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.

Hey, hospital, where’s my blood?

I should have been in my local hospital in south London this afternoon having my sixth monthly cycle of treatment for the secondary breast cancer with which I was diagnosed in April. Instead I was sitting round the corner on the high street having fish and chips in a great little chippie.

Why? Because the hospital has seemingly lost the blood I had taken shortly after 0800 this morning for testing to see whether I was OK to go ahead with treatment this afternoon. I had a second lot of bloods taken early this afternoon and my treatment appointment has been rescheduled for 1100 tomorrow. I’ll hear from the hospital this evening only if the results mean I can’t have treatment.

Thus the fish and chips. Comfort food was needed to calm me down.

I’m over it now but at the time I was both frustrated and upset and I’m afraid I was initially less than polite with the poor registrar who saw me and had to try and work out what on earth was going on. I hope I caught myself in time; I have also since apologised.

It didn’t help that while I was waiting to be seen, I’d to listen to the inanity that is Loose Women, which was on in the TV in the waiting room. Among the topics for discussion on the chat show was whether it’s ok to dump your hairdresser. I swear I heard someone say it was easier to cheat on your partner. I’m sorry, but ffs.

You psyche yourself up massively for these appointments. What will the blood test results show? Will my tumour markers be up? If so, what might that mean? Will we go ahead with the next cycle of treatment or not? To be fair, this is the first time anything like this has happened. Everyone was very apologetic and keen that the alternative arrangements were as convenient for me as they could be. 

They say you shouldn’t sweat the small stuff. Was this small stuff? In the grand scheme of things it was, but for a while it felt like big stuff to me.

I just got back last night from a short cycling holiday in Spain and I had today and tomorrow – and indeed this coming weekend – meticulously planned. It’s our older son’s 21st birthday on Saturday and we’re having a small family gathering that evening. On my list for tomorrow was to spend a couple of hours’ gardening (the garden’s a mess), buy helium balloons and party accessories, buy food and cook for Saturday, get some photos printed, sort out a present and, oh yes, meet my mum, who has dementia, off the train from Glasgow at Euston at 1600 and bring her and a bike (my brother’s bike, not my mum’s!) back to the house. Thankfully my brother will be there to help me get get my mum and the bike – and me – into a taxi.

On treatment days, I’m usually at the hospital for a couple of hours. On those days, I generally do nothing other than have treatment and relax around the house. Treatment’s generally not painful but it’s not an easy day. I have one drug administered as two injections, one in each buttock, each of which takes a couple of minutes to administer. I also have an infusion (as you do with chemo) of a bone-strengthening drug – that’s usually over and done in half an hour. The oncology nurses are incredibly caring and careful doing the injections and finding a good vein into which to insert the cannula for the infusion. But while generally none of it is painful, it’s certainly not pleasant.

Usually I have bloods done one day then see the consultant the following day with a view to having treatment later that same day. Ironically, this time round, the consultant had very accommodatingIy arranged for me to have everything done on the same day. This was so I could go on the cycling trip. I came back late last night and went down to the hospital first thing this morning to have blood taken so the results would be ready for my appointment with the consultant (or in the event with the registrar) a few hours later. Luckily I live close to the hospital and can easily get there and back.

There’s plenty of good news. I feel incredibly fit and well. Not only am I doing lots of cycling, I’m also running and I’m even playing tennis again. Back when I was diagnosed, I really thought my running and tennis days were over. On the cycling front, I’m incredibly touched that the two clubs I ride with are organising a joint 100k ride this coming Sunday (half way through Breast Cancer Awareness Month) to raise money for research into secondary breast cancer.

The cycling holiday, organised by a company called Mellow Jersey, was fabulous. The feeling I had hurtling downhill on my bike at almost 60 kilometres an hour will take some beating. As will the feeling of triumph at the top of a steady climb of around eight kilometres. I was by far the slowest in my group on the hills, but someone has to be last and really I was happy just to be there. When I was first diagnosed, I had no idea whether I’d be in a position to do something like this ever again. Cycling more than 300 kilometres over four consecutive days would have been inconceivable just a few months ago.

But where’s my blood? I know big institutions can’t be totally efficient but you have to wonder where the two vials of blood are that I had taken this morning. They have to be physically somewhere. The department that took them said they were delivered to the lab but the lab claimed to have no trace of them. Like lots of lost things, they’ll probably turn up and, in this case, we’ll end up with two lots of results on the system.

As for me now, I’m off to do some of the many, many things I had planned to do tomorrow. Hopefully I won’t hear from the hospital this evening and treatment will go ahead tomorrow, we’ll all have a lovely time with the birthday boy on Saturday evening, and we’ll have a great bike ride on Sunday.