Well that didn’t last long

After four or five glorious days of respite during which once again I could eat whatever the heck I wanted, another blasted mouth sore developed. It was mild to start with but for the past few days it’s been as vicious, if not even more so, than the two I’d just got rid of

Managing these painful, spirit-sapping sores takes effort. For a start, when do you eat when frankly it’s the last thing you feel like doing? Also, what do you eat? 

Because of where this latest sore is, I can only open my mouth so far before it starts hurting. It also hurts to fully close my mouth. The other day in a cafe with friends, I had to cut the crusts off a toasted sandwich and cut the rest of the sandwich into tiny pieces before I was able to eat it. And rather than have a hot coffee, I had a healthy beetroot and carrot juice concoction that I drank through a paper straw. It was rather nice, if also rather expensive. 

And how do you brush your teeth without touching the sore and nearly fainting from the pain? I was always a hard-bristle kind of gal, but I have just bought some soft-bristle brushes.

And how often do you rinse with the various mouthwashes you have? They all sting.

When I had my appointment with the consultant oncologist who’s treating my secondary breast cancer and me on Thursday this past week, this new sore wasn’t causing too much trouble. I had thought that was as bad as it was going to get. I therefore bravely and, with hindsight, in far too cavalier a manner, told the consultant I’d stay on the highest dose of the tablet that’s the cause of the problem for another month. 

However, rather than improve, things got worse. I’m now seriously thinking that I will indeed have to reduce the dose. I’d really rather not do that but I may well have to as this really is no fun. If another sore appears after this one, my mind will be made up. I think. It’s a bit like a “good” childbirth. Once it’s over, you forget how painful it was. Until the next time.

That’s the bad news from this week. It’s been a busy one on the health front, with plenty of decent or even good news. I need to focus on that, really.

The chest x-ray I had on Wednesday was clear. That means that the new treatment regime of two drugs – mouth-sore inducing everolimus and exemestane, both taken as tablets, daily – hasn’t done any damage on that front. 

Also, the results of the biopsies on the pigmented lesions that I had excised on my right leg and foot, also four weeks ago, came back clear. We had suspected they would, but it’s good to have that confirmed. The wound on the sole of my foot that wasn’t healing well is looking much better. 

There’s more. The blood tests I had on Wednesday – immediately before I had the chest x-ray – showed that the all-important tumour marker is stable compared with two weeks ago. That’s the first time it hasn’t risen in many, many months. It’s early days but it shows that perhaps the new treatment will have a dampening effect on the tumour activity. That makes the mouth sore issue even more frustrating.

My kidney and liver are functioning ok too. However, my bone marrow is still struggling (the secondary breast cancer that I have is in my bones and bone marrow). 

I can walk for miles on the flat without any trouble but increasingly just walking up stairs had been making me breathless. The first thing I said to the oncologist when she asked how I’d been was that I reckoned my haemoglobin level had taken a bit of a dive. That was indeed the case.

The bottom line is that after seeing the consultant on Thursday morning, I spent four and a half hours in the Ambulatory Oncology Care Unit at the hospital having a blood transfusion. It takes around two hours to transfuse a single unit of blood and I had two, the same as on the two previous occasions where I’ve needed help on the red blood cell front.

I do feel much better now, energy wise. Never one to waste a good blood transfusion, I have planned two bike rides for this week, one short and one a bit longer. This will be the first exercise I’ll have done other than walking for over a month, specifically since I had the procedure done on my foot. Fingers crossed my foot wound and energy levels behave and that I manage if not both, then at least one.

Distractions are good. They take my mind off what’s going on in my mouth. There have been a few this week. 

Work continues, for example.*

Monday saw us have a meal out – inside at a pub restaurant – for the first time in many, many months. Gathering at the bar is not yet allowed so it’s all table service but it pretty much felt like nothing much had changed.

We went to the pub again (a different one) on Thursday evening to celebrate a friend’s 50th birthday. This time we were outside, as more people are allowed to gather together outside than in.

The wind did its best to blow us away; it did in fact blow a glass of wine into my lap! However, we held firm and had a lovely evening. I’d only been planning to stay for an hour as I’d been feeling miserable earlier that evening. However, such was the power of the blood transfusion I’d had that afternoon that I not only went out but stayed as long as everyone else, ie until closing time. I also remembered that white wine stings less than beer on the mouth sore front so, after one beer, white wine was my tipple of the evening.

Both those nights out were organised well in advance. On Saturday, though, we did something on impulse. Yes, read it again, on impulse! We went to the cinema and, as if that weren’t enough, we went for a meal afterwards – without booking!!!! There was social distancing in the cinema itself but it’s been a long 14 or 15 months since we’ve done anything that remotely “normal”. 

The restaurant was Turkish, where we knew we’d be able to order lots of mouth-sore friendly dishes such as all sorts of tasty but not spicy dips with lovely warm, soft bread.

The film we saw was Nomadland, which was great to see on the big screen with all those amazing American landscapes.

I watched a lot of the film through tears. If you’ve seen it and you’re aware of my situation, you’ll understand why. This phrase from one of the characters, who has terminal cancer, spoke volumes to me: “I don’t want my sail boat to be in my drive when I die.” 

You can take that literally or figuratively. In my case, much as I’d love to do it, heading off on a yacht is not practical. I hope we can head off on foreign trips soon but, in the meantime, there are plenty of things close to home that bring joy.

I’m feeling quite sentimental so I’m going to mention a few.

There’s new life all around. Our revamped garden is bursting into life and everywhere I go it seems I see baby birds. With the ones in the photo here, at Kew Gardens this week, there was no drama – unlike the previous week at Richmond Park.

A friend giving me as an early birthday present a beautiful throw that she’d crocheted herself.

Another couple of friends handing in a surprise bunch of flowers.

Our sons, who are away at uni, WhatsApping us photos of things they’ve cooked for supper. Or one of them pretending he’d had his nose pierced and using it to encourage me to have mine done; I’ve been saying for ages that I want to do it but I’m too nervous.

One of my brothers who lives in Glasgow going out of his way to take one of my sons out for dinner when he was on a work trip in the north of England, near where his nephew’s at uni.

The many messages I get from friends asking how I am and sympathising with me on my “issues”.

And, most recently, my husband presenting me with a box of Tunnocks tea cakes “because they’re soft and they won’t hurt your mouth”.

Allow me a schmaltzy ending: “Take joy in the small things because one day you’ll realise that they were the big things.”

*My story about working with an advanced cancer diagnosis is featured in a campaign that has been launched by an organisation called Working with Cancer. I’m upfront about my prognosis right at the start so please only read it if you’re prepared for that – https://workingwithcancer.co.uk/2021/05/11/maureen-kenny/.

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.

Expectations? It’s hard not to have them.

It’s sometimes good to have positive expectations – I think as humans we need them – but I should know by now that it really doesn’t do to raise your hopes in this cancer business. 

I don’t want to overdramatise things, but I have to confess to feeling rather annoyed at myself for daring to hope that things might have been different from how they turned out last week.

After just two months of staying where it was, that old tumour marker level is up again. This cancer of mine is doing a damn good job of fighting against the drugs that I’m on to try and contain it.

I’m – still – a glass half-full person and I couldn’t help but let myself hope that this “period of stability” might last for slightly longer than two paltry months. In fact, it wasn’t even two months; it was eight weeks. But it wasn’t to be. 

There I was, early Wednesday afternoon last week, feeling pretty good, in the middle of a regular, super busy day at work – working from home, of course. My oncologist was due to call with the results of the blood tests I’d had the previous day, at the end of my latest four-week cycle of oral chemotherapy for the secondary breast cancer that’s in my bones and bone marrow.

Was it too much to ask that the tumour marker level might have remained stable for even just another month? Apparently so.

The results showed my haemoglobin level was down. That’s not such a big deal as it fluctuates from month to month and it’s still at a decent enough level. My neutrophils were also down – to the level where it is just ok to go ahead with the next cycle of chemo. That’s ok, they’ve been there before. But, disappointingly, my tumour marker level was up by almost 20% over last month and is back up to where it was in August. I said already that I don’t want to overdramatise things. Specifically, it’s nowhere near as high as it was when I was first diagnosed in Spring 2019 or when I switched on to the drug I’m on now, in May this year. But that period of stability I had dared hope for never materialised. Also, the level never got as low on this drug as it did with the first drug I was on.

My oncologist knew I’d be disappointed and said she wished she had better news for me. We’ll carry on as is. My next scans are due early on in 2021 anyway. They may or may not show what’s causing the rise in the tumour marker level. I don’t expect the level will go down again although I guess it’s possible. It could stay where it is or it could be that it’s on an upward trajectory that will ultimately lead to my having to change on to the next line of treatment – whatever and whenever that may be. What will be, will be.

The standard regimen for the capecitabine oral chemo that I’m on is two weeks on, one week off. You take tablets every morning and evening for fourteen days then you have a week off and have blood tests at the end of the three-week cycle. I had been tolerating treatment well and my cancer was also responding well so a few months ago I switched to a four-week cycle under which you have one week on tablets followed by one week followed by the same again. It’s easier on the body. Should we go back to the more intensive regime, I asked my oncologist, thinking that might give the cancer more of a run for its money. But it’s not as simple as that. She doesn’t think my bone marrow would tolerate well “two weeks on, one week off” and that if I were to switch, I’d end up needing a dose reduction, which would defeat the purpose of switching.

How can this be, I think to myself. Physically I’ve been feeling really great. In the past few weeks, I’ve played tennis, I’ve been on the bike (outdoors and indoors), and I’ve done a 7k run – a very slow one with two stops for errands but it was still a run. Feeling well physically makes you feel well mentally so, to be fair to me, those two things probably contributed to my allowing myself to think things might have been under control cancer-wise.

I started my latest four-week cycle of capecitabine at the beginning of this week. Four weeks will take me well beyond the pandemic-restricted Christmas season, which we plan to enjoy regardless.  

The tree has been up for a while and I indulged myself this year and bought three funny-to-start-with-then-really-annoying singing trolls. They sing The Jingle Bell Rock and it impossible to get them all singing it at the same time. They do make you laugh when you set them off, though, and laughs are just what we need at the moment.

My husband has not only already made the gravy for Christmas dinner in advance, he has also prepared the stuffing and made a Christmas cake. Our two sons are home from uni, which is lovely.  Their very presence lifts the sprits. I’ve even made myself appreciate the sound of them singing in the shower to music, much of which is really not my taste and is far too loud even when I like it! What I really find amusing is coming down in the morning and trying to work out what they’ve eaten since I  went to bed the previous evening. This morning there was an empty cereal box beside the recycling bin and an empty hummus container in the bin itself  – neither of which was there at midnight last night! It reminds me of my own youth back in Glasgow, although with me it was cheese toasties rather than cereal. As for hummus, I’d never even heard the word, never mind eaten the stuff!

We have plenty of things planned over the Cristmas break – either with or without the boys, in case they read this and start panicking that they will be asked to go on a walk. There will be indoor and outdoor games, films, long walks, bike rides, and Christmas Day catch-ups on Zoom with friends and family. I will enjoy the four weeks of this cycle and will aim to have no expectations one way or the other in advance of my next blood tests and appointments in mid-January.

I had got used to taking things a month at a time and will pretty easily revert to having that mindset. Interestingly, the pandemic is forcing everyone to focus on the shorter term. This is something those of us with life-limiting illnesses have already had to learn to enable us to live with some modicum of peace. It’s not such a bad way to live your life. 

Still looking on the brighter side of things, it seems there’s no reason I shouldn’t be vaccinated against COVID-19 when the time comes. It doesn’t feel like it when I’m on the tennis courts or sweating buckets during an indoor cycling session on my newly purchased smart turbo trainer, but I’m in the “clinically extremely vulnerable” category.

That means I’m pretty high up there in terms of who gets offered the vaccine, although it will still be some time before it’s my turn.

No cancer patients were included in the trials of the vaccine; the big question is how much immunity it will give people like me, on chemo with compromised immune systems. I guess like many things relating to the pandemic, we won’t know until we know.

Before this latest lockdown, we’d gone out for a few pub meals – outside, as was allowed, in heated beer garden areas. At the beginning of this week, the NHS Covid app alerted me to the fact that I had been in contact with someone who had the virus and advised me to isolate for all of two days, which I did. I’m assuming it was related to eating out. I had to cancel a trip to the bike shop and a long walk with a friend that I was very much looking forward to; you’ve got to do the right thing. I’ve had no symptoms and so haven’t had a test myself.

I’ve had much to celebrate and enjoy this year but there’s also been a lot of sadness and sorrow, related to the pandemic or otherwise.

There have been too many deaths and too much serious illness among relatives, friends and acquaintances. A couple of the deaths have been far too premature and/or have happened in heartbreaking circumstances.

Even when a death goes well, as it were (as it did with my mum , this past August), it’s still hard. When I was diagnosed with primary cancer back in the summer of 2015, I wrote a piece about how it was ok to cry. Well this year, I have cried so many tears. Just the other day, Everybody Hurts by REM was playing on Spotify and half-way through I felt the floodgates open and there was nothing I could do except go with it. Sometimes you just have to let it all out. Grieving is a process that lasts a long time, and that’s ok. Also, I think the pandemic has made many of us more fragile than we were before. Things you might have batted off easily in pre-pandemic times can these days tip you over the edge.

Along with the grief, there has been a lot of joy. I will remember this year with fondness along with extreme sadness. Fundamentally, I am so grateful still to be so well physically. Also, the pandemic has led to people showing so much kindness and generosity of spirit. The older you get and/or the more the going gets tough, the more you appreciate that it’s connections with others and taking pleasure from everyday occurrences that matter most. I can’t deny that managing to do the Hadrian’s Wall Walk in northern England in September and escaping to Greece for ten days in early October also helped! 

Anyway, enough about me. Even in the best of times, it can’t be easy to make calls such as the one I received from my oncologist, can it? And let’s face it, there’s news far worse than that that they have to impart. So let’s spare a thought for all the healthcare professionals who are under intense and immense pressure at the moment, trying to manage the pandemic on top of everything else. This article by Lucy Gossage, the oncologist who co-founded the ‘5K Your Way, Move Against Cancer’ initiative, provides a great insight into how challenging things are, and that’s just in oncology – https://www.theguardian.com/society/2020/oct/29/watching-cancer-patients-treatment-alone-heartbreaking

Back to me (that didn’t take long!). This year I’ve found it hard to write Christmas cards. My heart has just not been in it. The naively exuberant words that that are printed in some of the cards somehow seem inappropriate when for so many it’s been a really dreadful year. The last thing lots of people will be having is the “wonderful Christmas” they’re being wished in the cards we send. Perhaps I should have made more of an effort, though, as I do appreciate how nice it is to receive cards.

I really do hope for a safer, saner and brighter year for everyone in 2021. If that’s not possible, then I wish calm and peace for those who are grieving or struggling or dealing with problems of whatever kind. 

Let’s finish with a smile, with a photo that was “Christmassed up” by my brother Stephen – so many thanks to him for that.

The original photo is from when my husband, the boys and I went wakeboarding in London’s Docklands for our younger son’s 20th birthday in August. I love this photo.

That day was one of the many highlights of 2020. I fully expect – here come those expectations again – that whatever 2021 brings, it too will have plenty of highlights. Best wishes to all. Thanks for reading.

 

Death in the time of coronavirus

My beloved mum died at the end of August and I’ve been wondering how to write about it for a while now.

I’m not sure it has much to do with the subject of my blog but I want to write about it and it’s my blog, so here goes.

Mum took ill at the care home she lived in in Glasgow one day in late August. She was taken to hospital, and things deteriorated very quickly. Two days later, my five brothers and I found ourselves on a call together where we had to decide whether to authorise a specific medical procedure, which would be distressing for mum and had no guarantee of success, or to stop treatment, have the staff make her comfortable and let nature take its course. It took us seconds to come to the unanimous decision that we didn’t want her to suffer if it could be avoided. Less than two days later, she was gone.

I took a train up to Glasgow from London as soon as I could after that call. Mum died less than 36 hours after I arrived – and less than eight hours after my older brother, the oldest of my siblings, arrived, having flown back urgently from abroad. My other four brothers were already there.

Mum, who was 83 and had dementia, never really regained consciousness after entering hospital. Nonetheless, perhaps she sensed the constant stream of love that flowed towards her in her final couple of days as her children, daughters-in-law and grandchildren came to sit and spend time at her bedside. Others – grandchildren who couldn’t be there for whatever reason (Covid-related restrictions largely), sisters-in-law, son-in-law, children’s partners, nieces and nephews, and friends – video-phoned to say goodbye, or passed on their goodbyes via those of us who were there.

We are all beyond thankful that she was moved to hospital from the care home she was in. After months of enforced non-contact because of Covid, we were finally able to kiss her, touch her and hold her hand.

Towards the end, all six of her children were with her, gathered round her bed. The usual talk and banter that happens when we’re all together was mixed in with the sadness and sense of occasion.

It was a very special time. We all felt very strongly the bonds that linked us all. It was a privilege to be there.

Mum had been such a focus for myself and my brothers since our dad died almost five years ago. Her death is huge loss. However, as the pandemic rages on and we face another lockdown, I think we also feel a certain sense of relief.

While this gracious and giving elderly lady didn’t die of coronavirus, she was most definitely a victim of it. She thrived in company. The restrictions introduced under the pandemic deprived her among other things of almost all contact with the family she loved and her resulting decline was sad to witness.

The pain the pandemic has caused and is continuing to cause is immeasurable. The way in which it is affecting people in care homes seems inhumane. It beggars belief that in seven months we haven’t found a way of enabling relatives to spend time with their loved ones in care homes, many of whom – no matter how high the level of care they are receiving – are suffering huge mental anguish and physical decline as a result of their enforced isolation. We’re protecting lives at the expense of quality of life or living and I can’t genuinely say I think that’s the right thing to be doing.

When it became clear that the virus was here for the duration and that visits to care homes would be severely curtailed, my brothers and I would chat about what the best outcome might be for mum. We used to say – in all seriousness – that the best thing would be for us to take her from her care home, have her spend a week with each of us during which time we’d have her singing, dancing and enjoying being in the moment – at the end of which she would somehow simply pass away. We knew it wasn’t practical but it was a nice idea.

My mum wasn’t aware I’d been diagnosed with incurable breast cancer. When I found out myself some 20 months ago, I decided there was no point in telling her. My brothers were quick to agree. Her dementia meant she would either forget we’d told her or she’d be terribly distressed by the news – or indeed both, at different times. I’m glad in a way that she didn’t know; that’s not the kind of news a parent needs to hear.

The photo below is from a year-and-a-half or so ago; it’s one of my favourites.

I take comfort from the fact that I saw my mum in good health and in good spirits – relatively speaking – just a few weeks before she died. It had been nine months since I’d last seen her. I don’t believe in fate, but on this occasion I feel a huge urge to thank my lucky stars that I made the decision to take that trip up to Glasgow when I did.

We’re lucky in comparison with the many, many people who weren’t allowed to be with their loved ones towards or at the end. There was lots we weren’t able to do because of the restrictions, but this was as good an ending as we could have hoped for – even in non-Covid times, I think it would count as a good death. Never in our wildest dreams did we think that we’d all be able to be there with her, together.

Not only that, we were able to deliver a eulogy as part of the funeral service in my mum’s local church. It was the first time this had been allowed since the start of the restrictions. Most of the immediate family was in the church, including all 13 grandchildren. The allowed maximum number of funeral attendees in Scotland at that point was 20; we managed to make it 21 by having one daughter-in-law as the cantor! The service was streamed so people could watch it online. While we weren’t allowed to carry the coffin out of the church, my brothers and I were able to carry it from the door of the church to the hearse that was waiting just a few yards away. This was symbolic as much as anything but the six of us had carried my dad and it just felt right that we would carry on this last part of her journey this woman who’d carried us – both physically and metaphorically.

Relatives and friends who hadn’t been able to attend the service gathered at the cemetery – in foul weather.

Afterwards we even managed to have a socially distanced buffet for the immediate family.

A day or two after my mum died, my brothers and I gathered together to reminisce and play cards. The following day, restrictions were put in place that banned indoor gatherings in that part of the city.

It seems the gods were on our side in many ways.

I’ve been wondering what all this has to do with my condition.

It’s relevant because the way I look at death has changed as a result of my diagnosis. I’ve had to come to terms with the fact that I will die “before my time” and for me at least, it helps to talk about it, to acknowledge it, and to plan for it. It’s not an easy thing to do, but we should all talk more about dying.

As part of that process I came across Dr Kathryn Mannix, a palliative care doctor in the UK who advocates for more openness around the topic of death. I’d highly recommend her book, With The End In Mind (how to live and die well).

Coincidentally, Dr Mannix shared a thread on Twitter just as it became clear to us that my mum would not be with us for much longer. I in turn shared the thread with my brothers. We all took comfort and strength from her words.

“When we take our turns at the bedside, or the virtual bedside, of our beloved dying person, it’s a memorable and profound experience. It is life-changing. It is our privilege to be there for each other as we learn the lessons of the deathbed.

As we sit with our beloved dying person, we are exchanging our final gifts. We are giving them the gift of our companionship and attention, and they are giving us the gift of showing us how to die. It’s an act of love.”

That’s exactly how it felt. We felt blessed.

When I wrote my last post, I’d just had my first scan since starting on oral chemotherapy at the end of May. I’m happy to report that the results showed my cancer is stable, with no signs of progression. Overjoyed wouldn’t be an appropriate emotion given that things can change from one month to the next, but that’s as good news as I could hope to get. Also, the tumour marker level that went up last month went down slightly this month – not by much at all but at least it didn’t go up. Again, the word thankful springs to mind.

Cycling plans come crashing down

This really was going to be the year of the bike. I’d even bought an additional week’s leave from work so I could fit in all the cycling trips, events and related training that I had planned.

The secondary breast cancer diagnosis I received at the end of April, though, put paid to that. The primary breast cancer I was treated for in 2015/16 has come back and has spread to my bones – most significantly to my spine  – and bone marrow. It’s treatable but not curable.

I know the diagnosis is the key thing here. Everything else, really, is insignificant. However, when I got my diagnosis, I just felt all the ambitious and exciting cycling plans I had for the summer collapse around me. To make matters worse, I had my good bike stolen from outside the hospital where I had the appointment with the consultant on the very day she told me she strongly suspected my cancer had come back. It really felt like someone had it in for me.

Most significantly, I’ve had to pull out of the big charity bike ride I was planning on doing in France in July that consisted of cycling Stages 5-7 of the Tour de France route a week before the real thing. I was due to cycle 345 miles over three consecutive days as part of a big fundraising event known as Le Loop. Instead, I’ll be following the other riders’ progress from my home in south London. The other riders are doing anything from two to all 21 stages of the Tour.

I’m a member of two cycling clubs, one of which is BellaVelo, a fabulous women’s cycling club and community based in south west London. A bunch of us from BellaVelo had signed up to do various stages of Le Loop. It was all very exciting. There was such a buzz around it. Almost every conversation I had with relatives, friends and colleagues involved someone asking how my training was going or asking for details about the event itself. I’m gutted not to be doing it.

I’ve also had to withdraw from the “Highland 500”, a version of the famous 500-mile bike ride round the north coast of Scotland that I was planning to do with my brother Peter the first week in June. This was to have been a major piece of the training for Le Loop. For seven days in a row, I should have been struggling up and racing down one hill after another in the Scottish Highlands. Instead I was at home in Balham getting to grips with the treatment I’d just started and with the symptoms of the cancer itself. 

Among other things, I have anaemia as a result of the cancer being in my bone marrow – it can also be side effect of the treatment I’m on, so that probably hasn’t helped – and I’ve suffered a massive loss of energy. I bought a good second-hand bike to replace the one I had stolen; at the moment even looking at it makes me tired. In fact, the anaemia is at the stage where the consultant oncologist is proposing a blood transfusion.

My fundraising for Le Loop had been going really well. I was already well over my target of £1,200 when I got the news that my cancer had come back and realised there was no way I would be doing this event.

The training was also going well. I was walking or running up the stairs on the London underground. I was doing indoor cycling sessions aimed at improving my pedalling technique, my endurance and my hill-climbing abilities. Quite frankly I’m not sure how much progress I was making on that last front but I was at least trying! I even rode up and down Box Hill in Surrey five times in a row one day.

I had also been on a cycling training camp in Mallorca with BellaVelo in March. That trip was to kickstart my outdoor training for Le Loop… and that’s where my back and right hip starting hurting. I followed it up when I got back to London and that ended up in a diagnosis of metastatic breast cancer. Sadly I only managed one ride with my other club, the Balham Cycling Club.

All was not totally lost on the cycling front following my diagnosis. We agreed I’d start treatment the week beginning 20 May and this meant I could go ahead with the four-day BellaVelo cycling training camp that I was helping organise in the New Forest from 9 – 12 May. I was slow, as I knew I would be, but it was great fun.

It also meant I could go on a four-day tennis camp in Mallorca with three friends, as planned, from 13 – 17 May. I could have started treatment that week, but I think the consultant felt sorry for me. “Do your tennis,” she said, “before I take away your summer.”

Finally, on 19 May, I did the shorter version of the Etape Caledonia, a beautiful closed-road bike ride that starts and finishes in Pitlochry in Scotland.

I had signed up originally to do the full 85-mile route, again with my brother Peter. I was pretty confident I could do the full distance but I knew I didn’t have the strength to do it in the allotted time. There was no way I was going to suffer the ignominy of being swept up by the “broom wagon”, so I did the shorter, 40-mile route instead.

It was a bit of a logistical challenge to get to Pitlochry but I’m glad I made the effort. It was very special – and not just because I’m Scottish! The real reason, of course, was that I knew I was starting treatment in a few days’ time. I didn’t know (I still don’t) when – or even if – I’d next do another ride like that. Peter rode the first 13 miles with me to where the two routes separated then sped off to complete the full 85 miles.

The final cycling-related casualty this summer of my diagnosis is likely to be Ride London, the 100-mile closed road bike ride through London and the Surrey hills that’s taking place this year on 4 August. I got a place in the public ballot this year. This was to be the third and – I’d already decided – final time I’d do it. It was to be the grand finale to an amazing summer of cycling.

You never know. If I get off lightly on the side-effects front, get an energy boost,  manage to get my head in gear and keep cycling during these first few months of treatment, I may try the shorter, 46-mile version of Ride London. At the moment, I have no idea how feasible that might be. 

The pain in my hip disappeared for a while but it’s back now. Regardless of whether it’s related to the cancer or not, that pain is worse than any pain I have in my spine (where there’s definitely cancer) or in my ribs (where there possibly is).

My cancer will obviously affect my physical ability to do things as it progresses. It’s already doing so and we’re just at the start. Specifically, I fear my days of competitive tennis are over. Just like that. The stress on my back and hip is just too much.

As for running, well I’m not so sure on that front yet. I can’t bring myself even to try at the moment.

There’s obviously a weight-bearing thing going on here. My hip doesn’t hurt at all when I’m on the bike and my back only hurts a little. All the way through my treatment for primary breast cancer and beyondthe bike has always been part of the solution. I’m desperately hoping that continues to be the case.

What do you mean I look like a wreck?

This post isn’t new. I wrote it in mid-September for the Macmillan cancer support charity on the importance of exercise during my breast cancer treatment and ongoing recovery. I read back through it the other day and realised – to my astonishment, really – that nearly 11 months on I’m still seeing improvements from the surgery I had last December. Details will follow but in the meantime I decided I wanted this on my own blog for the record. I really like it; it’s nice and upbeat and it makes me smile. 

Here it is…

When the consultant breast surgeon greeted me at my most recent appointment with the words, “You look like a wreck”, I was more than a little confused. It seemed completely out of character and was, I thought, downright rude. More importantly, though, I was feeling really well physically and just couldn’t fathom why he’d say such a thing.

I’m fitter and healthier than I’ve been in years. Since finishing pretty gruelling treatment for breast cancer nearly seven months ago, I’ve been eating healthily, I’ve cut down on my alcohol consumption, and I’m exercising loads. As 53-year-old women go – never mind one who’s relatively recently been through cancer treatment – I think I’m doing pretty well.

“A wreck?” I said, trying not to sound put out. “But I feel great.”mo-parkrun-edit-2

“Not a wreck,” the consultant said, amused that I could think he’d say such a thing. “A rake! You’re fading away.”

I laughed at the misunderstanding and reassured the doctor that I was not in fact fading away. Since my diagnosis in July 2015, I have, however, lost the six, seven or eight kilos that I’d put on gradually over the previous decade. The consultant’s comment illustrates just how much I’ve taken on board the recommendations for healthy living that you’re advised to follow when you finish cancer treatment. Doing certain things, you’re told, reduces the risk of your cancer coming back. I’m at high risk of recurrence, so it’s perhaps not surprising that I’m trying to do everything I can to lessen that risk.

Initially I was ambivalent about the lifestyle changes I was making. I felt they were driven by fear of recurrence rather than by a genuine desire for change. But now I’m positively enjoying being fitter and healthier than I was pre-diagnosis.

I’m loving the extra exercise. I’ve always been sporty – tennis and cycling have been part of my life for years – but for the first time in my life I’m enjoying running. I’ve even joined a local running club.

I invariably feel better after exercise. During treatment itself, on more than one occasion, I felt it was my saviour. There were days when I’d be feeling tired and low and I’d force myself to cycle to the hospital or clinic appointment rather than drive. During radiotherapy I challenged myself to cycle to more sessions than I drove to. It wasn’t always easy, but I won – just! No matter how I felt when I left the house, I always felt better by the time I got to my destination.

When I did my first local 5K Parkrun in mid-April six weeks after finishing radiotherapy, I was both relieved and elated. Around 300 people did the same run that morning. I was amongst the slowest. Running the same route at the same time as all these other people, however – and knowing thousands of others were doing exactly the same thing in Parkruns up and down the country – in some way made me feel I was back in the real world after having been in some sort of parallel universe since I was diagnosed in July 2015.

I had Stage 3a breast cancer and went through six-and-a-half months of treatment that comprised eight sessions of chemotherapy, a right-side mastectomy with immediate own-tissue reconstruction, lymph node clearance and 16 sessions of radiotherapy. It takes a long time to recover from that kind of treatment. The chemotherapy-induced peripheral neuropathy that I had in my feet is pretty much gone, but I still get the odd niggle, especially when I run (ironically). My upper arm on the operated side is still numb and there’s a feeling of discomfort in my chest and armpit that never quite seems to go away. There’s a little swelling in and around the operated area that’s been diagnosed as lymphoedema. Some days even now, I can feel really fatigued and have to take things easy. I’m on letrozole anti-hormone therapy and if I stay sitting for too long I feel my joints stiffening up. Hot flushes appear out of nowhere. In my right hand I’ve developed trigger thumb, a painful and annoying condition that can be caused by low oestrogen levels, which is precisely what letrozole is designed to achieve.

There’s no doubt that exercise helped and is helping me deal with both the physical and emotional effects of having had breast cancer. Everyone has their own way of coping, and exercise, it seems, is mine. There’s no downside as far as I can tell. I’m aware that what is a huge challenge for some is a breeze for others and vice versa. It’s about knowing what’s right for you and about setting achievable goals and not being overambitious. Exercising with friends or in a group can help.

For me, exercising is empowering. I’m fitter, I’m healthier, and over the past few months I’ve met some great new people. On the recurrence front, I know there’s no guarantee my cancer won’t come back. Exercising is a massive help in keeping in check my fear that it might.

 

 

 

“A star patient.”

“A star patient.” The words of the plastic surgeon after the operation. All appears to have gone well, Maureen is awake and talking rather a lot (no change there, then) and taking her usual interest in her surroundings, which currently amount to a labyrinth of tubes and various plastic bottles containing er, stuff (biology was never my strong point). So, a difficult day over and let’s hope she’s back home in time to cook the turkey (I mean, to be looked after and waited upon by her loving family!). Thanks for all your good wishes. Andy.

The torture of scalp cooling

That’s Chemo Cycle 2 over, and was I happy to see the back of that one.

Getting the chemo was fine, but OMG the scalp cooling. That was torture and it took all my strength to go the distance.

I have just read over my post after the first session where I said that the cool cap was “bearable”. I can’t believe I wrote that. It really was mind over matter to get through the first 20 minutes this time; the oncologist had said if you can get through the first 20 minutes, you’ll manage the whole thing, as that’s the time it takes to get to the required temperature. I buried my head in a book and tried very, very hard not to clock watch. I had a fleece and a blanket over me and I was still cold.

So you wear this really tight silicone cap on your head that covers your whole skull. That’s covered with a neoprene cap that insulates the inner one, and that’s kept on with a scalp coolingreally tight chin strap that pushes your cheeks up and makes you look like a hamster. The cap is connected to a cooling unit that circulates coolant through the cap “extracting heat from the patient’s scalp”. Your scalp needs to be cooled from its normal temperature of 36 degrees C to below 24 degrees C. Sounds lovely, huh? I swear I felt ice when I touched the back of my neck.

Even though the wig’s been bought – and I love it – I can’t bring myself to say no to the cap. Hair loss usually starts after the first or second cycle, so I guess I’ll know soon enough whether the cap’s having the desired effect. Part of me would be relieved if it didn’t work as it would mean I wouldn’t have to bear another session. Also, the good old Macmillan website says “Some people find that losing their hair over a prolonged period while using scalp cooling is harder to cope with than the quicker, more predictable hair loss that tends to occur without scalp cooling”. Tough as it is, I think I’ll take my chances.

If you’re doing scalp cooling during chemo, you have to rest the arm in which you’re having the injections on a heated pad to keep the vein dilated. So once chemo was over and I had another hour-and-a-half to go with the cap, I used the pad as a hot water bottle. That helped a little but it was still miserable. I was so happy to leave.

I’m clearly still traumatised almost 24 hours later. Other than that, I’m fine!