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.

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.

 

Post-op progress report No 5: On very intimate terms with three new people

Fifteen sessions of manual lymphatic drainage later and things were looking a lot better. My reconstructed boob was much softer and less swollen, the swelling had all but gone in my right “flank” (I do like that word), the scar tissue that had developed after the operation was softer, and the tethering on the reconstruction had been massaged away to next to nothing. And I was on very intimate terms with three new people… or rather they were on very intimate terms with me.

More or less daily for three weeks in May, I lay there on a treatment bench in a room in the hospital for an hour at a time, naked from the waist up – yes, again (although there was a towel to cover me) – and gave myself over to the ministrations of one of three different MLD therapists. My initial scepticism about what might be achieved turned to admiration, fascination and surprise as the results started to show. And if you thought acupuncture was relaxing (Acupuncture, tennis, a haircut and going back to work), MLD takes you to another plane altogether. Within seconds of the therapist getting to work, I would feel myself starting to drift off. It was awesome.

So what is manual lymphatic drainage and how is it used in the treatment of lymphoedema? For yes, dear reader, that is what I have, in and around the operated area. Well – and all I’ve done here is copy and paste from the MLD UK website – in MLD “the therapist uses a range of specialised and gentle rhythmic pumping techniques to move the excess fluid into an area with a working lymph vessel system. This stimulates the lymphatic vessels and helps move excess fluid away from the swollen area so that it can drain away normally.” With me, the areas that the therapists manipulated were in my neck (that’s what sent me to sleep), my right and left flank, around my left boob, and all the way across the top of my upper chest and various parts of my back.

I felt quite low as the final sessions approached, firstly because the results were so good and secondly because the sessions themselves were so pleasant. I was taught how to do “self MLD” myself and I endeavour to do this every day before I get up to keep the swelling at bay. It’s not the same, though, as having someone else do it, for a whole hour at a time. Somehow it’s easier to cycle half an hour to the hosptial, have an hour-long session and cycle half an hour back home than spend half an hour doing it to yourself in the comfort of your own home. In a perfect world, I’d have my own private MLD therapist for use on demand!

So the reconstruction looks and feels a lot better than it did. But while the swelling is down, it hasn’t gone completely. And the tethering is back, although it is better than it was. Also, while the cording has improved, it’s still there. And it’s all still tender. And, somewhat disconcertingly, over the past week or so there’s been more pain and discomfort in the general area than there’s been for a while. Everything seems to tighten up overnight and while it eases off once I do some rubbing, massaging and stretching, the discomfort persists throughout the day. I don’t know whether it’s post-surgical pain or whether it’s the cording or lymphoedema or something else that’s causing it.

I’m now six-and-a-half months out of surgery and while they warn you that things “take time” to settle down, I somehow – probably naively, or even arrogantly – expected to be pretty much back to normal physically by now. But I hadn’t counted on cording and lymphoedema. The time seems to have flown by but I can’t help but be disappointed that at this stage there are still “issues”. I’m seeing the physiotherapist again the week after next after a bit of a break. That will help, I’m sure. It always does. I also have some more MLD sessions this coming week, which I’m hugely looking forward to.

Other things have also improved since my previous post-op progress report, in April (Post-op progress report No 4: Passing the Velux window test and “running” 5k). The horrible, painful tingling and numbness (chemotherapy induced peripheral neuropathy to give it its medical name) in my feet has all but gone. I’m so relieved at this. I hardly noticed it when I did my latest 5k Parkrun, yesterday – and when, by the way, I smashed my personal best by more than 40 seconds and came in at well under 29 minutes! I’m back to playing tennis regularly, and am delighted to be back on the ladies doubles team. Whatever problems I have with my arm and chest, it doesn’t affect my running or tennis. And I don’t feel the problems are caused by either.

The scar across my abdomen is continuing to fade – thanks in part to the fact that I massage Bio-Oil into it once a day and twice if I remember and can be bothered.

And I’m loving being back at work.

Over the next two weeks I’ll see the plastic surgeon, the breast surgeon and the radiotherapy consultant for two- and three-month reviews. I’m pretty sure they’ll tell me that as far as the discomfort and swelling is concerned, it’s still “early days” and that with stretching and physio and MLD and more time passing, things could still improve. That’d be good. I guess I’m just impatient.

 

 

 

 

If planning a holiday is a clear sign of recovery…

The point at which you can look forward to and plan a holiday after you’ve finished cancer treatment is regarded as a clear sign of recovery. I must be doing OK as I am in fact planning – and very much looking forward to – not one but several trips.

The reason planning ahead is seen as such a positive step is that for all the months you’ve been undergoing treatment, your time horizon has been limited to the next treatment or appointment. It really is very difficult to see further than that. In fact sometimes – immediately after surgery, for instance – you’re taking things a day, never mind weeks, at a time. I need to refer here to a really thoughtful essay entitled After the Treatment Finishes – Then What? by Peter Harvey, a now retired UK consultant clinical psychologist. For people who’ve finished treatment, he says, planning too far ahead brings its own worries and fears and to switch suddenly to planning for events months in the future is a step too far. That was indeed the case with me for a while but I seem to have “moved on” on that front – at least enough to plan some holidays.

So Andy and I are off to Madrid soon for a few days, to spend some time with some really good friends of 30 – yes, 30! – years, whom we met when we lived there in the 1980s. Then we’re off to Croatia with the boys for two weeks at the end of July.

I’ve also booked flights for that annual long weekend/short week of skiing that I go on with friends every January (Stopping the downward spiral). Flights are very reasonable when you book them ten months in advance (!), but this trip was hard to book. I guess that’s partly because I was still in that “scared to plan” period when the flights became available a month ago. Also, it was on my mind that I had to cancel this year’s trip because I was in the middle of treatment (I love Glasgow, but it’s not Geneva).  And next January really is a long way off. Planning for something next month or even in the summer is very different from planning for something next year. Not only that, by the time that trip comes round I’ll have had my first mammogram since my diagnosis. That’s due in December, a year after my surgery. Anyway, the trip’s booked, as are the other two. There will be uncertainty and worry along the way but for the moment it seems I’m firmly on that road to recovery.

 

 

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.

 

Post-op progress report No 4: Passing the Velux window test and “running” 5k

I’m delighted to report two massive achievements in terms of my physical recovery from my operation and more broadly from my breast cancer treatment in general.

Firstly, on a beautiful, sunny Spring morning a little over a week ago, I managed to open the Velux window in our bedroom in the loft for the first time since my surgery last December. Secondly, just this morning, I ran five kilometres round Tooting Common. This was the first time I’d been out running since finishing chemo last November (and even then I’d only really gone running two or three times since starting chemo in August).

If someone had told me a year ago that I’d get excited about something as trivial as opening a window, I’d have said they were having a laugh. But here we are. We didn’t know then that I’d be recovering now from six months of breast cancer treatment that involved chemotherapy, major surgery (a mastectomy, full lymph node clearance and immediate reconstruction using blood vessels and tissue from my abdomen) and radiotherapy. We also wouldn’t have known that I’d develop something called “cording” in my right arm following surgery that would mean I was simply unable to grasp anything tightly with my right hand or indeed to straighten my arm and exert any level of pressure. This time last year I hadn’t even heard of cording.

Anyway, the fact is that I’d tried and failed to open the Velux window on many occasions since my operation three-and-a-half months ago, on 19th December, so I was delighted when I finally managed it the week before last. It hurt but I’d done it. It meant the cording was loosening up. It still hurts to do it now, but it’s easier every time.

As for my jaunt round the common today, it was very slow but I think it just about qualifies as running*. I’d asked the plastic and reconstructive surgeon at my most recent appointment with her whether I could start running again. She’d said yes so I kind of felt I had to get out there and put my money where my mouth was before I meet her again, on 12th April, for my next six-weekly review. Also, the Saturday morning 5k running phenomenon that is Parkrun has come to Tooting Common and I’ve been gearing myself up to do that. The plastic surgeon had said to double up on the upholstery front if I did go running (It’s not over ’til it’s over) so, this morning, supported by the Sweaty Betty crop top that I bought for my sailing trip across the Atlantic at the end of 2014 (What a difference a year makes) and a sports bra, I set off.

When I look back on those first few days and weeks after the operation when I could hardly move (Post-op progress report No 1: Biting off more than I can chew), I find myself totally in awe of the capacity of the human body to repair itself. (Yes, I know the human body is equally “good” at destroying itself but we’ll set that aside for the moment.)

I knew I was getting stronger as I’d caught myself running up the stairs in the house a few times in recent days. That’s how I went up the stairs as a matter of course before I started treatment but at some point towards the end of chemo, I’d started walking instead. I’d also at some stage gone back to getting out of bed the right way without thinking about it but I’ve gone backwards somewhat on that front recently. The swelling and tenderness in and around the breast area (Breast cancer “reminders”) means that when I wake up now I have to work out which way to move that will cause least discomfort. Also, I have to confess that I’m already stiffening up after my run and am feeling a like an old lady sitting here on the sofa. All in all, though, I’d have to say things are looking up.

*To illustrate just how slowly I ran, I should tell  you that Andy, not the world’s fastest runner, accompanied me round the common and said he’d to make a real effort to keep down (is that the opposite of keep up?) with me!

Cycling challenges and lowering expectations

I’d been doing so well in terms of cycling to radiotherapy before I came down with this infection (It went downhill from there).

I’d first cycled on Day 4 (In the end, the wig ditched me). By the end of Day 7, I’d ridden to three sessions and had driven or been driven to four. Car 4 – Bike 3. Things were getting interesting. At some point during the third trip on the bike, I got the idea that it would be fun to aim to cycle to more radiotherapy sessions than I would drive to. At that point I had nine sessions left so it really wasn’t a tough target; I had plenty of leeway and I thought it might give me an incentive to cycle if I was feeling a lethargic or just plain tired. Then the infection took hold and while the goal is still achievable, it’s only just.

I’ve now had 11 radiotherapy sessions. The car has increased its lead over the bike and is winning 7-3 (I’m discounting from the car vs bike/me “duel” the session this past Friday when, for good reason, I used public transport). I came out of hospital last Wednesday and while I have been tempted to cycle on the odd day since then – particularly on Thursday, when it was such a beautiful day – I haven’t done so. I know I like a challenge but I’m not stupid and I knew I had to take it easy to give my body a chance to get over the infection.

So we’re at Car 7 – Bike 3. With just five sessions left, the best I can aim for is an 8-7 win. But a win is a win. To get it, I’ll have to cycle to radiotherapy every day this week. No pressure there. I’ve almost finished my course of antibiotics, I’ve had a very restful few days and so I’m up for trying. It’s a shame that on a couple of days the weather forecast is really not good.

Perhaps I should do as a friend suggests and just let it go. She could be right. There will be plenty more opportunities for cycling challenges. However, I’ve lowered my expectations over a good few things these past months, and as this is my final week of hospital-based treatment, there won’t many more of these particular types of challenges. I may be setting myself up for failure, but I’ve got to give it a go. I wouldn’t be being me if I didn’t.

I’m off to get my bike.

Post-op progress report No 3: One month on and things are going well

It’s exactly a month since my operation so it seems a good day to report on how my recovery is going.

There’s been considerable progress since the previous update on 3 January (Post-op progress report No 2: A bit of a moan). In a nutshell, it’s going well, although it’s still early days. I’m so much more mobile than I was a couple of weeks ago and everything is healing well. Today I drove for the first time since the operation, and was delighted to find that apart from the odd twinge in my upper arm I was absolutely fine.

I’ve stepped up the range of arm, shoulder and abdominal exercises I do, and also the number of reps I do of each. I do my abdominal exercises on the floor now rather than on the bed, with no fear I’ll get stuck and not be able to get up (Post-op progress report No 1: Biting off more than I can chew)!

My various scars are all looking good, or in the techie speak of the oncologist in her latest letter outlining my progress, “physical examination revealed excellent healing”. I have four scars:

• one where the breast meets the chest where they made the incision for the mastectomy and reconstruction and where the “flap” they took from the abdomen for the reconstruction is attached
• one under the arm where they removed the lymph nodes
• one around my tummy button, which had to be detached from the abdomen skin and then reattached
• and the pièce de resistance, the hipbone to hipbone beauty. The plastic surgeon removed the last of the original dressing from the abdominal scar when I saw her this afternoon and declared herself happy with it. There’s a small areas where it’s opened and that still needs a dressing. The scar on the whole is surprisingly thin.

While I have no control over how I’m healing, I can’t help feeling quite proud of my body for doing so well. It’s the least it can do after letting me down so badly by getting cancer in the first place. I’m also rather gratified that, as I’d hoped (Just generally falling apart), the results of the bone mineral density scan I had before starting hormone therapy showed that I have strong bones for my age. This matters as the treatment I’m on increases one’s risk of developing osteoporosis (Breast cancer does indeed “come with baggage”); it’s good to know I’m starting from a relatively high baseline. All that tennis and running and whatever other weight-bearing exercises I did in the past clearly paid off.

On a more trivial point, three weeks to the day after my operation I managed to get back into my jeans; up until then I’d been wearing trousers with elasticated waists. And yes, with my surgically shrunken midriff*, the jeans are MUCH looser round the waist than they were before!

For all the progress, though, there’s a long way to go. There is still considerable discomfort and soreness (pain?) around the upper scar areas and the upper, inner arm area is still very tender. It’s still tight around the abdominal scar and that affects general  mobility. I still have to take care getting out of bed, for example; in fact it occurred to me this morning that I may in fact have forgotten how one normally gets out of bed! There are lots of things I’m not even allowed to do yet with the operated arm. Yesterday, I reached up to get something from a high shelf in the supermarket and was quite dismayed to find I couldn’t get anywhere near it and had to use my left arm instead.

It’s the cording in the lymph vessels under the arm (A busy week with welcome news – “no further surgery necessary”) that’s restricting my arm movement and the miracle-working physiotherapist spent the best part of a 45-minute session this morning working on that. She and the consultants all tell me I’m doing well considering it’s less than five weeks since the op.

Fluid is continuing to collect in the breast/underarm area. I’ve now had fluid drained from the two areas where I was operated on a total of four times: on the third attempt, 200ml was finally extracted from my abdomen (A busy week with welcome news – “no further surgery necessary”) and to date from the underarm/breast area on separate occasions I’ve been relieved of almost 400ml, 100ml and, just yesterday, around 280ml. This will eventually settle down but it could build up again and require draining several times in the meantime.

I still tire easily. I regularly sleep for more than ten hours (albeit with interruptions quite often at around 5.30am from the numbness and tingling in my right foot that’s a side effect from the chemo and then again when the boys are getting ready for school and Andy for work). Getting ready in the mornings – showering, dresssing, first set of exercises – takes time. I’ve had a couple of evenings out and have been wiped out the following day.

Importantly though, it seems I’m on track to start radiotherapy – essentially the final stage in the hospital-based treatment of my breast cancer – in early February. I had my first meeting with the oncologist who’s in charge of my radiotherapy earlier this evening and we agreed that I’d have my radiotherapy planning session on 25 January, with a view to starting treatment on 4 February.

On balance, then, a positive progress report. Reading over this post, though, I’m concerned it sounds too negative given that my physical recovery is clearly going well. The fact that I’m tired probably has something to do with it. Today was a long day, with three different appointments – the physio, the plastic surgeon and the new oncologist. They all went well, but I did find myself thinking on the drive home from the last one that I’d had enough and that it would be nice if it were already all over. With everything else that’s happening (In Glasgow again, but for the saddest of reasons), I guess it’s not surprising I feel less upbeat than usual.

*I can joke about this now that the operation’s over and the recovery is going well, but before my op I really did find any talk of free tummy tucks quite offensive. You ladies who are reading, what would you rather be? Fit and healthy with a bit of surplus tummy fat or a breast cancer survivor with a flat tummy? I defy anyone to choose the latter.

 

 

 

 

 

 

 

 

 

Post-op progress report No 2: A bit of a moan

This didn’t start out as a moan but that what it’s turned into.

Things have been going ok but yesterday, for whatever reason(s), I found it really hard to straighten up when I was up on my feet and walking about. The abdominal incision felt really tight all day. It doesn’t feel that different today.

Also, I’ve realised I’m holding my right shoulder lower than my left and my right arm at a funny angle, presumably because of the nerve pain (I’m assuming it’s nerve pain) in my upper right arm. The pain is normal, apparently, and happens because some nerves are cut during the operation to remove the lymph nodes and need to repair themselves. This can take a few weeks or indeed months.

Also, the reconstructed breast is pretty swollen. It has gone from looking perfect to looking anything but. Again, apparently swelling is normal and it can take 4-6 weeks for things to settle down. I saw the plastic surgeon on 29 December and she did try to drain off some of the fluid she could feel – in the breast and the tummy – but nothing came out.

There are other things that have nothing to do with the op that I may as well include here.

First and foremost, the peripheral neuropathy or nerve-ending damage in the ball and first three toes of my right foot that started during chemo (An “excellent response to treatment”) is back with a vengeance. It manifests itself as numbness and tingling and while it almost disappeared while I was in hospital – perhaps because I was on so many painkillers? – it’s been creeping back since I came home and the night before last it kept me awake for what seemed like half the night.

I’m also still losing eyelashes and my eyebrows, a good month after finishing chemo. That doesn’t seem fair, although I’ve read that they can grow back and fall out several times before they finally grow back and stay.

Finally, another toenail has fallen off.

On the upside, this is my first day without painkillers and nothing feels any more painful than it did yesterday when I was still taking them.

I was feeling ok until I wrote all that down. Now I think I’m going to stay sitting on the sofa, wrap myself in the seriously comfortable blanket a friend gave me for Christmas (THANKS!), and not move all day.