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.

A cathartic week in Scotland

I very recently got back from Scotland, where I spent a whole week visiting family and friends I’d not seen since last November.

I feel like a weight has been lifted from me. I also swear that for much of the time I was there, I came as close as I possibly could to forgetting that I have incurable breast cancer.

The main reason I went to Scotland was to see my mum. This wonderful lady is 83, has dementia and lives in a care home in my home city of Glasgow. She is very well looked after but things are tough with the pandemic. The restrictions on visiting are very tight – for example, indoor visiting is banned. In common with thousands like her, my mum is struggling to understand what is happening and is suffering quite badly from among other things the lack of social interaction and physical contact.

Over the course of seven days, I saw as much of my mum as I possibly could. I also spent time with each of my five brothers. I saw nine of my eleven nieces and nephews (the other two live here in London). I visited a few good friends, and, thanks to the good organisational skills of one brother, I managed to combine a lovely bike ride out in the countryside south of Glasgow with a visit to a cousin who recently lost her mum – my own mum’s last remaining sibling.I had four 30-minute “window visits” where I spoke to my mum on the phone while standing outside her room with her inside at the window. I also had one 30-minute socially distanced face-to-face visit in the grounds of the care home. 

While my mum now struggles to remember who we are, there’s definitely still a connection. Even if she can’t process the fact that the person standing there in front of her is her daughter, she knows that the concept of daughter is important and that the person talking to her is important to her and that she is to him or her.

The proof lies in the following anecdote.

On my first visit, I suggest that my mum write in her diary that I’m coming to see her the following day. She gets her diary out, opens it on the July 27 page, and I suggest she write “Maureen”. She writes “Maureen to visit today” in that still lovely and still neat handwriting that I’d recognise anywhere. I’m aware that the more memory prompts she has, the more likely it is that she’ll make sense of what she’s written. I therefore suggest that she also write “daughter”.  She duly writes daughter. Then, out of nowhere, she adds a little tick and a few kisses. As she adds the final “x”, she looks up, gives me a massive smile, and says with great satisfaction and pride, “there”. I can’t describe how happy that made me.

I felt relaxed, cared for and loved throughout the whole trip. Despite talking about my situation at length to anyone who cared to and was brave enough to ask, I became aware many, many times throughout my stay that the fact that I have incurable breast cancer was as far back in my consciousness as it’s been since I was diagnosed over a year ago.

It helped that the week I was there coincided with my week off treatment. Under the drug regime I’ve been on for the past few months, I’ve been taking a certain number of tablets of the oral chemo drug capecitabine twice a day – every day, morning and evening, more or less 12 hours apart – for two weeks then I have the third week off. You have to take each set of tablets within 30 minutes of eating.On the week off, I don’t have to eat at a specific time, twice a day. I can skip breakfast if I want. I can have a late supper without having to remember to eat a snack a couple of hours earlier to stay within the 11-13 hour range that I think is acceptable. I don’t have to think about whether I need to take that evening’s supply of tablets out with me in case I’m not at home. I turn off the “Tablets AM” and “Tablets PM” reminders on my phone. It’s nice.

I packed a lot into the week but it never felt rushed. 

I visited friends and family in various places – Glasgow, Killearn, Perth. I rode a tandem for the first time. I had my first ride on an e-bike. I discovered a new park in Glasgow. I was introduced to the music of a couple of bands I hadn’t come across before. I had some really great food. I played tennis. I went on two bike rides, one of 35 miles and one of 20 miles. I breakfasted on wild raspberries during a walk in a park in Perth. I had my first meal out since lockdown was introduced in mid-March. I also managed to read a whole book – Hamnet by Maggie O’Farrell.

If you’ve read the post I wrote for the Institute of Cancer Research, you’ll know that I don’t have a bucket list. That said, being on the tandem was such good fun that retrospectively I’m adding “have a go on a tandem” to and ticking it off from that non-existent bucket list! The e-bike was fun too, but not bucket list material. It may yet become so, I guess, once getting up hills on a regular road bike becomes too much of an effort.

On the book front, parts of Hamnet moved me to tears. The protagonist in this beautifully written novel is Agnes (William Shakespeare’s wife). In one particular scene, it’s Agnes’s wedding day and she’s thinking of her mother, who died years earlier. O’Farrell writes:

“[Agnes] senses, too, somewhere off to the left, her own mother. She would be here with her had life taken a different turn… So it follows, of course, that she will be here now, in whatever form she can manage. Agnes does not need to turn her head, does not want to frighten her away. It is enough to know that she is there, manifest, hovering, insubstantial. I see you, she thinks. I know you are here.”

Again, as I wrote in the ICR blog, I try not to worry about possibly not being here for specific events such as weddings – the events we fear we’ll miss may never happen – but that passage did make me tearful. Indeed it’s not exactly easy writing this now. I find the words sad but also hugely comforting. I hope that when I’m gone and people feel they have need of me, they’ll think along those lines and find some sort of peace. I recommend the book, not just for that passage.

You should get the message loud and clear from reading this that I had a really lovely time. If I’m in any doubt at all myself as to whether I had a lot of fun, I have a physical reminder that I did. I’ve got a sodding big cold sore on my bottom lip.

I’m an atheist but I was brought up a catholic and I can’t dissuade myself from thinking in a very Old Testament-esque way that cold sores are God’s way of punishing me for enjoying myself too much.

I get them quite regularly, in exactly the same place on my bottom lip. They never just happen, though. They always happen in the immediate wake of my having done something that’s really fun – skiing, being on holiday in the sun, cycling on a sunny or windy day (that’s what caused the one I have now). Of course I know that bright sunlight and the cold and the wind can trigger cold sores but I have fun thinking divine retribution is to blame.* I hate them. They are horribly painful and can make you feel really low. The Scottish word “louping” seems tailor-made to describe how your lip feels when you have a cold sore. In addition, of course, they’re unsightly – so much so this time round that I’m quite thankful I have an excuse to wear a mask in public places!

Going back to the god issue, I have to confess that I went skiing several times earlier this year and, despite skiing in glorious sunshine on some days and in bitter cold on others, I didn’t get any cold sores. I like to think that was god giving me a bit of a break cos he/she knew that 1) the scans I was due to have soon after I got back would show signs of progression and I’d have to move on to a new line of treatment and 2) coronavirus was around the corner.

The pandemic forces us to make choices. You balance the risk of catching or unknowingly spreading the virus against your desire and/or need to go to certain places and do certain things. I didn’t need to go to Scotland but I chose to go. I took care on the hygiene front and on the social distancing front I did what I could. Everyone was very accommodating. Almost everyone I came across was complying with the recommendations on social distancing and mask-wearing. I felt pretty safe. 

I also didn’t need to have a massive hug with each of my brothers or they with me, but hug we did.

It was sad that I couldn’t hug my mum. This photo shows how close we were allowed to get to each other on the outside visit. It was far from ideal but, under the circumstances, it was the best I could do. It was enough. It had to be. I feel like a different person after my trip. I realised in hindsight how concerned I’d been about my mum.

I hadn’t seen her in eight months. That’s a long time. It was a huge relief just to see her – even within the very limited boundaries of what was possible. It was also so good to be in the company of so many family members and good friends. 

I got back from Glasgow on Sunday evening. First thing yesterday I went down to the hospital to have blood taken for the regular end-of-cycle tests. Today I saw the oncologist for the results. I’m tolerating capecitabine well, the relevant tumour marker is down again and all the other blood test results were good enough to switch from a three-week cycle of two weeks on and one week off to a four-week cycle of one week on and one week off times two. I start cycle #4 this evening. Back to enforced breakfasts and reminders on my phone and, more importantly, taking the cancer treatment that for the moment at least is enabling me to get on with living my life.

*While this image made me howl with laughter, I do of course realise that it is based on an outdated stereotype. One of my mum’s sisters was a nun and she was the life and soul of the party. More pertinently, my mum’s care home is run by nuns. Before lockdown, there was plenty of singing and dancing and fun and frivolity. I hope they can return to those days soon.

Please don’t ask to see my feet

I have three pieces of good news.

One, after getting pretty positive blood test results on Tuesday, I started on round three of oral chemo that evening.

Two, I have had a post-lockdown haircut.

Three, in another very welcome development, it turns out that the seven cases of COVID-19 that had been diagnosed at the care home where my mum lives in Glasgow were false positives.

I had blood tests done on Monday, on Day 21 of my second three-week cycle of the capecitabine that I’m taking as treatment for secondary breast cancer. I saw the consultant for the results the following day. The relevant tumour marker level has fallen again by a huge amount. In just two cycles of chemo, it has more than halved. It’s only one part of the jigsaw but that’s very good news.

My haemoglobin count was fine; it has held steady since the blood transfusion I had around a month ago after my first round of capecitabine. My white blood cell count is also healthy enough, and within that, without any additional pharmacological support, my neutrophil count is ok too. Various other measures – to do with my liver, for example – are also fine.

At my appointment with her, the oncologist talks me through the results and asks how I’ve been. She has previously warned me specifically to watch out for two main side effects of capecitabine – diarrhoea and palmar-plantar or hand-foot syndrome, where your hands and feet can become red and sore and swollen.

No diarrhoea whatsoever, I report happily. “Hands and feet?”, she asks. Fine, I say, showing her my hands. My nails never recovered from chemo first time round and the treatment I was on for a year before I moved on to this current treatment made them even worse. They’re not at all painful but they are not pretty. That’s just my nails, though. My hands themselves are fine, with no sign of the dreaded syndrome. 

This is going well, I think. And then it hits me. “Please don’t ask to see my feet, please don’t ask to see my feet,” I think. I mustn’t give her any cause for concern, I think. My left foot in particular is a bit of a mess at the moment, with a couple of large and unsightly blisters at varying stages of healing (reasons below). What if she suspects they’re caused by the chemo?

Anyway, she doesn’t ask – at least not then. Next comes the physical examination. I undress to the waist and get on the examination table. The consultant does the usual (usual in normal times, that is; this is the first time this has happened since February), feeling for lumps and bumps in my chest and abdomen and getting me to take deep breaths in and out while she listens with her stethoscope. 

And then it happens. While I’m still on the table, she says “shall we have a look at your feet?” Shit. As I take my sandals off, I start wittering on about how she has to believe me when I say that the fact my feet are a mess has nothing to do with the treatment and everything to do with new pumps I bought and wore without socks and ended up with several big and really painful blood blisters and one popped and I had to cut away the skin because it was making it worse and that’s why it’s got a plaster on and I’m listening to myself and I’m saying to myself, “Maureen, shut up, just show her your feet” but I keep going and now I’m telling her – and the breast cancer nurse who’s also there – how I have a permanent flap of hard skin under my big toe as a result of a bunion-removal operation a million years ago that blisters really easily, and, really, really, this has nothing to do with the treatment.

I finally shut up. I take the plaster off to expose all. She looks and says, “that’s fine, it’s healing”, applies a fresh plaster, checks between my toes, and we’re done.

Next time, I’ll just show her.

Incidentally, these side effects can develop at any time while you’re on this drug. You can have been on it for months without any problems and then they appear.

Anyway, the end result is that I‘m on Day 3 of round three of capecitabine – at a slightly higher dose than I was on for the first two cycles. 

Everyone has a maximum dose based on their body surface area. I started on 85% of my maximum dose and now I’m on 87.5%. Ideally it would have been 90% but the tablets only come in certain strengths and that’s the closest they could get. It doesn’t seem much of an increase but these are highly toxic drugs and I guess you have to take things slowly. 

If there’s evidence that the capecitabine (also known as Xeloda) is working well  and you’re also tolerating it well, you can be switched from a 21-day cycle of two weeks on and one week off to a 28-day cycle of one week on, one week off, one week on, one week off. On this longer cycle, you have less capecitabine overall even at the higher dose and your body has more recovery time within each cycle. IMG_20200712_133309898You also have fewer blood tests and fewer hospital trips; you have four weeks at a time to live your life, as it were, rather than three*. You may also be switched if you’re not tolerating the three-week cycle well. Luckily it looks as if I might be in the former category.

In terms of knowing whether the drug is working, we currently have the CA 15-3 tumour marker level and other blood test results to go on. My first scan or scans to assess the full impact will be sometime in the autumn.

As for the haircut, it looked great when I left the hairdressers – all moussed up, blow-dried and straightened. It won’t last five minutes under a bike helmet, I thought. Having done several bike rides since, I have been proved right, but at least I know what it can look like!

I wrote about the COVID-19 scare at my mum’s care home in my previous blog post. A few days later, the seven people who had tested positive were retested and the results came back negative. To everyone’s huge relief, the original results were deemed to have been false positives. I’m getting closer and closer to deciding to go up and visit, even if it’s through a window. The fact that two friends have just very recently lost their mums has made me even more aware that this is something I have to find a way of doing, pandemic or not.

*It’s hard to keep everything in sync when you’re on treatments with different dosing schedules. For example, I have to go back to the hospital next week, just one week into my three-week cycle, for the other part of my treatment. That’s the monthly injection of denosumab, the bone strengthener that’s given to people like me whose primary cancer has spread to their bones, to reduce the incidence of “skeletal-related events” such as fractures, radiation or surgery to the bone, and spinal cord compression. Hopefully from next month I’ll be able to give myself that injection at home.

Cycling jersey memoirs, Part 1

Shortly after I moved on to oral chemotherapy at the end of May, I got it into my head that I would do a bike ride of over 50 kilometres in each of the seven cycling jerseys that I own.

There’s a story to each jersey. This challenge, I reckoned, would provide me with an opportunity to reflect on each one of those stories. As for the distance, I reckoned fifty kilometres constituted a proper bike ride. It’s sufficiently long that you have to plan and decide where you’re going, but not so long as to feel intimidating before you even set off. 

There will come a time for most of us when we’re no longer able to do the things we love. In my case, that time is likely to come far sooner than it will for most people my age. I was 57 a couple of days ago* and I view every day that I can still get on my bike and ride any distance at all as a bonus. 

I’m on treatment for advanced, currently treatable but ultimately incurable breast cancer. I’ve been on treatment for just over a year, since May 2019, but I only recently moved on to chemotherapy. I take tablets of a chemo drug called capecitabine (also known as Xeloda) in the morning and evening every day for two weeks then I have a week off. I’m coming to the end of the week off in the second cycle. I have blood tests tomorrow and I see the consultant for the results on Tuesday and she’ll tell me whether I can move on to round number three.

I’ve cycled all my life but it was only after I was treated for primary breast cancer in 2015/16 that I took up road cycling in a serious way. Before then, I’d never owned a cycling jersey. Four years on, I have seven. You may think that’s a lot. All I can say is don’t judge until you’ve read the stories. 

There wasn’t a hint of sadness involved in the decision about the jerseys and the rides. It was more a case of providing myself with an opportunity to reflect on and celebrate all the great times I’ve had on and off the bike in the past few years. Also, as I say above, it was a challenge and, as everyone who knows me is aware, I’m a bit of a fan of those.

I managed to complete the seven rides in exactly one calendar month. Or rather, I almost did. One was 42 kilometres, but it was such a nice ride that I’ve decided to include it. It’s my game and I make the rules! Anyway, I’ve included an eighth ride, which was longer than 50k and so more than makes up for the shorter one. 

This post covers three jerseys and the first three rides, in chronological order. I originally meant to cover all the rides in the one blog post but I found myself writing more than I had intended. I did these three rides with my husband, who has only just started riding a road bike again after many years of riding a hybrid for commuting and short leisure rides. He’s loving it and for me it’s great having a new and enthusiastic riding buddy who very conveniently lives in the same household!

Number 1

31 May, 68k

I wore my Mellow Jersey top for this fabulous ride of 68k from our house in Balham in southwest London out to a place in the county of Surrey called Reigate Hill. This was on 31 May, just three days after I’d started taking the capecitabine tablets and I was feeling fine. It was one of the sunniest – and hottest – days of the year so far and there was a lot of climbing involved. This was the first time my husband had used a road bike in more than three decades. Also, he hadn’t ridden anywhere near that distance before. On top of that, it was the first time he’d ridden with cycling cleats.

There was a real sense of freedom with this ride. The sun was shining and it was blazing hot, I was just grateful be out riding and my husband was loving it too. The view from the top of Reigate Hill was amazing, as you can see from the photo. Cafes were opening again in the wake of the loosening of the coronavirus restrictions and there was almost a party atmosphere at the cafe where we stopped for a break. Everyone was clearly happy to be out and about; we were no exception.

As for the kit, I hadn’t really given any thought to which jersey I’d wear for which ride. However, given that there was a lot of climbing, it was fitting that I chose the Mellow Jersey top for this one.

Mellow Jersey is a cycling tour company that runs cycling camps in the UK, France and on the stunning Spanish island of Mallorca. I’ve been to Mallorca with Mellow Jersey three times now on women-only camps and I cannot praise the organisers of these camps highly enough. My most recent trip, in March this year, was cut short by the coronavirus pandemic, but each time I’ve gone, the team has been incredibly accommodating and supportive and has got me up hills I never would have dreamt of tackling on my own.

I’ve always been a very slow climber and I’m even more so now. My haemoglobin count is low as a result of the disease and the treatment and I just don’t have anything extra to give on the hills. I make up for it somewhat on the descents, though, and I’ve never ridden faster than I have in Mallorca with the folks at Mellow Jersey!

Such great memories every time I wear this jersey – especially as all the times I’ve been on these camps, I’ve been in the company of friends and/or fellow cyclists from either one or both of the two cycling clubs I’m a member of here in London.

Number 2

7 June, 56k

The jersey I wore on the 56k ride we did on 7 June is part of the kit for one of the two clubs I’m a member of, in this case the Balham Cycling Club. 

I largely have this club to thank for the fact that I can call myself a road cyclist. I joined this super friendly and open group early in 2017, not long after I’d decided to sign up for a closed-road, mass participation, 100-mile charity bike ride known as Ride London. I did some googling and it turned out my luck was in. The club had just re-established itself, having originally been set up in 1897!

I got in touch, signed up and started riding out with the club straight away, in the “steadiest” (ie slowest – love that euphemism) group. I loved it right from the start. I told a few friends who were also cyclists about it and they joined too. Soon I was regularly doing rides of between 60 and 80k. As Ride London neared, the club organised recces of the three main hills on the 100-mile route so that those who hadn’t done it before knew what to expect on the day. It was the perfect preparation for the ride itself (more on this in the next post).

As for the kit, this was my first cycling jersey.

The coronavirus pandemic has led to all club cycling being cancelled. Even before the outbreak, I hadn’t ridden with the club for a good while. I can do distances but I’m slow and I don’t like the thought of potentially holding back even the steadiest group. I’m fine with that. I still do plenty of cycling in the club kit and am in regular contact through various social media groups.

It’s great when you’re out on a ride and you come across fellow club members. Also, it’s a truly local club; there’s even one member who lives on the same road as me and another few who live close by that you bump into off the bike from time to time.

The friends I introduced to the club have become quite involved, which has been nice to see. I have huge affection for this and my other club, BellaVelo. Last October, in a hugely moving gesture, the two clubs came together and organised a 100 kilometre bike ride in my honour and to raise funds for research into secondary breast cancer.

As for the ride in mid-June, it was put together by the club’s ride captain during lockdown. It too has some beautiful views – not to mention some sharp hills that appear from nowhere!

Number 3

14 June, 59k

I bought the jersey I wore on this mid-June ride of almost 60k in Manhattan when I was there almost a year ago, in September 2019.

I’d gone to New York to visit two aunts of whom I’m extremely fond. They’re my late dad’s sisters and one of them is my godmother.

Wearing this jersey reminds me of that lovely trip and also of the almost two years I spent living in New York in the mid 1990s.

The make of this jersey is Rapha. It’s a high-end brand, is very expensive and cyclists either love it or hate it. As for me, I loved this jersey as soon as I tried it on and I decided to buy it there and then, as a massive treat to myself. You can imagine how pleased I was to find out when I went to pay that it was in the sale at a vastly reduced price! 

The photo here is of me enjoying a well-deserved ice cream near the end of what turned out to be yet another hilly ride on yet another very hot day. If I look sweaty and exhausted, it’s because I was!  

Writing about these rides has reminded me just how much of what we enjoy about life has to do with the people we share it with. 

I didn’t know what to expect when I was first diagnosed with this life-limiting illness in March 2019.  I’m not sure I thought that almost 16 months on I’d be managing to cycle 50 kilometre rides once or twice a week. Who knows for how much longer I’ll be able to do that? At this precise moment, I don’t feel any need to dwell on that question.

The stories for jerseys and rides four to eight will follow.

*My birthday on Friday involved family, friends, tennis, cycling, cake, prosecco, being cooked for, and some very nice gifts. How could that be anything other than hugely enjoyable? On the downside, yesterday we heard that seven cases of COVID-19 – all asymptomatic – have been identified among the residents and the staff and the nuns who run the care home my mum is in up in my native city of Glasgow. They had done so well; these are the first cases they’ve had, or at least identified, and everyone is devastated. Just as they’d announced that limited face-to-face visiting would be allowed for the first time since the start of the epidemic in March, they’re having to impose even stricter restrictions. My mum has dementia and is really struggling with the isolation. Where will it end? Things like this really ram home what a very difficult time this is for so, so many people.