Mother of God, the mouth ulcers

Spoiler alert: This blog includes multiple gratuitous references to a recently concluded and very popular UK TV series about police corruption.

Jesus, Mary, Joseph and the wee donkey, if it’s not one thing, it’s another.

The pain I’d been having periodically in my joints disappeared overnight when, a fortnight ago now, I started on my first cycle of the new treatment I’m on for advanced breast cancer. Also – and what a relief – the pain I’d been having in my feet for the past few months eased up massively. Now we’re sucking diesel, I thought. Then wham, I get blasted with two horrendously painful mouth sores – or more precisely one mouth sore and one tongue sore – within days of starting the new drugs. God give me strength.

Mouth sores are a very common side effect of everolimus, one of the two drugs I’m now on (Document A in your folder). I’ve written before about how painful cold sores can be (Document B in your folder). Well mouth sores are like that, except they’re on the inside of your mouth and they’re even more painful. Just when you’d started to sleep well again as a result of the throbbing in your feet having eased off, you wake up at 4am from the pain of these mouth sores. The discomfort when eating is such that I’ve had to tell the boss, who does most if not all the cooking in our house, to stop putting vinegar in the salad dressing. Mother of God.

Has it been so painful that I’ve sworn? No comment. Or cried, even, from frustration as much as pain? No comment.

I’d been given mouthwash to prevent mouth sores from developing and/or to alleviate the pain once they do develop. I’d been following the instructions to the letter, to the letter, I tell you; who knows, maybe they’d be even worse if I hadn’t been using the rinse.

As for the sleeping tablets I was prescribed at my last appointment, I’ve used them twice. The first time I didn’t notice any difference; the second time I slept for nine hours (getting up once for the loo and half-waking when my husband got up). Now we’re cooking with gas, I said to myself when I realised how long I’d slept for.

You’re monitored closely during the first month or so after you start on everolimus because of the potential side effects. The monitoring involved a mid-cycle review yesterday with my oncologist where we discussed how things were going and she gave me the results of the MRI scan of my liver that I had recently.

As I’ve said, for various reasons the consultant wasn’t convinced that the metastatic breast cancer I have in my bones and bone marrow hadn’t spread to my liver. Now many of you reading will know that I’m a bit of a grammar pedant. I would therefore like to point out that this is one situation where two negatives don’t make a positive. The consultant didn’t necessarily think the cancer had spread but there was enough concern that it might have done that she thought an MRI scan was merited. It came back clear; no spread to the liver at this time. Pleasing news.

We also went through the results of the blood tests I’d had done the previous day. My tumour marker is continuing to rise and my haemoglobin level has fallen slightly. The rising tumour marker means my cancer is active; it’s early days, but one hopes the drugs I’m on will dampen down that activity. As for my haemoglobin, if the level falls much more, we could be looking at another blood transfusion. I’ve already had two since I was diagnosed with secondary breast cancer two years ago now (Documents C and D in your folder). I’ll have blood tests and see the consultant again in two weeks’ time, at the end of this first cycle of everolimus (brand name Afinitor) and exemestane (Aromasin). We can but hope but it seems unlikely that I’ll get as long as out of this line of treatment as I did from the other two. I was on the first line for a year and almost a year with the second.

I’ve been prescribed a stronger, steroid mouthwash. Let’s hope that between that and the one I’m already using – and also the ice lollies and chunks of chilled melon and the home-made mouthrinse of salt and bicarbonate of soda – they help alleviate the discomfort from the two sores I currently have and from any future ones that might appear. If the mouth sore situation doesn’t improve, it’s possible we’ll reduce the dose of the everolimus tablets for the next cycle.

For the purpose of the tape, the consultant and I once again discussed future scenarios, with me voicing concerns I had about various things and asking questions that deep down I knew were impossible to answer in any definitive way.

As for the lesions I had removed a few weeks ago from my right calf and the sole of my right foot, I get the stitches out next Tuesday and I have a teleconsultation a few days later when I’ll find out the results of the biopsies they did on the removed tissue.

I’m looking forward to getting back on the bike and to playing tennis once the stitches are out. Running had become quite difficult for me (Document E in your folder) so I’m not sure I’ll start that again, despite that fact that Parkrun – the free, timed, mass-participation, volunteer-led 5k run that pre-pandemic took place on Saturday mornings in parks around the UK and indeed in many other countries – is meant to be starting back in June. I ran my 100th Parkrun in January 2019 (Document F in your folder) and managed one more before the very first lockdown two months later. Despite my doubts about running, I would definately (😉) like to do at least one more Parkrun post-pandemic.

For those still in the dark over what TV series I refer to at the start of this blog and from which I’ve used multiple lines throughout, it is, of course, Line of Duty. I was helped by the fab bingo card that some joker put together.

None of what’s been going on cancer-wise has prevented me from enjoying the gradual lifting of the pandemic-related restrictions. That said, the novelty of meeting up for a drink and a meal in beer gardens when the temperature is in single digits is starting to wear off somewhat. Bring on May 17th, when we can socialise inside again. Rather excitingly, the boss and I have booked two nights away at the beginning of June. It’s only an hour or so’s drive from the house but we’ll catch up with friends we haven’t seen for many, many years. It’s the first of many UK-based trips we’re hoping to be able to make over the next few months and beyond.

Briefing over, readers. As you were.

PS Thanks to the friends who contacted me after I posted the original version of this to point out a couple of obvious Line of Duty-isms that I’d missed! They have been duly added.

Restrictions lifting and moving on to the next treatment

Pandemic restrictions are loosening and things are looking up on that front. 

We’ve been limited to meeting up with just one other person outside for exercise since December but now the rule of six – whereby you are allowed to gather outside in groups of up to six, including in your back garden – is back. I’m already taking advantage of it. 

In the fading sunshine one evening last week, my husband and I had beers on Tooting Common at the bottom of our street with some friends who live locally. 

We were all so happy to see each other and to be able to actually sit down and relax and enjoy each other’s company. We’ve been meeting up on Zoom and we’ve had some really fun evenings. However, as everyone knows, it’s really, really, really not the same as meeting up in person. This group largely comprises people who were parents of children who attended the primary school at the time our two sons went there. Before the pandemic, we’d meet up once a month in a local pub. Our boys are now 22 and 20 and it’s been a great way of keeping in touch and maintaining friendships. There are way more than six of us; we did more or less manage to arrange ourselves into groups of six. 

Talking of our sons, one is already back home from uni for the Easter holidays. The other is due back later today or tomorrow. We haven’t seen them in three months. That’s not long compared with a lot of people, I know, but this is longest we haven’t seen each other in person. On Easter Sunday, the four of us will have lunch in our garden with my two London-based nieces. Blankets may be involved, depending on the weather. 

Tomorrow morning I’m meeting up, again on the common, with some other good, local friends, all women this time. We’ll be having coffee and pastries rather than beer! Before the pandemic, we would meet up in each other’s houses once a month to catch up, watch a film and discuss it afterwards. We’ve continued throughout the pandemic, remotely. Someone chooses a film, we have a chat on Zoom then we each watch the film in our own homes and we catch up again afterwards on Zoom to discuss the film. It’s been great. There are five of us in this little group, and I think it’s safe to say we all very much appreciate, and take strength and comfort from, each other. Since last August, the group has experienced three bereavements. My mum died from an infection, one member lost her sister to dementia, and another her husband, tragically to COVID. 

Later on next week, I have a game of tennis planned with my four very special tennis buddies, followed by a birthday lunch for one of them hosted in the back garden of another of them. 

Also in our short-term plans is a drive an hour or so out of London to meet and have a walk with some friends we haven’t seen since last August.

Pubs can serve food outside to groups of up to six as of 12th April. Not only have we managed to make two evening reservations for that and the following week, some friends have invited us to celebrate the 60th birthday of one of them one evening that first week at a pub where they managed to get a reservation. Also, an early supper is in the diary one evening over the next two weeks with the tennis crowd. Finally, the BellaVelo cycling club I’m a member of has booked all the outdoor tables at pub on 21st April and I’m due to attend that too. There can be no mixing between tables but it will still be lovely. 

Finally, we’ve booked to eat out – inside!!! – with four friends on the very first day that’s allowed, 17th May. 

If I sound rather desperate to be out and about again and see people, it’s because I am.

We’re also having a mini revamp done of our garden. That is very exciting, especially as we’ll probably be spending a lot of time there this Spring and Summer.

Staying with the good news, I’m due to have my second dose of the Pfizer/BioNTech COVID-19 vaccine this coming Tuesday. It’s not known how much protection the vaccines provide for immunocompromised individuals such as myself, but it has to be higher than zero, so that’s something. 

On the downside, I didn’t get the best results from my most recent set of scans. 

There are some positives. My secondary breast cancer is still confined to my bones and bone marrow; it hasn’t spread to organs such as my liver or lungs. Also, the cancer that’s in my spine isn’t exerting pressure on my spinal cord. 

The bad news is that the cancer has spread within my bones. It is showing up on scans in places that were clear before. “Disease progression with widespread metastatic disease activity now apparent”, reads the report from the combined PET-CT scan of my body from the top of my spine to my mid thighs. The MRI scan I had of my spine shows “widespread diffuse abnormal marrow signal throughout the spine, in keeping with metastatic infiltration”. That said, “overall appearances [of the spine] are relatively stable” compared to the previous MRI scan I had, almost a year ago.

In addition to there having been progression, the relevant tumour marker level in my blood is continuing to rise and my haemoglobin level has been falling. This means it’s time to come off capecitabine, the oral chemo I’ve been on for the past 10 or 11 months and move on to what will be my third line of treatment since my diagnosis of secondary breast cancer two years ago.

There are a couple or perhaps even several treatment options, each of which comes with its own delightful set of potential side effects. We’re still working out what is best and what is possible. I see the oncologist again this coming week, when we will have some more information to inform what the next steps will be. In the meantime, I’m still on capecitabine.

In light of the scan results, we made a change to the other treatment I’d been on.

With bone mets, the cancer weakens your bones. You’re therefore given one or other of two drugs that are aimed at reducing the risk of what are known as “skeletal-related events”, that is fractures, spinal cord compression, bone pain requiring palliative radiotherapy, and orthopaedic surgery. 

In my case, as well as taking capecitabine tablets morning and evening on a one-week on, one-week off basis, I’d been having monthly injections of denosumab (brand name Xgeva), one of the two above-mentioned bone-strengthening drugs.

On seeing the scan results, my oncologist changed from me from denosumab back to Zometa/zoledronic acid, which has the same aim as denosumab but works in a different way. The idea is that trying something different, even though I’ve been on Zometa before, will have a positive effect. I’m fine with that. My position is that almost anything is worth a go, despite the fact that long-term use of Zometa is associated with a higher risk of dental problems than denosumab, such as sore gums and tooth loosening.

I’d only just got used to giving myself the denosumab injections at home. Now it’s back to the treatment day unit at the hospital every four weeks for an iv infusion of Zometa. The procedure only takes half an hour so I guess I shouldn’t complain too much. However, I hadn’t been hooked up to a drip for more than a year (other than to have a blood transfusion last July) and I have to say it felt weird.

Also, because I don’t do things by half, I’m to have two freckles/moles/lesions/whatever removed and biopsied. The dermatologists who examined me said they don’t think they’re suspicious but they advise removal given my current situation and my history of melanoma. 

One lesion is on the sole of my right foot and the other is on my right calf, near the scar from where I had a microinvasive melanoma removed in 2017. The latter has been there forever; the one on the sole of my foot is new. I contacted my GP, who referred me to the dermatology department at the hospital where I’m having my breast cancer treatment. “I’m here so often I should bring a sleeping bag,” I said to my oncologist when I told her about this latest news. I thought it was funny.

I’m waiting to hear when my appointment to remove the moles will be. 

Since I completed my big athletic achievement in early March, I’ve been taking it easy on the exercise front to give my poor feet a rest after subjecting them to such a pounding in January and February. The throbbing - a side effect of capecitabine combined with pre-existing damage from the chemo I had in 2015 – has definitely subsided but it is so much worse at night than during the day. I could count on one hand the number of proper sleeps I’ve had this month. Getting up in the middle of the night to wrap my feet in a cold, wet towel in an effort to sooth the throbbing is not an uncommon event.

I’ve also been feeling knackered – probably due to a mix of a lack of sleep, the cancer having spread, a low haemoglobin level, general pandemic-related general fed-upness, and – perhaps ironically – not doing much exercise other than walking. Seriously, exercise is known to help reducing cancer-related fatigue. And as we all know, if we can exercise, it does make us feel better.

I’ll give the running a rest for another while, but hopefully I’ll start getting some proper bike rides in soon. As for what playing tennis will do for my feet, I have no idea, but I want to play and so I will. I’m not sure my feet can be much worse than they have already been.

Finishing off, we’ll just have to see how it goes with whatever new treatments I end up on. I was on each of the two previous lines of treatment for almost a year. Let’s see how long I last on this next one. Keep your fingers crossed for me.

Completing a challenge amid joy and sorrow

Last Friday was one of those days where you experience a vast range of intense emotions over a short period of time and for hours afterwards they’re all spinning round your head, vying for attention.

It was the day I finished the challenge a friend had set for herself and me in December last year. We were to run, swim or cycle the 192 miles of the Coast to Coast route from St Bees in the Lake District in the northwest of England to Robin Hood’s Bay in Yorkshire in the east. We would do it more or less together – virtually, of course – and we had three months in which to complete it, starting on January 1st.

I decided I would try to run a third of the route and cycle two thirds. I am so slow at running these days but I reckoned running 64 miles and cycling 128 miles over three months was manageable. My friend was running the whole thing. However, once we started, it soon became clear that she would finish in early March. I knew I’d have to up my game to keep up with her.

I’m not going to lie. The running was hard.

I already had a permanent tingling in the balls of my feet and my toes as a result of the nerves being damaged by the chemo I had in 2015 for primary breast cancer. I’ve said before that it’s annoying rather than painful; I am constantly aware of it but it’s just something I live with.

Making things worse, though, was the fact that I think I have developed over the past few months one of the more common side effects of the oral chemotherapy that I’m on as part of my treatment for secondary breast cancer – palmar-plantar or hand-foot syndrome, whereby the palms of your hands and the soles of your feet can become red and sore and numb and swollen and the skin can become dry and blister and peel. Luckily I only have it in my feet and even then I mainly only experience soreness and numbness. It’s more pronounced than the existing tingling (or chemotherapy-induced peripheral neuropathy to give it its officially name) and I’m in no doubt that running exacerbates it. Long walks do too – the friction from walking can result in large and painful blood blisters as the skin is more sensitive than it would usually be.

On one of the secondary support forums I’m on, we refer to it as “cape feet” – “cape” being shorthand for capecitabine, one of the chemo drugs that can cause this particular side effect.

The bottom line is that my feet hurt when I run and the further I run the more they hurt. I therefore decided that I’d do lots of short runs than than fewer, longer runs. If I was meeting a friend for a walk a mile away, for example, I’d run the mile there. I also ran the couple of miles to or back from the hospital a good few times – once after having had blood taken for my latest round of blood tests and another time after having had an MRI scan of my spine, one of the places the cancer has spread to.

Inspired by Parkrun and an associated initiative known as Cancer 5k Your Way, I saw 5k as a good distance to aim for if I was feeling up to it. Parkruns are free, timed Saturday morning 5k runs organised by local volunteers that take place in parks and open spaces around the country and indeed the world. I was a huge fan before the pandemic-related restrictions put a halt to organised outdoor sporting events and, of course, to so much more.

“Cape feet” undoubtedly affects my quality of life. However, as long as I was still able to run, there was no way I was not going to complete the running part of this challenge. I’ve stopped looking at how long it takes me to do stuff now and I’m just grateful that I’m still able to do them. I’ve embraced the concept of “it ain’t what you do, it’s the way that you do it”. Plus, I’d treated myself to a new pair of running shoes and bluetooth headphones!

To encourage myself to get out there and run, I’d been listening to podcasts. Given the foot issue, I realised something more motivational was needed. So I put together two playlists on Spotify – one is called “Mo Is Dancing” (I’m Mo) and the other is “Women in Country”. I love both and it’s always hard to decide which to listen to.

Talking of motivation, I remember on one occasion standing in my running kit outside the hospital after a scan, my feet already throbbing. I was thinking that I really didn’t feel like running home. Then I thought “what if this were going to be your last run?”. That did it, and I set off. Some people say you should live every day as if it were your last. I’ve always thought that was kind of daft because that would mean every day would be exactly the same – and potentially very boring or very exhausting depending on how you’d chosen to spend it. However, it did come in handy that day at least.

It also helped that another online breast cancer support group I’m a member of was holding a challenge of its own throughout the month of February – for its members collectively to virtually walk round the coast of the UK. In addition, my company was running a February Fitness challenge, with around 250 teams from around the world all competing to clock up the biggest number hours of exercise over the month. All the runs and bike rides I did for the Coast to Coast counted towards those challenges too.

In case you’re wondering, running doesn’t seem to cause long-term damage. You do have to put up with some sleepless nights after you’ve been on a run that’s longer than a couple of miles. The symptoms recede to a large degree after a few days of rest (ie no running or long walks) but I have to be honest, the discomfort even when I haven’t been running does still cause the odd disturbed night.

I kept up with my friend by putting in some miles on my bike (mostly outdoors, but there were also a few indoor sessions) whenever she got too far ahead. We decided to run the last few miles at the same time so we’d finish more or less together. We video-called each other a few minutes before our agreed start time and then set off, me in south London on my own and my friend in south Wales with two of her lovely three daughters. We video-called again once we’d finished. It was all quite exciting! And the medal you get for finishing is rather smart.

The challenge was organised by a company called My Virtual Medal (myvirtualmedal.co.uk). You log your miles on a website that tracks where you are on the route. My friend and I had virtual tea and cake together in some lovely coffee shops and stayed in some very nice hotels along the way! Maybe one day we’ll visit some of these places in real life. I also dropped in for a virtual coffee with a friend who lives not far off the route as it enters Yorkshire! I did in fact call her up and we had a good old chat.

It couldn’t have ended in a nicer way. Towards the end of my run, on Tooting Common, my local stomping ground, I bumped into a friend who was also out running. His wife is a senior intensive care nurse at the hospital where I’m being treated. She’s been in the thick of it during the pandemic. Her husband and I hadn’t seen each other in person for a while and we stopped to chat.

Mid-catch up, a dog runs up to me and drops a ball at my feet. I recognise her immediately. It’s Ruby, our friends’ and neighbours’ beautiful black labrador. As it happens, I am chief ball thrower for Ruby when we’re out on walks with our friends. She’d clearly recognised me and wanted to play.

Her “master”, our friend Dave, wasn’t far away. How could I say no? I laughed and kicked the ball for Ruby while half-running the last few hundred metres of my run.

Coincidentally, Dave knows Robin’s Hood Bay really well and told to enjoy myself while I was there!

Dave is a good few years younger than me. He’s been living with Parkinson’s disease for ten years. I’ve mentioned Dave before in various posts. I had the pleasure of joining him and a group of friends last summer on yet another of his fundraising events for Parkinson’s UK – this time walking the Hadrian’s Wall Way during one of those periods when the pandemic restrictions were lowered. Dave’s a bit of a legend in the Parkinson’s community and in the world of darts, having been a presenter of Sky Sports Darts for many years. Check him out on Twitter at @daveclarktv.

While I was writing this post, Dave dropped off a prize – a memento from Robin’s Hood Bay (see photo) – for having completed the challenge. I love it!

Dave and I are among each other’s biggest fans, supporting and admiring each other through adversity. It was therefore lovely to bump into him and Ruby. However, it also felt quite strange, given that just a few minutes before, I’d been standing in front of a bench a few hundred metres away with tears streaming down my face.The bench is dedicated to the memory of a good friend of one of my sons, who took his own life last October. He was 21.

I’d known the bench was there but this was the first time I’d seen it. I’d looked for it before while out running but in the wrong place and coming across it at that point really took me by surprise. The bench was covered in flowers and looked beautiful. I had this most tragic of events in my mind* when I bumped into my running friend and Dave and Ruby soon afterwards. It all felt quite surreal.

I’ll finish by saying that it was good to complete the Coast to Coast challenge early. It meant I was able to finish it before I get the results of my latest set of scans. I had an MRI scan of my spine (the first in almost a year) and a near full-body PET CT scan the week before last (the first since last September). I get the results tomorrow. As we know, there’s no point trying to second guess the results. That said, if they show progression and I have to change treatment, it’ll be better to head into the next phase with a shiny new medal than with 60 plus miles of running and cycling left to go.

*If you’re in the UK and you or someone you know is struggling, you or they can get help from organisations such as The Samaritans (https://www.samaritans.org/) or CALM (https://www.thecalmzone.net/about-calm/what-is-calm/). It’s only by encouraging people – and men in particular – to reach out and seek help that we’ll make inroads towards lowering the numbers of those who see suicide as their only option.

An update

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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 at least nine weeks before I have a scan to determine what effect it might be having. In the meantime, the regular blood tests that I’ll be having will give us some idea.

Also 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.

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.

Dodging a bullet

I feel like I’ve dodged a bullet.

Yesterday I had my monthly appointment with the oncologist and I got the results of the MRI scan I had on November 20th. That scan was prompted by the fact that the PET- CT scan I had had earlier that month had shown there had been some growth in the cancer that’s in my spine.

If this was confirmed by the MRI, there was a possibility I might need radiotherapy to shrink the tumour if it was seen to be getting too close to my spinal cord, where it could do some serious damage if left untreated.

I also got the results of the blood tests I’d had the previous day. Those results, combined with the scan results, would likely determine whether we needed to call a halt to the drugs I’m on and move on to the next line of treatment. That would have been very disappointing as things had seemed to be going so well. Obviously the longer you can stay on these early lines of treatment, the better.

Anyway, it turns out from the MRI scan results that, despite the “flare” highlighted on the PET-CT scan, there is “no strong evidence to suggest that there is disease progression”.

The results also confirm the “ongoing treatment response” on the bone marrow front. (The breast cancer I was treated for in 2015/16 has spread to my bones and bone marrow.)

Based on the MRI scan results and the blood test results, I went ahead yesterday afternoon with treatment cycle #8: the fulvestrant buttock injections, an injection in the stomach of denosumab*, and off home with the latest 28-day pack of abemaciclib tablets. The important tumour marker (CA 15-3) is up again but that in itself is not enough to come off this treatment. There’s stuff going on with my kidneys that could partly account for the rise. Importantly, my bone marrow function continues to improve – to the extent that this cycle I’ve not to give myself the injection of filgrastim, the white blood cell booster.

So no progression. No radiotherapy needed. Core treatment unchanged for one more month. A bullet dodged, whether for four weeks or longer we can’t know at this stage.

We still need to keep a very close eye on things. I see the consultant again in a month’s time and I’m to have repeat PET-CT and MRI scans early in the New Year.

So it’s still very much one month at a time but it’s nice that this particular month includes Christmas. We’re taking nothing for granted but this is an unexpected and welcome early present. We’ll accept it and be grateful.

*Denosumab is a bone-strengthening drug for the prevention of skeletal related events such as fracture, radiotherapy or surgery to the bone, or spinal cord compression. It’s given as a subcutaneous injection whereas Zometa, the bone hardener I was on previously, is given as an intravenous infusion like chemo. This means treatment now takes much less time – and I don’t have to go through the trauma of having a cannula inserted and being hooked up to a drip.