Covid, etc

Note: I updated this post on April 15th to give a more realistic picture regarding what was happening cancer-wise even before I got Covid.

I managed to avoid it for the best part of two years, but Covid finally caught up with me. I had a mild dose and I seem to have recovered well. Of the five days that I was out of sorts, there was just one day when I felt really rough.

I was more upset about the fact that a session of chemo had to be cancelled than about the fact I had Covid. The only thing worse than being on chemo is not being on it when you should be.

It didn’t end there. When I next went to the hospital to start back on chemo, they took my temperature at the entrance to the treatment unit as they always do. It was sky high. I hadn’t realised. Almost immediately it was decided I couldn’t possibly have treatment. Several hours later, I was tentatively diagnosed with a bacterial infection and sent home with a seven-day course of antibiotics. I had now missed two chemo sessions – the equivalent of a whole cycle. I felt lower then than I had felt in a long time. I reckoned the last thing my cancer needed was a free rein to cause even more havoc than it’s already caused.

Back to Covid. After testing positive, I took up the offer of one of the new antiviral drug treatments for Covid that are now available for “clinically extremely vulnerable” individuals such as myself. There’s no way of knowing whether the drugs made a difference but my dose remained mild and I’m glad I was offered them.

I sent off the priority PCR test that I had at home soon after testing positive on an LFT. The NHS has been issuing these priority kits to people classed as CEV as part of a programme to get us tested quickly if we develop symptoms and, if positive and if appropriate, onto one of the new treatments. 

The drugs have been shown to reduce the risk of CEV individuals with mild to moderate Covid from progressing to severe disease and all that entails – hospitalisation and worse. They have to be started within five days of you developing symptoms. 

It was all very efficient. I was notified of a positive PCR result less than 24 hours after sending off the test. I got a call some hours later from an infectious disease doctor from the Covid Medicines Delivery Unit based at the hospital in southwest London where I’m being treated for my secondary breast cancer. I took delivery of a five-day course of an antiviral treatment called Paxlovid that evening and I started taking the tablets immediately. I started the course around 2.5 days after developing my first symptom.

Paxlovid is the brand name for the treatment, which is a combination of an existing HIV drug called ritonavir and a new antiviral drug called nirmatrelvir. The former helps the latter stay active in the body longer.

These are strong drugs. As the patient information leaflet says, “not many people have taken Paxlovid” and “serious and unexpected side effects may happen”. Within the CEV category, there is clearly a broad spectrum. Currently, I am clearly not at the most-at-risk end of it. Nonetheless, I decided to take the extra help.

Those of you who follow this blog know that I really only fully shielded for a few weeks at the very beginning of lockdown, back in March 2020. I did take care, adhering to guidance on social distancing and avoiding shops, supermarkets and public transport for a very long time, for example. However, I jumped at the chance to get out and exercise, socialise and travel as soon as it was allowed. With the Omicron variant being so transmissible, I’m aware I certainly could have been more cautious over the period when I must have caught the virus.

I know people with no underlying health conditions who’ve been far more cautious than I’ve been throughout the whole pandemic. Everyone decides on their own risk threshold but I do think that many people who were classed as CEV and who shielded for many, many months – and who indeed may be still shielding – were done a disservice by the government. Blanket guidance was issued for what very clearly was not a one-size-fits-all situation.

I was quite happy self-isolating while I had Covid. I work from home and there are some weeks where I don’t leave the house for a few days at a time anyway other than to get fresh air or meet friends locally. My symptoms were a sore throat, a headache and tiredness. I slept through most of the day I felt roughest. I’m quite happy in my own company so I didn’t suffer on that front. I listened to a book on Audible, my first time. I recommend the book – Unsettled Ground by Clare Fuller. It covers issues such as homelessness and it took on a special resonance, reading it as I was in the comfort of a big, warm, comfortable house.

My husband kept me fed and watered throughout (as he does anyway, it has to be said). He too likes his own company. He asked me on Day 5 when I thought I might stop self-isolating. When I said “possibly tomorrow”, he quipped back “steady on, there’s no rush”. Cheeky or what? In the end, I was in isolation for seven days.

The self-isolation was fine logistically but the disruption it caused was hard to deal with, emotionally and practically. Among other things, I had to cancel a trip to Glasgow that I’d really been looking forward to. I felt I was letting a lot of people down by not going. I had to send multiple begging emails in an effort to get refunds or credit vouchers for the cost of unused train tickets, hotel reservations and theatre tickets. I also had to rearrange or cancel several appointments or events in London.

I currently have treatment with intravenous eribulin at the hospital on Day 1 and Day 8 of a 21-day cycle. I have blood tests on Day 7 and Day 21. I also tend to see the consultant on Day 21 or Day 1. When you’re tied to the hospital so much, you have to organise your time really carefully. I’ve become very skilled at this but the slightest change to what you think is going to be your routine can cause havoc. For example, the upset to my chemo routine caused by these recent events in combination with a rescheduled PET CT scan will mean having to cut short a trip to Spain in the run-up to Easter, with the extra cost and inconvenience this entails. First-world problems certainly, but they’re still problems. I was so low and frustrated at one point that I told my husband I wasn’t booking anything ever again. That’s how bad it was. That didn’t last for long, you won’t be surprised to read.

It doesn’t look like the four weeks I went without treatment made much difference to my situation. Having been at its lowest level since I was diagnosed almost three years ago, my tumour marker level had already started to edge up even before I got Covid. It continued to rise during my time off treatment and it’s risen again since I’ve been back on chemo. Nothing about that is good in any way.

More positively, I haven’t needed a red blood cell transfusion since January 17th. I started on eribulin on December 1st last year. Given that I’d been having transfusions at least monthly for almost a year, I’ve been delighted at this outcome. Even here, though, while my haemoglobin level went up, it didn’t stay at that level and has been slowly falling – again even before I got Covid.

Rising tumour marker levels and falling haemoglobin levels. That’s not a good combination.

As I’ve said before, I’ve generally largely felt really well on this chemo. In fact, I would say it’s been the easiest of all five treatments I’ve had in the past three years.

I have had a couple of MRI scans done in recent months on a specific area to check for problems there but I don’t want to dwell on that here.

Also, I will find out for sure soon whether my cancer is now spreading elsewhere; my first half-body PET CT scan since starting on this treatment is scheduled for April 14th. It was meant to have been on March 12th but the scanner was broken and the appointment had to be rescheduled.

Covid and the subsequent infection – followed by a rotten cold, because I hadn’t suffered enough – didn’t spoil everything.

The four of us (my husband, our two boys and I) still managed to get away to the French Alps for a few days’ skiing that coincided with my husband’s 60th birthday. We had a fabulous time. It was so lovely that we were able to spend this important milestone together, in the place where we’ve had such fabulous family holidays in the past.

I then went to the beautiful Spanish island of Mallorca and joined for a few days a women’s cycling camp I’d been to a few times before; I did precious little cycling but the achievement was doing any at all.

Even going was a big deal. I was so deflated at having to miss a second session of chemo that I totally lost my mojo and couldn’t see myself summoning the energy even to pack, never mind get on a plane. My husband persuaded me to go and I’m very glad he did. I didn’t do any group riding; that was never in the plan. However, despite not having been out on my bike back home since last October but hugely inspired by the enthusiasm of the other women on the camp, I hired a bike. Among other things, I did a short ride to a beautiful cove that I’d never have visited had I not been on the bike. It felt unbelievably good to be on the bike again. I got to spend some time with a friend from London who was also there, hang out with some women who are members of Bella Velo, the women’s club I’m still a member of here at home, and see again some women I’d met before on previous camps run by the same lovely company, Mellow Jersey. I am so grateful to Emma and Tony of Mellow Jersey for suggesting I come out. The last time I was there was right at the start of the coronavirus pandemic, when in very dramatic fashion we had to evacuate the island from one day to the next.

Finally, just last weekend, I made it up to my native Glasgow for my older brother’s 60th birthday party. It was such a joyous occasion, filled with so much positive energy. It’s not often my five brothers and I all manage to get together at the same time and it always feels very special when we do. I think the last time we were together may have been at our mum’s funeral in September 2020, mid-pandemic. The pandemic is very much still with us, with rates particularly high in Scotland. Regardless, the party went ahead and there was lots of dancing and singing – including a Karaoke rendition by my older brother and me of an old family favourite, The Gambler, that would have had the original singer Kenny Rogers turning in his grave!

All three trips were priceless, especially as it really wasn’t certain that any of them would happen pretty much right up until the last minute.

I’m relieved to be back on chemo, even though I’m aware I may not get too much more out of this particular one. I’ve had both sessions of Cycle 6 of eribulin and am now a few days into the two-week break.

Regardless of what the PET CT scan shows, it appears that an unconnected issue is brewing that may need addressing in rather a brutal way. Thus the MRI scan.

Back to today, though. One son is back home from uni for the Easter holidays and I’m already enjoying basking in his presence. Also, I’m looking forward to heading off to Spain next weekend where my husband and I will spend time with some very good friends, eat some good food and hopefully feel some sun on our shoulders.

Choosing to go bald

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

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

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

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

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

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

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

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

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

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

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

Les Gets, French Alps

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

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

Heated outdoor pool at Hampton, southwest London

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

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

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

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

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

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

From one chemo to another

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

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

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

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

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

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

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

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

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

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

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

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

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

So what is this new treatment? 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Two days in October

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

19 October

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

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

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

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

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

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

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

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

20 October

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

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

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

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

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

A tale of two weeks

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Salted peanuts, citrus fruits and vinegar – they’re all back on the menu!

I am both relieved and happy to report that the two dreadfully painful mouth and tongue sores that I’d had for the past couple of weeks have gone.

The sores were a side effect of one of the two new drugs that I started taking just over three weeks ago for the secondary breast cancer that’s in my bones and bone marrow.

I made it very clear in my previous post just how awful these sores were. These past few days, though, I’ve been eating salted peanuts again – a favourite snack to accompany a pre-dinner drink. Not just that, I had an orange earlier today for the first time in almost three weeks. Finally, I am happy for my husband to start putting vinegar in the salad dressing again! 

Everything is back on the menu. At least it is for the moment. Mouth sores can come and go while you’re taking this drug – everolimus (Afinitor) – so we’ll enjoy this mouthsore-free period for as long as it lasts. I’ve been mouthwashing assiduously with the two rinses the oncologist prescribed for me. I guess I’ll continue to do so as a preventative measure.

Also this past week, I had the stitches taken out from the two wounds I have from the skin lesion removal procedures I had a few weeks ago. The wound on my right calf has healed beautifully but the one on the sole of my right foot has not. There has been a certain amount of discomfort associated with the “non-healing” and it means I’ll be off the tennis courts and off the bike for yet another couple of weeks. 

In case you’re wondering, yes, it was indeed painful having the stitches removed, especially those in my foot. I had to ask the nurse who was removing them to stop two or three if not four times so I could take a breather. In the end, the nurse had to call in one of the doctors – an expert in stitches removal apparently- to finish the job.

How painful was it? Well, as we all know, pain is very hard to measure objectively. However, I suspect that if it had been a person very close to me who’d been having this done, he might have fainted! He knows who he is – it’s not hard to guess his identity! – and he’s ok with me writing that. I did check!

I was due to get the results of the biopsies they did on the removed tissue on Thursday this past week, but instead I got a phone call to say the report’s not available yet.

Away from the medical stuff, we’ve been continuing to enjoy the easing of the pandemic-related lockdown restrictions. 

We’ve been out and about, enjoying the late Spring. Indeed we had a very eventful experience just a couple of days ago, during a trip to the beautiful space in southwest London that is Richmond Park.

I can’t remember the last time I was in the park without my bike; regular readers of this blog will know that it is a great place for cycling.

This time, however, my husband and I were on foot. We were going specifically to see the annual display of camelias, azaleas and bluebells in an area of the park called the Isabella Plantation. (There were lots of other flowers too, but I’m afraid my flower-identifying knowledge is extremely limited.)

Walking though the park after we’d seen the flowers, we came across a family of Egyptian geese.

When we first encountered this charming group, there were eight goslings and the mother was trapped inside a small enclosure in the park (photo on the left).

The father was outside the enclosure, unable to help. Both adult birds were clearly distressed – there was lots of squawking and heavy breathing. 

As it turns out, I was instrumental in facilitating the release of the mother, upon which the family hotfooted it towards the nearest pond (photo on the right). It’s a long story but the “rescue” was enabled by the actions of two helpful but distinctly underwhelmed members of the Metropolitan Police who had the misfortune to be in the area at the time!

The pond was about a ten-minute waddle from the enclosure. We followed, taking photos. It was all very cute and exciting.

A happy ending, you may be thinking. Sadly, it wasn’t so. On the way to the pond, disaster struck! To my horror, a big crow swooped down and snatched one of the goslings. As a result, only seven of them made it to the pond. In just a few seconds I went from feeling like a hero to feeling responsible for the death of a gosling. Nature can indeed be cruel.

As for the flowers in the Isabella Plantation, what can I say other than that they are an absolute delight.

In other developments, we’ve booked another couple of trips away over the next month or so – one to Manchester with friends and one to Wales to stay with some very good friends. We’ll catch up with some relatives while we’re in Manchester and, in Wales, I’m very much looking forward to seeing my teenaged goddaughter. That is despite the fact that she has said that, as well as looking forward to seeing me too, she “can’t wait to beat you at chess”. Mmm.

May 17th is an important day in England in terms of the restrictions easing. Museums and art galleries can open again, you can once again eat inside at pubs and restaurants, hotels can fully open again and you can stay overnight with relatives or friends. I’ve already bought tickets for a couple of exhibitions, one of which I’ll enjoy with an old friend who’s coming to London for the day the week after next. Also, tomorrow evening, I’ll be eating inside, at a (hopefully well-ventilated) pub restaurant, with friends, for the first time since last summer.

I’m well aware that we’re far from being out of the woods on the pandemic front – variants of concern, localised spikes in cases here in the UK, the tragic situation in India, etc. However, I’m determined, safely, to make the most of our newly returned freedoms while we have them. I’d like to have been able not to write the last four words in that previous sentence, but I’m sure I’m not alone in thinking that restrictions will come and go depending on how the situation evolves. That said, I tweeted recently that I intended to “carpe the sodding diem” out of this summer. That’s still my plan, the pandemic and my health allowing. 

I am, of course, also well aware that we still don’t know how much protection the vaccines give to people such as myself who have compromised immune systems. I won’t be diving in for big hugs with all and sundry and I think I’ll be steering clear of full-capacity cinemas and theatres for some time to come. I did feel uncomfortable on the London Underground the other day; while almost everyone was wearing a mask, it was much busier than it’s been in the past few months.

Back to medical practicalities. I’m less than one week away from finishing my first 30-day cycle of this new line of treatment. On Wednesday I go to the hospital for blood tests and a chest x-ray; the latter is to see whether there’s any damage to my lungs (another potential side effect). I see the consultant on Thursday for the blood test and x-ray results and to discuss how things are going.

This latest treatment consists of a combination of two drugs – everolimus and exemestane (Aromasin). I take one tablet of each every day. It may still be too early to tell whether they are having an effect as it can take some time for this to show. Other than the mouth sores, the only side effect I’ve noticed is the odd night sweat, similar to those many women get when they’re going through the menopause. They are not pleasant – who wants to have to change out wet nightwear at 2 or 3am? Finally, I wouldn’t be surprised to hear my haemoglobin level has dropped further.

We shall see. For now, though, I’m off to suck on a lemon.

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.

Relax, honey, you’ve passed

This post is in praise of the man who is still making me laugh after some 35 years of partnership.

My previous post was about how a diagnosis of an incurable, progressive, disease gives you an opportunity to reflect on life. Well, this is me reflecting on my relationship with my husband and best friend.

Like any couple who’ve been together for a long time, we sometimes drive each other nuts and bicker over silly things (or is that just us?). On our recent trip to Jordan, we’re wandering round the incredible Roman ruins of Jerash in the north of the country, and I jokingly tell him off for some ridiculously minor infraction.

Jerash

In response, he quips that sometimes he feels he’s still on probation. He smilingly says he’s worried that one day he’ll find out he’s failed and I’ll tell him, as we say in my native city of Glasgow, to “sling his hook”.

This has me doubled over laughing. It makes me laugh every time I think back on it.

We’ve been together essentially since we were 21. We survived living in different cities and indeed in different countries for several years early on. We got married two children and 20 years into the relationship – almost 16 years ago – and he was the one who joked in his speech at the wedding that it had taken him nearly two decades to be sure he’d made the right choice!

The idea that I’ve yet to decide whether he makes the grade is hilarious. As he knows very well. At least I think he does. Just in case, though, I’d like to say for the record that this man who is still making me laugh out loud 35 years on has indeed passed his probation. What’s more, he’s done so with flying colours and deserves the highest distinction going.

Reading Unsheltered in the Dead Sea

Part of the trick to a long relationship is being willing to say sorry quickly after a falling out. It has to be said that it took both of us some time to learn this – and I confess it took me longer than it took him. On holiday, I read Barbara Kingsolver’s latest novel, Unsheltered. In it, one of the main characters says that sorry really is “the word that could never be said enough in the space of one marriage.” I think most people would agree.

Now bear with me on this next part, there is a point to it.

Recently, I’ve increasingly taken to making sure my boobs look level when I’m wearing tight-fitting clothes. When I had my right-side mastectomy in December 2015, I had a reconstruction made out of fat taken from my belly area. The radiotherapy I subsequently had robbed the reconstruction of its elasticity – it’s a known risk – with the result that the right one looks pretty much the same now as it did four years ago and the other one, ie the real one, well, doesn’t. Nature, shall we say, has taken its course. (You are allowed to laugh; we do.)

These days, therefore, it takes some readjusting when I get dressed to get that sought-after “in-bra symmetry” look.

That photo!

Anyway, back to Jordan. It’s late afternoon and we’re wandering through the spectacular archeological sandstone site of Petra. The light is beautiful. He takes a photo of me at the entrance to a cavernous tomb. “That’s lovely,” he says, “I’ll post that.” It’s a close-up, and it’s going on social media. I ask, almost instinctively, “What do my boobs look like?”

What I mean, of course, is do they look lopsided or uneven in the photo? He, very deliberately, looks at my actual chest and replies with a smile, “under the circumstances, not half bad”. We both know what he means and, again, it has me laughing for ages.

I could have kept all this to myself. Shortly after our holiday, however, I happen to find myself listening to the first album in 17 years from Tanya Tucker, one of my favourite country singers from back in the day. There’s a song on it called Bring my flowers now (while I’m livin’).

You may not know this, but I am a huge country music fan. With song titles like that, how could you not be?

Anyway, the song is basically about how if you’re fortunate enough to have people in your life that you cherish, you should let them know that you appreciate them while you have the chance. Because guess what, folks, as Tanya Tucker tells us in the song, “We all think we got the time until we don’t.”

She sings: “Bring my flowers now while I’m livin’. I won’t need your love when I’m gone. Don’t spend time, tears and money on my old breathless body. If your heart is in them flowers, bring ‘em on.” Fantastically schmaltzy, even for country, but a great sentiment. You don’t have to be a rocket scientist to see how those lines hit a massive chord with me.

I’m the one with the incurable illness – secondary breast cancer – and you might think that my drawing attention to this song is to encourage those people who cherish me to let me know they do. In that regard, any of you reading this are indeed very welcome to “bring my flowers now” whenever and in whatever way you want. This post, though, is for my partner, who reckons that under the circumstances, we’re doing not half bad. I couldn’t have put it better myself. This is me bringing him his flowers now. I’m lucky to have him.