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.

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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.

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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.

When losing counts as a massive win

I was beaten two sets to one in a two-hour tennis match earlier today but I have no hesitation whatsoever in counting this particular loss as a massive win.

This was the first league match I’d played since I was diagnosed with breast cancer last summer. I carried on playing tennis throughout chemo but I dropped out of the leagues and this was my first league match in ten or 11 months. It would have been nice to win but the fact I was playing competitively again really was prize enough.

As you all know by now, the cancer was in my right breast and the right axillary lymph nodes. Given the type of surgery I was to have – mastectomy and removal of all the lymph nodes under my arm – I really was worried that my competitive tennis days might be over. My concern may have been misplaced but the fact is that some women who have their lymph nodes removed afterwards have long-term problems in terms of shoulder, arm and hand strength and mobility on the operated side. And I don’t have to remind you of how terrified I was of developing lymphoedema (Fear of lymphoedema).

I don’t appear to have problems on the mobility or strength front and while I have developed lymphoedema in and around the operated area (Looking forward to a “much more symmetrical overall shape”), there’s apparently no evidence to show that playing tennis increases the risk of it developing in my arm. At least two consultants have encouraged me to go ahead and play, as long as I feel up to it (Acupuncture, tennis, a haircut and going back to work & Should I play tennis? “Yes, just don’t play Federer.”). And so I found myself on court this morning.

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The lovely Grafton tennis club in south London

It’s now five hours since the match ended and my arm and shoulder feel fine. And mentally I feel great, which is not usually how I feel when I lose, especially after winning the first set! There are still aches and pains and problems to solve in and around the operated area but it’s a huge relief that they don’t appear to affect my tennis-playing capabilities.

I lost 6-3, 4-6, 3-6. Not too shabby, all things considered.

Happy Bank Holiday Monday!

“…3, 2, 1 and relax. Congratulations!”

I’d heard the radiographers count down from three then tell me to relax dozens of times during the 15 sessions of radiotherapy that I’d already had.

I’d to hold my breath seven times during each session as the radiation was delivered (A very strange position to be in (Radiotherapy Part 1)).  “3, 2, 1… and relax” was what the radiographers said through the intercom at the end of each hold to let me know I could start breathing normally again.

This time was different. It was Friday 26th February and it was a big day. It was my 16th and final radiotherapy session and it marked the end of the hospital-based phase of my breast cancer treatment. That’s why the radiographer guiding me through that session added “congratulations” after his final instruction to relax. Now for all I know they say that to everyone at the end of their last session. Regardless, I really appreciated the gesture. The moment deserved to be acknowledged. I’d been preparing for, having or recovering from treatment for seven months. Since last July, I’d had chemotherapy, major surgery involving a mastectomy, immediate breast reconstruction and axillary lymph node clearance, and finally, radiotherapy. Less than a month after I’d had surgery, my dad died. His funeral was in Glasgow on 1st February, I came back home to London on the 3rd and started radiotherapy on the 4th.

The day of that final session was an emotional one. I’d been in tears within seconds of waking up, from relief at having got to this point. I’d been expecting to burst into tears the second my last radiotherapy session was over but I was distracted by the radiographers chatting to me about how I felt the sessions had gone, asking about my plans for the rest of the day, getting me to sign the treatment completion form, warning me that the side effects from radiotherapy can continue to happen for another couple of weeks and giving me a leaflet about finishing treatment. My composure didn’t last long, though. I’d to have dressings reapplied to where my skin had reacted badly to the radiotherapy and I started to lose it as I walked from the radiotherapy suite over to the treatment room. Once inside, I sat down on the nearest chair and out it came. The tears only lasted a minute or two and I think I can be forgiven for feeling somewhat overwhelmed by the occasion. The radiography assistant who applied the dressings was very understanding. I guess they’re used to it.

There were more tears throughout the day when the enormity of what I’d gone through would hit me or I’d think of how different the day would have been if my dad had been around to share it.

I’m glad I waited a while to write this. I look back now and recall a lovely day. Cycling back from my appointment in the sunshine later that morning (Bike 8 – Car 7. Victory is mine.), I remember feeling immense gratitude towards everyone involved in my treatment. Just as I got back home I bumped into a neighbour I hadn’t seen for a while and we’d a bit of a chat. I got a massive hug from our cleaning lady. I had lunch with my tennis buddies, tea later in the afternoon with some good friends and lots of people got in touch to say congratulations. Andy, the boys and I finished the day off with our traditional celebratory family meal. You know the one (More good news)… lasagna, garlic bread and salad. This time the champagne was better than usual. We toasted ourselves and we toasted my dad.

In the end it was a day of huge relief and quiet celebration. It’s a day I won’t easily forget.

 

Should I play tennis? “Yes, just don’t play Federer.”

As soon as I’ve recovered from my radiotherapy treatment and assuming I’ve regained sufficient mobility and strength in my right arm and shoulder, I plan to get back on the tennis courts. I was concerned that the movements involved in playing might increase my risk of developing lymphoedema but the consultant oncologist in charge of my radiotherapy reckons otherwise.

I’ve made no secret of my fear of developing this condition (Fear of lymphoedema) in my operated arm and I hadn’t been able to find a clear answer on whether tennis would increase the risk of getting it or not. I came across a biography of the consultant online and read that she played tennis so I asked her at our first meeting last week (Post-op progress report No 3: one month on and things are going well) whether, if she’d had the same surgery as me, she’d go back to playing.

The consultant’s answer? A definite yes, with a caveat, though: “Just don’t play Federer.” I wasn’t planning to, so I guess that’s fine. She reckoned the different kinds of movements you make with your arm and shoulder playing tennis don’t constitute the vigorous, repeated arm and shoulder activities that women at risk of lymphoedema are advised to avoid. This consultant says I have a 10-15% risk of developing lymphoedema; I’d been told before it was around 25%, so that was good to hear too.

The plan is for me to have radiotherapy every day excluding weekends* for much of February, starting on the 4th and finishing on the 25th. It should take me a while to recover from that and more in general from the overall battering my body’s taken over the past six months or so. And I guess this hardening of the lymph vessels, or “cording” (A busy week with welcome news – “no further surgery necessary”), in my right armpit and more recently also down my right arm will need to be resolved. Once that’s done, though, I should be able to start hitting tennis balls again. I’ll have to build things up slowly and take it easy at least to start with. I’ll still worry about lymphoedema, but with that encouragement from the oncologist perhaps not quite so much.

*Radiation affects the healthy tissue in the area being treated and the two-day pause in treatment each week is it allow your body to repair this damage.

Paris and being where I never thought I’d be

Now that it’s happened a second and third time, I realise this urge to take my wig off and have a photo taken at the tops of high places is all about wanting – and perhaps needing – to record instances of being somewhere I never thought I’d be while undergoing chemo.

The first time was earlier this month at the top of a hill in Wales (The Great Sugar Loaf Uncovering). Then this past weekend it was in Paris, where we’d gone for a few days, once at the top of one of the towers of Notre Dame cathedral mo ndand then at the top of the Eiffel Tower.

I really thought I’d be so wiped out with the chemo that I wouldn’t be able to do much of anything at all in a physical sense.  But since starting the sessions just over three months ago, I’ve managed to keep playing tennis, I’ve been out for a couple of short runs, I’ve kept cycling to some degree (if not outside then on training rollers inside), I did that hillwalk in Wales and now I’ve conquered these two Paris landmarks.

The last thing I want to do is give the impression that chemo’s been a walk in the park as it really hasn’t been (“Maureen is tolerating the chemotherapy remarkably well”… just not today). There have been some days – but thankfully not too many – when it’s taken a real effort even to move from the sofa. Also, I still have three sessions to go, although after tomorrow’s session it’ll be down to just two. But I’m hugely relieved – not to mention happy – I’ve been able to do so much. There’s an important lesson here for all us about the pointlessness of expecting the worse.

To get to the top of the Notre Dame, my husband, two boys and I climbed a total of 387 steps up a couple of very steep spiral staircases. You go up in groups of around 20 and, while I was sweating by the end of both the first and second levels, I definitely wasn’t the only one in the group who found it hard going. It was well worth it, though, for the views and the sense of achievement in equal measure. In the photo it looks like those chimeras* are about to take a bite out of my head!

Managing that inspired me to tackle the Eiffel Tower. So on Sunday night, Jamie, Finlay and I climbed the 704 steps to the 2nd stage. That was in fact easier than the near-400 steps at Notre Dame. The Eiffel Tower steps are nowhere near as steep as the steps in the cathedral tower, you’re outside so it’s cooler and there are plenty of places to stop to rest. You get the lift to the top from the 2nd stage, which is where the photo was taken. m te 2

The blue light in the background is the laser beam from the tower. In the photo it’s the exact same colour as my jacket, but to the human eye it was white. All credit to my boys for this photo. As I prepared to “de-wig”, I asked if they were ok with me doing this. They both looked at me as if I were mad (good to see some things never change!) and one simply said “Why wouldn’t we be?”. I do wander around the house bare-headed so they are used to it.

There’s no need now for any more photos like these. I know I can do it. Also, I’m really not sure where I’d go or what I’d do next!

*Today’s architecture lesson… These are chimeras, not gargoyles. Gargoyles were built into the ends of the gutters to drain rainwater off the roof; chimeras are used as simple decorations.