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.

 

 

 

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. 

Acupuncture, tennis, a haircut and going back to work

Good things are happening.

The biggest thing to report on the physical front – and this is massive – is that the peripheral neuropathy in my feet that was caused by the chemotherapy drug paclitaxel has improved dramatically over the past month.

Don’t get me wrong; that painful throbbing and numbness in the balls of my feet and toes is still there, but to a much, much lesser degree. It’s nowhere near as painful as it was and it’s now only very rarely so bad that I have to sit down and rub my feet to try and ease the discomfort. I used to have to do that pretty regularly. It no longer wakes me up at night. In fact sometimes it’s not even there when I wake up. This is still slightly disconcerting as I’d got so used to it; I wake up and lie there wondering what’s wrong and then I remember and savour the fact that it’s no longer there. It’s a lovely (non)feeling.

Now here’s the thing. This easing off of the chemo-induced peripheral neuropathy has coincided with my starting acupuncture. I know those of you who know me well will do a double take on reading that but, yes, I’ve had three sessions to date and I absolutely love it. Regardless of whether or not that has anything at all to do with the improvement in the nerve damage in my feet, I have to say I have never in my life felt as relaxed as I feel during those sessions. I have them through a lovely charity, The Haven. I did wonder what I’d let myself in for when in one of the sessions I felt a needle being placed in the middle of my forehead right where a “third eye” might be if we had one (think Cyclops), but by then it was far too late. It was half-way through a session and, anyway, I was so relaxed by that point that I really almost didn’t care.

Ironically, the peripheral neuropathy is now at its worst when I’m running. The last five minutes of this Saturday’s 5k Parkrun were a bit of a struggle.

There’s plenty more good news. I’ve been back on the tennis courts twice now, albeit playing with the soft balls children play with when they’re learning. You won’t be surprised to hear that it felt really, really, really – I could go on – good. It was fine in terms of my arm and shoulder and abdomen (where the big scar is), both when I was playing and in the following days. On a related matter, the cording in my chest and arm is really loosening up. While certain stretches are still painful, I’ve more or less regained full mobility in my arm and shoulder.

I’d asked the consultant who’s in charge of managing my lymphoedema when I met her a couple of weeks ago whether I should play. The swelling is currently only in the reconstructed boob and surrounding area (Looking forward to a “much more symmetrical overall shape”). If it develops in your arm, the consultant said, it’s as likely to be caused by (over)reaching for a tennis ball as it is from lifting a too-heavy shopping bag. Her advice then? “Do what you enjoy.” That was just the encouragement I needed. It basically confirmed what the consultant on the radiotherapy side of things had said a few months ago (Should I play tennis? “Yes, just don’t play Federer.”). A few days later, I enlisted my lovely doubles partner to knock up with me and the following week the rest of the stalwarts of the ladies doubles team I used to play for also obliged. (Thanks, Mary M, Mary P, Monica and Julie, and thanks to coach Steve who suggested the soft balls! Hopefully it won’t be too long before I’m whacking those hard yellow balls again and back playing in the team.)

There’s more. Five months on from finishing chemo, I need a haircut. That’s happening later today. And this last one is really huge… I start back at work tomorrow. It’s time.

That’s about it on the physical front. What about emotionally? Well, thoughts of recurrence are no longer always the first thing that pop into my head when I wake up in the morning. When they do, I tell them to sod off. Sometimes it works. That’s a big improvement.

Footnote April 11, 2019. I’m not convinced I ever had lymphoedema. Post-op odoema, certainly, but the swelling eventually went. So lymphoedema? I don’t think so.