Choosing to go bald

I’m bald, for the second time in my adult life.

The first time I lost my hair was in mid 2015/early 2016. That was as a result of the intravenous chemotherapy I received as part of my treatment for primary breast cancer. My hair grew back within a few months of finishing chemo. 

Then in Spring 2019, I was diagnosed with secondary breast cancer. The original cancer had spread and was in my bones and bone marrow. Almost three years into treatment for that, I’m once again on iv chemo and once again I have no hair.

This time, I feel much less of a need to wear a wig. In fact, I actively dislike wearing the one I’ve got. I’ve worn it just a handful of times since I shaved my head just before Christmas. I now much prefer wearing either some other kind of head covering – regular beanie hats or headwear specifically designed for people with chemo-related hair loss – or indeed going bare-headed. I wasn’t expecting to feel this way and I’ve been thinking about why I do.

Lots of women who lose their hair and choose to wear a wig during primary breast cancer treatment give their wig away once they finish treatment and their hair grows back. I didn’t. I just couldn’t. I always knew I was at high risk of recurrence and I always thought I might need my wig again. I wasn’t wrong.

So the wig I have now is the same one I wore during my original treatment. 

I remember how, initially, I hated wearing it. Once I’d got used to it, though, I loved how it allowed me to disguise the fact I had cancer. It felt empowering. I went bare-headed in the house among family but never in public and only very, very rarely among friends.

Now the wig feels heavy on my head. It’s uncomfortable. Also, unlike the last time, it’s nowhere near the colour my hair was before I shaved it off. It feels much less “me” than it did before. Fundamentally, I think it’s because I feel much less of a need to disguise the fact that I have cancer. The first time round it was temporary; my cancer was being treated “with curative intent”. Now, it’s permanent and treatment is palliative, aimed at stopping or slowing the cancer from spreading, maintaining as high a quality of life for me for as long as possible and alleviating symptoms. Thankfully I’m currently feeling really well. Indeed while there have been some quite difficult periods, I’ve been well for much of time I’ve been undergoing treatment. 

It’s worth noting that this time I chose to shave my head. I could have lived with my hair as it was but I’d had enough. It had become terribly thin after two rounds of eribulin, the iv chemo I’m currently on. Clumps would come out when I brushed it or when I ran my hands through it. It wasn’t falling out on its own, though, and I could have got a haircut – I’d already had one not long before – that would have disguised quite how thin it was. With primary treatment, so much of it was falling out that I really had little choice but to shave the rest of it off when I did. It then never grew during all the time I was on chemo and for a month or so afterwards. This time, it hasn’t stopped growing; I’ve had to buy a head shaver, which I use perhaps once or twice a week. The question for me at some point will be when to stop shaving and let it grow out.

I generally feel a sense of liberation when I take off whatever head covering I’ve been wearing. I like the fact that I have the courage to, as I see it, be myself. It’s not always easy. If it’s a new situation, I’ll be nervous beforehand. I always consider the impact it’ll have on my “audience”, as the last thing I want to do is make people feel uncomfortable. Some well-meaning friends have said I shouldn’t care what other people think but I can’t help it.

It’s much easier when I’m among strangers or am outdoors. By choice I’ve gone bald when I’ve been out walking, whether on my own or with friends. I’ve been bare-headed at the cinema, at the theatre, on the tube or just walking down the street.

Les Gets, French Alps

We’re lucky enough to have been skiing in France – during the 12-day break I had from hospital that I wrote about here – and I’d sometimes go bald when we stopped for coffee or hot chocolate. And cake.

It felt fabulous having the sunshine and fresh mountain air on my head – although I soon had to put a hat on against the cold! 

Heated outdoor pool at Hampton, southwest London

I’ve started swimming again, where I have little choice in the matter. Also, I had a lovely session at a spa last weekend with my two London-based nieces – again, it was go bald or don’t go at all and miss out on quality time with two of my favourite people.

Even with headwear on, it’s obvious I’m bald underneath. However, I haven’t yet felt able to bare all in the pub, on video calls with work colleagues, or, perhaps ironically, at hospital appointments, whether with the consultant or at the treatment unit. With the last of these, I guess on some level I worry that I’d upset people who have just started chemo and know they are going to lose their hair. 

If I’m due to meet friends who’ve not seen me bald before, I’ll let them know in advance that I won’t be wearing any head covering when I see them or that I’m likely to take it off at some point. On a couple of occasions, I’ve asked people if they’d mind if I took off my hat. They’ve always said without hesitation to go ahead.

Sometimes you completely forget just how different you look. You only remember when you realise someone has seen you and done a double take or is smiling kindly at you for what you initially thought was for no obvious reason.

I do think it’s good to normalise cancer. That was part of the reason I started this blog all those years ago. It’s surely a positive thing for people to see individuals who clearly have cancer doing “normal” things. Our situation might be grim, but we’re out there like millions of others with or without disabilities, obvious or not – doing the shopping, working, in the pub drinking beer and laughing with friends, on the tube, walking the dog, swimming, or just sitting on a bench resting. Essentially just being.

I’m not evangelical about it. Everyone should tackle their personal situation in the way that works best for them. For now at least, this way works for me. 

Notching up Cycle 3 of my latest chemo

Last week I went ahead with the first session of the third cycle of the iv chemo that I’m on. This afternoon I had a blood transfusion that will enable me to go ahead later this week with the second of the two sessions that make up the cycle.

Things are far from perfect on the blood front – thus today’s blood transfusion, for example – but they’re not disastrous. I’m just relieved to be notching up another cycle of the chemo that I started at the beginning of December.

The fact that I’ve only been on this chemo – eribulin – for a month-and-a-half means it’s still early days in terms of knowing whether it will be successful in keeping in check for a decent length of time the metastatic breast cancer for which I’ve been having treatment since late Spring 2019.

That said, there is another thing about which to feel relieved – indeed perhaps encouraged. My tumour marker, which in my case is a good indicator of cancer activity, has fallen again. While we don’t have bang up-to-date results, the test done early in Cycle 2 showed that it’s the lowest it’s been since I was first diagnosed. It’s not everything, but it is a very important part of the overall picture. Things can change very quickly, but falling levels at any time are clearly far better than rising levels.

Eribulin, also known as Halaven, is the fifth treatment I’ve been on. The previous four worked for varying lengths of time before my cancer outwitted them and spread a little more each time. The last treatment – paclitaxel, also iv chemo – only worked for a few months so it’s understandable I’m nervous about how I’ll fare on this latest one.

The cancer is in my bone marrow among other places and is preventing my body from making healthy blood, particularly red blood cells. Blood transfusions* – to increase my haemoglobin level – have become a way of life. I’ve been having them almost monthly since May last year. However, on the past two occasions, ie since starting on eribulin, I’ve needed one unit rather than two. In my world, where not bad news pretty much equates to good news, that’s a positive.

Any side-effects I had from eribulin over the first two cycles have subsided or are under control and I’m feeling really well. Each cycle lasts 21 days. Treatment sessions are on Day 1 and Day 8. My Day 8 session of Cycle 3 is on Wednesday this week. Barring any mishaps, there will then be a full 12-day gap before my next hospital appointment, which will be for blood tests towards Day 21 of this cycle. Then the whole thing starts again, beginning with an appointment with the consultant where you find out whether you need another transfusion, whether your tumour marker has gone up or down, whether things are looking good or whether there are signs of trouble and, ultimately, whether you will – as you fervently hope – go ahead with the next cycle.

I’ve been at the hospital twice almost every week since starting on eribulin. I’ll accept whatever it takes to keep me well, but sometimes it can feel pretty relentless. I’m really looking forward to the break. 

*Our two boys promised me as a birthday present last July that they would both become blood donors. Covid jabs, Covid infections, colds and other assorted obstacles got in the way but the older one (23) is indeed now a donor. I’m delighted. The younger one (21) almost made it but found out on the day he was due to donate that he’d have to wait another two months as he’d recently had his ear pierced. He’ll get there.

My festive A to Z (chemo side effects included)

I’m very close to the end of my second 21-day cycle of eribulin, the iv chemo I moved on to at the beginning of December as part of the latest pharmacological effort to stop my metastatic breast cancer from spreading further around my body. 

There have been side effects but they’ve been tolerable. Physically, on the whole, I’ve been feeling more than fine. Emotionally, too, I’ve been feeling stronger. I’ve largely put behind me the disappointment of the PET CT scan that showed that my cancer had outwitted paclitaxel, the chemo I was on before I switched to eribulin. 

I look back over the past six weeks and, despite multiple trips to hospital for treatment sessions and associated blood tests and/or blood transfusions, cancer has definitely not been front and centre.

There has, of course, been Christmas. With the Omicron variant of the coronavirus rampaging around the country, there were very few of us whose plans for the holiday period were not disrupted at least to some extent. Thankfully, we escaped pretty much unscathed, disappointing as it was to cancel several social engagements we’d really been looking forward to.

Christmas is a time for lists, whether you’re writing to Santa or shopping for presents or for the food for Christmas dinner.

Here’s another list of sorts that you may be interested in. It’s my festive A to Z!

A

Appetite. This was all over the place during the first cycle of eribulin. Some days I had no appetite. Other days I had a huge appetite. On yet other days I wanted to eat but my mouth was so dry that I found it hard to swallow. Things are much more stable now.

B

Beef Wellington. For the third Boxing Day in a row, our two boys made Beef Wellington for dinner. The shape may not have been perfect this year but it was just as good as the previous two offerings! What an absolute treat.

Blood tests. I had my latest round of tests this morning. I’ll get the results on Wednesday when I see the consultant. All going well, I’ll start Cycle 3 of eribulin later the same day.

C

Chemo. Each 21-day cycle of eribulin – also known as Halaven – comprises two treatment sessions. These take place on Day 1 and Day 8 of the cycle, with blood tests done one or two days before each session to check to see whether it’s ok to go ahead with the next one.

Christmas Day. An extremely pleasant relaxing and relaxed day that involved for my husband and me a walk across Tooting Common, a pint in a local pub followed by drinks at a friends’ house across the road, then, later at home with the boys, a delicious traditional Christmas dinner, board games and a film.

D

Dry. We did think that we might do “Dry January”, where you go the whole of the month without drinking any alcohol. It didn’t take us long to decide life was too short for such sacrifices so we’ve decided instead to cut down. Perhaps “damp” rather than ”dry” would be more appropriate for this entry!

E

Exhibitions. My husband and I have been taking advantage of the fact that central London is very quiet to visit a few of the exhibitions that are on at the city’s museums and art galleries. It’s been fun.

F

Fatigue. I’ve experienced this in its extreme form where you feel like you’re walking through treacle and you really just have to stop and, ideally, sit or lie down. I’ve also experienced bog-standard fatigue, mild fatigue, and no fatigue at all. It’s fair to say chemo takes it out of you.

G

Gin. Sloe gin made by a friend or gin from Tiree, the tiny Hebridean island where we spent a week in October. I’m not fussy.

H

Hair. Ongoing thinning and loss of head and body hair.

Head. Shaving thereof.

Haemoglobin. The cancer is in my bone marrow among other places, affecting my body’s ability to make healthy blood. It particularly affects my red blood cells. My haemoglobin level is constantly low. If it goes below a certain level, I can’t have chemo. During both of these first two cycles of eribulin, I’ve had to go to hospital on or around Day 15 for blood tests to have it checked. I had one unit of blood transfused during the first cycle but I haven’t needed one during the second cycle. That is good. 

Heartburn. A side effect of eribulin. Painful, not pleasant.

I

Indecision. I’ve spent hours looking at flights to various places but haven’t yet taken the plunge and booked to go a somewhere. Watch this space.

J

Jelly. Yes, jelly, that weirdly coloured gooey stuff you should really only eat at children’s birthday parties. It was a godsend on days during my first chemo cycle when I had no appetite and/or a dry mouth. 

K

Kleenex. Nose hair is one of those things most people (or at least most women) don’t realise they have. However, you notice when you don’t have it (see above under ”Hair”) as you have a runny nose much more frequently than you used to. You therefore need plenty of tissues – not necessarily Kleenex but it was the best I could think of for the letter ”K”!

L

Lateral flow tests. I’ve lost count of how many I’ve done. Thankfully, they’ve all been negative.

M

Metoclopramide. This is an anti-nausea drug I take to stop me feeling sick after I’ve eaten. I’ve more or less got this under control now. 

Metal. Some food tastes metallic in the days following chemo, after which it goes back to normal.

N

Nata. As in “pasteis de nata”, those delicious little Portuguese egg custard tarts. A good friend made a surprise delivery of a box of four. Yum!

O

Optician’s. I stepped on my glasses and broke them. I don’t have a spare pair (thank goodness I also have contact lenses). An appointment has been made at the optician’s for an eye test and to buy a new pair of specs.

P

Priority PCR test. I’ve been sent one of these as part of a government initiative to ensure that clinically extremely vulnerable (CEV) individuals such as myself, should we catch Covid, get timely access to one of the new drugs that are now available for treating the illness.

Pubs. There have been plenty of visits to the pub. Again, we’ve taken advantage of the fact things have been quiet.

Q

The Queen’s Speech on Christmas Day. We somehow missed this!

R

Roast potatoes. You can never have too many of these with your Christmas dinner!

Rummikub. We played a few rounds of this on Christmas Day. 

S 

Steroids. I take these for two days after each chemo session, to help prevent nausea. I have a huge appetite for two days and, once I start talking, it’s hard to stop.

Swimming. I managed a couple of sessions in early December, before the start of the massive surge in Covid cases. It may be time to start thinking about going again.

T 

Tumour marker. In my case, my tumour marker is a good measure of how active my cancer is. The marker level went down during the first cycle. I’ll find out on Wednesday what it’s done in Cycle 2. Fingers crossed that it’s stayed where it is or has gone down further.

Tennis. I still can’t quite believe that I have been back on the courts. This disease saps your confidence and I’d convinced myself that, with my haemoglobin level being so low, I wouldn’t have the energy to play. In the end I played for around 40 minutes, with a fabulous bunch of women from the tennis club of which I’m still a member. I hadn’t played for many, many months and I absolutely loved it.

Theatre. A friend very generously invited me to the theatre in the run-up to Christmas. That too was a lovely treat.

U 

University. Both our sons came home from uni for the Christmas holidays. As always, it was/is great to have them around. The older one has gone back; the younger one is still with us. Both are in the middle of final year exams. These are still being done online. By the time they finish, they will have had less than six months of “normal” university – from a three-year degree.

V

Vaccines. I’ve now had my booster jab, bringing to four the number I’ve had overall. CEV individuals were offered three jabs as part of the primary vaccination programme and then also a booster.

Volunteering. On New Year’s Day morning, I volunteered at my local Parkrun. I put back in order some of the bar codes of the 299 people who turned out that morning to run, jog or walk the 5k route. I’ve volunteered a couple of times now since I myself stopped running.

W

Wig. I have renewed my acquaintance with the wig that I last wore in February 2017.

Walking. Lots and lots and lots of walking.

X

This may be cheating but ”x” is for the challenging letter ”x” in Banagrams and Scrabble, two of our favourite word games. We played both of these more than a few times time over the holidays.

Y

Year. Another year has passed. It’s been very hard for many on many fronts. On a personal level regarding my health, it’s hugely disappointing that three different lines of treatment stopped working over the course of just 12 months. In many ways, though, it’s been a wonderful year. If you follow this blog, you’ll have followed the many ups and downs.

Z

Zoom. We hadn’t used the Zoom online chat service for a while but it came back into its own over Christmas. My book group had its Christmas meet-up on Zoom where, instead of the Secret Santa we would have done had we met in person, we bought ourselves a present and did “show and tell”! On another occasion, we were able to chat to our friends in Madrid.

And that’s it. Happy New Year, everyone!

From one chemo to another

I had hoped to go the full six, 28-day cycles with paclitaxel, the intravenous chemo I was on as part of my treatment for the breast cancer that’s spread to my bones and is in my bone marrow, affecting my body’s ability to produce healthy blood.

That would have taken me to early/mid February next year. Frustratingly, my cancer had other ideas. I’m now no longer on paclitaxel and I’m due to start a different chemo – eribulin – on Wednesday this coming week. 

Yes, I was annoyed and frustrated and angry and sad and, yes, I swore a huge amount out loud to myself once the results of the half-body PET CT scan that sealed my fate with regard to paclitaxel had sunk in. I got the results on Tuesday this past week. I’m not going into detail but they showed “progression of the skeletal metastatic disease” and “nodal and widespread metastatic activity… suggestive of disease progression”. The paclitaxel session I was due to have two days later was duly cancelled.

A few days on, I’m more settled but I’m still also massively pissed off.

Of course it could be worse. However, most of you know that I’m a great advocate of the sentiment “just because it’s not worse doesn’t mean it’s not shit”. It is shit. Every time a drug in your limited treatment arsenal stops working is shit. That said, there’s still no visceral spread and there are no concerns regarding spinal cord compression. There are options and there is a plan. That plan is eribulin (brand name Halaven).

My tumour marker level had tumbled during the first and second 28-day cycles of paclitaxel almost to an all-time low since my secondary breast diagnosis in Spring 2019. When my tumour marker level is falling, it tends to mean the cancer is less active. It had edged up a little during the third cycle but it was still very low relative to where it had been when I started on paclitaxel in mid-August.

The fact that the marker had gone up at all was disappointing, but not disastrous. I’d also been experiencing some pain in a couple of joints on a sporadic basis. On a positive note, the results of the spinal MRI scan I’d had recently had come through, showing no change from my previous one, in July. It was decided when I saw the consultant at the end of Cycle 3, on Wednesday 17th November, that I should go ahead with Cycle 4. I had the first session a couple of days later, on Friday 19th, following the now seemingly standard blood transfusion. On Thursday 18th, I had a half-body PET CT scan, which covers from the top of your head to above your knees. As with the MRI scan, my last PET CT scan had also been in July.

It’s fair to say things started to get a bit messy on the Wednesday night (17th). I awoke with considerable pain in various joints on my left hand-side at various points during the night. It largely eased after I took some strong pain killers. It happened again the following two nights, although the episodes on Wednesday were by far the worst.

Things were largely ok during the day. I’d signed up as a volunteer at my local Parkrun on Tooting Common in southwest London at 9am on the morning of Saturday 20th. I was due to be one of the barcode scanners at the end of the run. I felt wrecked but I wasn’t in pain so I went along and did that. I’m glad I did. I’ve had so much out of Parkrun; it’s good to give back.

To cut an even longer story short, some pain returned on the Saturday morning after I got home from Parkrun. I’d run out of strong painkillers and I was exhausted but couldn’t sleep. I ended up being admitted to the hospital where I’m being treated and kept in overnight while they sorted out my pain meds. I was not screaming in pain or anything like it but it was not pleasant. I was discharged on Sunday afternoon, by which time I was absolutely fine. I left with copious amounts of both strong and very strong painkillers.

I cannot fault the care I received in hospital but it was all rather frustrating as I’m pretty sure I could have resolved the matter at home had I not run out of my usual painkillers.

On the Monday, I was contacted by the superbly efficient clinical nurse specialist who’s a critical part of the breast cancer team at the hospital. She said she and the consultant were fully aware I’d had an overnight stay and that the consultant would like to see me the following day. I didn’t realise it at the time, but the results of the PET CT scan were already through. Those, together with the pain-related episodes, meant it was time to move on from paclitaxel. 

With Tuesday came a detailed review of the scan results and my signing the consent form to start eribulin.

So what is this new treatment? 

With paclitaxel, it was a 28-day cycle. Each cycle consisted of three iv treatment sessions. These took place on Days 1, 8 and 15, with blood tests the day before each session and then again at the end of each cycle, followed by a meeting with the consultant on or around Day 28. Each treatment session took a couple of hours or so, with the first session of each cycle taking an additional hour or so as this was when I received my monthly infusion (also intravenously) of the bone-strengthening drug, Zometa (zoledronic acid). The standard number of cycles one has on paclitaxel if things are going ok is four but this can be upped to six.

With eribulin, it’s a 21-day cycle, with each cycle consisting of two treatment sessions. Treatment is on Days 1 and 8. As with paclitaxel, there are blood tests the day before each session, to check that it’s ok for that session to proceed. There are also blood tests at the end of the cycle, followed by an appointment with the consultant 1) to go over the blood test results; 2) to discuss how you’ve been coping with the treatment; and 3) hopefully that you can go ahead with the next cycle.

Unlike with paclitaxel, there is no limit to the number of cycles of eribulin you can have. As long as you’re tolerating it well and it’s working, you keep taking it. The longest the consultant has had a patient on it is 13 months. Fingers crossed it works for me and that any side effects are tolerable – as they were, it has to be said, with paclitaxel. My feet feel better than they’ve been in years and I’m pleasantly surprised not to have lost all my hair. I was also feeling really well overall.

There are some overlapping potential side effects between paclitaxel and eribulin, but of course each drug also has some that are unique. Somewhat strangely, bone marrow suppression is a potential side effect of eribulin – but that’s also precisely among the things we’re trying to treat.

On the bone-strengthening drugs front, I’m switching from Zometa to denosumab (Xgeva). We’ve switched between the two before. The idea is that a drug that works in a different way will have a more beneficial effect. That, in essence, is also the idea behind switching to eribulin. 

Eribulin is delivered intravenously – that’ll be through my port – over a period of just two to five minutes. Denosumab is given as a quick injection – in my case to the abdomen – once every four weeks. It’s clear treatment sessions at the hospital will be much shorter than when I was on paclitaxel and Zometa.

With my haemoglobin level and resulting energy levels being largely low, I now rarely cycle and I don’t run at all.  Swimming has become my new favourite pastime. I don’t swim far and I don’t swim fast but I’ve always loved swimming and now I do it once or twice a week. I’d like to do it outdoors but I get cold very quickly and if I don’t have a way of getting warm immediately, I’m cold for hours.

This desire to feel the sun on my shoulders was in grand part behind my decision to escape to a beautifully warm and sunny – and beautiful – Cyprus for a week in early November. 

Yes, you read correctly. Cyprus. Photo number one to the left.

And yes, you’re also right, my husband and I had indeed just been to Madrid.

The photo to the right was taken on the trip to Spain. It’s of me and two of my dearest friends, both of whom I met in Madrid in the early to mid-1980s when I lived there teaching English as a foreign language before coming back to Glasgow to finish my degree (in Spanish, what else!). We were in Madrid for a wedding; the woman in the middle is the mother of the groom.

My now husband and I met in Madrid in those same early days. We loved the city this time round as much as we’d always done.

And, yes, there is even more on the travel front. Before the Madrid trip, we had been to Tiree, a tiny island off the west coast of Scotland.

My husband and I were in Tiree with one of my brothers, John, his wife and my niece, one of their four children. We had a lovely week.

Madrid and Scotland had been in the diary for a long time. After months of coronavirus-related uncertainty – combined with uncertainty over how I might be feeling health-wise – we were delighted that we were able to do both trips.

Cyprus was an impulse booking, done the day before I had my port inserted on 1 November. I just Googled ”Where’s hot in Europe?” and Cyprus won.

I’m happy to say I swam outside every day of the Cyprus holiday in the sunshine, either in the pool or in the sea – indeed sometimes both on the same day!

There is little that can beat the feel of the sun on your shoulders drying you off after you’ve been swimming.

The sea was warm, the water was clear. It was an absolute delight. I went with one of my brothers, Peter. We took dozens of photos. The one above on the left is among my favourites. 

I couldn’t stay in the water for long at any one time as I’d only recently had my port inserted. The wounds from the two incisions from the procedure were healing well and while I wasn’t concerned about getting them wet, I didn’t want to overdo it.

Before I had the port inserted, I thought I was ok with the chemo nurses taking several attempts to find a decent vein through which to administer chemo or blood transfusions. Since I’ve had the port inserted and we’ve now used it several times, I have to say it is a game-changer. It makes things so much easier.

The procedure to insert the port only took some 40 minutes. However, with the pre-procedure preparation and the post-procedure monitoring, I was at the hospital for the best part of the day. The procedure, which is done under local anaesthetic, was the weirdest experience. You feel the sensation of cutting, pushing and shoving – but no pain. The port stands out from my chest; it looks weird but I’m totally fine with it.

Several other events have happened in my life, not relating to my treatment or travels. On my last day in Cyprus, I awoke to the news that the 57-year-old husband of one of my best friends back in Glasgow had died very suddenly and unexpectedly the previous night. A day or so later, the husband of my beloved aunt and godmother in New Jersey died, of advanced prostate cancer.

It’s easy to say, but this first tragic event in particular illustrates why worrying about one’s own mortality – or indeed about the mortality of sick parents, friends or relatives – is so futile. Enough sad/bad things happen that aren’t even on the radar. Be concerned, yes, but try not to over-worry. Events such as these will happen regardless. If anxiety about your or someone else’s future is becoming overwhelming, please seek help. And let the people you’re worrying about know you love them. That should make you and them feel better.

I’m hoping to go up to Glasgow for my friend’s husband’s funeral later this month. It will depend on how I feel after starting this new chemo and on the ever-changing situation with regard to the never-ending pandemic. 

In the meantime, I’ll be booking regular swim sessions at the two local leisure centres to which I’m fortunate to have access. I may also be on the lookout for another break that involves winter sun and warm seas. If you have any ideas, let me know!

To finish, fingers crossed eribulin works for longer than either paclitaxel or indeed the drugs I was on before that. I’m not aiming for or expecting anything, but more than just a few months would be very welcome.

Two days in October

This started out as an account of what’s been happening since my last post on 11 October. When I got to 19 & 20 October, I decided that together they deserved a post of their own. I’m pretty sure you’ll agree that they were two rather eventful days. Among other things, the first of the two days was our older son’s 23rd birthday.

19 October

I have an appointment with the consultant oncologist in the morning to go over the results of the blood tests I had done yesterday. Today is the final day of my second cycle of the iv chemo I’m having as part of my treatment for the breast cancer that’s spread to my bones and is also in my bone marrow, affecting my body’s ability to produce healthy blood. All going well, I will start Cycle 3 tomorrow. I’m currently on 28-day cycles of iv paclitaxel. This involves treatment sessions on Days 1, 8 and 15 of each cycle with blood tests done the day before each session. Each treatment session lasts two to three hours. I see the consultant at the end of each cycle to review how things are going.

As well as having blood taken for the usual tests, I have an extra vial taken so they can do a cross-match. This is in case my haemoglobin has fallen – as it had at this stage in Cycle 1 – and I need yet another red blood cell transfusion.

I see the consultant. It feels like groundhog day. Things are indeed much the same as they were at this stage in Cycle 1. My tumour marker has fallen again (this is very good news) and everything is looking good on the blood front other than with regard to my haemoglobin (this last part is not good news). The level has fallen markedly since my third and final chemo session of Cycle 2 two weeks ago and is again below the level where a red blood transfusion is needed. It’s not quite as low as it was four weeks ago when I last had a transfusion but it’s pretty low – the second lowest it’s ever been. That’s my afternoon accounted for – four hours plus having a transfusion of two units of red blood cells in the walk-in oncology care unit at the hospital.

Immediately after the transfusion, my husband and I head off in the car to Brighton, where our older son is at uni. He’s 23 today. The plan is for my husband and I to take him out for supper, stay over in a hotel then drive back to London the following morning, arriving in plenty of time for me to get to the hospital in time for my afternoon chemo session.

That, at least, is the plan. In the event, our car breaks down when we’re just a few miles from Brighton. We manage to get the car to a safe place. We decide to leave it where it is overnight, continue with our plans for a nice evening with our son and sort out repairs the next day. 

We all have a really lovely evening. This is followed by a very disturbed night for my husband and me. The wind picks up at around midnight. We hear it howling and it’s accompanied by heavy rain battering on the windows. When it all eases off – at around 2 or 3am – we’re treated to squeals, shouts and laughter from youngsters leaving the clubs on the seafront, just down from our hotel. Who on earth goes clubbing in a storm on a Wednesday night? Students, that’s who.

We eventually get to sleep although, as we Scots say, it’s blowing a hooley again in the morning. I go for a walk to take some photos of the waves and the famous pier. It’s so windy that people use railings and lamp posts to steady themselves as they walk along.

We recount our night to our son. He informs us that our hotel room is above one of the most popular post-clubbing kebab shops in Brighton. That explains the noise. He also tells us that one of the seafront clubs hands out free donuts! As with many things that young people get up to, I feel a mix of annoyance, respect and, I guess if I’m being totally honest, envy. It crosses my mind that I should have made good use of the blood transfusion I’d just had and joined the revellers for a night of dancing. I settle instead for a swim before breakfast the following morning in the hotel pool.

20 October

I get the train back to London in the morning and leave my husband to sort out the car. I crack on with the chemo session. Because it’s the first session of a new cycle, I also have my regular monthly infusion of the bone-strengthening drug Zometa.

As on the previous few occasions, it takes a while for the oncology nurses to locate a vein into which to insert a cannula, even with the use of a mobile ultrasound machine. This is likely to be the penultimate time they will have to do this as I’ve been given a date – 1 November – to have a port inserted. I don’t in fact mind the nurses taking several attempts to find a decent vein. However, I recognise overall that it’s neither ideal nor sustainable.

After chemo, I head home to pack. We’re off to Madrid tomorrow for a long weekend! As with our trip to the tiny Hebridean island of Tiree earlier in October, this has been in the diary for many months. We’re going to the wedding of the older son of a couple I met when I first lived in Madrid over 35 years ago. We’ve been good friends ever since. I met my future husband in Madrid at around the same time. When these friends invited us to the wedding all those months ago, we hoped we’d be able to go but we were always aware that Covid and/or my illness could thwart our plans. In the end, everything has fallen into place and we’re very much looking forward to going. We’ll spend time with other very good, mutual friends from around the same time. It will mean a lot to all us that we’ll all be together again, even though it won’t have been that long since we last all saw each other.

My husband arrives home from Brighton shortly after I do, driving a car with a new alternator. Cost of repairs, £300. Ouch.

That was just two days in October. Lots happened over the rest of the month but thankfully the other days were not quite as busy.

A tale of two weeks

Our trip to Cornwall was just what we needed. There’s something about big open beaches, rugged coastlines and fresh sea air that’s good for the soul. 

My husband and I were away from our home in London for nine days, taking advantage of the two-week break between me finishing my first cycle of intravenous chemotherapy and starting my second. It was a last-minute decision to go but I’d been feeling really well after a turbulent few weeks and it made sense.

We would gladly have stayed away longer but I had to come back home to London for bloods tests on 20 September in advance of starting a couple of days later cycle 2 of the new treatment regime I’d begun a month earlier – iv chemo (paclitaxel) to try and stop my secondary breast cancer from suppressing my bone marrow and preventing my body from making healthy blood. Or at least to try and stop it doing so to the extent it had been, where I was having to have regular blood transfusions.

The Eden Project, isolated beaches and coves, rugged rock formations and crashing waves, stunning coastal walks, sea swimming, beautiful harbours and villages clinging to impossibly steep streets, boat trips, ferry rides, freshly caught seafood, local beer, local gin, cream teas, surfers. That was our week (and a bit) in Cornwall.

The following week, back in London, couldn’t have been more different. There were blood tests, a blood transfusion, iv chemo and a third dose of the Covid vaccine.

Back to Cornwall for the moment. Its coastal paths are famous for being hilly and steep. With the bone marrow suppression, my haemoglobin – and consequently energy – levels are pretty low. I’ve had to stop doing many of the sports I used to take for granted. Exercising now largely consists of gentle walking and swimming. 

Before we went away, we had no idea how much walking – strenuous or otherwise – I’d be able to do. We soon found out and, once we got the measure of things, it was better than we might have anticipated. Walks that would normally have taken two hours took four, but that was ok. We weren’t in a rush. There were several short-lived bouts on my part of melancholy regarding my illness and we reminisced over the week about the big, long walks we used to do. Overall, though, our mindset was that it was a huge positive I was doing these walks at all.

I was fine on the flat but as soon as the gradient started to climb, my legs turned to lead and I could feel my poor heart go in to overdrive. I had to stop for breath every few minutes, if not even more regularly.

I genuinely wondered more than once how fast a heart could safely beat. I also thought that sometimes it’s best not to know the challenges ahead. That goes for life as much as it does for steep Cornish footpaths.

We travelled round, visiting lots of different places, keeping to the coast as much as possible.

We made the holiday last as long as we could. We stayed away one more night than we’d planned so the drive back to London would be three hours rather than six. Our hotel that last night had a heated outdoor pool and I went for a swim the following morning. The previous day, we’d done a five-mile hike – out along the cliffs and back along the beach. In true Cornish style, it was indeed hilly.

The scenery throughout the whole trip was spectacular and I was genuinely happy that I was able to do the amount I did. It’s hard to let go but, for peace of mind, you have to.

One thing didn’t register with me at all while we were walking and it really should have done. In addition to the bone marrow suppression, I have extensive bone mets (ie the cancer is in many of my bones including my spine and pelvis). Bone mets can cause extreme pain but I’m in no discomfort whatsoever in that regard.

On our way home, we stopped off at the hospital and I had bloods taken for testing. I was to see the consultant for the results the following day and I hoped I would start my second cycle of chemo the day after that. Back at the house, we started the mundane tasks that always follow a holiday. We talked about what a superb time we’d had.

It came as rather a shock, a few hours later, to get a phone call from the hospital telling me my haemoglobin level was lower than it had ever been and could I come in for a transfusion of two units of red blood cells the following day? This would allow me to go ahead the day after that with the first session of my second cycle of chemo. I was gobsmacked. I genuinely had no idea it was so low. I’d got used to being breathless during the walks, but overall I was feeling great. 

Back to earth with a jolt. I now couldn’t help thinking that the results of all the other blood tests they’d done would be bad too. Talk about a mood change.

Thankfully I was wrong. When I saw the consultant the following day, she told me that everything else was largely good. Significantly, the tumour marker had fallen substantially. That was all good to hear.

I had the blood transfusion and then went ahead with the first treatment session of Cycle 2 of iv chemo. We’re now a few weeks on and I’ve finished cycle 2. Each cycle lasts 28 days and I have treatment on Days 1, 8 and 15. It’s all going well except on one front. The chemo has damaged the veins in the arm where I have it and it’s becoming increasingly difficult to find a vein into which to insert a cannula for chemo. It looks like I may need to have a port inserted. More on that another time.

So far on chemo I’ve had no nausea, no mouth sores, no change in taste and no gastrointestinal problems. My hair is not falling out as such although it is thinning and comes out in clumps when I brush it if I’m anything other than extremely gentle. You might not think it from this photo, but I did in fact leave a substantial amount of hair in Cornwall.

I’m due to have my next set of blood tests on 18 October, in advance of potentially starting cycle 3 of iv chemo on 20 October. They’ll check the tumour marker then as well. 

I won’t be surprised if I hear I’ll need another blood transfusion before going ahead with cycle 3. My haemoglobin level had gone down between sessions two and three of cycle 2 to just above where they recommend a transfusion. I was given the choice of having one and chose not to. If it falls further between now and the 18th, I’ll need one.

In the meantime, we’ve started our next adventure.

We’re on the tiny Scottish island of Tiree for a week’s holiday with one of my brothers, his wife and their 15-year-old daughter. Unlike the impromptu Cornwall trip, this has been in the diary for months. We didn’t know how my health would be when we arranged to come, back in May, but here I am, feeling well and doing ok. Getting here was an adventure in itself; we flew from Glasgow in the small 18-seater plane in the photo.

Incidentally, Tiree is almost totally flat so at least I won’t have to worry about any hills when we’re out walking!

Some reassurance amid a turbulent month

Things calmed down substantially after my first session of iv chemo.

Since then my husband and I have had a fabulous nine-day holiday in the beautiful county of Cornwall in southwest England and I have already had the first and second sessions of my second cycle of iv chemo. Things have not been without drama on the treatment front but, for a few weeks now, I have been feeling really well.

There will be more on the holiday and on how treatment is going in later blog posts. In the meantime, here’s a run-down of events over the month when I realised I would be moving on to iv chemo through to starting treatment and heading off on holiday. With more than a dozen hospital trips, two blood transfusions and a 2am trip to the emergency department, it was a turbulent few weeks.

During much of this time, I was sleeping badly. That didn’t help an already difficult situation.

Reading through this post now, it seems a million miles away from where I am today.

Among other things, my feet are better than they’ve been in years. That means I’m sleeping so much better. Also, I have my appetite back. I’ve put on two or three kilos over the past few weeks; I don’t think it’s all down to Cornish beer and gin.

Here goes. It’s a long read.

10 August

I make a quick trip to the hospital to have blood taken for standard testing at the end of the fourth monthly cycle of the drugs that I’m on – a combination of two drugs called everolimus (Afinitor) and exemestane (Aromasin), taken once daily in tablet form. At the end of the third cycle, the all-important CA 15-3 tumour marker had, to our pleasant surprise, unexpectedly fallen slightly when the trend over the first two months of treatment had been upwards.

11 August
I see my consultant to discuss the results of yesterday’s blood tests. My haemoglobin level has held up to some extent since my latest red blood cell transfusion on 29 July. Other developments outweigh this positive news, though. My platelets have fallen to a level that’s deemed problematic. Also, the tumour marker is up, meaning the cancer is more active than it has been just recently. That is a huge disappointment. My neutrophil level is where it has been for the past couple of months – low but not too concerning.

All things considered, the consultant reckons it’s time to move on to the next line of treatment, ie iv chemo with a drug called paclitaxel. The secondary – incurable but treatable – breast cancer I have has spread to my bones and invaded my bone marrow, impairing the ability of my body to make healthy blood. It’s hoped the paclitaxel will attack the cancer sufficiently to enable my bone marrow to be more productive. That in turn would mean among other things less frequent blood transfusions.

I stop taking the various drugs I’ve been on, except for one. That means stopping the non-red blood cell transfusion option we’ve been trying as a means of boosting my haemoglobin production. I’ll have another set of blood tests done in a week’s time. At that point, we will most likely go ahead and prep for starting iv chemo.

12 to 17 August

I’m feeling pretty grim on and off – emotionally and physically. I feel so tired. My feet are sore, a side effect from chemotherapy treatment back in 2015 and also probably from the drugs I’ve been on more recently. My elbow and knee joints are sore. I’m thirsty all the time and I’m drinking gallons of water and juice. All these things prevent me from getting a good night’s sleep. I revert to wrapping my right foot in a wet towel in the middle of the night to try and stop the throbbing. Some nights I’ll take a painkiller, others a sleeping tablet. Sometimes they work, sometimes they don’t. Also, I have very little appetite.

18 August
I have blood tests first thing followed by a clinic appointment in the afternoon. My regular oncologist is on annual leave and I see another consultant from the team.

The consultant talks me through the consent form for paclitaxel, with all its horrible potential side effects. My eye catches the date on the form and I mention that today is our younger son’s 21st birthday. We have a nice chat about where we might go for a celebratory family meal on 24 August, which is when the birthday boy, his older brother, their dad and I all next coincide at home.

I sign the consent form. I’m booked in for my first session on 23 August.

As for the blood test results, my haemoglobin level has fallen during the treatment break. It’s decided I should have a blood transfusion prior to starting chemo.

I’m tested that afternoon for diabetes and for signs of an infection as for days I’ve had the most incredible thirst that won’t go away no matter how much water or cordial I drink. Nothing is detected on either front.

20 August
I have the blood transfusion. I have just one unit (previously I’ve usually had two) and I’m at hospital for about two hours. I start to feel slightly better overall. The pain in my joints has gone.

23 August
I’m still feeling ok. I have my first session of iv chemo. I’m at hospital for around three hours or so.

24 August

I still feel fine. It’s not exactly hot but I decide to go for a swim at the local lido.

I still feel fine later on. The four of us head out for the birthday meal. We go for a drink at a local pub then on to an Argentinian steakhouse. We have a really lovely evening. I’m still feeling fine when we get home.

At around midnight, in bed, I feel myself developing a temperature. I track it for a couple of hours then decide to get a taxi to A&E at the hospital where I’m being treated. I’ve been told not to bother calling the emergency oncology line but to go straight to A&E if my temperature goes above a certain level. It was above that level.

I’m admitted almost immediately to a room in the emergency department. The concern is that with such low neutrophil levels, you might have or be in the process of developing neutropenic sepsis, a serious and potentially fatal infection. I have lots of bloods taken. I give a urine sample. I have a nose and throat swab taken to check for Covid in case I need to be kept in. While the tests are being run, I’m pumped full of antibiotics and fluids – just in case. My blood pressure, temperature, blood oxygen level, etc, are checked multiple times throughout the night. My temperature goes down overnight and no infection is found. I’m sent home mid-morning the following day with a week-long course of antibiotics to cover me in case there is an underlying infection that hasn’t been picked up. I go straight to bed and don’t get up until the following morning other than to go to the loo. Loo trips are quite frequent given I am still drinking huge amounts.

They don’t know why my temperature went up but said that it might have been a reaction to the chemo. 

27 August

I’ve felt absolutely exhausted since coming home from hospital. I have no energy, no appetite and I feel really low.

I go back to hospital this morning for follow-up blood tests in light of my trip to A&E earlier this week. My neutrophil level is down to well below the level that’s deemed safe for chemo. My haemoglobin is down too. That explains the lack of energy.

I’m given yet another blood transfusion and I’m sent home with three lots of neutrophil boosting injections that I’m to give myself over next three days to get my neutrophil level high enough for chemo on 31 August.

29 August

I feel so much better. It’s like I’m a different person. I could cry with relief.

31 August

Blood tests at 9am. The results are good enough for me to go ahead with the second chemo session that afternoon. It takes about two hours or so. I’m still feeling well, although there is no improvement on the sleepless night front.

2 September

Back at the hospital at 9am to have mid-cycle bloods taken. Later in the day I see the consultant, who tells me the results are ”reassuring”. After all the turmoil of the past few weeks, that is very good to hear.

The consultant checks my feet and hands for any signs of worsening peripheral neuropathy. There’s nothing to be concerned about, so she orders a slight increase in the next dose of chemo I’m to get.

I’m still feeling well, but lack of sleep – largely due to the pain in my feet – is still a big problem. The consultant makes some suggestions, some involving drugs, some not. I decide to stop being an idiot and to give the sleeping tablets a proper chance to work. I also start rubbing tea tree oil into my feet.

3 to 5 September

I’m feeling well. I still tire easily, but that’s ok.

On the Friday, my husband suggests a trip to the always stunning Kew Gardens. We take it slowly and spend a lot of time sitting, resting, on benches. One such bench is the Remembrance and Hope bench. An explanation of the provenance of the oak tree from which it is made is carved into it. I read the words while seated on the bench, which means I read them “upside down”. My husband again professes amazement at my ability to read this way. Until I met him, I genuinely thought everyone could do this. Apparently not. My husband claims it gives me an unfair advantage at Scrabble.*

On the Sunday, the sun is shining and we visit another lovely outdoor London space. This time it’s Regent’s Park, where we have a catch-up and lunch with some good friends.

6 September

Back at the hospital for blood tests to determine whether I can go ahead tomorrow with the third and final session of the first cycle of iv paclitaxel.

7 September

In the morning, I have a follow-up dental appointment at the hospital. Some months ago, I became aware of an annoying throbbing in several of my lower front teeth. It comes and goes but no cause could be found at the initial appointment and no cause was found this time either. We agree I’ll keep an eye on it.

The blood test results from yesterday are good enough for me to go ahead with my third session of chemo. That’s the afternoon accounted for. It’s a relief to have completed Cycle 1.

After a terrible summer weather-wise, London is basking in 28 degree heat.

8 September

The sun is still shining.

We had hoped to get away for a week’s holiday abroad with our two sons at around this time but we just couldn’t make it happen. We agreed to try and arrange something later in the year. My husband and I decide to go on holiday ourselves. Planned departure date 11 September. Destination Devon and Cornwall. We’re sorry not to be holidaying with the boys but it can’t be helped. We start to look forward to our own trip.

We go to the local lido with some friends and spend the morning there. It seems wrong not to take advantage of this beautiful weather and this beautiful space.

We bump into some other friends. It feels like we’re already on holiday!

Our older son leaves for uni.

That afternoon, I take part in my company’s annual fundraising walk. I do the 5k distance; others do 10k or 20k and some even do the full marathon distance. I see colleagues I haven’t seen for ages because we’ve all been working from home for well over a year. I meet in person for the first time new colleagues with whom I’ve been working online for months. The destination and after party is at Twickenham Stadium in southwest London, the world-famous home of English rugby. We enter through the players’ tunnel. It feels quite special.

What a lovely, lovely day.

9 September

We start planning our trip.

10 September

Our younger son goes back to uni.

We pack for our trip.

11 September

Off we go!

*I was always able to read inverted text but I have just googled it and it seems that if it doesn’t come naturally, it can in most cases be learned.

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; 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.