour marker only being one part of the overall picture.

The bone marrow issue is a pretty big part of that same picture. Even if my haemoglobin count had been healthier, I wouldn’t have started round two of chemo. That’s because my neutrophil count too was below the level that’s deemed safe to carry on with treatment. Neutrophils are the white blood cells that fight infection.

The fact that capecitabine can also cause anaemia and neutropenia is an additional complication. It’s hard to determine precisely how much of what’s happening on the blood front is caused by the cancer and how much is down to the treatment.

As well as having the transfusion, I had an injection of the white blood cell booster, filgrastim. I’d been used to having this as standard under my previous treatment but we’d gone without during this first cycle so we could see how I’d manage on the neutrophil front under the new treatment without support. Not brilliantly, it seems.

So what’s next?

Well, for starters I get to enjoy the extra energy that comes from having two bags of healthy blood coursing round my body.IMG_20200618_155048864 There’s no denying I’m feeling perkier than I felt last week. There is, literally, more “blood in my cheeks” – a saying I’d never really thought much about until now.

On a more serious point, I go back for more blood tests on Monday to see how things are looking and we’ll see what the consultant recommends when I see her on Tuesday. 

Hopefully I’ll be able to go back on treatment. None of this is abnormal in the context in which it is happening. As with many powerful drugs, it can take some time to find the right dosage of capecitabine. I guess there might at least be a discussion around that. As it was, my starting dose was 85% of what it might have been.

As for side effects that I’d notice, I’m relieved to report that I’ve nothing to report. I have been aware of a little bit more tingling in my feet than usual but I can’t at this stage say that it’s anything other than the mild chemotherapy-induced peripheral neuropathy I have from the original treatment I had for primary breast cancer in 2015. It can get worse in the heat and when I’ve been doing a lot of cycling. The weather’s been great and I have indeed been cycling a fair amount.

Talking of cycling, I’m planning on putting this transfusion to good use in much the same way as I did with the last one. It’s midsummer weekend and a long bike ride is on the agenda for tomorrow. When I’m out there, I’ll be even more appreciative than usual that I’m very much still in the saddle.

 

Moving to oral chemo: different treatment, different approach, fingers crossed

It was pretty clear to me even before I got my latest blood test and scan results that I’d got as much benefit as I was going to get from the treatment I was on for advanced breast cancer. I more or less knew that when I had my next meeting with the oncologist, I’d be moving to a new treatment.

That was indeed what happened. On direction from the oncologist when we met at the end of May, I agreed to stop the treatment I’d been on since I was diagnosed a little over a year ago, skip the next possible treatment and move on to an oral chemotherapy drug called capecitabine. The treatment I’d been on didn’t involve chemo.

A change had been on the cards and while it’s disappointing to know that one’s exhausted the first in a finite number of potential treatments, at least it wasn’t a surprise or a shock. 

This new treatment is in tablet form. IMG_20200528_183239668

You take it orally but it’s still chemo, as you’re reminded by the yellow warning sticker on the box the tablets come in telling you that the contents are cytotoxic and should be “handled with care“.

On to the rationale for moving on to capecitabine, which is also known by its brand name Xeloda. 

Well, there is no sign of any cancer outside of my bones and nor is there any sign that the cancer that’s in my spine is pressing on my spinal cord, where it could do serious damage – positives among the negatives. Things have progressed, though. There are new “skeletal lesions” in certain areas including in my pelvis and sacrum and in my right hip and left collarbone. In addition, my bone marrow is “more infiltrated”.

There are two aspects to my disease. The breast cancer for which I was originally treated for in 2015/16 has spread, or metastasised, to my bones. “Bone mets” weakens your bones and this in turn increases the risk of fracture among other things. It can also cause immense pain. As if that weren’t enough, the breast cancer has also “infiltrated” my bone marrow and so reduces my body’s ability to make healthy blood. Both aspects need to be managed in parallel. 

We’d known for months there was increasing cancer activity. Monthly blood tests had shown that levels of the relevant breast tumour marker (CA 15-3) had been rising since November. My bone marrow function remained stable, though, and rising tumour markers weren’t enough on their own to prompt a change of treatment. Also, the scans I’d had in November and February hadn’t picked up any meaningful or actionable change.

More recently, though, the blood test results overall had been showing a “continued though minor deterioration”. Among other things, my haemoglobin level had been falling. Despite this, I’d been feeling fine but over the past couple of months I’d become increasingly aware that certain physical exertions were leaving me breathless or were becoming too hard even to do.

So even before I got the results from the scans I had in mid-May, I knew things had changed. This time round, to no-one’s surprise, there was something to see.

Bone mets is hard to measure radiologically but there was enough change in the combined near full-body PET CT scan that I had compared to previous scans to be able to say for the first time that things were worse. According to the official report, “The interval change within the skeletal lesions in particular within the pelvis raises suspicion of disease progression.”

I’m in no pain so all this is happening without my having any awareness of it.

As for the MRI scan I had of my spine, “The pattern of marrow infiltration appears to be slightly more diffuse than previously and is concerning for progression.” It also confirmed “extensive metastatic disease throughout the visualised spine and sacrum.”

The blood tests confirmed that the tumour marker is still rising and that my haemoglobin level had indeed continued to fall. The former is not yet at the high level it was at when I was diagnosed in April 2019 although given the rate at which it’s been rising, it’d be there in a couple of months. As for the haemoglobin level, it’s near to what it was when, this time last year, the oncologist started discussing the potential need for a blood transfusion – which I subsequently had.

The results regarding the haemoglobin didn’t surprise me. Most obviously, just briskly walking up the two flights of stairs in our house to the loo had been leaving me breathless. (We’re lucky enough to have two bathrooms. At the moment, while we’re in pandemic mode, the one in the loft extension has been designated for my sole use.) 

Also, I’m playing tennis now that the courts are open and, while I love it, those explosive movements you make all the time have my poor heart pounding. FB_IMG_1591398352510As for running, I’ve more or less given up as I can’t even run fast enough to break a sweat.

Cycling is absolutely fine – you go at your own pace, you can stop and start when you want – and I’ve been doing plenty of that. The photo on the right was taken at the top of Reigate Hill in Surrey, half-way through a hilly, 40-mile ride with my husband a few days after moving on to chemo.

When I started treatment last May with abemaciclib (Verzenios) and fulvestrant (Faslodex), I was one of the first people in my situation to be put on this new combination at the hospital in southwest London where I’m being treated.

The most obvious next treatment was what I’d have been given had the abemaciclib/fulvestrant combination not been available then – a combination of two drugs called everolimus (Afinitor) and exemestane (Aromasin). While everolimus is also oral chemo, the combination is aimed at doing much the same thing as the drugs I’d been on, both over the past year and in the three years between finishing active treatment for primary breast cancer and being diagnosed with secondary – that is, stopping my cancer one way or another from getting the oestrogen it needs to grow. Capecitabine uses a different approach.

There was no reason to suggest the everolimus and exemestane combination wouldn’t work so I understand why the oncologist said things weren’t straightforward. However, to paraphrase in an extremely liberal way, I think her bottom-line recommendation was “let’s not faff about with more of the same and see instead if we can get a quick response with capecitabine”.

Depending on how things go, I could go back and try the treatment I’m skipping. Clearly at this stage I have no idea how likely that is but it is good to know.

There is another new chemo drug with a different approach again coming through the system for the treatment of a subtype of the type of advanced or metastatic breast cancer I have. It’s been available in the US for a year already and while it’s now used in more than a dozen other countries, it’s not yet approved for use in the UK.

This drug – alpelisib, brand name Piqray – should be approved for use in the EU in a couple of months. While that approval will be valid in the UK, a decision on whether it will be available within the NHS isn’t due until February 2021. You need a test to determine whether it might work for you and, like many cancer treatments, it can have extremely toxic side effects. However, if it can add an extra however many months to the length of time you’ll live overall, you’d probably want to at least give it a try.

With capecitabine, it’s a three-week cycle initially; two weeks on the tablets and one week off, with blood tests at the end of each three-week period. It can take time to find to right dosage.

If I tolerate capecitabine ok and it keeps things in check (remember we have the cancer in the bones and in the bone marrow to worry about), I’ll be on it for as long as it keeps working. Whether that’ll be weeks, months or years, we don’t know. It’ll be nine weeks before we can tell what effect it’s having in the first place.

In the meantime, I continue with the four-weekly injections of the bone-strengthening drug denosumab at the day treatment unit.

My appointment with the oncologist – in-person, with masks – was on the last Thursday in May. I started on capecitabine the very next day. Having seen the way things were going, the oncologist had me tested a couple of months ago to see if I was in the group of people whose bodies are unable to metabolise capecitabine and would be likely to develop very severe side effects. I wasn’t. It’s strange what you become thankful for.

I was forced to make lifestyle changes from Day 1. For years on weekdays I’ve rarely eaten anything before 11am. However, I need to take these new tablets twice a day, at more or less 12 hours apart, within half an hour of eating. Given we have supper at about 8pm, I have to have had something to eat by around 9am. That really is not me but it’s amazing how quickly you adapt when you have no choice.

For breakfast on the first day, I had stewed prunes and yoghurt – a strange choice given that one of the very common side effects of capecitabine is diarrhoea. On that particular day, though, there happened to be some prunes in the fridge and, since I’m the only one in the family who likes them, I couldn’t let them go to waste. In fact, more than simply disliking them, my long-suffering husband can’t stand the smell of either prunes or yoghurt and refuses to be in the kitchen when I’m eating them! I usually drizzle some warm honey on top but he still can’t bear it.

The second day, a Saturday, I had a poached egg on toast. If I’m going to be forced to have an early breakfast, I decided, it may as well be nice. My resolve has petered out already, however; now I have a quick slice of toast and marmalade or jam, some fruit and a cup of tea, and I’m done.

Capecitabine can cause many of the same horrible side effects as other chemo drugs that are given via infusion. However, it works in a more targeted way compared with regular chemo and some of the standard side effects can be less severe. For good measure, though, there are some additional side effects that are specific to capecitabine.

On the hair front, I’ve been told to expect thinning but not loss. That’s something. I really wouldn’t have thought my hair could get much thinner than it is already but I guess I’m about to be proved wrong.

One of the more common side effects – that I’m looking out for and dreading getting – is palmar-plantar, or hand-feet, syndrome. IMG-20200528-WA0002With this, the palms of your hands and the soles of your feet can become red and  dry and flaky and sore and numb and swollen. It sounds horrendous and some people get it really badly. No-one needs that but for someone who plays tennis and cycles, it seems particularly cruel. I have already started moisturising my feet morning and evening in anticipation.

Exhausting one treatment and moving on to another is quite a sobering milestone psychologically.

Physically, ten days in on cycle #1 and I’m feeling fine. I wanted to write and post this before any side effects rear their ugly head. Once again, we can but hope for the best and see how it all goes.

Chocolate deliveries, bike rides, giraffes and scans

I have taken delivery of not one but two substantial amounts of chocolate over the past week or so.

How so?

I posted on facebook that I’d had to enlist our elder son to buy me some chocolate because my husband, who’s doing the shopping at the moment, eats too healthily and it just doesn’t occur to him to chuck a couple of chocolate bars in the trolley as he makes his way round the supermarket. It took a while, but at least now he does deign to bring home as standard a couple of packets of biscuits – but still no chocolate bars. 

Now I’m no addict, but I do have the odd bar on an ad hoc basis. However, I can’t currently indulge that habit while we’re in the midst of this coronavirus pandemic. My immunity is low as a result of the anti-cancer treatment I’m on and while I do go outside quite a lot now for walks and to exercise, I generally tend to not to go into shops. So no impulse buying of chocolate bars for me!

The photo I posted of me looking gleeful holding the bars my son brought back for me made a lot of people laugh and sympathise.

A couple of chocolate-loving friends – a huge thank you again, you know who you are! – were clearly feeling my pain to such an extent that they took things a step further and actually sent me supplies. We haven’t laughed so much in ages. My husband says he’s going to post that he’s got a craving for beer.

As you can see from the photo, I am now spoilt for choice. And that’s just one box.

I’ve given some away, the boys and I have been partaking, and the rest are “hidden for safe-keeping”, if you get my meaning. 

On the micro level things are still going largely fine on the lockdown front.

There are the chocolate deliveries for a start. Also, I’ve got most of this week off work and the weather is glorious. The roses in our garden have started blooming; they are gorgeous and there are dozens and dozens of buds, so it’ll only get more and more beautiful. Don’t look too closely or you’ll see all the aphids.

Yesterday I went out for a bike ride with a friend that involved seeking out and tackling the not insubstantial hills of south-east London, around Crystal Palace. There was blazing sunshine, there’s still far less traffic than there normally would be, and we enjoyed some incredible views over central London from the tops of the hills. 

We slogged up a fair few hills (with my friend overtaking me every time) and were rewarded with some lovely descents (with me doing the overtaking here). Before heading home, we bought some take-away coffee and chilled soft drinks and drank them in the welcome shade of a tree in Dulwich Park. It felt like we were genuinely on holiday.

On another bike ride, this time with my husband, we cycled past London Zoo in Regent’s Park and were delighted to see that the giraffes had come out for a stroll. There are two and there’s a sign there with their names on (I’ve forgotten their names*). Like everything else, the zoo is closed but we shouted over the gate and asked the zookeepers in attendance which was which. We don’t know, they told us excitedly, we’re from the other side of the zoo and don’t often get to see the giraffes. Their excitement was lovely to see.

On yet another ride into central London, we enjoyed great views of the river.

Those clear skies are good to see but they’ve come at a dreadful human and economic cost. We must never forget that.

Part of the reason I took time off work this week was that I was already taking time off to have scans. It’s that time again. I had a half-body PET CT scan this morning and tomorrow I’ll have an MRI scan of my spine. Both tests are to check to see whether there’s been any meaningful spread of the metastatic breast cancer I was diagnosed with just over a year ago. If there has been, we’ll be moving on to the next appropriate line of treatment.

I tell myself that I don’t generally get what’s known as “scanxiety”, ie worrying in the run-up to having the scans themselves and then again while you wait for the results (a week in this case). However, I really don’t think you can avoid it entirely.

You think it’s all fine then you realise you’re more argumentative at home than usual – and as those of you who know me are well aware, I’m pretty darn argumentative at the best of times. Or you’ll catch yourself doing too much forward thinking, dwelling on things you usually manage not to think about. Realising I’m doing this is usually enough to bring me back to the present. You just find yourself doing it more often than usual around scan time.

In this particular present, there’s a hedge that’s needs trimming out front. And afterwards, of course, there’s chocolate to be had as a reward!

* The giraffes are called Molly and Maggie, London Zoo told me in a reply to my tweet asking what their names were! I love Twitter when it works like that. Thanks to London Zoo for the reply!

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.

image
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.

Personal positives amid broader negatives

The Thursday before last, I went ahead with another round of treatment for the advanced breast cancer I was diagnosed with last April. Also, I’m ok to leave the house as long as I stay clear of other people while I’m out.

Those are the two key pieces of news I have to report since my last post. Both pieces of news are good. Proving once again that everything is relative, I am aware of a substantial number of other women who’d be happy to be in my shoes. Every case is different, but scans and treatments are being postponed or cancelled across the country and many women are still “shielding” at home while the coronavirus continues its spread.

I had blood taken for testing on the Wednesday morning at the local hospital where I’m being treated, in Tooting in southwest London. Face-to-face consultations are not happening to reduce the risk of the virus spreading so the consultant called me that afternoon to discuss the results.

Here’s a synopsis. My bone marrow function in general is fine, which means the treatment is still working on that front, but that damn tumour marker is continuing its seemingly inexorable rise. We can’t pin down what’s causing this. There’s clearly cancer activity going on but we don’t know where. It didn’t show up on recent scans and I have no new symptoms that might suggest to where the cancer is spreading or has already spread but is not yet detectable. I’m a bit dehydrated – “drink more water” – but my neutrophil (infection-fighting white blood cell) level is just good enough to go ahead with the next monthly – or rather 28-day – cycle.

That’s treatment round 12 under my belt. It’s hard to believe that it’s almost a year since the oncologist called to say my blood test results had come through and that it’d be “crazy not to follow up”. Follow-up showed that the primary breast cancer for which I was treated a few years ago had spread to my bones and infiltrated my bone marrow.

The plan for now is that I stay on my current treatment until there’s a concrete reason to come off it. There’s no point changing treatment if you don’t know what it is that you need to treat. And, very importantly, it’s still working on the bone marrow function front.

In the absence of any new symptoms, we’ll keep doing regular scans – coronavirus pandemic permitting – so that we pick up promptly whatever it is that’s causing that tumour marker to rise. In the meantime, my blood is being tested to determine whether I can metabolise a chemotherapy drug called capecitabine, a likely future treatment. On the one hand it’s pretty disconcerting to think that we’re now essentially looking out for bad news. On the other hand, it’s good to be prepared. Even if I can metabolise it, though, capecitabine will not necessarily be the next treatment; that will be determined by where the cancer spreads to and to what extent.

The waiting area at the phlebotomy unit was more or less empty when I turned up at St George’s on the Wednesday morning. Sometimes there can be dozens of people waiting – although as a cancer patient, you get to skip the queue and go straight in. I don’t know whether the lack of people was a coincidence or whether they’re cancelling non-urgent blood tests. Also, to enable outpatient cancer patients to avoid any unnecessary human contact, the oncology day unit has been moved from its usual home on the third floor of one of the main hospital buildings to a stand-alone building in the hospital grounds. That was very reassuring.

I’m very relieved that for now at least the pandemic is not affecting my treatment. I’m a member of a breast cancer support group on Facebook and women on there are having scans and treatment and operations cancelled or delayed. Some are accepting of whatever decision has been taken but others are angry and upset. Healthcare professionals are having to make some very difficult choices but policies seem to vary from place to place and that really doesn’t seem fair. 

I also want to say that I’m really not ready for all these platitudes that are flying around, like “the earth breathed and the earth healed” and “this was the time parents became teachers” and, worst of all, “everything will be alright”. I know why it’s happening but it’s not for me.

I appreciate the beautiful birdsong and the fact that the air is cleaner. I love the Thursday evening clapping for the NHS and the lone trumpeter in Hebden Bridge. I love any number of other things that have come out of the crisis (the creativity and imagination on show is fabulous) – but there are many people for whom it’s already not alright and there are many more for whom it won’t be. And I’m not just talking about the people who’ve died and their friends and families. Life will be different, and we don’t know yet know how different, but for many people it will never be the same – and not in a good way.

On a more positive front on a personal level, the oncologist said during her phone call with me that she’s happy for me to go out – as long as I’m sensible and take all the obvious precautions. Walks in the park are fine as are cycling and running, but shopping isn’t, as that would entail going inside and being among people and putting myself unnecessarily at risk. That suits me fine!

As time had gone on, I’d more or less come to that conclusion myself although I hadn’t yet ventured out. It was good to hear it from someone who knows a lot better than I do. It was followed a couple of days later with a text from the NHS Coronavirus Service telling me to stay at home for at least 12 weeks “unless a healthcare professional suggests otherwise”.

That was over a week ago. I’ve been out for a couple of walks on the common at the bottom of the street and I’ve done one run. It was my first since February 1st and my legs have only just recovered. 

I’m not taking any chances, so I’ll stay very local. I don’t really even feel like going out on my bike. Out of the three activities, I feel this is the one where you have least control over your surroundings. I know it doesn’t work like this but my thinking is that I’ve not put all this effort into living well with incurable breast cancer only to be felled by this friggin’ virus. 

I may not have been cycling but that doesn’t mean I haven’t been pedalling. 

Last Sunday, one of the two cycling clubs that I’m in – the Balham Cycling Club – organised a virtual fundraising event for St George’s Hospital Charity. The idea was for those members who have access to an exercise bike or turbotrainer to cycle collectively the distance of the UK – from Land’s End in Cornwall to John o’Groats in the very north of Scotland – and to raise the distance in Pounds sterling (1,407km/£1,407). The response on the day was so incredible that we decided to do the return leg too. In the end, 45 of us took part, we cycled more than three times our original goal, and to date we’ve raised more than £5,600 – almost four times the amount we set out to raise originally.

I reckon my contribution – done in three stages – was 80km (50 miles). It was a heartwarming and humbling event and l was proud to be part of it. 

Thanks for reading. Stay well and stay safe.

From cycling in Spain to shielding in south London

I got back from a cycling trip on the Spanish island of Mallorca on Sunday 15 March. That’s a story in itself, but this post is about the fact that, as a person whose immune system is compromised and for whom catching coronavirus could be very bad news, I’ve been practising this new activity known as “shielding” ever since I got back from Spain.

That basically means I haven’t left the confines of my south London house and garden in almost two weeks. During that time, I’ve had pretty much no face-to-face contact with any human being unless it’s been at at least a metre’s distance. That includes my husband – and I didn’t even hug my sons when they came back from uni last week. 

As soon as the COVID-19 pandemic broke, I reckoned I would be in the “extremely vulnerable” group that would be advised to stay indoors and avoid all but the most essential contact. So I started shielding of my own accord as soon as I got home from Spain.

It felt more than a little bizarre given how fit and well I feel – as evidenced by the fact that just days earlier I’d been cycling up and down hills in Spain (see photo) riding 50-70k a day. I ride slowly but I get there.

A text from the NHS Coronavirus Service one evening this week confirmed my new status. It pulled no punches. It said I was “at risk of severe illness if you catch Coronavirus”, that I’d to “remain at home for a minimum of 12 weeks” because “home is the safest place for you”*, that while at home I should “open a window” but not go out other than to any “private space” such as the garden or front path, and that I should stay three steps away from others indoors. A subsequent text advised me to have an overnight bag ready in case I’m hospitalised.

I love the outdoors, but I’m already starting to see “outside” as a dangerous place. Given the stark advice in those texts added to my own desire to stay well and the fact that London is the epicentre of the outbreak in the UK, it’s not surprising that I’m wary of leaving the house – even if it’s to get the treatment which has, largely, been keeping my cancer in check for the best part of a year.

The primary breast cancer I was treated for some years ago has spread to my bones and bone marrow. While it’s currently treatable – and is more or less under control – it’s ultimately incurable.

Somewhat ironically, it’s more the treatment I’m having that makes me immunocompromised than the cancer itself. This side-effect is managed with injections of a drug called filgrastim, which stimulates the production of neutrophils, the white blood cells that fight bacterial – not viral – infection. For the past few months, I’d been having just one of these, at my regular treatment appointment. In March, though, just as the outbreak was starting, the consultant prescribed an extra one for me to self-administer mid-cycle to keep my neutrophil levels up.

In 2014, I was lucky enough to get the chance to take part in a transatlantic sailing race, from the Canary Islands to the island of St Lucia in the Caribbean. It took 13 days and it’s one of the most exciting things I’ve ever done.

I had next to no experience of sailing. You just had to be up for an adventure, be a team player and be very good at following instructions (I can hear my husband snorting in disbelief at that last one but I can do that no problem if I decide I want to). Anyway, the pre-trip training included a one-day Sea Survival course that taught us how to use all the safety kit on board and what to do in an emergency. We spent a lot of time in the water at a local swimming pool with life rafts and the like. It was all well and good that we had this training,  but the key take-home message for me was do not fall overboard from a 72-foot long yacht that’s going full tilt in the middle of the Atlantic. The chances of you surviving are not good. 

I felt pretty much the same reading these texts I’ve been receiving. It really would not be good for me to catch this virus. I’ve gone from fretting that my treatment might be changed or delayed to fretting about the fact that next week I’ll have to leave the house on not one but two occasions – once next Wednesday to have my blood taken for testing and then again the following day, assuming the blood test results are ok, to start my 12th round of treatment. I won’t see the consultant for my results as I usually do as, rightly so, they’ve stopped face-to-face meetings.

My rational mind tells me it’s good news that my treatment plans are unchanged. Appropriate social distancing measures will be in place, I’m sure, but I’ll still be nervous.

It was a last-minute decision to sign up to the cycling camp in Mallorca. I did so after receiving “not bad news” in early March in relation to the two scans I’d had in mid-February.

I flew to Mallorca from Madrid on 11 March. My husband and I had gone there to celebrate his 58th birthday. That was on 10 March. It was also our 35th anniversary of getting together as a couple, so it was pretty special. We spent the evening with Spanish friends we’ve known since we lived and met in Madrid in the mid 1980s. The talk was of coronavirus but other than that Madrid was felt no different from usual and there was little sense of the huge upheaval that was to come.

Back to London. In the words of the oncologist, the PET CT scan results “gave with one hand and took with the other”.

Some previous “hot spots” were less hot than they were three months ago but there were some new hot spots elsewhere. As for the MRI scan of my spine, the conclusion was that despite there being “widespread metastatic disease”, appearances were “stable compared with previous”.

Things are still looking ok on the bone marrow function front. 

My view is that while “not bad news” is not good news, it’s a heck of a lot better than actual bad news. Also, I really can’t believe that with all this going on inside, I’m not in any pain. For that, I couldn’t be more grateful. 

I know this is all about me and that many people are in a far worse situation – and, of course, that there are many people out there in essential jobs who are themselves at great risk of getting the virus. However, it does illustrate perfectly how coronavirus has changed everything. And if we’re to believe the forecasts, we ain’t seen nothing yet. 

Long before most people had even heard of coronavirus, I wrote a long article about living with secondary breast cancer. Some friends read a draft and suggested I try to find a broader audience for it than I’d get with my blog. I approached the Institute of Cancer Research and they said they’d be happy to publish it.

In the article, I make the point that very often we make presumptions about the future when the reality is that we have no way of knowing what will in fact happen. Reading it now, it seems weirdly prophetic. 

The ICR published the piece on Mother’s Day. If you read it, you’ll see why they chose that day. It’s frank and honest right from the start. Please only read it if you think you’re ready for that. You can read it here.

*I take issue with the blanket assertion that home is the safest place for people to be in these times of lockdown and self-isolation. It may be for me but what about women in abusive relationships and/or at risk of domestic violence, not to mention children who live in very troubled households? I have relatives who are school teachers and they all know of children for whom school is their only safe place.

When buying new ski gear is an act of defiance

I’d resisted buying new ski gear for years but last week I finally succumbed. I blame Storm Ciara and cancelled flights – and a sudden, enlightening realisation that while I might have advanced cancer, it’s up to me how I choose to live with it.

My old ski outfit had become something of a standing joke. Not only was it very much past its best and dangerously close to being not fit for purpose, I’d lost lots of weight in the past few years and it was now far too big for me.

There were various reasons I hadn’t already replaced it. A key one was that a few years ago I essentially stopped buying stuff I didn’t need. This year there was an additional reason. Last April, I found out that the primary breast cancer I’d been treated for in 2015/16 had spread to my bones and bone marrow and could not now be cured. It’s treatable and I’m doing well but ultimately it’s incurable. 

After my diagnosis last April, I assumed I wouldn’t go skiing again. When I realised I would in fact go this year, I convinced myself I shouldn’t buy new gear because I might get only one season’s use out of it. To be honest, the thought that my cancer might recur was always in the back of my mind in previous years – another reason I couldn’t bring myself to buy new kit.  In the end, last week, I bought new trousers and a jacket in what I can only describe as a major act of defiance against the fact I have this cancer.

I’d had my old ski trousers for at least 15 years. They’d long lost any claim to being waterproof and indeed for the past couple of years had offered very little protection against the wind. The jacket was in fact a hiking jacket with none of the niceties that make a ski jacket a ski jacket. These include a little pouch on the sleeve for your lift pass – and, more importantly, inner cuffs in the sleeves and a “snow skirt” inside the body of the jacket to stop the white stuff going right up the inside should you fall. I say more importantly as I tend to fall, at least once every trip.

I’m extremely fortunate that, in normal circumstances, I get to go on more than one trip a year. I went with friends a few weeks ago and I’ve just got back from a week with my husband – our first ski trip together without the children in 19 years.

Not exactly flattering.

Having seen a photo of me on the trip with my friends where even I have to admit I look like a bag lady without the bags, I was almost persuaded. The photo’s there; see for yourself. In the end, though, even that wasn’t enough.

I read an article a couple of years ago about consumerism by the American author Ann Patchet. I was never that materialistic to start with; even so, this article changed the way I live my life. I’ve also just read a book by Vicky Silverthorn called “Start with your sock drawer”. If you read either or both and like what they say, you’ll appreciate my reluctance to buy anything new, never mind kit you only wear once or twice a year. Having this cancer adds another huge dimension. “How much use will I get out of it?” and “Do I really need  I it?” are questions I ask myself every time I think I might buy something new. On balance, I felt I couldn’t justify new ski gear.

So when I packed last Saturday to come away with my husband, it was my old gear that I folded into the suitcase. Our flight from Gatwick to Geneva was the following day, at around lunchtime.

And then Storm Ciara happened. First thing last Sunday we found out our flight was cancelled. Over breakfast while we tried to reschedule our flight for the following day, I had an epiphany. That’s it, I announced, I’m getting some new ski gear this afternoon. And that’s exactly what I did.

The miracle is that I’ve gone skiing at all this season. When I got my secondary cancer diagnosis last April, I thought I’d be kissing goodbye to this particular activity. When you hear you have cancer in your spine, you don’t think, great, that’ll set me up nicely for  skiing.

The closer it got to the ski season, however, the more I found myself thinking I might be able to go.

I did a thorough risk assessment before booking anything.

I hadn’t had any pain in my spine or anywhere else for months. I was feeling fit and well. Despite an initial scare towards the end of last year, an MRI scan failed to find any sign that my cancer had progressed. I was taking bone-strengthening drugs as part of my treatment. Finally – and this final factor was given extra weighting – I just really wanted to go!

I promised myself that if I did go, I’d be really careful. Sure, I might still have a catastrophic accident but I ride my bike downhill at speeds most people would think were fast and no-one is suggesting I don’t do that. And, as we all know, any one of us could get hit by a bus tomorrow. It’s highly unlikely, but you know what I mean.

On to treatment.

Between one ski trip and the next, I had my monthly blood tests and appointment with the oncologist. I went ahead with the tenth round of the monthly treatment I began last May. The blood test results were good enough to keep me on this treatment but that blasted blood tumour marker keeps going up. This means there’s active cancer somewhere, but at the moment we don’t know where that is. I have my next set of scans – MRI and PET-CT – this coming week and they may or may not pick something up. The results will determine whether I stay on this treatment or move to another.

That’s more like it!

I’ve said this before, if you think scans and other types of diagnostic tests are “just to check everything’s ok”, you’re very much mistaken. It’s the total opposite; they’re to see if they can find anything wrong.

Back to the new ski gear. No, it doesn’t make me ski better* but I feel like a total badass wearing it.

I have so little control over what’s going on in terms of this disease – most importantly in terms of how it will progress but also in terms of the appointments and the blood tests and the scans and the treatments. This wasn’t just about buying a new jacket and trousers. It was about taking control and confronting my fear about the future. I’ve done just five days’ skiing in my new kit. I’ve already had more than my money’s worth.

*That’s a nod to my brothers. We come from a sporty family and even now, when someone shows off a new piece of, say, cycling kit they’ve just bought, someone else is always quick to ask if it makes them pedal faster. 

Topping off a lovely few weeks with my 100th Parkrun

I’ve just done my 100th Parkrun and it was the perfect end to a lovely few weeks.

I started doing Parkrun seriously in April 2016 to get fit again after finishing active therapy for primary breast cancer. Little did I know then that these free, timed, volunteer-led Saturday morning 5k runs would become a big part of my life and that almost four years and two cancer diagnoses later, I’d be chasing down my 100th.

Reaching one hundred is a pretty big milestone in the Parkrun world. I couldn’t be more pleased, especially as at one point earlier this year, not long after I was diagnosed with secondary breast cancer, I genuinely thought my running days were over.

It really felt like a massive achievement. Others agreed. Friends turned up to cheer me round our local course at Tooting Common in southwest London with the banner they’d made when I cycled Ride London last summer. One friend ran the whole 5k with me. Another chose to make this her first Parkrun. Finally, there was a welcome party waiting for me with champagne, party poppers and cake!

It was the perfect end to what had been a very pleasant few weeks.

Just two days earlier, I’d gone ahead with the ninth monthly round of the treatment I began in May for secondary breast cancer. I’d had a wide range of blood tests the day before. It’s no longer as straightforward as saying that the results are showing good news across the board – the relevant tumour marker has edged up again. However, my oncologist clearly thinks the balance is still in favour of continuing with the same core medication I’ve been on since starting treatment last May. This is my first so-called “line of treatment” and the longer you can stay on these early lines – and off chemo – the better.

I’d been feeling good physically most of the way through the four weeks of treatment cycle #8 – apart from on one key front, more of which below. Feeling well, however, is no indication that things are going well inside. That being the case, together with the uncertainty of the past couple of months, it was a huge relief to hear I’d be staying on this treatment for another four-week cycle.

So off I headed to the day treatment unit for three lots of injections and to collect my next 28-day supply of the abemaciclib tablets that I take every morning and every evening.

Treatment at the day unit consisted of four individual injections: one of the same drug (fulvestrant) in each buttock lasting two to three minutes each, one of another drug in the left side of my abdomen (denosumab) that took about a minute, and a quick 30-second jab of yet another drug (filgrastim) on the right side of my abdomen to finish.

It’s not an exaggeration to say I felt like a pincushion by the time I was done. That’s not a complaint; it really is just a statement. They can stick as many needles as they want into me if it keeps the cancer in check.

It’s been the loveliest of Christmases and New Years – spent very sociably but also very locally. Our two boys started uni in September and it was great to have them home for a few weeks. A highlight was them treating us to a delicious home-made Beef Wellington on Boxing Day.

I’ve been having a lot of fun sports-wise. I was on a mission to reach my 100th Parkrun as early in the new year as possible. To achieve this, I did four Parkruns over a ten-day period – two regular Saturday runs at my home course and two special events, one on Christmas Day at Dulwich Park a couple of miles away and one on New Year’s Day, also at Tooting.

Also, I’m back playing in the tennis leagues at my club. Over the holidays I played – and lost – two singles matches.

Most fun of all, on New Year’s Day a friend and I took a dip in Tooting Lido, the local 100 x 33 yard open air swimming pool. Even with a full wetsuit, we managed no more than two widths – my hands and feet were frozen the second I got in. It felt like a suitably bonkers thing to do on the first day of a new decade.

Another positive relates to the issue of drug side effects. Severe diarrhoea is a potentially serious side of abemaciclib, one of the two drugs I’ve been on from the start. There had been moments but I hadn’t been too badly affected. That all changed with treatment cycle #7 just over two months ago when I switched from Zometa, the drug I’d been taking to reduce the risk of bone fractures and other “skeletal related events”, to denosumab, which is aimed at doing the same thing but in a different way.

If you’ve had bad attacks of the runs – and I mean really bad – you’ll know how nasty diarrhoea can be. If you haven’t, well just be grateful. The antidiarrhoeal medicine loperamide quickly became my new best friend. I can now boast of being an expert in its use – for both treatment and prophylactic purposes.

While it didn’t spoil our recent holiday in Jordan it was, as I said euphemistically to the oncologist, most certainly “an issue”. I could only look longingly at the all-you-could-eat breakfast buffet at the smart beachfront hotel where we stayed for the last two nights of the trip. That felt most unfair. Also, I bet I’m one of the very few people who know the location of all – and I mean all – the public conveniences in Petra.

Anyway, the good news is that this cycle so far I haven’t been troubled anywhere near the degree to which I was in the first two cycles. It’s usually at its worst in the first two weeks – and at its very worst in the first few days – of the four-week cycle. Fingers crossed things are settling down.

Finally, the charity Breast Cancer Now has chosen to feature on its website an update of a blog post of mine that I wrote originally last November after a lovely summer and a trip to the US to visit two much-loved aunts. The fact that it’s had lots of positive feedback from many, many women with breast cancer makes me very happy indeed.

As I said, it’s been a lovely few weeks. Indeed it’s ongoing. At a ridiculously early time tomorrow morning, I fly off to the French Alps for my annual ski trip with friends. I’ve stocked up on loperamide but I do feel very fortunate even to be in a position where I’m able to  go. It’s from Friday to Tuesday, and the aim is to ski on each of the five days we’re away. I call it a long weekend; my husband calls it a short week. He is technically correct, but don’t tell him I said that.

Here’s to 2020. Let’s hope it’s kind to all of us.

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