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.