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.

Saying it like it is

From a living your life point of view, the past six weeks have been fabulous. On the cancer and related general health front, they’ve been much less so. It’s getting increasingly difficult to separate one from the other.

We went on no fewer than three trips, one by train and two by car.

We visited some beautiful parts of England. We did lots of sightseeing. With friends or on our own, we went to museums, art galleries and exhibitions. We visited various sets of friends and relatives, some of whom we hadn’t seen since just before the start of the coronavirus pandemic in March 2019 and some of whom we hadn’t seen for many years. We helped our younger son move into his third year accommodation at university in the city of Leeds in the north east of England. 

Back in London, I continued to meet up with people – current and former work colleagues, my brother and nephew who were down visiting from Scotland, and a group of women from BellaVelo, one of the two cycling clubs of which I’m still a member, despite not having cycled with either of them for a very, very long time.

As you may be able to tell, I did not do much work in June.

That’s a synopsis of what’s been happening over the past month-and-a-half in that part of my life over which I have control. Now here’s what been happening in the part over which I have little control*.

I had two blood transfusions in the space of just over five weeks, each prompted by falling haemoglobin levels.

My most recent blood tests showed a substantial rise in my tumour marker level, meaning there’s been an increase in cancer activity.

The implication of the above is that the metastatic breast cancer that’s in my bones and has infiltrated my bone marrow has not responded to the treatment I started just over two months ago. My next set of scans – a half-body combined PET CT scan and an MRI of my spine – is therefore being brought forward as we want to try to determine whether the cancer has spread.

If the scans show signs of progression – or even perhaps if they don’t but the tumour marker level is still markedly rising and my bone marrow is still struggling to produce healthy blood – I will move on to the next line of treatment. This would be my fourth treatment since I was diagnosed with advanced breast cancer just over two years ago. It would be iv chemo, with all of the associated additional and potentially lengthy treatment sessions and toxic side effects, including hair loss. I am really, really, really not ready for any of that. Also, with each new treatment you start, you can’t help but be aware that you’re one step closer to running out of options.

But let’s not pre-empt things. Who knows what the scans will show?

Back to the tribulations of the past six weeks.

I had another round of treatment-induced mouth sores. However, I’ve been totally clear of these for the past few weeks, which is a huge relief. You can read in previous posts how painful these were.

Another side effect of one of the drugs I’m on is night sweats. I’ve been having these on a regular basis, although not so much in the past week or so. When they happen, it means: 1) having to change your nightwear in the middle of the night; 2) changing the bed sheets the following morning; and 3) depending on how wet the sheets are and what time of the night it is, moving to the bed of the son who at the time was still away at uni and trying to get back to sleep. My oncologist and I agreed that for someone such as me who pretty much sailed through the menopause, this is a particular affront. I’ve had more night sweats in the past two months than I had during the whole of my menopause.

I had a slight temperature over the course of a couple of days and at one stage I feared it might jeopardise a much anticipated trip to Wales and Manchester. It was fine in the end but there was a fair amount of anxiety involved.

There’s more.

I wouldn’t go so far as to call it a nose bleed, but one morning there was blood rather than mucous on the tissue when I blew my nose.

That kind of freaked me out as you’re advised to “seek medical advice urgently” if you develop “gum/nose bleeds or unusual bruising” (see photo). I duly called the emergency number I’d been given and spoke to one of the oncology nurses.

The nurse asked me lots of questions, after which her reassuring advice was: “Monitor it and call us again if it gets worse.” Thankfully it didn’t and all was ok. So off I went to an arranged lunch date with two friends – women I’d met at antenatal classes 23 years ago but hadn’t seen for several years.

I’ve also been having dental problems – not quite pain but certainly discomfort in a couple of teeth. Tooth or gum problems ring pretty loud alarm bells in people such as me so I reported the discomfort to the cancer nurse specialists who work alongside my oncologist. An appointment was immediately made for me at the specialist dentistry department at the hospital where I’m having my cancer treatment.

I was given an extremely thorough dental examination that involved among other things tooth sensitivity testing and x-rays. Nothing of concern was found. The discomfort remains. I’m to be seen again in three months’ time, or sooner if it gets worse. In the meantime, I’ve been referred to the hygienist for a deep clean (my own words there).

Zometa (zoledronic acid), the bone strengthening drug I currently have via infusion over 15 minutes every four weeks, helps prevent skeletal related effects of the cancer such as bone fracture, pain and subsequent radiotherapy, and spinal cord compression. It’s one of a group of drugs called bisphosphonates that, unfortunately, come with a small risk of a nasty condition called osteonecrosis of the jaw, or ONJ – a rare but potentially debilitating condition in which bone tissue in the jaw is no longer covered by the gums and starts to die.

ONJ symptoms can range from very mild to severe. It can cause tooth or jaw pain and swelling in your jaw. Severe symptoms include infection in your jaw bone. You can get ONJ after dental procedures, such as extractions. The healing process after such procedures may take a long time or may not happen at all. That’s why everything possible is done to avoid the need for tooth removal in patients taking Zometa or denosumab (Xgeva), another drug used in this setting. That’s why my report of dental problems was taken so seriously.

Your risk of ONJ increases the longer you’re treated with bisphosphonates or denosumab. I’ve been on either Zometa or denosumab since my secondary diagnosis. In addition, I was on Zometa periodically for some time after my primary diagnosis as there’s some evidence that, in post-menopausal women, it can reduce the risk of breast cancer coming back.

Given all of the above, I’m taking a break from Zometa this month to see whether it makes any difference with regard to the discomfort. And I guess, in case any dental treatment were needed.

I was impressed that an appointment was found for me so quickly. However, it was on the morning of the day we were setting out on our Wales/Manchester adventure and I spent a fair amount of time worrying about whether we’d make the train. We did make it, and it was the loveliest of trips, despite my teenage goddaughter in Wales beating me at chess in an agonisingly slow game that lasted the best part of two hours. We’re evens now, but I will endeavour to rise again!

I mentioned in my last post that I had started once again to have sore feet at night, yet another side effect of one of the drugs I’m on. I suffered badly from this under my previous drug regime and while it’s not as bad as it was then, it’s no fun. Now as then, it’s exacerbated by exercise that puts pressure on the feet, such as running or long walks. Cold, wet towels to wrap round my feet in the middle of the night when the discomfort is stopping me from sleeping are once again a feature.

I’m not so bothered about running, having proved a point by completing a 5k just recently. Stopping walking or only walking for short distances, however, is not an option.

Had I not been prepared to walk on the various trips we’ve just been on, it would have meant not traipsing round and enjoying the northwestern city of Manchester for hours and hours and hours over the course of a couple of days with friends from London.

It would have meant missing out on wandering round the Yorkshire Sculpture Park, south of Leeds. This has been on my to-do list for ages and it didn’t disappoint (couple of photos here as evidence).

It would have meant not exploring the pretty village of Hathersage in the Peak District.

And it would have meant not walking round Sherwood Forest near Nottingham or visiting the small but super interesting Civil Wars Museum in Newark.

For the moment, I’ll take the sore feet. It’s a price worth paying. They’re not likely to get any better under the next treatment. Hopefully by adding painkillers and/or sleeping tablets to my arsenal, I’ll get by.

On top of all that, the wound on my lip from the horribly painful and ugly cold sores that I had earlier this month is taking forever to heal.

The cold sores appeared over a month ago, triggered by a bike ride in the sun (see photo) on the first of the three trips.

One day recently, my lip looked so awful that I almost called off a brunch date with a very, very good friend and her husband. I’m so glad we went in the end. On another occasion, the wound started bleeding when we were minutes away from the house of some old friends we were going to visit. I burst into tears from sheer frustration. We stopped the car and waited til the bleeding had stopped and I’d stopped crying before continuing.

While we’re on the subject of wounds, the one on my right calf that was healing so well opened up again, stopping me from exercising at a time when my feet were still fine. Is that ironic or just Sod’s law? The wound has almost cleared now.

Finally, my finger nails are getting ever softer and weaker and in some cases are lifting off the nail bed. As for my hair, when I find a knot and try to tease it out, sometimes a whole clump of hair comes out.

I started this latest treatment – a combination of two (non-chemo) drugs, everolimus (Afinitor) and exemestane (Aromasin), taken in tablet form, once daily – a little over two months ago. At my latest appointment with the oncologist, we agreed that I’d stay with it for a third, 30-day cycle to give it a proper chance to work. I agreed to stay on the highest dose of everolimus, despite the problems I’ve been having with mouth sores. The rationale is that we need to give the drugs the best chance of generating a response. I find it rather ironic that I’ve not had any mouth sores during this third and possibly final cycle.

So there we are, just saying it like it is.

I initially thought of having a photo of me having a blood transfusion at the hospital as the final image in this post. How much nicer, though, to use a photo of some of the beautiful roses that we are so lucky to have in our garden. Or rather had in our garden until the rain of the past few weeks came and ruined them!

Let’s see what the next few weeks bring on the health front.

What is certain is that there will be multiple trips to the hospital. Thank goodness I only live a couple of miles away. As it stands, I have six appointments for one thing or another over the next two weeks alone. The first of these was this morning, for blood tests to see how things were looking after the transfusion I had ten days ago. I had blood taken then waited for the results with the cannula in “just in case” I needed another transfusion. I didn’t.

Another certainty is my birthday, next weekend. I’ll be 58. I’m still standing.

*I also have increasingly little control over the lives of our 20 and 22 year old sons, both of whom in the past four or five weeks have had and, thankfully, have also recovered from Covid.

When a 5k run means so much more than a 5k run

The very slow 5k run I did this morning ranks among the sporting endeavours of which I am most proud. It is also almost certainly the slowest 5k I have ever run.

The idea that I might get out there and try running five kilometres began forming a week or so ago. I hadn’t done any running at all in more than two months. As a result of that and various other factors, I’d really lost my confidence. But the omens were good. 

The main thing was that the wounds I’d had on my right calf and right sole were finally healing. I had two pigmented and irregularly shaped lesions removed towards the end of April and the resulting wounds were taking longer to heal than I’d anticipated. Apart from the odd bike ride a month ago to see how the wounds would bear up – they didn’t – the only exercise I’d done since having the procedure done was walking.

Secondly, my feet were feeling better than they’d felt in many months. The side effects of capecitabine, the previous medication I was on, had worn off. The specific side effect from which I suffered is called palmar-plantar or hand-foot syndrome, where you develop sore and red palms of hands and soles of feet. The skin may also begin to peel. With me, only my feet were affected. They would hurt even when I was walking and the pain would keep me awake at night. With running, I’d get huge blood blisters even in the most comfortable and supportive running shoes.

So as I say, the omens were good.

Then, to top it all, just three days ago on Friday last week, I had a blood transfusion. The reasons for needing a transfusion are never good but I know from experience that they give you an energy boost. In my case, the metastatic breast cancer that has spread to my bones and bone marrow is preventing my body from making healthy red blood cells. My haemoglobin keeps falling, making me anaemic. This was my fourth transfusion since being diagnosed with advanced breast cancer over two years ago. The third one was only a few weeks ago. The effects of a transfusion can last for up to two weeks.

So those were the reasons making me think I should do a run. On the flip side, it’s been a really difficult few weeks on the cancer front (more on that in another post) and I’ve been struggling to deal with it all. Also, I have a cold sore that’s taking forever to heal and that is making me feel really self-conscious, not to mention lethargic and down. 

One part of me was thinking “go for it”. Another part was saying it would be no big deal if I never ran again. 

Anyway, I can’t tell you how many pep talks I had with myself before I finally put on my running shoes, left the house, and walked to where I wanted to start the run. 

I reminded myself that I will probably have to change treatment again soon. It’s a dead cert that my ability to exercise will be curtailed further once that happens.

Also, hand-foot syndrome is a potential side effect of the treatment I’m currently on and have been on for just over two months. While my feet have indeed been fine for a while, very recently the tingling and throbbing has come back at night and my sleep has been badly disturbed a few times in just this past week.

If I didn’t attempt a 5k now, when would I? The answer to that was possibly never. 

I also tried to think of what the various cycling coaches I know would say to motivate me.

I’m pretty certain that when I was in my 20s, I ran a 10k in almost the time it took me this morning to do 5k. But it really doesn’t matter. It really doesn’t. What matters is that I ran at all today.

What makes it even better is that I did the local Parkrun route. Parkrun is a 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 countries. I was a huge fan and ran my 100th Parkrun in January 2020. I managed one more before the very first lockdown began two months later. 

The route comprises three laps of Tooting Common, the green open space that starts at the bottom of our street in south west London.

I did stop once, to take a photo of a cluster of mushrooms (see above).

That probably added at least 20 seconds to my time. Anyone who’s pushing or over 58 will know how much effort and time it takes to get down into and back up from a squat!

It was hoped that Parkrun might start up again in England some time this month but it’s been postponed to the end of July. Initially I was really excited at the thought of it starting up again but now I’m not sure about running among large crowds. I wrote recently that I’d like to do at least one more Parkrun. After this morning, morally, I feel I’ve done it.

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/.

Fourth time lucky with the needle

I’m writing this sitting on the sofa feeling totally exhausted. I suspect my body is reacting to the fact that it took four – yes, four – attempts at the hospital today to find a vein into which they could inject the radioactive tracer for the PET CT scan I was to have.

We got there eventually but at one stage – I think it was during the third attempt – I started sweating and feeling queasy and I genuinely thought I might faint. I closed my eyes, rested my head in the hand that wasn’t being used for the injection, took some deep breaths and, thankfully, it passed. I felt sorry for the lovely chap doing his best to find a decent vein; he felt sorry for me, having to go through this. In the end, I had the injection through a vein in the back of my hand, the second attempt in that area.

Injection over, I then had to sit quietly for an hour while the radiotracer worked its way round my body before then spending half an hour lying on my back in the scanner with my arms stretched out behind my head, taking care to stay as still as possible for the whole time.

Scans and needles generally don’t bother me but today was taxing to say the least.

This was my first scan since starting on capecitabine oral chemotherapy at the end of May. It’s to measure how this latest treatment is working. That is, is it having the desired effect of stopping the secondary breast cancer that has spread to my bones and infiltrated my bone marrow from spreading further?

Until very recently, all the signs were positive. I’d moved from a three-week cycle comprising two consecutive weeks on chemo tablets followed by one week off to a four-week cycle of one week on followed by one week off and the same again.

My haemoglobin level was again within the normal range – albeit at the lower end – for the first time since April.

As for side effects, I was tolerating capecitabine well. I’d been feeling fine on the whole. Walking for miles, going on long bike rides, playing tennis. Also, no diarrhoea whatsoever; this can be a big problem. I’d been getting some tingling in the fingers of my left hand and my toes and the surrounding area of the soles of my feet had been feeling kind of numb – even more numb than usual (a side effect from the chemo I had as part of my treatment for primary breast cancer five years ago now, known as chemotherapy-induced peripheral neuropathy). It’s undeniably annoying and irritating but it is tolerable. There’s still no pain from the cancer itself.

Importantly, the relevant tumour marker had been falling with each cycle of capecitabine. Until this latest cycle, that is. The number is not up by much, relatively speaking, but it’s still up. I can’t deny it was a bit of a body blow when the consultant gave me that particular piece of news at my clinic appointment with her last week. “I’m never going to be stable, am I?”, I think was my response.

Capecitabine is my second line of treatment and I started cycle #6 this evening. With the first line (see previous blogs), the tumour marker kept going down until it got to a certain level – at which point it started going up again and just kept going up. We eventually moved on from that treatment when scans showed signs that the cancer had progressed. Will it be the same with capecitabine or will we manage to keep that tumour marker subdued and hope this recent rise was a one off?

I get the scan results in a couple of weeks’ time. I’ll have another round of blood tests beforehand and will get both the scan and blood test results at the same time. We’re clearly hoping for no progression but we have to be on the lookout for what might be causing that marker to rise.

I could have had the scan next week, in which case there would only be a week between having it and getting the results. For various reasons, I chose this week, even though it means a longer wait.

Pandemic restrictions permitting, we’re planning some nice adventures over the next couple of weeks but I’ll no doubt find myself increasingly thinking about what the results might be the closer we get to the date of my next appointment.

I’ve had many, many experiences with needles in recent years – to have blood taken, to enable the insertion of a cannula so I can be given iv chemotherapy or iv antibiotics or blood transfusions, or, as was the case today, to have a radiotracer injected for a PET CT scan. In all that time, there have been very few problems. Regardless, you always have some degree of concern that it won’t go well, especially when you’re aware that your veins are most likely damaged from earlier iv chemo. This is as good an opportunity as any to express my gratitude to the fabulous phlebotomists and oncology nurses at St George’s Hospital in south west London where I’m currently being treated. I know it’s their job, but the care they show and the tenderness with which they treat you make things so much easier. 

As for the results of this latest scan, what will be will be. In the meantime, let’s take each day as it comes.

Note: This is my first post since early August. A lot has happened over the past couple of months and for a while I really didn’t feel like writing. It feels good to be in the saddle again. 

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.

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.

A quick update and it’s rather a mixed bag

Let’s start with the good news. I’ve no idea what its relative importance will be longer term but I’m a glass half full kind of gal and I’m happy to enjoy it for what it is, so here goes.

After just one cycle of chemotherapy, the breast cancer tumour marker that had been rising since last November has gone down by almost a third. 

The behaviour of this CA 15-3 marker is very much only one part of the overall picture. However, the fact that it’s fallen is a clear sign that the chemo treatment that I started just three weeks ago – oral capecitabine – is dampening down at least some of the cancer activity that’s going on inside my body. The level had been rising faster in recent months and while a reduction by a third only takes it down to what it was at the end of March this year, in proportionate terms that’s a big fall. That has to be a good thing. 

IIMG_20200618_142526718f I’m not rejoicing, it’s because that’s only one part of a substantially bigger and more complicated picture. Also during this first cycle of chemo, my haemoglobin count took a huge dive. Instead of picking up my second round of capecitabine tablets on Thursday afternoon so I could start taking them the following day, I spent upwards of four hours in the day treatment unit at the local hospital having a blood transfusion.

My haemoglobin count had been falling for a few months and this was one of a combination of factors that had led to my coming off the treatment I’d been on since my initial diagnosis of advanced/secondary/metastatic breast cancer in spring last year. I had known that if the level were to fall much more, a blood transfusion would probably be in order. That’s precisely what happened.

Coincidentally, it was almost a year ago to the day that I had a transfusion for precisely the same reason. Then, I was really taken aback when the consultant told me what she was advising. I had only recently had the diagnosis confirmed and being told I needed a blood transfusion really brought home to me the seriousness of what was happening. This time round it couldn’t have been more different. It wasn’t quite “hey, ho, let’s go“, but there was no drama, just an appreciation of the effort that’s going into keeping me as well as possible and a ready acceptance on my part that developments such as these are now part of my reality. 

There are two aspects to my disease. The cancer is in my bones, weakening them as it tries to spread further. It has also infiltrated my bone marrow, reducing my body’s ability to make healthy blood. Both aspects need to be managed, along with the side effects of the drugs. That’s what I mean about the fall in the tumour marker only being one part of the overall picture.

The bone marrow issue is a pretty big part of that same picture. Even if my haemoglobin count had been healthier, I wouldn’t have started round two of chemo. That’s because my neutrophil count too was below the level that’s deemed safe to carry on with treatment. Neutrophils are the white blood cells that fight infection.

The fact that capecitabine can also cause anaemia and neutropenia is an additional complication. It’s hard to determine precisely how much of what’s happening on the blood front is caused by the cancer and how much is down to the treatment.

As well as having the transfusion, I had an injection of the white blood cell booster, filgrastim. I’d been used to having this as standard under my previous treatment but we’d gone without during this first cycle so we could see how I’d manage on the neutrophil front under the new treatment without support. Not brilliantly, it seems.

So what’s next?

Well, for starters I get to enjoy the extra energy that comes from having two bags of healthy blood coursing round my body.IMG_20200618_155048864 There’s no denying I’m feeling perkier than I felt last week. There is, literally, more “blood in my cheeks” – a saying I’d never really thought much about until now.

On a more serious point, I go back for more blood tests on Monday to see how things are looking and we’ll see what the consultant recommends when I see her on Tuesday. 

Hopefully I’ll be able to go back on treatment. None of this is abnormal in the context in which it is happening. As with many powerful drugs, it can take some time to find the right dosage of capecitabine. I guess there might at least be a discussion around that. As it was, my starting dose was 85% of what it might have been.

As for side effects that I’d notice, I’m relieved to report that I’ve nothing to report. I have been aware of a little bit more tingling in my feet than usual but I can’t at this stage say that it’s anything other than the mild chemotherapy-induced peripheral neuropathy I have from the original treatment I had for primary breast cancer in 2015. It can get worse in the heat and when I’ve been doing a lot of cycling. The weather’s been great and I have indeed been cycling a fair amount.

Talking of cycling, I’m planning on putting this transfusion to good use in much the same way as I did with the last one. It’s midsummer weekend and a long bike ride is on the agenda for tomorrow. When I’m out there, I’ll be even more appreciative than usual that I’m very much still in the saddle.