Comfortable at home

A lot’s happened since I wrote my last blog. The bottom line is that Ive stopped active treatment against the secondary breast cancer I was diagnosed with in March 2019 and I’m comfortable at home with possibly just weeks left before I die.

That’s such a difficult thing to write and a difficult thing to be living with but I can’t hide from it any longer. And it means I can have those very tender conversations with my beloved husband, sons, brothers, nieces and nephews, friends, colleagues and so many others. I can let everyone know what stage I’m at on my journey through this life.

I’ve had the support of my oncologist and her team every step of the way and frankly I can’t believe I’ve had three such good years since my diagnosis. I can’t thank her enough.

The cancer that was advancing through my body has, sadly, spread even further. In addition to the courses of chemotherapy I’ve been receiving, I’ve also had whole brain radiotherapy. There’s one further chemo available but I’m assured it won’t work and the side effects are brutal.

So for the last couple of weeks it’s been end of life care – at home. I now live downstairs, with all the medical paraphernalia that entails, including the marvellous 24/7 syringe driver that provides me with constant and continual pain relief and anti-nausea treatment.

At various critical times throughout the day, I take steroids to reduce the swelling in the brain, three or four different laxatives to tackle the constipation that the antinausea drug in the syringe driver causes and, critically, an anti-epileptic to deal with any seizures. I have blurred vision, which makes things very difficult. I can only see with any clarity at all things that are at about 8 inches away. If you come and visit me, I’ll only know it’s you by your voice unless you’re within that sweet spot. But at least I’m at home.

It took a long time to get me here from hospital; my last stay, when I was very ill, lasted two weeks. I realised I could die in hospital and I didn’t want that. But they couldn’t discharge me with the symptoms I had as they could only be treated in hospital. I won’t go into detail but I had great difficulty keeping down food and fluids, along with various other serious issues that thankfully have now been addressed. Now I have a team of carers who come in the morning to wash and dress me for the day, the evening to wash me and get me ready for bed so that I will sleep comfortably and during the day to replace the syringe driver when it’s nearly empty. All this had to be in place before I could be at home.

The healthcare teams were amazing in getting me well enough to come home. This time two weeks ago there were days when I barely knew what a phone was.

I am now under the fantastic care of the local hospice. I don’t want to be resuscitated if it gets to the stage where that’s an option. I’ve told my nearest and dearest there’s no need to feel guilty if they choose not to be there or indeed if they want to there but can’t make it. I will either die at home or at the hospice – but not in hospital. 

Life has been so, so good but it’s time to let nature take its course. Accepting that and letting everyone know is such a relief. I’ve had so many beautiful visits, messages and gifts from friends and relatives. They all agree that carrying this knowledge is much better than getting a surprise email or phone call bearing the sad news that I’ve just died. We’ve been able to celebrate our relationships with each other in a way that wouldn’t have been possible had I not been so frank. Friends have weeded and tidied my garden for me; they’ve massaged my feet and hands; they’ve painted my nails; they’ve brought frozen strawberry daiquiris; or we have simply just revelled in each other’s presence.

Those of you who follow my blog may remember I wrote about a wonderful country music song called Bring my Flowers Now (While I’m Living). That’s what’s happening now. I’m genuinely living “with death in mind” and hope that I will have a good death. 

I don’t know if I’m going to be able to continue with this blog for much longer. So let me say now how thankful I am to you all for reading it over the years and for your support. It’s been an important part of my cancer journey, allowing me to organise my thoughts and emotions. Living with advanced cancer is hard, but if what I’ve written has helped any of you, then I’m humbled and grateful.

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.

Restrictions lifting and moving on to the next treatment

Pandemic restrictions are loosening and things are looking up on that front. 

We’ve been limited to meeting up with just one other person outside for exercise since December but now the rule of six – whereby you are allowed to gather outside in groups of up to six, including in your back garden – is back. I’m already taking advantage of it. 

In the fading sunshine one evening last week, my husband and I had beers on Tooting Common at the bottom of our street with some friends who live locally. 

We were all so happy to see each other and to be able to actually sit down and relax and enjoy each other’s company. We’ve been meeting up on Zoom and we’ve had some really fun evenings. However, as everyone knows, it’s really, really, really not the same as meeting up in person. This group largely comprises people who were parents of children who attended the primary school at the time our two sons went there. Before the pandemic, we’d meet up once a month in a local pub. Our boys are now 22 and 20 and it’s been a great way of keeping in touch and maintaining friendships. There are way more than six of us; we did more or less manage to arrange ourselves into groups of six. 

Talking of our sons, one is already back home from uni for the Easter holidays. The other is due back later today or tomorrow. We haven’t seen them in three months. That’s not long compared with a lot of people, I know, but this is longest we haven’t seen each other in person. On Easter Sunday, the four of us will have lunch in our garden with my two London-based nieces. Blankets may be involved, depending on the weather. 

Tomorrow morning I’m meeting up, again on the common, with some other good, local friends, all women this time. We’ll be having coffee and pastries rather than beer! Before the pandemic, we would meet up in each other’s houses once a month to catch up, watch a film and discuss it afterwards. We’ve continued throughout the pandemic, remotely. Someone chooses a film, we have a chat on Zoom then we each watch the film in our own homes and we catch up again afterwards on Zoom to discuss the film. It’s been great. There are five of us in this little group, and I think it’s safe to say we all very much appreciate, and take strength and comfort from, each other. Since last August, the group has experienced three bereavements. My mum died from an infection, one member lost her sister to dementia, and another her husband, tragically to COVID. 

Later on next week, I have a game of tennis planned with my four very special tennis buddies, followed by a birthday lunch for one of them hosted in the back garden of another of them. 

Also in our short-term plans is a drive an hour or so out of London to meet and have a walk with some friends we haven’t seen since last August.

Pubs can serve food outside to groups of up to six as of 12th April. Not only have we managed to make two evening reservations for that and the following week, some friends have invited us to celebrate the 60th birthday of one of them one evening that first week at a pub where they managed to get a reservation. Also, an early supper is in the diary one evening over the next two weeks with the tennis crowd. Finally, the BellaVelo cycling club I’m a member of has booked all the outdoor tables at pub on 21st April and I’m due to attend that too. There can be no mixing between tables but it will still be lovely. 

Finally, we’ve booked to eat out – inside!!! – with four friends on the very first day that’s allowed, 17th May. 

If I sound rather desperate to be out and about again and see people, it’s because I am.

We’re also having a mini revamp done of our garden. That is very exciting, especially as we’ll probably be spending a lot of time there this Spring and Summer.

Staying with the good news, I’m due to have my second dose of the Pfizer/BioNTech COVID-19 vaccine this coming Tuesday. It’s not known how much protection the vaccines provide for immunocompromised individuals such as myself, but it has to be higher than zero, so that’s something. 

On the downside, I didn’t get the best results from my most recent set of scans. 

There are some positives. My secondary breast cancer is still confined to my bones and bone marrow; it hasn’t spread to organs such as my liver or lungs. Also, the cancer that’s in my spine isn’t exerting pressure on my spinal cord. 

The bad news is that the cancer has spread within my bones. It is showing up on scans in places that were clear before. “Disease progression with widespread metastatic disease activity now apparent”, reads the report from the combined PET-CT scan of my body from the top of my spine to my mid thighs. The MRI scan I had of my spine shows “widespread diffuse abnormal marrow signal throughout the spine, in keeping with metastatic infiltration”. That said, “overall appearances [of the spine] are relatively stable” compared to the previous MRI scan I had, almost a year ago.

In addition to there having been progression, the relevant tumour marker level in my blood is continuing to rise and my haemoglobin level has been falling. This means it’s time to come off capecitabine, the oral chemo I’ve been on for the past 10 or 11 months and move on to what will be my third line of treatment since my diagnosis of secondary breast cancer two years ago.

There are a couple or perhaps even several treatment options, each of which comes with its own delightful set of potential side effects. We’re still working out what is best and what is possible. I see the oncologist again this coming week, when we will have some more information to inform what the next steps will be. In the meantime, I’m still on capecitabine.

In light of the scan results, we made a change to the other treatment I’d been on.

With bone mets, the cancer weakens your bones. You’re therefore given one or other of two drugs that are aimed at reducing the risk of what are known as “skeletal-related events”, that is fractures, spinal cord compression, bone pain requiring palliative radiotherapy, and orthopaedic surgery. 

In my case, as well as taking capecitabine tablets morning and evening on a one-week on, one-week off basis, I’d been having monthly injections of denosumab (brand name Xgeva), one of the two above-mentioned bone-strengthening drugs.

On seeing the scan results, my oncologist changed from me from denosumab back to Zometa/zoledronic acid, which has the same aim as denosumab but works in a different way. The idea is that trying something different, even though I’ve been on Zometa before, will have a positive effect. I’m fine with that. My position is that almost anything is worth a go, despite the fact that long-term use of Zometa is associated with a higher risk of dental problems than denosumab, such as sore gums and tooth loosening.

I’d only just got used to giving myself the denosumab injections at home. Now it’s back to the treatment day unit at the hospital every four weeks for an iv infusion of Zometa. The procedure only takes half an hour so I guess I shouldn’t complain too much. However, I hadn’t been hooked up to a drip for more than a year (other than to have a blood transfusion last July) and I have to say it felt weird.

Also, because I don’t do things by half, I’m to have two freckles/moles/lesions/whatever removed and biopsied. The dermatologists who examined me said they don’t think they’re suspicious but they advise removal given my current situation and my history of melanoma. 

One lesion is on the sole of my right foot and the other is on my right calf, near the scar from where I had a microinvasive melanoma removed in 2017. The latter has been there forever; the one on the sole of my foot is new. I contacted my GP, who referred me to the dermatology department at the hospital where I’m having my breast cancer treatment. “I’m here so often I should bring a sleeping bag,” I said to my oncologist when I told her about this latest news. I thought it was funny.

I’m waiting to hear when my appointment to remove the moles will be. 

Since I completed my big athletic achievement in early March, I’ve been taking it easy on the exercise front to give my poor feet a rest after subjecting them to such a pounding in January and February. The throbbing - a side effect of capecitabine combined with pre-existing damage from the chemo I had in 2015 – has definitely subsided but it is so much worse at night than during the day. I could count on one hand the number of proper sleeps I’ve had this month. Getting up in the middle of the night to wrap my feet in a cold, wet towel in an effort to sooth the throbbing is not an uncommon event.

I’ve also been feeling knackered – probably due to a mix of a lack of sleep, the cancer having spread, a low haemoglobin level, general pandemic-related general fed-upness, and – perhaps ironically – not doing much exercise other than walking. Seriously, exercise is known to help reducing cancer-related fatigue. And as we all know, if we can exercise, it does make us feel better.

I’ll give the running a rest for another while, but hopefully I’ll start getting some proper bike rides in soon. As for what playing tennis will do for my feet, I have no idea, but I want to play and so I will. I’m not sure my feet can be much worse than they have already been.

Finishing off, we’ll just have to see how it goes with whatever new treatments I end up on. I was on each of the two previous lines of treatment for almost a year. Let’s see how long I last on this next one. Keep your fingers crossed for me.

Chocolate deliveries, bike rides, giraffes and scans

I have taken delivery of not one but two substantial amounts of chocolate over the past week or so.

How so?

I posted on facebook that I’d had to enlist our elder son to buy me some chocolate because my husband, who’s doing the shopping at the moment, eats too healthily and it just doesn’t occur to him to chuck a couple of chocolate bars in the trolley as he makes his way round the supermarket. It took a while, but at least now he does deign to bring home as standard a couple of packets of biscuits – but still no chocolate bars. 

Now I’m no addict, but I do have the odd bar on an ad hoc basis. However, I can’t currently indulge that habit while we’re in the midst of this coronavirus pandemic. My immunity is low as a result of the anti-cancer treatment I’m on and while I do go outside quite a lot now for walks and to exercise, I generally tend to not to go into shops. So no impulse buying of chocolate bars for me!

The photo I posted of me looking gleeful holding the bars my son brought back for me made a lot of people laugh and sympathise.

A couple of chocolate-loving friends – a huge thank you again, you know who you are! – were clearly feeling my pain to such an extent that they took things a step further and actually sent me supplies. We haven’t laughed so much in ages. My husband says he’s going to post that he’s got a craving for beer.

As you can see from the photo, I am now spoilt for choice. And that’s just one box.

I’ve given some away, the boys and I have been partaking, and the rest are “hidden for safe-keeping”, if you get my meaning. 

On the micro level things are still going largely fine on the lockdown front.

There are the chocolate deliveries for a start. Also, I’ve got most of this week off work and the weather is glorious. The roses in our garden have started blooming; they are gorgeous and there are dozens and dozens of buds, so it’ll only get more and more beautiful. Don’t look too closely or you’ll see all the aphids.

Yesterday I went out for a bike ride with a friend that involved seeking out and tackling the not insubstantial hills of south-east London, around Crystal Palace. There was blazing sunshine, there’s still far less traffic than there normally would be, and we enjoyed some incredible views over central London from the tops of the hills. 

We slogged up a fair few hills (with my friend overtaking me every time) and were rewarded with some lovely descents (with me doing the overtaking here). Before heading home, we bought some take-away coffee and chilled soft drinks and drank them in the welcome shade of a tree in Dulwich Park. It felt like we were genuinely on holiday.

On another bike ride, this time with my husband, we cycled past London Zoo in Regent’s Park and were delighted to see that the giraffes had come out for a stroll. There are two and there’s a sign there with their names on (I’ve forgotten their names*). Like everything else, the zoo is closed but we shouted over the gate and asked the zookeepers in attendance which was which. We don’t know, they told us excitedly, we’re from the other side of the zoo and don’t often get to see the giraffes. Their excitement was lovely to see.

On yet another ride into central London, we enjoyed great views of the river.

Those clear skies are good to see but they’ve come at a dreadful human and economic cost. We must never forget that.

Part of the reason I took time off work this week was that I was already taking time off to have scans. It’s that time again. I had a half-body PET CT scan this morning and tomorrow I’ll have an MRI scan of my spine. Both tests are to check to see whether there’s been any meaningful spread of the metastatic breast cancer I was diagnosed with just over a year ago. If there has been, we’ll be moving on to the next appropriate line of treatment.

I tell myself that I don’t generally get what’s known as “scanxiety”, ie worrying in the run-up to having the scans themselves and then again while you wait for the results (a week in this case). However, I really don’t think you can avoid it entirely.

You think it’s all fine then you realise you’re more argumentative at home than usual – and as those of you who know me are well aware, I’m pretty darn argumentative at the best of times. Or you’ll catch yourself doing too much forward thinking, dwelling on things you usually manage not to think about. Realising I’m doing this is usually enough to bring me back to the present. You just find yourself doing it more often than usual around scan time.

In this particular present, there’s a hedge that’s needs trimming out front. And afterwards, of course, there’s chocolate to be had as a reward!

* The giraffes are called Molly and Maggie, London Zoo told me in a reply to my tweet asking what their names were! I love Twitter when it works like that. Thanks to London Zoo for the reply!

Topping off a lovely few weeks with my 100th Parkrun

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Lucky or unlucky? It depends how you look at it

Understandably, a lot of people get upset when you tell them you’ve been diagnosed with secondary breast cancer. My boss was one of the first people I told, back in April or May. We chatted and she said, sympathetically, that I’d been so unlucky.

She and I both know how serious any type of secondary cancer is. If you’ve been diagnosed early enough, it will be treatable and can be controlled – in some cases for many years – but ultimately it’s incurable. What treatment does is buy you time. 

Instinctively I agreed with my boss. To find out at the age of 55 that your likely prognosis is in years not decades felt pretty unlucky to me.

Almost immediately, though, it occurred to me that that wasn’t actually the case. In fact, I said to her while trying to hold back tears, I’ve been incredibly lucky.

What do I mean by that?

Well, there have been some very sad and difficult times but, broadly speaking, I have not had a hard life.

I have an amazing partner I’ve essentially been with since I was 21. We’ve had and are continuing to have lots of good times together.

I have two lovely, healthy and seemingly happy young-adult children. 

Mum, my brothers and me

I had a happy childhood with loving parents and five great brothers. My dad died just a few years ago but my mum is alive and kicking and clearly loves me to bits. My brothers and I are all still very close. The photo here is from when I was up in Glasgow this summer.

I have two aunts – my dad’s two sisters – out in the US, one of whom is also my godmother. I’m very close to both despite the distance between us. I went out to visit them this past summer, thus the photo below. One of my brothers was there too, from Scotland, and while I know the term “joy-filled” sounds schmaltzy and cliched, I can’t think of a better way to describe the few days we were all together.

My husband’s parents, my in-laws, thought the world of me. We were lucky to have them in our lives for as long as we did.

Outside of the family, I have a godson and goddaughter I’m incredibly fond of. I got to see both of them this summer.

My lovely aunts and me

I have numerous wonderful friends and lots of different friendship and acquaintanceship groups.

We’re financially secure and I have great colleagues and a job I love.

I’ve been able to travel extensively, both on a personal and professional level.

I’ve been responding well to treatment; there was no guarantee I would. 

Physically, most of the time, I really don’t feel like there’s anything wrong with me over and above the standard things any 56-year-old female might expect to have. I’m cycling, running and playing tennis.

Other treatment options will be available once the specific treatment that I’m on stops working. I hope it’ll be a long time before that happens but I’m aware it could happen sooner rather than later.

So have I been lucky or unlucky? Maybe it’s not a question of one or the other. We’ve had our share of troubles and no-one would ever choose to have what I have. Regardless of how well I feel physically at the moment, living with an incurable disease is really tough emotionally. Among other things it’s hard not to feel guilty for bringing this upset into everyone’s lives. 

Healthwise, I can but hope for the best and take the coming months and hopefully years as they come. In the meantime, I’ll try to stay calm and be easy on myself, and keep appreciating and making the most of this life – lucky or unlucky – that I have.

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.

How’s this for awesome?

Here’s an update on the past few weeks. It’s mostly been more than good and a couple of really lovely things have happened to me.

If things carry on at this rate, I may well attempt to cycle the full 100-mile route of the Ride London event early next month.

Here goes.

First off, later today, essentially without there being a break from treatment cycle #2, I start treatment cycle #3 for the advanced breast cancer I was diagnosed with a few months ago.

At St George’s Hospital in Tooting in south-west London, I’ll have two injections of Faslodex (fulvestrant) in my buttocks, I’ll be given the bone-strengthening drug Zometa (zoledronic acid) via a drip in my arm, and I’ll start my next round of twice-daily Verzenios (abemaciclib) tablets.

Each treatment cycle lasts 28 days. I had to have a short break between cycles one and two and I feared there might be another one between two and three – or that we might have to reduce the dose of tablet that I’m on. I’d really rather not have either at this stage as there are some signs that the drugs are having a positive effect and I’m totally paranoid about doing anything that in any way, shape or form might reduce the effectiveness of the treatment.

The reason I had the break between the first two cycles is that abemaciclib had pushed my neutrophil count to below the level that’s considered safe to continue treatment. That’s still happening. To counteract that, I had to self-administer injections of a drug called filgrastim yesterday evening and the previous evening. I’ll do the same again half-way through and at the end of this latest 28-day cycle. Filgrastim boosts the production of neutrophils – the white blood cells that help fight infection – and I inject it in my belly area. I did much the same during chemo nearly four years ago.

Assuming this treatment cycle passes uneventfully, my next trip to the hospital won’t be until near the end of the 28-day period, when I’ll have blood tests in advance of seeing the consultant and hopefully get the go-ahead to start treatment cycle #4. In the time between the two injections, we should manage a ten-day family holiday in Spain.

Re the drugs having a positive effect, my blood test results from Monday show that my tumour marker levels are down – again. A decrease in marker levels during treatment can indicate that the tumour is responding to treatment. You don’t want to get too excited but that’s a positive early sign.

On the pain front, I haven’t needed to use painkillers for weeks now. I have been in no pain whatsoever for a good couple of weeks. I’m expecting potentially to have to take painkillers over the next few days as the fulvestrant and zoledronic acid can cause bone and joint pain.*

There have been some tough moments emotionally, when I’ve started thinking too far ahead. However, for now I’ve become a bit of an expert at pulling myself back to the present PDQ.

Now on to the subject of exercise. Since suggesting in my last blog post that I might take up swimming to make up for no longer being able to run or play tennis, I have been swamped with offers from friends and acquaintances to swim with them – outdoors!

In the past ten days alone, I’ve been for two early-morning swims at Tooting Lido, the big outdoor swimming pool near where I live. I’ve also been to an evening session of open-water swimming at the beautiful Shepperton Lake on the outskirts of south-west London. I’m due to swim again at Tooting Lido early tomorrow morning and at Victoria Docks in the Thames one evening next week. All new and lovely experiences for me. I don’t have the fitness to do front crawl for more than a few strokes at a time but breast stroke is fine.

On top of all that, I managed a 75-mile bike ride last Sunday, with two cycling friends. I thought it was a flat 100k route but we followed a friend’s route and hers was 120k! That’s made me think I should at least try to do the longer, 100-mile route of Ride London, the mass participation, closed road bike ride through London and the Surrey hills that’s taking place this year on 4 August. I got a place in the public ballot but when I started treatment in May, I didn’t think I’d even be in a position to attempt the shorter 46-mile route.

And how’s this for awesome? If you’ve been following this blog, you’ll know I was gutted at having to pull out of a big charity bike ride known as Le Loop that I was planning on doing in France earlier this month.

As part of Le Loop, I was due to cycle Stages 5-7 of this year’s Tour de France route a week before the real thing. A bunch of us from BellaVelo, the cycling community and club based in south west London that I’m a member of, had signed up to do various stages of the Tour as part of this big fundraising event.

It turns out that some of the BellaVelo women who did take part in Le Loop – often riding more than a 100 miles a day in ridiculously high temperatures – wore ribbons with the Scottish flag on on their helmets or bikes or even as hair ties while they were riding. Why? Because they thought it would be “a nice way to include you in Le Loop even though you were unable physically to be there”.

I’m still feeling so chuffed about that. What a kind gesture. That has to be up there with having had a sonnet written for me!

There’s more. Two BellaVelo members are currently riding every stage of the Tour de France the day before the pros. They’re part of a team called InternationElles and they’re doing this amazing feat to raise awareness of inequality in cycling. Anyway, what they’re doing is incredible and so demanding… but they took time out to send me a video of support. That was very cool.

Staying with the cycling theme, it was my 56th birthday recently and my husband gave me as a present a lovely framed photo of the two of us dressed up for an evening out… with a second option – of me with my bike and in full cycling kit – in case I get fed up with his first choice! In the one of me on my own, I’m standing at the top of Box Hill in Surrey. It’s a classic ride for south Londoners and we’d cycled there a few weeks ago to see whether I’d be able to do it. I was delighted that I could. My husband knows how much both photos mean to me. He is a star.

On top of that, on Monday I had the best evening out with three friends I’ve known since my early days in London. I’m the only one who still lives in the capital and this was a very hastily arranged get-together. They’ve been friends with each other since childhood and I’m the blow-in! It was a beautiful, fun-filled, life-affirming evening.

I could go on but I’ll mention just one more thing. A friend has given me a book called the Poetry Pharmacy, by William Sieghart. If you haven’t come across it, try to get a copy. It could change your life.

Plenty of other friends and family members have made other lovely gestures. I massively appreciate them all. I feel surrounded by kindness. People are amazing and it’s good to be alive.

*In the end, painkillers weren’t needed. There was no pain at all in my glutes after the injections and no joint/bone pain at all over the following days.