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.

Completing a challenge amid joy and sorrow

Last Friday was one of those days where you experience a vast range of intense emotions over a short period of time and for hours afterwards they’re all spinning round your head, vying for attention.

It was the day I finished the challenge a friend had set for herself and me in December last year. We were to run, swim or cycle the 192 miles of the Coast to Coast route from St Bees in the Lake District in the northwest of England to Robin Hood’s Bay in Yorkshire in the east. We would do it more or less together – virtually, of course – and we had three months in which to complete it, starting on January 1st.

I decided I would try to run a third of the route and cycle two thirds. I am so slow at running these days but I reckoned running 64 miles and cycling 128 miles over three months was manageable. My friend was running the whole thing. However, once we started, it soon became clear that she would finish in early March. I knew I’d have to up my game to keep up with her.

I’m not going to lie. The running was hard.

I already had a permanent tingling in the balls of my feet and my toes as a result of the nerves being damaged by the chemo I had in 2015 for primary breast cancer. I’ve said before that it’s annoying rather than painful; I am constantly aware of it but it’s just something I live with.

Making things worse, though, was the fact that I think I have developed over the past few months one of the more common side effects of the oral chemotherapy that I’m on as part of my treatment for secondary breast cancer – palmar-plantar or hand-foot syndrome, whereby the palms of your hands and the soles of your feet can become red and sore and numb and swollen and the skin can become dry and blister and peel. Luckily I only have it in my feet and even then I mainly only experience soreness and numbness. It’s more pronounced than the existing tingling (or chemotherapy-induced peripheral neuropathy to give it its officially name) and I’m in no doubt that running exacerbates it. Long walks do too – the friction from walking can result in large and painful blood blisters as the skin is more sensitive than it would usually be.

On one of the secondary support forums I’m on, we refer to it as “cape feet” – “cape” being shorthand for capecitabine, one of the chemo drugs that can cause this particular side effect.

The bottom line is that my feet hurt when I run and the further I run the more they hurt. I therefore decided that I’d do lots of short runs than than fewer, longer runs. If I was meeting a friend for a walk a mile away, for example, I’d run the mile there. I also ran the couple of miles to or back from the hospital a good few times – once after having had blood taken for my latest round of blood tests and another time after having had an MRI scan of my spine, one of the places the cancer has spread to.

Inspired by Parkrun and an associated initiative known as Cancer 5k Your Way, I saw 5k as a good distance to aim for if I was feeling up to it. Parkruns are free, timed Saturday morning 5k runs organised by local volunteers that take place in parks and open spaces around the country and indeed the world. I was a huge fan before the pandemic-related restrictions put a halt to organised outdoor sporting events and, of course, to so much more.

“Cape feet” undoubtedly affects my quality of life. However, as long as I was still able to run, there was no way I was not going to complete the running part of this challenge. I’ve stopped looking at how long it takes me to do stuff now and I’m just grateful that I’m still able to do them. I’ve embraced the concept of “it ain’t what you do, it’s the way that you do it”. Plus, I’d treated myself to a new pair of running shoes and bluetooth headphones!

To encourage myself to get out there and run, I’d been listening to podcasts. Given the foot issue, I realised something more motivational was needed. So I put together two playlists on Spotify – one is called “Mo Is Dancing” (I’m Mo) and the other is “Women in Country”. I love both and it’s always hard to decide which to listen to.

Talking of motivation, I remember on one occasion standing in my running kit outside the hospital after a scan, my feet already throbbing. I was thinking that I really didn’t feel like running home. Then I thought “what if this were going to be your last run?”. That did it, and I set off. Some people say you should live every day as if it were your last. I’ve always thought that was kind of daft because that would mean every day would be exactly the same – and potentially very boring or very exhausting depending on how you’d chosen to spend it. However, it did come in handy that day at least.

It also helped that another online breast cancer support group I’m a member of was holding a challenge of its own throughout the month of February – for its members collectively to virtually walk round the coast of the UK. In addition, my company was running a February Fitness challenge, with around 250 teams from around the world all competing to clock up the biggest number hours of exercise over the month. All the runs and bike rides I did for the Coast to Coast counted towards those challenges too.

In case you’re wondering, running doesn’t seem to cause long-term damage. You do have to put up with some sleepless nights after you’ve been on a run that’s longer than a couple of miles. The symptoms recede to a large degree after a few days of rest (ie no running or long walks) but I have to be honest, the discomfort even when I haven’t been running does still cause the odd disturbed night.

I kept up with my friend by putting in some miles on my bike (mostly outdoors, but there were also a few indoor sessions) whenever she got too far ahead. We decided to run the last few miles at the same time so we’d finish more or less together. We video-called each other a few minutes before our agreed start time and then set off, me in south London on my own and my friend in south Wales with two of her lovely three daughters. We video-called again once we’d finished. It was all quite exciting! And the medal you get for finishing is rather smart.

The challenge was organised by a company called My Virtual Medal (myvirtualmedal.co.uk). You log your miles on a website that tracks where you are on the route. My friend and I had virtual tea and cake together in some lovely coffee shops and stayed in some very nice hotels along the way! Maybe one day we’ll visit some of these places in real life. I also dropped in for a virtual coffee with a friend who lives not far off the route as it enters Yorkshire! I did in fact call her up and we had a good old chat.

It couldn’t have ended in a nicer way. Towards the end of my run, on Tooting Common, my local stomping ground, I bumped into a friend who was also out running. His wife is a senior intensive care nurse at the hospital where I’m being treated. She’s been in the thick of it during the pandemic. Her husband and I hadn’t seen each other in person for a while and we stopped to chat.

Mid-catch up, a dog runs up to me and drops a ball at my feet. I recognise her immediately. It’s Ruby, our friends’ and neighbours’ beautiful black labrador. As it happens, I am chief ball thrower for Ruby when we’re out on walks with our friends. She’d clearly recognised me and wanted to play.

Her “master”, our friend Dave, wasn’t far away. How could I say no? I laughed and kicked the ball for Ruby while half-running the last few hundred metres of my run.

Coincidentally, Dave knows Robin’s Hood Bay really well and told to enjoy myself while I was there!

Dave is a good few years younger than me. He’s been living with Parkinson’s disease for ten years. I’ve mentioned Dave before in various posts. I had the pleasure of joining him and a group of friends last summer on yet another of his fundraising events for Parkinson’s UK – this time walking the Hadrian’s Wall Way during one of those periods when the pandemic restrictions were lowered. Dave’s a bit of a legend in the Parkinson’s community and in the world of darts, having been a presenter of Sky Sports Darts for many years. Check him out on Twitter at @daveclarktv.

While I was writing this post, Dave dropped off a prize – a memento from Robin’s Hood Bay (see photo) – for having completed the challenge. I love it!

Dave and I are among each other’s biggest fans, supporting and admiring each other through adversity. It was therefore lovely to bump into him and Ruby. However, it also felt quite strange, given that just a few minutes before, I’d been standing in front of a bench a few hundred metres away with tears streaming down my face.The bench is dedicated to the memory of a good friend of one of my sons, who took his own life last October. He was 21.

I’d known the bench was there but this was the first time I’d seen it. I’d looked for it before while out running but in the wrong place and coming across it at that point really took me by surprise. The bench was covered in flowers and looked beautiful. I had this most tragic of events in my mind* when I bumped into my running friend and Dave and Ruby soon afterwards. It all felt quite surreal.

I’ll finish by saying that it was good to complete the Coast to Coast challenge early. It meant I was able to finish it before I get the results of my latest set of scans. I had an MRI scan of my spine (the first in almost a year) and a near full-body PET CT scan the week before last (the first since last September). I get the results tomorrow. As we know, there’s no point trying to second guess the results. That said, if they show progression and I have to change treatment, it’ll be better to head into the next phase with a shiny new medal than with 60 plus miles of running and cycling left to go.

*If you’re in the UK and you or someone you know is struggling, you or they can get help from organisations such as The Samaritans (https://www.samaritans.org/) or CALM (https://www.thecalmzone.net/about-calm/what-is-calm/). It’s only by encouraging people – and men in particular – to reach out and seek help that we’ll make inroads towards lowering the numbers of those who see suicide as their only option.

Dodging a bullet

I feel like I’ve dodged a bullet.

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

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

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

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

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

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

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

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

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

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

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. 

It’s back

This is the blog post I hoped I’d never write. A lot of people who aren’t yet aware of my situation will be shocked and upset by it. There are so many people I’d like to break the news to on an individual basis but that’s just not possible. Whoever you are, thank you for reading.

It’s back. I’ve been diagnosed with secondary breast cancer. The primary breast cancer for which I was treated “with curative intent” in 2015/2016 has spread and turned up in my bones – most obviously in my spine* – and bone marrow.

The consultant oncologist who broke the news to me is the same doctor who treated me originally. She knew I knew this very well already but I guess she had no choice but to include it in the conversation; it was “treatable but not curable”.

So here we are, having recently started treatment following a diagnosis of secondary/advanced/metastatic/late stage/Stage IV breast cancer. Call it what you want, they all mean the same thing – a life-limiting illness with a very uncertain prognosis.

I was diagnosed formally on 30 April (though I knew it was coming) and I started treatment on 22 May. I’m on a new combination of powerful and aggressive drugs that are aimed at preventing the cancer from spreading any further for as long as possible. For some women, these drugs are game changers in terms of how long they keep the cancer under control. Like the consultant, we’re hoping they will result in a “durable clinical response” for me. We’re trying to be positive and to focus on the fact that I’m largely well at the moment and we hope treatment will keep me this way for a long time.

The good news is that “bone mets” from breast cancer can often be stabilised and managed for long periods of time, ie for a number of years or more. The fact that it’s also in the bone marrow complicates things. We can but see how it goes. The aim of treatment is to control the cancer, relieve symptoms such as pain, and reduce the risk of fracture – while at the same time trying to maintain a good quality of life for the patient.

It wasn’t inevitable, but anyone who follows this blog will know that I was at high risk of recurrence. Lord knows I wrote about it often enough. While I had in fact made peace with that, there’s very little I wouldn’t give for this not to have happened.

For a long time after finishing treatment for primary breast cancer, I lived in fear of it coming back. I worked very, very hard to get to a position where, while I thought about it often, I really no longer worried about it and just got on with living. Life was good; it was very good. I had conquered my fear and I was in a position of pragmatic acceptance that it might one day return. I’m really proud of myself for having got there. It wasn’t easy.

That mindset of acceptance is really helping me now. It’s a difficult time for us all but life goes on. We’ll aim to keep enjoying it and we’ll keep hoping for the best for as long as we can.

As always, writing helps. I’ve already got a few more posts in the pipeline – about my treatment, how I found out, how I’ve had to cancel big cycling plans I had for this year, etc. You know where to look if you want to read them. Wish me luck.

*As well as being in my bone marrow, the cancer is definitely in vertebrae T8, T9 and L4. There is also a lesion in my left-side rib area as well as “areas of less significant scattered bone disease”. My right hip hurts like hell sometimes but while I’m told there are no obvious signs of cancer there, it could well be related in some way to this new diagnosis – although, equally, it may not.

My final Zometa, a bone density scan and a – clear – biopsy

It’s been a busy couple of months, here in cancer survivor land.

I had my two-year “no evidence of disease” anniversary at the end of February.

Since then I’ve had my final cycle of Zometa, a drug I’ve been taking periodically since finishing active treatment for Stage III breast cancer in November 2015 in the hope that it will reduce the risk of my breast cancer spreading to my bones. I’ve also had a bone density scan that assessed the impact on my bone strength of the anti-oestrogen tablets I’ve been taking daily for more than two years now. That was fine. Finally, I’ve had a biopsy done on a lump in the breast where I had cancer that turned out to be nothing more sinister than – essentially – dead, hardened fat.

My two-years-out-of-treatment anniversary was an anticlimax. I’m not sure what I was expecting but the day – February 26 – came and went, uneventfully.

My final cycle of Zometa in early March was a different matter.

Zometa is the brand name for zoledronic acid, a medicine that belongs to a group of drugs called bisphosphonates. Among other things, it’s used to help prevent breast cancer spreading to the bones in women who’ve been treated for the disease and are post-menopausal. I’m one of those, and I’d been having Zometa initially on a three-monthly and then on a six-monthly basis since my final chemo session in November 2015. I had to go to hospital for it as it’s given as an infusion, ie via a drip.

Walking out of the hospital after my final session, I was completely blindsided by a wave of utter panic. I remember walking along the long corridor to the exit feeling like a support had been kicked away from me and that all that was now between me and a recurrence were those little yellow letrozole tablets I take every night before I go to bed. I was, literally, panic-stricken, but I knew what to do. I know it sounds a bit new-agey, but I stopped, acknowledged what was happening, thought about it for a couple of minutes, then gathered myself and moved on – physically and emotionally. I knew that the benefit of Zometa is in the first three years – this final cycle just about takes me up to three years. My oncologist had already talked it through with me and I knew this was to be my last cycle. It was good to be at this stage. I just hadn’t expected to have this reaction. I’ve said before, you can be fine for ages and then out of the blue something triggers a response like this.

As for the bone density scan, I’m delighted to report that things are pretty much unchanged from the “benchmark” scan I had in December 2015, just before I started taking letrozole. This medicine works to lower oestrogen levels in the body and so increases your risk of developing osteoporosis. My “score”, though, has remained normal. I guess that’s down to a combination of things – including the Zometa infusions (this drug is also used to counteract the oestrogen-depleting effects of letrozole on the bones), the calcium and Vitamin A supplements I take daily (also designed to strengthen bones), and all the weight-bearing exercise (running and tennis) I do. And probably also to some extent the luck of the draw.

Assuming everything continues to go well, I won’t have another bone density scan for another two-and-a-half years, at which point I’ll have been taking letrozole for almost five years.

Around 80% of breast cancers are what’s known as oestrogen-receptor positive (or ER+). This means they need oestrogen to grow. The idea is that, by taking letrozole, any slow-growing or dormant cancer cells that may have survived chemotherapy (and/or radiotherapy) are starved of the oestrogen they need to grow and so they slow or stop growing and/or spreading to other parts of the body. Fingers crossed.

Now on to the biopsy.

I’d noticed there had been a change in the lump of scar tissue that had been there for a long time in my reconstructed boob under a scar from my surgery in December 2015. I’d had a right-side mastectomy, immediately followed by a reconstruction made essentially out of my own stomach fat. A “DIEP flap” reconstruction involves taking excess skin and fat from the stomach to reconstruct the breast. The lump of scar tissue was under one of the scars where the “flap” of abdominal skin is attached to the original skin of the breast.

Anyway, that lump had got bigger and harder and was causing some skin tethering. I decided to mention it to the consultant when I went to get the results of my bone density scan towards the end of last month. She had a good feel and decided the best course of action was an ultrasound scan. After doing the scan and quizzing me about the changes I’d noticed, the radiologist decided the best course of action was to biopsy the lump. There was no point in doing a mammogram as there’s next to no breast tissue there; it’s all tummy fat.

For my part, I decided the best course of action was to try and persuade myself not to worry in the period between having the biopsy taken and getting the results this past Tuesday. The worst-case scenario was that it would be a local recurrence of my breast cancer. Nobody had suggested that I prepare for bad news, but there’s always a sneaking doubt. After all, medical tests aren’t for checking that everything’s ok; rather, they’re to try and find out if anything’s wrong. That’s not just semantics, believe me.

I largely succeeded in my task. However, the fact that I kept my worry under control doesn’t mean I assumed things would be ok. Taking things for granted is a luxury I no longer have but I knew that worrying was not going to change the outcome of the biopsy. Of course I thought about it and of course I had visions of what my mind thought my life might be like if it were a bad diagnosis. But I’ve learnt not to dwell on negative thoughts – at least for not too long at any one time. It’s not always easy, but in terms of managing negative thinking, I’ve come a long, long way.

In the end, it turns out the lump is scar tissue, as we already knew, and fat necrosis, which is new. It’s not unusual for fat in reconstructions such as mine to harden.

At the end of April, a few days before I had the ultrasound, I went up to Scotland and, along with some some 6,000 other cyclists, did the Etape Loch Ness, a 66-mile, closed-road bike ride round Loch Ness that I’d signed up for last October.

What a stunning bike ride and what a beautiful day.

It was especially nice to do it with two of my brothers. I also managed to raise a few hundred pounds for Macmillan Cancer Support, which can only be a good thing.

Amid all this, I don’t think it’s an exaggeration to say a war has been raging in the media here in the UK over the value of routine breast screening.

The heated debate was prompted by the news that over a period of several years a computer flaw had led to up to 450,000 older women in England and Wales not being invited for what should have been their final routine NHS screening. Computer modeling suggested that up to 350 women may have had their life expectancy shortened as a result.

The experts had a field day. Some cried scandal and demanded that every single one of the affected women who were still alive be called for screening as soon as possible. Others insisted screening did not save lives overall and said that women who missed appointments should “carry on with their lives” and only contact their doctors if they experienced symptoms indicative of breast cancer.

No wonder people are confused and angry. It’s hard to accept things aren’t always black or white.

As for me, I’m not taking any chances. I’ll be going along to the next scheduled mammogram on my healthy breast, in December.

I hope things are quiet between now and then – and indeed that they stay that way.

 

A half marathon and feeling grateful

There I was at 10am this morning, running along the banks of the River Thames in the freezing cold, trying desperately to focus on something other than 1) just how bitterly cold it was and 2) the residual peripheral neuropathy I have in the balls of my feet and toes that’s a side effect from the chemo I had as part of my breast cancer treatment well over two years ago.

Peripheral neuropathy is a horrible mix of numbness and pins and needles; I’m mostly just vaguely aware of it but it gets considerably worse 1) when I’m running and 2) when it’s cold. It’s worse on my right foot than on my left.

Bit of a double whammy on the foot front, I was thinking as I ran.

I was only a couple of miles into the 2018 Hampton Court Palace Half Marathon and I knew it was going to go badly if I didn’t manage to divert my thinking to something more positive. So I started thinking about all the people who’ve helped and supported me through what I can only call the shitstormy periods of the past two and three quarter years.

Don’t get me wrong, some of that time has been brilliant. In fact, quite a lot of it’s been brilliant, but some of it’s been pretty damn tough. But it would have a lot tougher without the amazing support I’ve had, from many, many different people. Thinking about all that cheered me up no end. I started writing it all down here but it was getting so long that I decided it deserved its own blog post.

So what’s gone down over the past (almost) three years? Diagnosed with Stage III breast cancer (Stage IV is treatable but ultimately terminal) in July 2015, followed by seven months of treatment involving chemo, mastectomy and lymph node removal, and radiotherapy. High risk of recurrence and many, many months post-treatment trying to find a way of transferring my fear of recurrence from the front of my mind to somewhere less harmful. It’s sometimes still an issue, in fact. [The Scottish comedian Billy Connolly helped recently on that front. He’s got Parkinson’s disease and I heard him say not too long ago that his condition is the first thing he thinks about every morning when he wakes up so he makes sure his second thought is something nice. I bear that in mind when I feel that fear of recurrence creeping back.] Then, late last summer, just as I felt I was really moving on, I was diagnosed with malignant melanoma. Thankfully it was very early stage, but it involved two rounds of surgery to my right calf which amounted to several months of enforced inactivity.

Back to this morning’s run. Having spent an uplifting however long thinking how fortunate I was, I then focused on the fact that I was able to even contemplate doing this half marathon was cause for celebration. The wound from the surgery I had on my calf at the end of November had healed so well that I was able to start running again in mid-January.

There are a lot of people to thank for a lot of things, as you’ll be able to read when I get round to writing them all down. Special thanks, however, goes to my husband Andy, who surpassed himself today – as he has done so on so many occasions over the past few years. Not only did he drive me to Hampton Court Palace this morning at 7.45am, he also came to pick me up at the train station on the way home –  with a flask of steaming hot soup. I can’t describe how welcome that was. To give you some idea of just how cold it was, it took me 20 minutes after I’d finished the half marathon before I had enough feeling in my fingers to be able to use my phone.

Andy would have been to cheer me over the finish line too but I’d said I didn’t want that.

As everyone will know, the brilliant astrophysicist Stephen Hawking died this week at the age of 76. He’d been diagnosed with a rare form of motor neurone disease as a young adult and was told he’d be dead in a couple of years. He’s quoted as saying: “My expectations were reduced to zero when I was 21. Everything since then has been a bonus.”

I was 52 when I was diagnosed with breast cancer. My expectations were far from reduced to zero, and not everything since then has been a bonus. I’m pretty sure it wasn’t for Stephen Hawking either after his initial diagnosis. Having run a good part of 13.1 miles this morning contemplating the good things in my life, though, I know where he was coming from.

Job done. Cycling for seven hours and smashing my fundraising target

The big day has come and gone. On Sunday July 30th, I completed the mass participation 100-mile bike ride through London and Surrey that I’d signed up for in February, raising in the process almost £2,600 for the breast cancer charity, Breast Cancer Now.

Job done, then. For my efforts, I get a very nice medal and the satisfaction of knowing that I’ve raised for Breast Cancer Now an amazing 399% of my initial target of £650 – a grand total of £2,595. I’m delighted to have raised so much and I’m feeling humbled and a little overwhelmed by the support – financial and emotional – I’ve had from friends, family, colleagues, etc, and also in some cases from people I’ve never even met.

The ride took place 17 months after I finished treatment – chemo, mastectomy with immediate reconstruction and radiotherapy – for the breast cancer that I was diagnosed with in July 2015. My friend Juliette and I rode together and crossed the finish line on The Mall in front of Buckingham Palace just over seven-and-a-half hours after we’d set off from the Olympic Park in east London. Excluding snack and loo stops, we completed the ride in six hours and 56 minutes, just within the seven-hour target we’d set ourselves. Was it hard? Well, it could have been a lot harder. We’d done a lot of training and it clearly paid off. Also, we rode at a steady pace rather than raced. Did I enjoy it? I loved it. I swear I had a smile on my face for much of the ride.

The event was the Prudential Ride London Surrey 100. There were some 23,000 cyclists doing either the full 100 miles or a shorter 46-mile route. The atmosphere among the riders was incredible. I was interviewed by Breast Cancer Now an hour or so after finishing for a video the charity was putting together. I was still on a high, but the questions they asked brought me right back down to earth and made me focus on the main reason I was doing the ride. It wasn’t just about getting fit and it wasn’t just about wanting to feel good about myself. It was about raising money that will help fund research into a disease that kills around 11,500 women and a few dozen men in the UK alone every year and about raising awareness around secondary breast cancer. I feel honoured to feature in the resulting video. You can see it here on YouTube.

Juliette and I couldn’t have done the ride any faster and still have been comfortable. There had been heavy rain much of the previous day and overnight but the weather on the day was perfect. We felt good all the way round, heeding the advice we’d been given to snack and drink at regular intervals. The hills in the Surrey section of the ride were tough but I’d been up two out of the three in training so knew I could do them. The challenge was negotiating them at the same time as hundreds of other cyclists – some walking, some going slightly more slowly than you, some slightly faster and others whizzing by as if nobody had told them they were on a hill!

There were some very obvious highlights:

• Seeing friends (a huge shout-out here to Sarah and Adele!) and family along the route. I hadn’t anticipated just what a thrill that would be.
• The cheering from the Breast Cancer Now stand on the way out and on the way back through Kingston. It was loud and uplifting and we could hear the shouts long after we’d passed the stand!
• The support from the public along the route. The Breast Cancer Now cycling jersey is very distinctive with large white dots on a pink background and people would single you out and call out in support.
• The camaraderie among the more than 200 cyclists riding for Breast Cancer Now. If you passed or were passed by people wearing the team jersey, you’d have a quick word or at least exchange an empathetic smile or nod. Every time it happened, I’d wonder what their story was.
• Making it up all the hills.
• Passing the 74-mile mark, as that was the furthest I’d ever cycled in one go until that point.
• The pace picking up with 30 miles to go, when the last Surrey hill was behind you and you realised you had plenty of energy left and you were – relatively speaking! – on the home straight. There was just one hill after that, and, at 91 miles in, it was a bit of a toughie.
• With under 10 miles to go, stopping for a photo outside the centre in Wimbledon where I had the chemotherapy and radiotherapy parts of my treatment. I just couldn’t resist. It felt good.

It was great to meet up with Juliette’s husband, Tim, at the finish line. Best of all, though, was hearing and then seeing my husband Andy and younger son Finlay at mile 97 (my older son Jamie was working and couldn’t make it). I’d expected them to be at the finish line and it was fantastic to see them here. The photo they took says it all.

Everything came together at the right time. I had plenty of willing volunteers to train with in addition to Juliette (Sharon, Jane, Elisabeth and Caroline deserve name checks in this regard). Special mention has to go the Balham Cycling Club, a local cycling club that was originally set up in 1897 and was reformed shortly before I started training. The club rides I went on really helped build up my confidence… and fitness! There was yet another helpful coincidence. Some good cycling friends who live close to the Olympic Park where the ride started invited us to stay with them the night before the event. Not only did they cook a delicious, carbohydrate-loaded meal for us that evening, they made breakfast for us on the morning of the ride and even escorted us to the Olympic Park in plenty of time for our 7.44am start. Thanks for that, Jane and Matt.

Some people tell me I’m amazing. It’s flattering and I know what they mean, but I’m really not. I’m doing what I need to do to produce something positive from the very negative experience that is breast cancer. It’s gratifying to have raised so much money for Breast Cancer Now. On a personal level, this has been an important part of my recovery. Doing the ride has brought some sort of closure. Two years on from my diagnosis, I no longer feel I have anything to prove.

We went on holiday the day after the bike ride. While we were away, I finished a beautiful book I’d been reading called Days Without End by an Irish writer, Sebastian Barry. The title refers to that period in your life when “time was not something we… thought of as an item that possessed an ending, but something that would go on forever”. A traumatic event such as a cancer diagnosis doesn’t half bring it home to you that time does indeed have an ending.

At one point the protagonist in the novel reflects on “things that give you heart” and says “better note them in your head when you find them and not forget”. The support that people gave me in the run-up to the ride most definitely falls into that category. Elsewhere, the same character says that “Man’s memory might have only a hundred days in it and he has lived thousands”. For me, I’m pretty certain the day of the ride will be one of my hundred.

To those who’ve already sponsored me, I’d like to say another huge thank you. Your donation will help Breast Cancer Now move towards achieving its objective that by 2050, no-one will die of breast cancer. If you’d like to make a donation but haven’t yet done so, it’s not too late. You’ll find my fundraising page here: http://www.justgiving.com/maureen-kenny.

If cancer’s a gift, you can have it right back

Precisely one year ago today, I had my final radiotherapy session, thus ending the hospital-based part of my treatment for breast cancer. I couldn’t let the occasion pass without writing something. Here goes.

Each to their own, but I want to say for the record that it’s beyond me how anyone can view cancer as a gift.

Everything changes when you get a cancer diagnosis. “Whatever your prognosis, whatever your hopes, whatever your personality, the second that you know that you have cancer your life changes irrevocably,” says Peter Harvey, a now retired consultant clinical psychologist whose essay on life after cancer treatment is one of the best things I’ve read on the subject.

Yes, good things happened to me as a result of having had cancer. I met some great people, made new friends. A huge amount of love, affection and support came my way. I learned a lot. I wrote. And as you’ll know if you follow my blog, I’m enjoying the benefits of the positive lifestyle changes I made as a result of my diagnosis.

I accept that I’ve experienced to some extent what’s called post-traumatic growth, ie positive change experienced as a result of the struggle with a major life crisis or a traumatic event. But that’s not the point. I’d really far rather not have experienced the trauma in the first place.

You do come out the other end of your cancer treatment with a certain freedom you didn’t have before. Lots of things that I would have worried about before now just don’t bother me. On other levels, though, despite trying hard not to, I still sweat the small stuff. I still get annoyed at things I know are really not worth getting annoyed over. I’m very aware now that you do only live once but, trust me, I really haven’t had a big spiritual awakening like some people who’ve had cancer (I still can’t bring myself to use the term “survivor”) claim to have had.

A friend asked me a while ago if I thought cancer had changed me. In fact she may have said damaged rather than changed. I pondered the question and said I thought it had made me sadder. I’ve thought about it a lot since and I’d say that’s a fair assessment.

I’m aware the bottom line is that I’m alive. I’m hugely grateful to the doctors who treated me and to all the other people who had a part in my care. I’m hugely grateful to the family and friends who supported me during treatment and beyond. But that doesn’t mean I’m grateful I had a disease whose treatment is, frankly, brutal and leaves you at risk of serious side-effects for the rest of your life. I’m not grateful I now have to take anti-oestrogen tablets every day for ten years or more that increase your risk of developing osteoporosis and womb cancer. And finally, I’m not grateful I had a disease that can hide undetected in your body for years and come back at any point and ultimately destroy you.

One year on from finishing what’s called “active” treatment (“…3, 2, 1 and relax. Congratulations!”), I’m well into what Peter Harvey calls “the long, slow process of putting [your cancer] in the right box in your life – not forgetting about it, not denying its importance or power, not pretending it didn’t happen”, but incorporating it “into your own life pattern and experience in such a way as to not interfere and interrupt any more than it has to”.

The impact cancer has on you as an individual is just one part of it, though. A cancer diagnosis doesn’t just affect you. It has a massive impact on those around you. Wouldn’t saying it was a gift be insulting to them?

Everyone has their own way of coping. If some people do that by viewing having had cancer as a gift, fine. As for me, I’m pretty sure I’ll never feel that way. I’m not sure I’ll ever want to feel that way. At most I’ll concede that if cancer is a gift, it’s one where you know the second you open it that you’ll be taking it back pdq to exchange it for something you actually like and are happy to take possession of.

 

 

 

 

 

Defying gravity – well, one of them is

I need to say at the outset that this seems such a crazy thing to be writing about. I never thought in a million years that I’d be considering having a breast lift. On just one side. You are allowed to laugh. Believe me, I have, lots. That in itself, I guess, is something to be thankful for.

OK, background first. After finishing four months of chemotherapy for breast cancer, I had a right-side mastectomy last December followed by an immediate “own-tissue” reconstruction known as a DIEP flap reconstruction. This is a major operation involving complex microsurgery in which skin and fat is taken from your abdominal area and used to build a natural-looking breast after mastectomy.

A key benefit of an own-tissue, or autologous, reconstruction over an implant is that it changes with the rest of your body – in particular your healthy breast – as you gain or lose weight and as you get older.

At least that’s the idea, but here’s the rub. It seems that the radiotherapy I had after surgery to reduce the risk of my cancer coming back has robbed the reconstruction of at least some of the elasticity it otherwise would have had. Don’t get me wrong, I’m really happy with it and it looks great. Don’t just take my word for it. I had an ultrasound scan on it recently and the doctor performing the procedure remarked admiringly as she rolled the probe over it that it looked “just like a real breast”. I almost said “Thanks” but stopped myself. After all, the credit’s not mine. The doctor asked who’d done it and we agreed they’d done an amazing job.

It does indeed look “real”, but the radiotherapy damage means it may not change very much from here on in. I met with the consultant plastic surgeon earlier this month, three months after our previous appointment, and she said what I’d already pretty much worked out for myself, that the symmetry that we hoped would come with time (Looking forward to a “much more symmetrical overall shape”) was not now going to happen… at least not without surgical intervention.

Things have undoubtedly continued to improve since I last saw the surgeon. The skin tethering of around an inch long down the right-hand side of the reconstruction and the scar tissue where the underarm lymph nodes were removed are less pronounced. And there’s very little – if any – swelling left in the reconstruction. But I’m pretty lopsided. And let’s face it, that’s only going to get worse. I’m 53 and I breast-fed my two children. The reconstruction may be defying gravity but the real boob on the left is most certainly not!

I wrote back in April about the potential side effects of radiotherapy on reconstructed breasts (Side effects you really don’t want to think about) so I can’t say I didn’t know this could happen.

I’m quite conflicted about the whole thing. I know I said before that I could live with less than a perfect match. The practical side of me knows the main thing was getting rid of my breast cancer and that there’s more to life than having symmetrical boobs. There’s no denying, however, that it would be nice to be matching once again. Also, the inquisitive side of me would love to see what is in fact possible. As I said to the plastic surgeon, one part of me says why bother doing anything at all, but another part of me is tempted to give you free rein to do whatever you think would be appropriate. That would be a lift on the left and some fat grafting on the right, with fat taken from my hips, to try and even out the area on the reconstruction with the tethering and the scar tissue nearer my underarm.

The pull to be like you were before is quite strong. I know that sounds strange coming from me, given that I really did very seriously consider choosing the “flat” option. I have nothing but admiration for those women who actively make the choice to go flat and stay flat and who are, as it were, “flat and proud”. I totally get the explanation that American comedian Tig Notaro gave when she decided against reconstruction after her double mastectomy. Why on earth would you go through such intense procedures just to have fake boobs, she said. I know there’s a lot more to it than that – and I mean a lot – but I get what she means.

My own decision on whether to have revision surgery or not would be a bit easier if I didn’t have what’s known in the business as wait for it… “good in-bra symmetry”.

It would also be easier – and this is key – if they hadn’t made such a good job of the reconstruction in the first place. That is so clearly not a complaint but it helps explain my dilemma. For example, there are no visible scars on the reconstruction. The scars are in the “intrammary fold”, where the breast and chest meet, so you can’t normally see them. With a breast lift, or mastopexy to give it its proper name, you inevitably have visible scars. It depends on the type of lift you have, but if you want to know exactly where they can be, click here.

I know I heal well – if you saw how faint the horizontal hip-to-hip scar I have from the original reconstruction operation is now, almost 11 months on, you’d see what I mean. The scars following a breast lift would fade in time too, but they’re unlikely ever to disappear completely. So do I really want to disfigure my good boob in the first place? Especially when there are no scars visible on the reconstruction. Then again, I have scars in lots of other places and I’m quite fond of them. They all tell a story – from the two big circular burn scars on my lower left leg from a childhood run-in with a radiator to the one under my chin from just a few years ago when the dry cleaning I’d just picked up got caught in the front wheel of my bike and I flew off over the handlebars in spectacular fashion.

To add to those I now have the hip-to-hip scar and a scar under in my right underarm where they removed some cancerous lymph nodes.

One of the big things revision surgery can be for is nipple reconstruction. Since I had a nipple-sparing mastectomy, that’s not relevant in my case. Also, sometimes the abdominal scar needs revising; mine doesn’t. Or lumps of dead fat tissue develop in the reconstruction that need removing; I have none of those either.

But there’s more in the against camp. With a breast lift, there’s a small risk of reduced or complete loss of sensation in the nipple/areola, often temporary, sometimes permanent. Given that there’s no sensation at all in any part of the whole reconstruction (On very intimate terms with three new people), I do wonder if that’s a risk too far. In addition there’s the recovery period to consider, and the inherent complications of surgery. You’ve also got to bear in mind that nature will again take its course once you’ve had the lift; that lifted breast ain’t gonna stay lifted forever.

Anyway, I don’t have to decide any time soon. Part of me says wait a while and go for a lift when the good breast really has gone south! Or perhaps I’ll end up not doing anything at all. In the meantime I think I’ll park this particular issue and just get on with living life. And on this particular Sunday morning, that means a league match down at the tennis club. Wish me luck!