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!

Expectations? It’s hard not to have them.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Topping off a lovely few weeks with my 100th Parkrun

I’ve just done my 100th Parkrun and it was the perfect end to a lovely few weeks.

I started doing Parkrun seriously in April 2016 to get fit again after finishing active therapy for primary breast cancer. Little did I know then that these free, timed, volunteer-led Saturday morning 5k runs would become a big part of my life and that almost four years and two cancer diagnoses later, I’d be chasing down my 100th.

Reaching one hundred is a pretty big milestone in the Parkrun world. I couldn’t be more pleased, especially as at one point earlier this year, not long after I was diagnosed with secondary breast cancer, I genuinely thought my running days were over.

It really felt like a massive achievement. Others agreed. Friends turned up to cheer me round our local course at Tooting Common in southwest London with the banner they’d made when I cycled Ride London last summer. One friend ran the whole 5k with me. Another chose to make this her first Parkrun. Finally, there was a welcome party waiting for me with champagne, party poppers and cake!

It was the perfect end to what had been a very pleasant few weeks.

Just two days earlier, I’d gone ahead with the ninth monthly round of the treatment I began in May for secondary breast cancer. I’d had a wide range of blood tests the day before. It’s no longer as straightforward as saying that the results are showing good news across the board – the relevant tumour marker has edged up again. However, my oncologist clearly thinks the balance is still in favour of continuing with the same core medication I’ve been on since starting treatment last May. This is my first so-called “line of treatment” and the longer you can stay on these early lines – and off chemo – the better.

I’d been feeling good physically most of the way through the four weeks of treatment cycle #8 – apart from on one key front, more of which below. Feeling well, however, is no indication that things are going well inside. That being the case, together with the uncertainty of the past couple of months, it was a huge relief to hear I’d be staying on this treatment for another four-week cycle.

So off I headed to the day treatment unit for three lots of injections and to collect my next 28-day supply of the abemaciclib tablets that I take every morning and every evening.

Treatment at the day unit consisted of four individual injections: one of the same drug (fulvestrant) in each buttock lasting two to three minutes each, one of another drug in the left side of my abdomen (denosumab) that took about a minute, and a quick 30-second jab of yet another drug (filgrastim) on the right side of my abdomen to finish.

It’s not an exaggeration to say I felt like a pincushion by the time I was done. That’s not a complaint; it really is just a statement. They can stick as many needles as they want into me if it keeps the cancer in check.

It’s been the loveliest of Christmases and New Years – spent very sociably but also very locally. Our two boys started uni in September and it was great to have them home for a few weeks. A highlight was them treating us to a delicious home-made Beef Wellington on Boxing Day.

I’ve been having a lot of fun sports-wise. I was on a mission to reach my 100th Parkrun as early in the new year as possible. To achieve this, I did four Parkruns over a ten-day period – two regular Saturday runs at my home course and two special events, one on Christmas Day at Dulwich Park a couple of miles away and one on New Year’s Day, also at Tooting.

Also, I’m back playing in the tennis leagues at my club. Over the holidays I played – and lost – two singles matches.

Most fun of all, on New Year’s Day a friend and I took a dip in Tooting Lido, the local 100 x 33 yard open air swimming pool. Even with a full wetsuit, we managed no more than two widths – my hands and feet were frozen the second I got in. It felt like a suitably bonkers thing to do on the first day of a new decade.

Another positive relates to the issue of drug side effects. Severe diarrhoea is a potentially serious side of abemaciclib, one of the two drugs I’ve been on from the start. There had been moments but I hadn’t been too badly affected. That all changed with treatment cycle #7 just over two months ago when I switched from Zometa, the drug I’d been taking to reduce the risk of bone fractures and other “skeletal related events”, to denosumab, which is aimed at doing the same thing but in a different way.

If you’ve had bad attacks of the runs – and I mean really bad – you’ll know how nasty diarrhoea can be. If you haven’t, well just be grateful. The antidiarrhoeal medicine loperamide quickly became my new best friend. I can now boast of being an expert in its use – for both treatment and prophylactic purposes.

While it didn’t spoil our recent holiday in Jordan it was, as I said euphemistically to the oncologist, most certainly “an issue”. I could only look longingly at the all-you-could-eat breakfast buffet at the smart beachfront hotel where we stayed for the last two nights of the trip. That felt most unfair. Also, I bet I’m one of the very few people who know the location of all – and I mean all – the public conveniences in Petra.

Anyway, the good news is that this cycle so far I haven’t been troubled anywhere near the degree to which I was in the first two cycles. It’s usually at its worst in the first two weeks – and at its very worst in the first few days – of the four-week cycle. Fingers crossed things are settling down.

Finally, the charity Breast Cancer Now has chosen to feature on its website an update of a blog post of mine that I wrote originally last November after a lovely summer and a trip to the US to visit two much-loved aunts. The fact that it’s had lots of positive feedback from many, many women with breast cancer makes me very happy indeed.

As I said, it’s been a lovely few weeks. Indeed it’s ongoing. At a ridiculously early time tomorrow morning, I fly off to the French Alps for my annual ski trip with friends. I’ve stocked up on loperamide but I do feel very fortunate even to be in a position where I’m able to  go. It’s from Friday to Tuesday, and the aim is to ski on each of the five days we’re away. I call it a long weekend; my husband calls it a short week. He is technically correct, but don’t tell him I said that.

Here’s to 2020. Let’s hope it’s kind to all of us.