The best laid schemes… and you really are “a lang time deid”

Spoiler alert: The following post has melancholy overload.

Being Scottish, I’m probably one of the few people alive who knows the ending to the saying by the 18th century Scottish poet Robert Burns that starts “The best laid schemes of mice and men”.

It’s “gang aft agley”, which means basically “often go tits up”. Now perhaps that’s too loose a translation – especially in the context of this blog – but you get the gist.

That’s exactly how I felt when I awoke this morning feeling like death warmed up. In truth, I’d spent half the night awake, sweating, sneezing, coughing and spluttering and when daylight finally came I realised I’d have to cancel all the lovely plans I’d made for the day. It was December 19th, a year to the day after my massive breast cancer operation (right-side mastectomy, lymph node clearance and immediate reconstruction – Saturday’s op – a daunting prospect but a key step on the road to wellness).

Maybe I’m destined to spend every Dec 19th in bed, I thought.

It’s been an interesting few weeks. Among other things, I’d had the first of the annual mammograms and ultrasounds that I’m to have for the next five years (What does follow-up look like?). These were clear. I was determined to make this anniversary a celebration.

So what had I lined up for today?

First of all, I’d booked an early session of physiotherapy so as to get the day off to a great start. There’s still some stiffness in the underarm area and the physio sessions – that I’m still having monthly – really make a massive difference. That was to be followed by a walk on Wimbledon Common with the woman I met during treatment who’s now a great friend. Then I’d arranged a tennis match in the afternoon, after which I had plans to cook a nice family meal for husband Andy and our two boys Jamie and Finlay.

I cancelled the physio, the walk and the tennis before doping myself up with paracetamol and ibuprofen and going back to sleep. I woke up a few hours later, realised I felt considerably better, and thought I’m damned if I’m going to spend today of all days in bed feeling sorry for myself.

Photo 1: Post-op, December 19th 2015

So I got up, showered and headed off to make the most of the rest of the day. It was a strange day and I have to admit I spent a lot of it just reflecting on the 18 months that had passed since I was diagnosed with breast cancer in July 2015. It being the day it was, I tried to focus on how far I’d come in the year since my operation. Pretty damn far, I can tell you. From Photo 1 and this Post-op progress report No 1: Biting off more than I can chew to Photo 2 and this Post-op progress report No 6: If this is as good as it gets, I’ll take it.

Photo 2: Now, every possible Saturday morning

Even more specifically, I knew it was really important that I made myself focus on the fact that the pain I’ve had in my hips on and off for a couple of months is down to nothing more serious than early arthritis in my lower back (it’s all relative, folks). I thought I’d convinced myself that it couldn’t possibly be that the cancer had spread to my bones. However, when I get confirmation following a bone scan that indeed it hadn’t – and that it’s “only” early arthritis and totally unrelated to the fact I’ve had cancer or to any ongoing treatment – the first thing I do when I get back home is pay the deposit on the accommodation for the skiing holiday I’m going on with friends at the end of January. It’s really only then that I realise I’d been holding off from doing that. That fear of recurrence clearly has a very strong hold. Then I wonder whether there will ever be a time I book a holiday without wondering whether I’ll still be healthy by the time the holiday comes. Then I realise it’s ok to feel like that and that I needn’t beat myself up about it.

Driving back home from the shops today – feeling pretty ropey again but also rather smug for having completed successfully various pre-Christmas tasks I’d expected to be doing later in the week – I happened to catch the classic song Enjoy yourself, it’s later than you think on the radio.

As I listened, I reflected on how this song was the much more life-affirming version of the fatalistic Glasgow phrase “You’re a lang time deid”*. I realised that while I may not have made a bucket list as such, that’s precisely the reason I’m trying to run faster every time I do my local 5k Parkrun on Tooting Common on Saturday mornings; that’s the reason I’m working three days a week – which I love – instead of the four I did before my diagnosis; that’s the reason we spent twice as much on our summer holiday as we usually do; and that’s the reason I’m planning on taking my 80-year-old mum off to somewhere sunny in January for a few days. At the other end of the scale, that’s the reason I now eat asparagus whenever I bloody well feel like it – even if it’s been flown in or shipped from Peru – instead of limiting myself to the four short weeks this most wonderful vegetable is in season here in Britain! I could go on, and on, and on.

Anyway, it turns out it more or less rained all afternoon today so the tennis match I’d been due to play would have been cancelled anyway. Also, it’s the holidays and it’s nearly Christmas and the last place our 16- and 18-year-old boys are going to be spending their evenings is round the dinner table with their mum and dad, so the family meal was out too.

You know what? The big lesson in all of this is that it really is later than you think and you really are a long time dead. In the end, it was a good day.

*I googled this and it turns out it is in fact the second half of an old Scottish saying: “Be happy while you’re living, for you’re a long time dead”. Not a bad sentiment at all… and much more positive than it first appeared.

Post-op progress report No 6: If this is as good as it gets, I’ll take it

I was at the cinema one evening in late October and towards the end of the film I became aware of something really weird. A couple of hours had gone by and I hadn’t felt the need to make any of the stretches or movements I’d been used to making regularly throughout the day to ease the feelings of discomfort in and around the area where I’d had breast cancer surgery more than ten months earlier.

Basically, nothing had felt wrong for at least two hours. I hadn’t felt the need to lift my right shoulder up and back to stretch out the tightening around the scarring in the area where my reconstructed right breast – which they made out of my tummy fat immediately after my mastectomy – meets my chest. I hadn’t felt the need to lift my right arm back behind my head and straighten it out to ease out the tightening or cording that’s still there in the armpit area where I had lymph nodes removed. I hadn’t felt the need to rub the inner part of my upper right arm to lessen the feeling of numbness and tingling I still have there, also a consequence of the lymph node removal surgery. Finally, I hadn’t felt the need to stretch out the tightness I still feel from time to time around the horizontal hip-to-hip scar where they took skin, fat and blood vessels for the breast reconstruction.

Ever since that evening at the cinema (My Scientology Movie, if you’re wondering), I’ve been noticing ever-longer periods throughout the day when all I can say is that nothing feels wrong and I’m not aware of any discomfort anywhere on my whole body. I’m still not used to it but, almost a year on from surgery (The basics), that’s what I call a result.

I wrote a blog for the Macmillan cancer support charity in mid-September on the importance of exercise during my treatment and ongoing recovery. I read back through it recently (What do you mean I look like a wreck?) and was amazed at how much things have improved physically even in the past two months or so.

So where are we now? Well I do still stretch out my shoulder and arm every so often during the day, though nowhere near as regularly as before. It’s far less uncomfortable than it was. I’m still having monthly physio sessions and those really help; I also still do stretching and strengthening exercises. The feeling is gradually coming back in that upper arm area; I still give it a good pummelling every now and then. The uncomfortable swelling in and around the operated area that was diagnosed as lymphoedema has all but gone; I still do a special massage in the affected area to help prevent the build-up of lymph fluid. Sometimes I’m aware of a general feeling of mild discomfort in the whole area but, more often than not, I’m not aware of anything.

What else? Well it’s only in the past couple of months that I’ve been able to sleep on either side or indeed on my front. Being able to sleep in whatever position I want after so many months of having to sleep on my back with my right arm stretched out behind my head is a really big deal. Having to stretch out the area around my abdominal scar is not a big deal; what 53-year-old woman is going to complain about having a tight tummy?!

There’s more. It’s been a good while since I’ve experienced anything like that fatigue I would feel from time to time that would make it hard to move very far from the sofa. It didn’t happen often, but when it did it wasn’t nice. Finally, I caught myself the other day running down the stairs on the London underground and diving onto a train. I’d stopped doing that as I was scared of falling or bumping into someone (Sod the compression bra, it’s summer!). Clearly not any more!

All in all, then, there’s been quite some improvement in recent months.

There’s stuff going on that’s related to treatment rather than to the surgery I had last December, but none of it’s too bad. The chemotherapy-induced peripheral neuropathy I had in my feet really is all but gone, although I still get some low-level tingling and numbness when I run or play tennis. It’s either that or my trainers are too tight! I’m tolerating letrozole, the daily anti-hormone therapy that I’m on, well. Letrozole can bring on hot flushes; for a couple of months these would appear out of nowhere but they’ve now subsided.

The “trigger thumb” that I’ve developed in my right hand is persisting. This is a known but rare side effect of letrozole, and it’s a bit of a drag. I can’t bend my right thumb and I’ve had to change the grip I use to serve at tennis and the way I hold a pen. My serve is neither better nor worse but my handwriting has gone from bad to appalling. It’s hard to do things where you need to apply pressure with your thumb – such as opening bottles and jars, tying shoe laces or using a grater – but it’s not the end of the world. I guess I could/should get treatment for it; instead I’ve just got used to it.

Finally, I sometimes wake up with stiff fingers on my right hand and my knuckles on that hand are a bit swollen – letrozole again. My rings don’t fit any more, which is a shame as I used to wear my late grandmother’s wedding ring and a signet ring I got for my 16th birthday on that hand. There’s no other joint-stiffening to complain of at the moment (I do have a painful left hip, but I’m hoping it’s nothing more sinister than a sports injury; I’ll get it checked out if it doesn’t go away).

This is my sixth post-op progress report and I reckon it could well be my last. The consultant breast surgeon told me that on the physical front we’d be doing well if I got back to 95% of what I was before. I don’t know quite how you measure that but if the way I am now is as good as it gets, I’ll settle for that and be quite happy. Now if someone could just give me a guarantee the cancer won’t come back, things would be just fine. But they can’t, of course. I don’t believe my “recurrence anxiety” will ever go away but in the meantime there’s no doubting these physical improvements are reasons to be cheerful.

 

What do you mean I look like a wreck?

This post isn’t new. I wrote it in mid-September for the Macmillan cancer support charity on the importance of exercise during my breast cancer treatment and ongoing recovery. I read back through it the other day and realised – to my astonishment, really – that nearly 11 months on I’m still seeing improvements from the surgery I had last December. Details will follow but in the meantime I decided I wanted this on my own blog for the record. I really like it; it’s nice and upbeat and it makes me smile. 

Here it is…

When the consultant breast surgeon greeted me at my most recent appointment with the words, “You look like a wreck”, I was more than a little confused. It seemed completely out of character and was, I thought, downright rude. More importantly, though, I was feeling really well physically and just couldn’t fathom why he’d say such a thing.

I’m fitter and healthier than I’ve been in years. Since finishing pretty gruelling treatment for breast cancer nearly seven months ago, I’ve been eating healthily, I’ve cut down on my alcohol consumption, and I’m exercising loads. As 53-year-old women go – never mind one who’s relatively recently been through cancer treatment – I think I’m doing pretty well.

“A wreck?” I said, trying not to sound put out. “But I feel great.”

“Not a wreck,” the consultant said, amused that I could think he’d say such a thing. “A rake! You’re fading away.”

I laughed at the misunderstanding and reassured the doctor that I was not in fact fading away. Since my diagnosis in July 2015, I have, however, lost the six, seven or eight kilos that I’d put on gradually over the previous decade. The consultant’s comment illustrates just how much I’ve taken on board the recommendations for healthy living that you’re advised to follow when you finish cancer treatment. Doing certain things, you’re told, reduces the risk of your cancer coming back. I’m at high risk of recurrence, so it’s perhaps not surprising that I’m trying to do everything I can to lessen that risk.

Initially I was ambivalent about the lifestyle changes I was making. I felt they were driven by fear of recurrence rather than by a genuine desire for change. But now I’m positively enjoying being fitter and healthier than I was pre-diagnosis.

I’m loving the extra exercise. I’ve always been sporty – tennis and cycling have been part of my life for years – but for the first time in my life I’m enjoying running. I’ve even joined a local running club.

I invariably feel better after exercise. During treatment itself, on more than one occasion, I felt it was my saviour. There were days when I’d be feeling tired and low and I’d force myself to cycle to the hospital or clinic appointment rather than drive. During radiotherapy I challenged myself to cycle to more sessions than I drove to. It wasn’t always easy, but I won – just! No matter how I felt when I left the house, I always felt better by the time I got to my destination.

When I did my first local 5K Parkrun in mid-April six weeks after finishing radiotherapy, I was both relieved and elated. Around 300 people did the same run that morning. I was amongst the slowest. Running the same route at the same time as all these other people, however – and knowing thousands of others were doing exactly the same thing in Parkruns up and down the country – in some way made me feel I was back in the real world after having been in some sort of parallel universe since I was diagnosed in July 2015.

I had Stage 3a breast cancer and went through six-and-a-half months of treatment that comprised eight sessions of chemotherapy, a right-side mastectomy with immediate own-tissue reconstruction, lymph node clearance and 16 sessions of radiotherapy. It takes a long time to recover from that kind of treatment. The chemotherapy-induced peripheral neuropathy that I had in my feet is pretty much gone, but I still get the odd niggle, especially when I run (ironically). My upper arm on the operated side is still numb and there’s a feeling of discomfort in my chest and armpit that never quite seems to go away. There’s a little swelling in and around the operated area that’s been diagnosed as lymphoedema. Some days even now, I can feel really fatigued and have to take things easy. I’m on letrozole anti-hormone therapy and if I stay sitting for too long I feel my joints stiffening up. Hot flushes appear out of nowhere. In my right hand I’ve developed trigger thumb, a painful and annoying condition that can be caused by low oestrogen levels, which is precisely what letrozole is designed to achieve.

There’s no doubt that exercise helped and is helping me deal with both the physical and emotional effects of having had breast cancer. Everyone has their own way of coping, and exercise, it seems, is mine. There’s no downside as far as I can tell. I’m aware that what is a huge challenge for some is a breeze for others and vice versa. It’s about knowing what’s right for you and about setting achievable goals and not being overambitious. Exercising with friends or in a group can help.

For me, exercising is empowering. I’m fitter, I’m healthier, and over the past few months I’ve met some great new people. On the recurrence front, I know there’s no guarantee my cancer won’t come back. Exercising is a massive help in keeping in check my fear that it might.

 

 

 

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!

 

Here’s to remaining forever “entirely unremarkable”

It turns out that being described by your oncologist as “entirely unremarkable” is a good thing.

To be fair, the oncologist didn’t use the term to describe me personally. She used it in the context of the physical examination she did of me one day last month, at the appointment I had with her just before I had my latest round of zoledronic acid. That’s the bone-toughening drug I get a dose of every six months to counteract the bone-weakening effects of letrozole, the hormone therapy drug I take daily to lower the amount of oestrogen in my body and so reduce the chance of my breast cancer coming back.

The oncologist had a feel in various places for lumps or swellings or anything else that might have given cause for concern. Later, in her report to the consultant breast surgeon, she described the examination as “entirely unremarkable” in that there were “no signs of recurrent disease”. Of course, an absence of lumps is only that. All it means is there’s no palpable sign of trouble at this time. There could be lots of other stuff going on that we’re just not aware of (How would you know it’d come back?). But it’s something, and on that front I’ll take whatever reassurance I can get.

As well as having bone-strengthening properties, zoledronic acid has been shown to reduce breast cancer recurrence in post-menopausal women such as myself. It’s given via intravenous infusion (that’s a drip to you and me) over a period of 15 minutes; you’re in and out of the chemo unit in no time but it felt really strange to be back there after six months away.

My next round of the drug is due in March next year. Here’s hoping I’m still entirely unremarkable then and indeed that I stay that way for evermore.

 

Laying to rest the ghosts of mammograms past (and making up for a cancelled bike ride)

I’ve had a couple of weeks of laying old ghosts to rest.

First of all, I got the results of the review of the clear mammogram I had in October 2014, nine months before my diagnosis with Stage IIIa breast cancer (The details) in July 2015. The review found nothing remotely suspect in the original images; nothing was missed. The tumour I had in my right breast therefore grew from nothing – or at least from being undetectable on a mammogram – to probably bigger than 5cm* and out into the lymph nodes in my right armpit within the space of eight or nine months.

Secondly, I did a two-day bike ride that a friend and I had said we’d do together once my treatment was over and I felt up to it. This was to make up for my having had to cancel a long-distance bike ride to Brussels last September as by then I’d started chemo.

Clear mammograms

The results of clear mammograms that are followed by so-called “interval” breast cancers – ie cancers that are diagnosed between routine mammograms – are reviewed as a matter of course and the women notified of the results. I don’t know how soon after the fact the reviews usually take place but a couple of months ago I went ahead and requested that mine be done.

I had two mammograms in the 18 months preceding my diagnosis, one in January 2014 and one later that same year, in October (So you think you’re breast aware). Both were reported as clear at the time and, following the review that’s just been done, nothing has changed. The consultant radiologist who went through the results with me two weeks ago yesterday said that the team of five reviewers, four of whom were also consultant radiologists, could see “no malignant features or subtle signs of cancer” in the images. The official classification is “Category 1: normal/benign features”.

At least now I’ve got the results. This had been on my mind ever since I was diagnosed. I can now draw a line and move on.

It’s hard to predict the rate at which tumours grow. My cancer was Grade 3, the most aggressive grade. I’d known it was possible for the tumour to have grown within the space of eight to nine months to the size it was when I was diagnosed (it won’t surprise you to hear I’d discussed it with my oncologist). Nonetheless, I found getting the results of the reviews very upsetting. I’d been proactive in ensuring I was screened. I thought I was pretty “breast aware”. I felt, however misguidedly, that to be diagnosed with Stage IIIa breast cancer (after Stages IIIb and IIIc comes Stage IV, which is incurable) after having had two clear mammograms was not just ironic but massively unfair. I’d been doing pretty well with the whole “looking forward, moving on” thing, but this brought everything back. I felt I was in the middle of it all again instead of almost seven months out of treatment. The consultant and the breast care nurse who was also at the meeting were very sympathetic.

Of course I’m pleased that nothing was missed. If I’m completely honest, however, I think that if things had gone the other way a tiny, tiny part of me would have been relieved that I could put at least some of the “blame” for my cancer having got to Stage IIIa by the time I was diagnosed on something or someone else other than myself. People have said I did well to act when I did but I will always wonder whether I could and/or should have acted sooner. The further I get from last July, though, the less I’m able to remember how long I might have been wondering whether something was wrong. Anyway, you can’t change the past but you can change how you feel about it. There’s no point beating myself up about something I can’t change.

I turned 50 in July 2013 and, instead of waiting to be called in for a routine mammogram under the NHS breast cancer screening programme, towards the end of the year I phoned and asked for an appointment. I had my first mammogram in January 2014. They kept me on the system and nine months later, in October, I had what would have been my routine mammogram.

Mammograms are no more than a snap shot of a moment in time and screening picks up around one third of breast cancers. Considerably more breast cancers are found by women themselves than are found through routine mammograms so what happened to me is not unusual. I do wonder whether having had two clear mammograms in relatively quick succession gave me a false sense of security. Also, I wonder at which point my tumour would have shown up in a mammogram before I’d have been able to feel it. What if I’d had that second mammogram three or two months or even one month later? Would it have shown up then, when it was perhaps at an earlier stage? If it’d been found earlier, my risk of recurrence would be lower than it is and perhaps I wouldn’t have had to have so much treatment. I know better than to dwell on thoughts such as these but I don’t stop having them in the first place.

Bike trip
There are only so many tears you can cry in one day so a few hours after getting home from the review meeting I finally called a halt to my pity party for one. That evening I headed off to the pub to meet my friend Juliette to plan the bike ride we’d be doing the following week in the New Forest in Hampshire. I’d done a 63-mile bike ride with Juliette just days before I was diagnosed and, at some point after I’d cancelled the long-distance ride to Belgium that was planned for last September, Juliette suggested we do a trip together the following summer to make up for it. And so we did. And what a fabulous couple of days it was.

Getting the results of the mammogram reviews helped me put one ghost to rest. Two days last week spent cycling in the sunshine through forests and along coastal roads, and past ponies, thatched cottages and duck ponds, enabled me to put another one to rest. I’d been worried about how long it might be after surgery before I’d be able to cycle long distances again… or indeed whether I’d be able to do such bike rides at all (Stopping the downward spiral). So a huge thanks to Juliette.

There’s more. The day after I got the results of the mammogram reviews, Andy, the boys and I headed up to Cumbria and Yorkshire to join our friend Dave Clark on a 14.5 mile leg of the 200-mile coast-to-coast trek from the Lake District in the west of the country to Robin Hood’s Bay in the east that Dave had started out on a few days earlier. Dave was diagnosed with Parkinson’s five years ago. He’s just turned 50; I’ve mentioned him before (Don’t wait for the rain to stop, dance – or cycle – in the rain).

Dave completed the walk in 13 days (https://www.justgiving.com/fundraising/ClarkysC2C, #ClarkysC2C & http://bit.ly/2dswuyQ) in an effort that was nothing short of heroic, helping raise £100,000 for Parkinson’s UK along the way. I’m sure Dave has his dark days but every step of that walk was life-affirming and a lesson to us all that what matters is the present and that making the moment count beats the hell out of dwelling on regrets about the past or worries about the future. This post’s for you, Dave.

*While my tumour was estimated to be probably bigger than 5cm, we never found out the precise size because I had chemo before I had surgery. I had such a positive response to the chemo (A busy week with welcome news – “no mass identified” and “no further surgery necessary”) that by the time I had my mastectomy there was essentially nothing left of the tumour to measure. Can’t complain about that although at the time it did freak me out that I’d never know the exact size of the beast growing inside me.

Recurrence 6: I can’t stand that Jamie Lawson song

I was sitting in the kitchen earlier today enjoying the late summer sunshine reading the Sunday papers and listening to the radio when I heard Jamie Lawson sing his hit song, “Wasn’t expecting that”, on stage at BBC Radio 2’s Live in Hyde Park “festival in a day”.

Who would have thought that a song that ends with a middle-aged woman dying of cancer would be so popular? But that’s just what “Wasn’t expecting that” is about, isn’t it? A lot of people clearly love it. For the record, I’m not one of them. I can’t stand that song.

I guess it might be a cancer other than breast cancer that kills the woman in the song. It doesn’t matter. It’s all lovely, lovely, lovely, then the final few lines when they come are like a punch in the stomach. I guess you’re meant to think you weren’t expecting that. Clever, eh?

You could argue the song’s raising awareness about cancer recurrence. In breast cancer, recurrence is definitely an area that needs more attention (see Recurrence 1, 2, 3, 4 & 5). Even so, I really don’t like it; it’s just too sad, and as if that weren’t bad enough, it’s maudlin too. Take a look at the last verse (ignore the bad grammar in the first couple of lines!):

When the nurses they came
Said, “It’s come back again”
I wasn’t expecting that
Then you closed your eyes
You took my heart by surprise
I wasn’t expecting that

I rest my case. Now I know as kids we would all belt out the Terry Jacks 1974 chart topper, Seasons in the Sun, but that was then and this is now. I would have been a carefree 11-year-old in 1974; now I’m a 53-year-old who’s had breast cancer.

Incidentally, I’m back at the hospital tomorrow for my third cycle of zoledronic acid, the bone-hardening drug I currently have a dose of every six months to counteract the bone-weakening effect of letrozole, the anti-hormone therapy that I take daily to reduce the risk of my breast cancer coming back. Zoledronic acid, too, has been shown to improve survival in post-menopausal women like me (Breast cancer does indeed “come with baggage”), by reducing the rate of breast cancer recurrence in bone. I can’t believe it’s six months since I had the last round. When  I see the oncologist tomorrow, we’ll also discuss my “trigger thumb“, a painful and really annoying condition in which your thumb catches or locks when it’s bent. It’s a known, although rare, side effect of letrozole and I’ve had it in my right hand for nearly two months now. Potential options include, it seems, corticosteroid injections and/or surgery. Hey bloody ho.

PS Jamie Lawson, if you ever read this, I love the rest of your stuff!

 

 

Yes, you could get hit by a bus but…

Lots has already been written about what to say and what not to say to people who’ve got or who’ve had cancer. As for me, now that I’ve had a chance to think about it, I know there are certain phrases that I myself may have used in the past that I will never use again in any circumstances – except perhaps as a joke.

I’m aware I’m probably more sensitive to things like this now, and I know we often say things with the best of intentions, but I’m banishing the following from my vocabulary from here on in:

• “It could be worse.” How often do we say this? Of course it could (almost) always be worse, but if you’ve been diagnosed with breast cancer, it could also be a whole lot better.
• “You could get hit by a bus.” Again, of course you could, but it’s extremely unlikely. Everyone knows, or knows of, a good few women who’ve had breast cancer. How many people do you know or know of who’ve been hit by a bus*? The most recent figure I could find for pedestrian fatalities in road traffic accidents in Great Britain is for 2014 and it’s 446. And I imagine most of those casulaties will have been hit by a car, not a bus. In the UK, there were around 53,700 new cases of invasive breast cancer in 2013 and around 11,360 women died of breast cancer in 2014. There’s no comparison really, is there?
• “We’ve all got to die of something.” This one now strikes me as particularly insensitive. Of course it’s true, but if you could choose how to die**, I’m assuming no-one would ever choose breast cancer, or indeed any kind of cancer.
• “If you’re going to have cancer, breast cancer’s a good one to have.” I’d heard this and kind of accepted it as fact… without any knowledge whatsoever. I know why people say it. Breast cancers generally don’t grow as fast as some other cancers, it’s usually obvious how to treat breast cancer and lots of people who are diagnosed with breast cancer and treated are effectively cured – in that it doesn’t come back. But there’s no guarantee. Also, there’s breast cancer and there’s breast cancer; some cases are much more serious than others and there are different types, some of which are much harder to treat than others. The bottom line is that no cancer is good to have.

It’s obvious why we say phrases such as these. We have a need to try and rationalise things that happen to us that we weren’t expecting and that frighten us. Or we want to say something to reassure either ourselves or the people we’re talking to. Or we’re embarrassed and we feel words are better than silence. We mean well. Nonetheless, I won’t be saying these particular phrases again. I don’t think my vocabulary will be any the poorer for it.

*I do in fact know someone who was hit by a bus. She’s a very good friend and was on her bike at the time. Many years later she still has a dent on her chin from the encounter!

**If I had any say in the matter, I think I’d choose to die the way my 94-year-old mother-in-law died just this weekend… of old age, peacefully, in the company of loved ones. Lilian was an important and lovely part of our lives; we’ll miss her.

Sod the compression bra, it’s summer!

I decided I’d had enough of compression bras when I was getting dressed one morning about a month ago.

I’d been advised a good few months ago now to wear a compression bra as a matter of course to deal with the breast lymphoedema I’d developed as a result of my breast cancer treatment. I’d been very compliant… up until this particular morning. The sun was shining. It was a lovely day. I’d tried on at least half a dozen summer tops and still hadn’t found one that covered the monstrosity I was wearing. I looked in mounting frustration at the growing pile of discarded tops on the bed and thought sod it, it’s summer. I ripped the offending garment off, put on a normal bra and happily put on the top of my choice. It sounds pathetic but I can’t begin to tell you how good it felt.

So how does the lymphoedema manifest itself? I clearly have a mild case but things are a little swollen in and around the operated area on the right hand side. Andy insists you don’t notice it when I’m clothed. I think you can, but I’m probably paranoid. I pointed it out to Andy in a photo. He peered hard. “If someone was looking at you that closely,” he joked, “I’d have to hit him.”

I don’t know whether it’s down to the surgery (mastectomy, reconstruction and lymph node clearance) or the lymphoedema but there’s still general discomfort and tenderness in the whole area and occasional pain. I’ve stopped running for trains on the tube to avoid bumping into anyone as I dive into a carriage. I don’t run down stairs for fear of tripping or falling. I’m careful in crowds. I brace myself when people give me a hug and hold myself in such a way that when they do they avoid the affected area.

I’m keeping up with my daily lymphatic drainage routine. The compression bra (or heavy duty sports bra – they do the same thing) still gets worn with some regularity. I haven’t managed to get to grips yet with the kinesiology tape, which is also used in the treatment of lymphoedema. Yes, that’s me with the tape on in the photo, when I was having daily manual lymphatic drainage at the clinic back in May (Post-op progress report No 5). Drawing by Andy.

When I met the consultant who assessed the extent of my condition in April, she asked me to go through my recent medical history with her. As I told her what treatment I’d had, I could see her mentally ticking lymphoedema risk factor boxes. Axillary lymph node removal, radiotherapy, post-surgery cording, seroma drainage, cellulitis. Tick, tick, tick, tick, tick. I can tell you’re really not surprised I’m here, I said. She smiled.

Anyway, I guess it’s just something I have to get used to living with. It’s manageable, if inconvenient and a bit of a pain. Importantly, it seems to be pretty much under control. Let’s hope it stays that way.

Recurrence 5: How would you know it’d come back?

Your active breast cancer treatment finished months ago. You’ve had follow-up reviews with the doctors who’ve been treating you and they’ve all signed you off. Your first mammogram since you were diagnosed – just over a year ago now – is booked for December. You’re told to get in touch in the meantime “if you’re worried about anything”, which basically means if you think your breast cancer’s come back.

I don’t feel abandoned like some people do. In fact I’d like to be out of the system even more than I am. I still have stuff going on that keeps me involved one way or another: six-monthly cycles of a bone-hardening drug to reduce the risk of recurrence and lower my risk of developing osteoporosis; occasional physiotherapy for the post-surgery underarm cording that’s still there; occcasional treatment for the lymphoedema I have in my reconstructed breast; and a consultation in either three or six months’ time with the plastic surgeon to check the reconstruction.

So how would you know your breast cancer had come back? Well, just as most primary breast cancers are found by women themselves rather than through routine screening (So you think you’re “breast aware”), most breast cancer recurrences are found by patients between hospital or clinic visits. You make sure you’re aware of the symptoms. If you have them, you get them checked out and you find your cancer has either spread (to your bones or your liver or your brain or your lungs or your lymph nodes or a combination thereof) or it hasn’t. If it hasn’t, I imagine you breath a huge sigh of relief and thank your lucky stars. If it has, it must be one of the worst pieces of news you could possibly get. Your best hope then will be that it hasn’t spread too widely and that treatment is available that will keep it under control for as long as possible. As you’ll know if you’ve read my previous posts on recurrence, recurrent/Stage IV/advanced/secondary/metastatic breast cancer can be treated and you might live with it for years, but it can’t be cured. It’s currently ultimately fatal.

Frustratingly, some of the general symptoms linked to recurrence – being more tired than usual, low energy levels, feeling under the weather, poor appetite, weight loss, back pain, headaches, etc – are also caused by common illnesses or ailments. They can also be similar to ongoing side effects of treatment you’ve had for primary breast cancer, such as chemotherapy or radiotherapy, and to side effects of ongoing treatment, including hormone therapy.

Essentially you’re encouraged to report any symptoms that are new, don’t have an obvious cause or don’t go away. Some women who’re not long out of active treatment panic at every ache or pain and head off to their GP or the breast cancer unit where they were originally treated at the slightest twinge. At the other end of scale, some women initially downplay or dismiss their symptoms only to find the symptoms persist and their cancer has indeed spread. Both approaches are understandable. Let’s see which camp I’ll fall into. I can tell you I’ve already had a lump under one of my scars checked out; it’s scar tissue, “nothing nasty”.

Better to err on the side of caution, I say, and to persist if you really feel something is wrong. A new report on diagnosis of secondary breast cancer from the charity Breast Cancer Care exposes what it says are “shocking failings” in the system– patients being diagnosed in A&E, facing avoidable delays and having concerns ignored by healthcare professionals. The report also says over half (58%) of people with incurable breast cancer did not know how to spot the signs and symptoms of the disease. The infographic here* is aimed at helping people who’ve been successfully treated for primary breast cancer recognize the symptoms.

People are surprised to hear that generally the only routine follow-up test you have after treatment for primary breast cancer is an annual mammogram (or ultrasound too in my case – What does follow-up look like?). Mammograms don’t check for secondary breast cancer. They check, rather, to see whether you’ve developed a new cancer in the other breast or, depending on what surgery you’ve had on the breast that had the tumour in the first place, to see whether it’s come back there.

It’s quite hard to accept that there’s no way of knowing your cancer has spread before symptoms appear. There isn’t a test that can tell whether you have dormant cancer cells resting somewhere in your body, or that those dormant cells are about to activate and start spreading, or indeed have just begun to spread. No amount of tests will stop the cancer spreading and, as Cancer Research UK says, since no test can pick up microscopic cancer spread, a negative test doesn’t necessarily mean that there is no spread.

As I’ve said before (Recurrence 3), you do what you can to reduce the risk of your cancer recurring. You try to live healthily, you keep a watchful eye on your body, you comply with any ongoing therapy, and you go for your annual mammogram and ultrasounds and any other check-ups you’re offered. Ultimately, though, you have to learn to live with the fact that you’ll never know you’re going to remain cancer-free and that those symptoms, if they appear, could be very bad news indeed. At this stage, a year after my diagnosis and just five months out of active treatment, that still seems really unfair.

*This post is dedicated to Jo Taylor, a friend I met through the wonderful social media resource that is Twitter and who created this infographic to help raise awareness of secondary breast cancer. Jo is in her mid-4os, has secondary breast cancer and is a tireless campaigner on issues relating to the disease.  Jo (www.abcdiagnosis.co.uk and @abcdiagnosis on Twitter) has just undergone major surgery and deserves a massive shout-out. Recover and be well, Jo.