Starting iv chemo and celebrating a special 21st birthday

A lot has happened since my previous post on 7 August.

The bottom line health-wise is that I have moved onto a new line of treatment, intravenous chemotherapy involving a drug called paclitaxel. I had my first treatment session on 23 August and my second session yesterday.

Life-wise, our younger son has turned 21 and it has been a real joy to be able to celebrate this milestone.

We thought I might be catching a bit of a break on the cancer front. However, blood test results from a few weeks ago showed that, overall, things really weren’t going well in terms of my bone marrow function. In addition, the important CA 15-3 tumour marker had gone up again, meaning the cancer was more active than it had been recently.

The situation was complicated but the consultant concluded that it was time to come off the treatment I’d been on for almost four months – a combination of two drugs called everolimus (Afinitor) and exemestane (Aromasin), taken once daily in tablet form – and move on to the next line of treatment, iv paclitaxel.

I knew it was coming and I understand the rationale for changing. We really need to get a grip on the bone marrow issue and we can’t ignore potential tumour progression. However, I’d hoped it might not happen for another few months. We’d discussed the matter at length and the consultant knew how keen I was to hold off iv chemo for as long as possible.

There were various reasons for this.

One reason is that I’m now tied much more to the hospital. I’m on a 28-day treatment cycle, with treatment sessions on Day 1, Day 8 and Day 15. Each session takes about two hours. You also need to have blood tests done before each of the three sessions of each cycle, etc, etc, etc.

Another reason is that I know this drug. I had it as part of my treatment for primary breast cancer way back in Autumn 2015. It had a very good effect on my cancer then and we obviously hope it will this time too. However, it is also responsible for the “chemotherapy induced peripheral neuropathy” – essentially nerve damage – that I have in my feet that even now can stop me from sleeping. During the day it’s not so bad, but it is there. We’ll keep a very close look-out while I’m on paclitaxel now for signs of additional damage. It would be too bad if the treatment worked well but again brought with it this distressing and, it has to said, potentially debilitating side effect.

Then there are all the other common side effects, including likely hair loss. I didn’t like losing my hair last time. If I lose it this time, I don’t think I’ll like it any better.

All in all, I think I can be forgiven for feeling rather nervous about starting this particular treatment again.

Despite my concerns, though, now that I have started treatment, I’m desperate for it to work and for me to stay the course. It’s not as if the previous regime I was on was a breeze. In fact, at times it was hideous, but you put up with a lot when you know there are limited options ahead of you, each potentially more toxic than the previous one.

Discussing it all with the consultant on 11 August, any hopes I had that my husband, two young adult sons and I might fly off to Spain in late August/early September went flying out the window. Following right behind were plans for a trip to my home city of Glasgow that I’d hoped to take before going to Spain. Other trips were and are – as of today, at least – still planned, potentially for later in September and certainly for October.

I’ve had dozens and dozens of appointments with doctors since my diagnosis of primary breast cancer in the summer of 2015. I’ve cried at only a few. This was one of those. It felt like we were definitely moving into new territory and I was feeling very sorry for myself.

The transition to chemo and the weeks preceding the move have been really quite traumatic. This may not be a complete list but they have involved tiredness and extreme fatigue, a lack of appetite, dry mouth, insatiable thirst, being tested for diabetes, sore feet, badly disturbed nights, joint pain that I’ve been told is not related to the bone mets, dental discomfort, a 2am trip to A&E with a high temperature and suspected serious infection (nothing was found), a couple of blood transfusions – and me feeling very, very low and dejected.

This is the fourth line of treatment that I’ve been on since I was diagnosed in April 2019 with secondary – incurable but treatable – breast cancer. When I was diagnosed, it had spread to my bones, with “bone marrow involvement”, meaning it was impairing the ability of my body to make healthy blood.

More than well over two years on, the various drugs I’ve been on have managed to keep the cancer from spreading outside of my bones and into, say, my liver, or my lungs, or my brain. I would say I have been largely healthy, despite experiencing some quite nasty side effects and, of course, despite having the illness in the first place. However, the real and serious problem at present is bone marrow suppression. We know the cancer itself is causing at least some of this but it doesn’t help that the treatments themselves can also cause your haemoglobin and neutrophils to fall. For those of you who are interested in the detail, my platelets are also not in a great way – that’s a new development and a new concern.

The plan initially is to have four 28-day cycles of iv paclitaxel, assuming it works and I cope with the toxicity. The number of cycles could be increased to six if things go exceedingly well. I’m not second-guessing anything. I’ve already had to have a one-unit blood transfusion and several neutrophil boosting injections between the first and second sessions.

Let’s hope things settle down, that I’m not afflicted with additional peripheral neuropathy, and that I can make the most of the two-week breaks between cycles.

I’m to have blood tests tomorrow before seeing the consultant for a mid-cycle debrief. They’ll take an additional vial of blood for a “cross-match”. This is when they test a patient’s blood against a donor’s blood to check that the two are fully compatible. This happens regularly now when I have my regular blood tests done, “just in case” I need a transfusion. I’m getting used to it.

I think I’ll need yet another set of bloods done the day before my third treatment session of this first cycle, which is scheduled for 7 September.

To say it’s been a tough few weeks – physically and emotionally – would be a huge understatement. Through it all, ordinary life goes on. Today, for example, I’ve felt great. I wrote this blog and this evening I went out on a three-mile walk. Earlier on, I had a nice chat on the phone with one of my brothers. Yesterday, between having bloods done in the morning and my chemo session late afternoon, I did a few hours’ work. I’ve been taking a bit of a break from work recently.

I’d been feeling so wretched that I hadn’t been meeting up so much with friends. You feel less like making plans to socialise in case you have to cancel at the last minute. A couple of weeks ago, my husband and I feared we’d have to pull out of at really short notice a lunch date in central London with friends we hadn’t seen since last summer. We’d really been looking forward to it. I’m so glad we made it – not just for the company, which as always was excellent, but to experience the zaniness of the place we had lunch. The photo is of Cath and me, somewhat over-excited in the sci-fi toilets; each pod is an individual loo!

Some days, I really haven’t felt like getting out of bed – especially when I’ve slept particularly badly that night. I do, though, one always feels better for it. On those days, even picking up the phone when someone calls to chat can be a real challenge. Friends and family know the situation well enough not to be offended.

It can’t be easy for my husband but, throughout this whole thing, he has continued to be an absolute rock.

Among all the turmoil, our younger son turned 21 – a real highlight and milestone for any family. Family-wise we did a couple of low-key things – not on the day itself as he was off in Cornwall with friends. After the year many young people have had, we loved thinking of him mucking about in the sea and on the beach and enjoying big wide open spaces on the very day of his 21st. We have no doubt whatsoever that he was feeling the parental love and affection from a distance.

I think I deserve a medal for the most quickly and imaginatively cobbled together birthday cake – a slice of malt loaf with a candle on top! A few of our son’s friends popped round one evening soon after his birthday for drinks before heading out to a party. I decided they should sing happy birthday to him. They duly obliged. You can’t say I don’t make an effort!

Making my peace with Parkrun


I wanted do one final Parkrun after lockdown ended.

In the end I did two and, with a grand total of 103 runs under my belt, I’m now bowing out.

These popular, volunteer-led 5k running events used to take place every Saturday morning in hundreds of parks across the UK. By the time they stopped with the first lockdown, in March 2020, I’d done 101 runs – a considerable achievement, it has to be said, considering I did most of them after I finished treatment for primary breast cancer in February 2016 and a dozen or so after I was diagnosed with secondary, incurable breast cancer in April 2019.

I didn’t run for a good few months after my secondary diagnosis. Indeed at one stage, I genuinely thought my running days were over. Thankfully they weren’t.

The cancer is in my bones and the fact that it has also “infiltrated” my bone marrow means I’ve been anaemic essentially since my secondary diagnosis. The ongoing inability of my bone marrow to make enough haemoglobin to transport sufficient amounts of oxygen around my body is a major challenge.

I’d really just started doing Parkruns regularly again when the pandemic hit. My stamina and strength massively reduced over the 16 months of lockdown. I kept running on and off, despite the anaemia and despite the fact that I had problems with my feet – caused by the medication I was on and made considerably worse by running.

Anyway, Parkrun finally started up in England again a couple of Saturdays ago. By pure chance, one of my brothers and his son were visiting us in London at the time. We all egged each other on – in a nice way – and decided we’d all go for it. This, I said, would be my last. It would be good to have some support.

It was a two-lap course. I started at the very back of the pack, assuming I’d be running very, very slowly compared to many if not all of the other runners. Also, I’d decided that being at the back would be safer from a coronavirus point of view. Given I’m on active treatment for advanced breast cancer and immunocompromised, I’m categorised as clinically extremely vulnerable. Very soon after lockdown began, I decided to stop shielding – ie staying at home and not going out other than when absolutely necessary – in favour of being careful when I was out. No point in being reckless now, I thought. I sought advice from a doctor friend and she agreed the risk was low.

Off we went. I jogged around ten steps then realised I couldn’t jog a step more. My legs felt so heavy. They just wouldn’t move. No matter what my head was telling my body, that clearly was not going to change. It was all a bit strange, as several weeks earlier I’d done a run of the same distance – slowly, but problem free.

I started walking and after a few minutes tried jogging again. No change; a few metres at a time was all I could manage. My head was all over the place. This was my final Parkrun and it was turning out to be a huge disappointment. I genuinely thought of giving up there and then. Then I thought how daft that would be, given that all I’d be doing instead was cheering on my brother and nephew and all the other runners. I then gave some consideration as to what Parkrun’s about – it’s about participation, community, effort and overcoming adversity. Parkrun has changed the lives of thousands of people for the better and taking part has been such a privilege. For many, just walking the course is a huge achievement. Dropping out would be such a negative way to finish my Parkrun “journey”, I thought. I checked with the “tailwalker” – the person who brings up the rear and makes sure no-one comes last – to see if he would be ok with me walking most of the route. He said that was more than ok. It turns out his wife was Scottish and we spent a fair part of the course talking about Parkruns in Scotland.

I duly finished the course. In a pack of more than 450, other than for the tailwalker, I came last. I jogged the final few metres – because how could I not? My husband, brother, nephew and a few enthusiastic Parkrun officials/volunteers cheered me over the finish line. It wasn’t a disappointment at all. In fact, it all felt great.

102 Parkruns and out – or so I thought.

Then something happened a few days later that made me want to try again. I had blood tests done, and it turns out my haemoglobin level was almost as low as it had ever been since I was diagnosed in Spring 2019. It was pretty darn low. That went a long way towards explaining why I could hardly put one foot in front of the other the previous Saturday. The day after I got the test results, I had yet another red blood cell transfusion – my third since late June. Two days later I ran what I’m pretty sure will be my final Parkrun as a participant. I’m ok with that; I now feel I’ve made my peace with this wonderful initiative.

A blood transfusion doesn’t fix everything. It gives you a very welcome temporary energy boost but it does not make you superwoman, or indeed get you remotely close to the level you were at before your diagnosis. Even after this latest transfusion, my haemoglobin level is still only at two thirds of what it was pre-diagnosis. I was wiped out after the run, my hips and my knees hurt and I basically spent the best part of the rest of the weekend on the sofa. I even went for a nap on Saturday afternoon. To be honest, I would probably have stayed in bed had I not been going to see Chrissie Hynde – yes, that Chrissie Hynde! – in concert that night at the Royal Opera House in central London. The following day I still felt shattered and I cancelled a lunch date in town, which is most unlike me.

However slowly I ran, it was worth doing this final run for reasons of personal satisfaction. It was also fitting that it was at my home course of Tooting Common, where I’ve done the vast majority of my runs (the previous week’s run was at a nearby Clapham Common). I’m not sure I want to spend whole weekends in recovery mode, though, so it’s 103 and out. In future I’ll be helping out as a volunteer, which I’ll be more than happy to do.

I have my next set of blood tests next week. We’ll find out how my haemoglobin is bearing up two weeks post-transfusion and we’ll be looking closely to see what action there has been on the tumour marker front. At the end of my third monthly treatment cycle almost a month ago now, the marker had, to our pleasant surprise, unexpectedly fallen slightly when the trend over the first two months of treatment had been upwards.

The other procedure I’m having that could help on the haemoglobin front hasn’t yet had an impact. It can take a while to work, so we still have a few weeks to go with that.

The seemingly never-healing cold sore wound on my lip has almost gone. Hurrah! I have had this wound on my lip for two whole months now. Two whole months. Also on the positive side, the medication-induced ulcer that started developing on my tongue a week or so ago went away as quickly as it came. I nearly cried when I first felt it. Just as I get rid of the cold sore wound, I thought despairingly, a tongue ulcer comes to replace it. If you’ve never had one of these, count yourself very, very lucky.

Here’s nice story to finish. I told our sons a while back that I’ll lose my hair as and when I move on to my next treatment – intravenous chemo. I didn’t want it to come as a surprise to them when it happened. My hair at that point was the longest it had been in years. I mentioned to the younger son a week or so ago that I was thinking of getting it cut. He himself is a redhead and has a beautiful thick mane that reaches half way down his back. Without hesitation, he says, “Nah, mum, use it ‘til you lose it”. I compromised with a trim! 

A welcome surprise and another lesson in unpredictability

Well, well, well. Not only did the PET CT scan I had a couple of weeks ago show no disease progression, my tumour marker level has fallen twice in a row over the past several weeks. The ongoing inability of my bone marrow to make enough haemoglobin to transport sufficient amounts of oxygen around my body continues to be a major challenge but there’s no doubting this is welcome news.

It was not expected. For me, it’s yet another lesson in how unpredictable this whole thing is.

I was more or less resigned to the breast cancer that has spread to my bones and “infiltrated” my bone marrow having spread further. This would have meant my moving on to intravenous chemotherapy. Instead, I am staying on my current medication – a combination of two (non-chemo) drugs, everolimus (Afinitor) and exemestane (Aromasin). This will be my fourth monthly cycle on these two drugs, which are taken in tablet form, once daily.

I know that iv chemo is an inevitability and I have to accept that. However, I’d be lying if I said the thought of it doesn’t scare me, with all of the associated additional and potentially lengthy treatment sessions and toxic side effects, including hair loss. Thus my relief at having dodged this particular bullet – for however long it may be.

Let’s stay with the good news. Not only was there no progression, there was, in the words of my consultant oncologist, “a hint towards better” in that the disease in my spine and pelvis showed up as less bright on the PET scan than it has done on previous occasions. The brighter an area is on a PET scan, the more active the cancer is in that area.

As for the tumour marker, this had shot up considerably towards the end of the second treatment cycle, suggesting there had been an increase in cancer activity. Now, going by the latest test results, it is back at almost exactly the level it was at when I started this current treatment three months ago.

On now to the issue of my bone marrow and the fact that the cancer is impairing its ability to make healthy blood – most critically at this stage healthy red blood cells, which contain the haemoglobin that transports oxygen around the body.

On the haemoglobin front, I’ve essentially been anaemic to one degree or another since my diagnosis in the spring of 2019, well over two years ago now. Up until now we’ve intervened with transfusions of red blood cells when it has fallen to a level that’s considered too low. I now generally know myself when it’s falling as I get breathless doing the simplest of things such as climbing stairs. That’s pretty much the current state of affairs.

Yesterday, for example, I went to Tooting Bec lido* for the first time since last summer. It’s baking hot in London at the moment so this is a great place to be. I swam four widths (the pool is 33 yards wide), breast stroke, after which I thought my heart was going to burst out of my chest it was beating so hard! That said, it was fabulous to be there and I was fine after a rest.

The problem with blood transfusions is that you can only have so many before you get iron overload, a serious condition that can damage major organs such as the heart, liver and pancreas. We’re not close to that stage yet but it wouldn’t take long to get there if I were to continue to have transfusions as regularly as I’ve had them recently. Earlier this summer, I had two within less than six weeks of each other. We’re now therefore looking at ways of tackling the problem that don’t involve transfusions. I hope they work.

My tumour marker and haemoglobin levels will be monitored even more closely than usual over these coming weeks. The results of the other scan I had – an MRI of my spine – have still to come through. I should get those next week. 

I can also report that a good few of the drug side effects and/or other physical ailments that were making me so miserable on a physical – and emotional – level have subsided.

I’ve continued to stay to clear of the painful and spirit-sapping mouth and tongue sores that I had on and off during the first and second cycles. That sentence really does not do justice to how awful these sores are. 

The massive cold sore wound on my bottom lip that wasn’t healing and that’s been plaguing me for around six weeks seems to have a mind of its own. One day it seems almost to have gone but then it’s a bloody mess again the next. I’m not swearing here, it really is sometimes a bloody mess. However, it does seems to be going in the right direction, albeit very, very slowly. Also, the wounds from the two pigmented skin lesions that I had removed from the sole of my right foot and my right calf nearly three months ago have now completely healed. These two things combined allowed me to go to the lido yesterday, although I did keep my face out of the water to be on the safe side.

The night sweats have been much less frequent but are still pretty nasty when they do happen. 

The discomfort that I’d been feeling in some teeth has gone – at least for the moment. I have a session with the dental hygienist at the hospital next week, by which time I really hope the cold sore wound has fully cleared up.

The sore feet at night can be a bit of a nightmare, especially if I’ve been out on a long walk during the day. My plan to take sleeping tablets more regularly so as to basically knock myself out hasn’t worked as planned. You can’t take alcohol with sleeping tablets and at 7pm when I fancy a cold beer or glass of cold white wine (or both!), bedtime seems a long way off. The alcohol usually wins!

I’ve had some new joint pain, but I can’t tell whether this is cancer- or age-related. The pain either eases on its own or I take painkillers. 

My 58th birthday has come and gone.

There was so much going on and so much uncertainty on various levels in the weeks running up to the day that I had been veering from thinking I wanted to see as many people as possible to feeling that I just wanted to hide under the duvet all day.

In the end, I had a lovely time, with celebrations and events with friends and family spread over the best part of a week, or indeed longer.

On the day itself, we kept things low key, with a little but perfectly formed extended family group. The rain stayed off and the cake tasted as delicious as it looks in the photo.

Over the course of a few days, there were multiple deliveries of, among other things, cakes, pastries, chocolates and flowers – lots of flowers!

There was a trip to the Wimbledon tennis championships, with Dave, my friend and partner in seizing the day. I have incurable breast cancer; Dave is five years younger than me and has Parkinson’s disease.

My husband and I went to the Hampton Court Palace Garden Festival one evening. Friends treated us to supper at the smartest restaurant in our local area. Some very good friends visited and stayed over one evening. We had a very relaxing night away with our 22- and 20-year-old sons.

I also went to a gig at London’s Jazz Cafe on July 11th, the day after my birthday. This was the night of the European football championships final in which England – the “auld enemy” of my country of birth – were playing. I’d booked this evening out a while ago as a birthday treat for my husband, our sons and me. However, when it became clear that England was going to be in the finals, I started looking round for replacement company – friends who, like me, didn’t mind whether they watched the match or not. An Australian friend and a Dutch friend answered the call and we had a lovely evening – unlike the people watching the match, given the sad ending for England! I’m only sorry that one of the two friends had to self-isolating afterwards as she was “pinged” to say she’d been in close contact that evening with someone who later tested positive for COVID-19.

Suffice to say I have felt very loved over these past couple of weeks. The cutest and perhaps best birthday present of all was a promise (see photo) from our sons to become blood donors. I understand they were all set to donate before my birthday but they both contracted Covid and had to postpone it. I’m quite hardline on this in that I see giving blood as one’s civic duty but I have to concede there was a certain amount of persuasion and emotional blackmail involved here!

Back to my medical situation.

The bone marrow impairment is of course a big concern but one has to be grateful for the other, more positive news. I am delighted to have received this unexpected surprise. Nonetheless, it seems appropriate to end this post with a phrase that I’ve used many times before: let’s just see how things go.  

*At 100 yards long and 33 yards wide, Tooting Bec Lido in southwest London is the largest freshwater swimming pool by surface area in the United Kingdom. It holds a million gallons of water and is just a 15-minute walk from where we live.

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/.

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.

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.

 

Back on treatment, feeling mellow

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

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

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

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

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

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

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

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

So what does good feet hygiene entail?

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

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

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

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

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

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

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

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

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

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

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