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.

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!

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.

An update

In the grand scheme of things, I’m quite relieved at the results of my latest round of blood tests.

I met the oncologist earlier this week to discuss the results of the tests I’d had done the previous day. The best I could have hoped for was for my tumour marker to have stayed at the level it had jumped to in December. I figured that was unlikely given that it had risen by a whopping 20% between the November and December blood tests. In the event, it went up by around another 10%.

On the upside, on the blood front things are good. The secondary breast cancer that has spread to my bones has also infiltrated my bone marrow and so reduces my body’s ability to make healthy blood. It was therefore good to hear that my haemoglobin count is up from last month and is again within the normal range, albeit at the very lower end. My neutrophils, while still below the normal range (they’ll never be there again), are 40% up on last month. That means I’m a little better placed to face any infection that comes my way – a positive in the current climate.

Once again, it’s swings and roundabouts. The tumour marker is up but bloods are ok.

With the pandemic still on the rampage, every effort is being made to minimise the number of trips patients on treatment make to hospital. For example, every other appointment with the consultant over the past nine months has been on the phone rather than in person. In fact, I may have had more over the phone than not. Some people don’t like this way of communicating but it’s fine by me. In addition, for my next two rounds of treatment, I’m going to self-inject at home the bone strengthening drug (denosumab/Xgeva) that I have at the start of every new cycle. It’s usually done by one of the oncology nurses at the day treatment unit at the hospital. I did it myself last month at the unit under supervision and that too was fine.

The fact that the marker is going up indicates that there is increased cancer activity somewhere in my body. That’s what happens with secondary cancer. It eventually outwits every possibly treatment. While these latest results were far from disastrous, you do have to be practical. The oncologist therefore discussed with me what drug(s) I might move onto if the scans I’m to have in seven weeks show signs that the cancer has progressed to the extent that we need to change to another treatment. The scans could show any number of things. While you can’t predict a precise course of action in advance as you don’t know what you’ll see, you can be thinking of what might need to happen under various scenarios.

The discussion was quite sobering. But let’s not pre-empt things. That decision – if indeed a decision needs to be taken – is eight weeks away. In the meantime, I carry on with my current treatment and just get on with things.

One of those things is reporting my health status daily on the Covid Symptom Study app – covid.joinzoe.com – that is used to study the symptoms of COVID-19 and track the spread of this virus that is causing such devastation and unimaginable heartache to so many. (On a personal level, next week will see the funeral of a good friend’s husband who died from COVID-19 just after Christmas. His death was heartbreaking on many levels.)

It seems heartless to carry on writing about my own experiences having just written those previous two sentences, but the case is that I reported having a runny nose on the Zoe app, as it’s known, one day last week. While a runny nose is not a symptom of infection with the virus, I, together with any other household members, was “invited” via the app to take a test. It was all very efficient. The test kits were delivered the day after we requested them, we posted them back the following day and got the results – negative in the case of both myself and my husband – 36 hours later via text and email.

I reckoned the results would be negative but, with transmission rates as high as they are, you can obviously never be sure. Our two boys are back at uni and so it’s just my husband and me in the house. I work from home so it’s been a few weeks since I’ve been out for anything other than to exercise or attend hospital appointments. In my husband’s case, it’s for exercise or shopping. I now exercise on my own; I’ve even stopped the walks with friends that had become such a regular and welcome feature of life.

I’m feeling well on the whole and another thing that I’m doing now that I don’t meet up with friends for walks is go out almost every day either for a run or a bike ride. The reason is that I have signed up to a bit of a mad challenge that involves running and/or cycling a total of 192 miles between the beginning of January and the end of March. I could do it all on the bike but I’ve decided to do as much of it as I can on my own two feet rather than on two wheels. Running is so much more challenging than cycling, at least it is for me given the pace at which I cycle. I run incredibly slowly but I guess it still counts as running in that I do overtake people who are simply walking!

There’s no way I’d be running if a friend hadn’t suggested we both sign up for this challenge. Even after having signed up, I’ve had to come up with an incentive to get me out running. I wanted to listen to Transmissions, a multi-episode podcast that I’d heard was really good – about the iconic Manchester bands from the 1980s, Joy Division and New Order. I decided I would only listen to the podcast while running. It was a good plan and it works both ways. I’m loving the podcast so much that I go out running so I can listen to another episode and listening to the podcast makes the runs easier.

This has been a good week for running. I’ve got the week off work, so I’ve got no excuse really. I’m in the category of people for whom work has never been busier and I worked part, if not all, of each of the four working days between December 24th and 31st. It has been so relaxing to have a big chunk of time off. The house is very quiet now that the boys are away again. We had a lovely Christmas together. It’s usually just the four of us anyway on Christmas Day so in that sense at least it wasn’t so different from other years.

The photo above on the left is of me on the 25th, relaxing on the sofa with two of my presents after an almost two-hour spin on the bike – out to Richmond Park, a favourite destination around seven miles away.

The photo on the right was taken in our garden by my husband not long after the bells on New Year’s Eve.

Hogmanay, as we Scots say, normally makes me feel quite melancholic. This year, though, presumably because of all the sadness that 2020 held, it felt important to celebrate and look forward – both because of and despite what the future may bring.

Fourth time lucky with the needle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Back on treatment, feeling mellow

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

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

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

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

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

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

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

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

So what does good feet hygiene entail?

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

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

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

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

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

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

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

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

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

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

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

From cycling in Spain to shielding in south London

I got back from a cycling trip on the Spanish island of Mallorca on Sunday 15 March. That’s a story in itself, but this post is about the fact that, as a person whose immune system is compromised and for whom catching coronavirus could be very bad news, I’ve been practising this new activity known as “shielding” ever since I got back from Spain.

That basically means I haven’t left the confines of my south London house and garden in almost two weeks. During that time, I’ve had pretty much no face-to-face contact with any human being unless it’s been at at least a metre’s distance. That includes my husband – and I didn’t even hug my sons when they came back from uni last week. 

As soon as the COVID-19 pandemic broke, I reckoned I would be in the “extremely vulnerable” group that would be advised to stay indoors and avoid all but the most essential contact. So I started shielding of my own accord as soon as I got home from Spain.

It felt more than a little bizarre given how fit and well I feel – as evidenced by the fact that just days earlier I’d been cycling up and down hills in Spain (see photo) riding 50-70k a day. I ride slowly but I get there.

A text from the NHS Coronavirus Service one evening this week confirmed my new status. It pulled no punches. It said I was “at risk of severe illness if you catch Coronavirus”, that I’d to “remain at home for a minimum of 12 weeks” because “home is the safest place for you”*, that while at home I should “open a window” but not go out other than to any “private space” such as the garden or front path, and that I should stay three steps away from others indoors. A subsequent text advised me to have an overnight bag ready in case I’m hospitalised.

I love the outdoors, but I’m already starting to see “outside” as a dangerous place. Given the stark advice in those texts added to my own desire to stay well and the fact that London is the epicentre of the outbreak in the UK, it’s not surprising that I’m wary of leaving the house – even if it’s to get the treatment which has, largely, been keeping my cancer in check for the best part of a year.

The primary breast cancer I was treated for some years ago has spread to my bones and bone marrow. While it’s currently treatable – and is more or less under control – it’s ultimately incurable.

Somewhat ironically, it’s more the treatment I’m having that makes me immunocompromised than the cancer itself. This side-effect is managed with injections of a drug called filgrastim, which stimulates the production of neutrophils, the white blood cells that fight bacterial – not viral – infection. For the past few months, I’d been having just one of these, at my regular treatment appointment. In March, though, just as the outbreak was starting, the consultant prescribed an extra one for me to self-administer mid-cycle to keep my neutrophil levels up.

In 2014, I was lucky enough to get the chance to take part in a transatlantic sailing race, from the Canary Islands to the island of St Lucia in the Caribbean. It took 13 days and it’s one of the most exciting things I’ve ever done.

I had next to no experience of sailing. You just had to be up for an adventure, be a team player and be very good at following instructions (I can hear my husband snorting in disbelief at that last one but I can do that no problem if I decide I want to). Anyway, the pre-trip training included a one-day Sea Survival course that taught us how to use all the safety kit on board and what to do in an emergency. We spent a lot of time in the water at a local swimming pool with life rafts and the like. It was all well and good that we had this training,  but the key take-home message for me was do not fall overboard from a 72-foot long yacht that’s going full tilt in the middle of the Atlantic. The chances of you surviving are not good. 

I felt pretty much the same reading these texts I’ve been receiving. It really would not be good for me to catch this virus. I’ve gone from fretting that my treatment might be changed or delayed to fretting about the fact that next week I’ll have to leave the house on not one but two occasions – once next Wednesday to have my blood taken for testing and then again the following day, assuming the blood test results are ok, to start my 12th round of treatment. I won’t see the consultant for my results as I usually do as, rightly so, they’ve stopped face-to-face meetings.

My rational mind tells me it’s good news that my treatment plans are unchanged. Appropriate social distancing measures will be in place, I’m sure, but I’ll still be nervous.

It was a last-minute decision to sign up to the cycling camp in Mallorca. I did so after receiving “not bad news” in early March in relation to the two scans I’d had in mid-February.

I flew to Mallorca from Madrid on 11 March. My husband and I had gone there to celebrate his 58th birthday. That was on 10 March. It was also our 35th anniversary of getting together as a couple, so it was pretty special. We spent the evening with Spanish friends we’ve known since we lived and met in Madrid in the mid 1980s. The talk was of coronavirus but other than that Madrid was felt no different from usual and there was little sense of the huge upheaval that was to come.

Back to London. In the words of the oncologist, the PET CT scan results “gave with one hand and took with the other”.

Some previous “hot spots” were less hot than they were three months ago but there were some new hot spots elsewhere. As for the MRI scan of my spine, the conclusion was that despite there being “widespread metastatic disease”, appearances were “stable compared with previous”.

Things are still looking ok on the bone marrow function front. 

My view is that while “not bad news” is not good news, it’s a heck of a lot better than actual bad news. Also, I really can’t believe that with all this going on inside, I’m not in any pain. For that, I couldn’t be more grateful. 

I know this is all about me and that many people are in a far worse situation – and, of course, that there are many people out there in essential jobs who are themselves at great risk of getting the virus. However, it does illustrate perfectly how coronavirus has changed everything. And if we’re to believe the forecasts, we ain’t seen nothing yet. 

Long before most people had even heard of coronavirus, I wrote a long article about living with secondary breast cancer. Some friends read a draft and suggested I try to find a broader audience for it than I’d get with my blog. I approached the Institute of Cancer Research and they said they’d be happy to publish it.

In the article, I make the point that very often we make presumptions about the future when the reality is that we have no way of knowing what will in fact happen. Reading it now, it seems weirdly prophetic. 

The ICR published the piece on Mother’s Day. If you read it, you’ll see why they chose that day. It’s frank and honest right from the start. Please only read it if you think you’re ready for that. You can read it here.

*I take issue with the blanket assertion that home is the safest place for people to be in these times of lockdown and self-isolation. It may be for me but what about women in abusive relationships and/or at risk of domestic violence, not to mention children who live in very troubled households? I have relatives who are school teachers and they all know of children for whom school is their only safe place.

Dodging a bullet

I feel like I’ve dodged a bullet.

Yesterday I had my monthly appointment with the oncologist and I got the results of the MRI scan I had on November 20th. That scan was prompted by the fact that the PET- CT scan I had had earlier that month had shown there had been some growth in the cancer that’s in my spine.

If this was confirmed by the MRI, there was a possibility I might need radiotherapy to shrink the tumour if it was seen to be getting too close to my spinal cord, where it could do some serious damage if left untreated.

I also got the results of the blood tests I’d had the previous day. Those results, combined with the scan results, would likely determine whether we needed to call a halt to the drugs I’m on and move on to the next line of treatment. That would have been very disappointing as things had seemed to be going so well. Obviously the longer you can stay on these early lines of treatment, the better.

Anyway, it turns out from the MRI scan results that, despite the “flare” highlighted on the PET-CT scan, there is “no strong evidence to suggest that there is disease progression”.

The results also confirm the “ongoing treatment response” on the bone marrow front. (The breast cancer I was treated for in 2015/16 has spread to my bones and bone marrow.)

Based on the MRI scan results and the blood test results, I went ahead yesterday afternoon with treatment cycle #8: the fulvestrant buttock injections, an injection in the stomach of denosumab*, and off home with the latest 28-day pack of abemaciclib tablets. The important tumour marker (CA 15-3) is up again but that in itself is not enough to come off this treatment. There’s stuff going on with my kidneys that could partly account for the rise. Importantly, my bone marrow function continues to improve – to the extent that this cycle I’ve not to give myself the injection of filgrastim, the white blood cell booster.

So no progression. No radiotherapy needed. Core treatment unchanged for one more month. A bullet dodged, whether for four weeks or longer we can’t know at this stage.

We still need to keep a very close eye on things. I see the consultant again in a month’s time and I’m to have repeat PET-CT and MRI scans early in the New Year.

So it’s still very much one month at a time but it’s nice that this particular month includes Christmas. We’re taking nothing for granted but this is an unexpected and welcome early present. We’ll accept it and be grateful.

*Denosumab is a bone-strengthening drug for the prevention of skeletal related events such as fracture, radiotherapy or surgery to the bone, or spinal cord compression. It’s given as a subcutaneous injection whereas Zometa, the bone hardener I was on previously, is given as an intravenous infusion like chemo. This means treatment now takes much less time – and I don’t have to go through the trauma of having a cannula inserted and being hooked up to a drip.

A birthday, a bike ride and a breast cancer reality check

That was a fabulous weekend – despite there being a stonking big breast cancer reality check at the end of it.

On Friday I went ahead and started my sixth monthly treatment cycle for the secondary breast cancer with which I was diagnosed in April. A mix-up with bloods meant it didn’t happen the previous day as planned. According to the blood test results, things are still looking good. For that, I am incredibly thankful.

The following day was our older son Jamie’s 21st birthday. It was the loveliest of occasions.

My mum bowling!

The two boys came back from uni and my brother Peter, who is also Jamie’s godfather, came down from Glasgow. He brought my mum with him. Finally, my two adult nieces – the boys’ cousins – who live in London (and who very sweetly call me their London mum) were also there, with the boyfriend of one of them. We went bowling!

The cake

Since I was diagnosed with this treatable but ultimately incurable illness in April this year, milestones have even more special significance than they ordinarily would have.

At this one, there was a sense of calm and wellbeing with lots of joy, affection, love and laughs… and, of course, cake. 

Then on Sunday, the next day, the two cycling clubs I ride with – BellaVelo CC and Balham CC – joined together for a 100 kilometre bike ride in my honour and to raise funds for research into secondary breast cancer.

Up to 90 of us, including my brother Peter, rode out through Surrey in different pace groups and then all met up in a coffee shop back in London at the end.

After the ride

The Balham club has a nice write-up and more photos of it here. The charity we raised funds for is called One More City.

It wasn’t until I saw the photos that I realised quite how many colours I was combining on the ride. I decided it would be fun – and appropriate – to wear both clubs’ kit and then, with the gloves, I added a touch of “breast cancer pink” to mark the fact that we were doing this in October, breast cancer awareness month.

The debate over the whole pink thing is quite polarised. In my case, I don’t mind the use of the colour but I do object to the use of “fun” props such as inflatable boobs and pink wigs, pink boas, pink tutus and the like. I get the fact that people want to make public displays of support and/or need an outlet for their own fears or other feelings but I find a lot of it quite tasteless. I think it trivialises, infantilises and sexualises this killer disease.

Colour clash!

Now we’ve got the feminist speech out of the way, let’s get back to Sunday’s ride. The two-club kit combo was bright enough but I hadn’t taken into account the bike and water bottle. That took the whole colour thing to another level!

The bright colours were appropriate, though, as they kind of reflected my mood. I was quite overwhelmed that some 90 people had signed up to do this event. I was definitely feeling the love. The support and sentiment that led to this ride taking place meant a great deal to me on a personal level and on top of that it was great to get these two lovely clubs together. I’m extremely grateful to everyone who helped organise and took part in the ride and/or have supported the One More City charity.

Relaxing on the sofa on Sunday evening with a glass of white wine, I reflected on what a lovely few days it had been. Treatment had gone ahead and both the birthday celebrations and the bike ride had gone really well. It had all been very special.

Then I read on Twitter of the death from secondary breast cancer of Deborah Orr, a huge character and well-known personality from the world of journalism. At 57, Deborah was just slightly older than me; she was also a Glaswegian. Chillingly, she died just months after receiving her secondary diagnosis. She was clearly very ill, but her death came as a shock, at least to me. I suddenly felt terribly sad.

Right there on the sofa, I raised a glass to Deborah and felt even more grateful for the weekend I’d just had.