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.”mo-parkrun-edit-2

“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.

 

 

 

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.

grafton
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!

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.

 

Looking forward to a “much more symmetrical overall shape”

At my latest meeting with the consultant plastic surgeon, we more or less concluded that if the various ongoing issues relating to my reconstructed boob resolve as well as she hopes over the coming months, there may well be no need for further surgery.

That would indeed be a result. Don’t take it personally, I said, but I’d be perfectly happy for you not to operate on me again. In fact, in the run-up to the appointment, I’d pretty much come round to thinking that, regardless of how things “resolve”, I’d really rather not have any surgery that’s not entirely medically necessary. I might change my mind, but that’s how I feel at the moment.

With the procedure I had, a DIEP flap reconstruction, the surgeon(s) build a new breast from skin and fat taken from your abdomen and transferred to your chest using complex microsurgery. In my case it was done immediately following my mastectomy, last December. It’s not usually a case of “one and done” (nice phrase); there is nearly always a later surgery to make adjustments.

Here’s the state of play. There’s swelling caused by lymphoedema in the right breast and right “flank”. (Flank? It makes me sound like a horse.) There are dents caused by skin tethering in a couple of places and there’s scar tissue where the lymph nodes were removed. The plastic surgeon and I compared how things are now with how they looked in the photos she took at our previous appointment at the beginning of March (It’s not over ’til it’s over). There are definite improvements on the tethering and scarring front, but things aren’t exactly a great match, if you get my drift. In the words of the consultant who’s managing the lymphoedema treatment I’m about to start – and I’m aware this might be too much information for some of you, but hey ho – the right breast is “elevated and very swollen”. Things even up a bit if I hold my right shoulder down and my left shoulder up, but you can’t exactly walk around like that all day, can you? Seriously though, when I’m dressed, you don’t notice the lopsidedness (or perhaps you do and people are just too polite to say).

Re the swelling, some of my more fitted tops are so tight across the chest on the right side that they’re pretty much unwearable. Add to the mix the god-awful bras (The least sexy washing line ever) that I still have to wear. These are so huge and cover so much flesh that if I wear anything more than the most modest of tops, I risk flashing what has to be the ugliest lingerie ever. All in all, my above-the-waist clothing options are currently rather limited.

This probably sounds a lot worse than it is. Even with the various issues, the reconstruction is amazing.

On 5th May, I’m starting an intensive course of lymphoedema treatment – daily one-hour sessions for 15 consecutive working days of a specialised, gentle type of skin massage or manipulation that’s aimed at reducing the swelling. It’s hoped this manual lymphatic drainage will lead to the tethering releasing and the dents filling out, to whatever degree; it might also help with the tight scar tissue. The ongoing physiotherapy I’m having should also help. If this all happens, the plastic surgeon reckons “the overall shape will be much more symmetrical and it is likely you won’t need any further surgery”. Yay!

And if things don’t resolve as well as we hope? Well, if the swelling goes and I’m still lopsided and dented, I could have two procedures, a lift on the left (yes, really) to make it match the new one on the right and fat grafting on the right to get rid of the dents. This latter procedure would involve taking fat tissue from my thighs or buttocks (either way, ouch) by liposuction, processing the tissue into liquid and injecting it into the reconstruction. And women have this done voluntarily?

If the swelling and dents don’t go? Let’s just wait and see.

On the breast lift front, I have to say I still feel much as I did when I was considering whether to have reconstruction in the first place (“Are you happy with the size?”), ie that I really don’t feel comfortable messing with the good one. I think I could live with them being less than a perfect match. If my various scars needed tidying up or there were lumps (of dead fat tissue) in the reconstruction that needed removing, I’m sure I’d be keener to go ahead with a Phase II. The scars have healed really well and there are no lumps in the reconstruction. So as things stand, I’m hoping I end with Phase I. That has to be a good result for the surgeons too, to have done such a good job in one go – a “one and done”.

It’s not just about appearance, though. How you feel about it emotionally is also massively important, as is how it feels physically and how you recover from the operation. The latter two points obviously influence the first. I’m kind of surprised that I’ve given over so many column inches on this blog to how it looks. It think it’s partly because my mind boggles at the complexity of the medical procedure and the skill of the operating surgeons. I look at it and think what an amazing piece of human engineering. Importantly, it’s also a reminder of how well my cancer treatment went (A busy week with welcome news – “no mass identified” and “no further surgery necessary”). Also, I remember just how good it looked in the weeks immediately after the operation; whatever my expectations were, they were far exceeded.

I’m very happy with things and don’t regret my decision to go down the reconstruction route. It was a tough choice (Decisions you never dreamt you’d have to make). There’s no sensation at all in the breast or nipple. This was always going to be the case, but it takes a lot of getting used to, believe me*. As for recovery, well four months on and – removing the lymphoedema from the equation – things are good. There’s still a slight ache inside where the breast meets my chest when I wake in the mornings but it soon goes away. I feel a pulling inside when I make certain movements, and that feels strange (that could be the cording, though, rather than have to do with the reconstruction or mastectomy).  The area surrounding the reconstruction is still a strange mix of tender, numb, tingly and achy. That all causes more or less constant low-level pain and discomfort and while it’s annoying, it’s bearable. That’s not to say I wouldn’t love it all to go away. Hopefully it will. It’s much better than it was.

Yesterday, I met the therapists who’ll be doing the MLD and had a bit of a taster session – I can’t wait to write about that! They seem confident they’ll get results. I next see the plastic surgeon in early July. We’ll see how things look – and feel – then.

*This lack of sensation – most of the nerves are cut during mastectomy and reconstruction and the area becomes numb – is very bizarre. When you touch the reconstruction with your own hand, it feels much like your other boob (at least it did before all the swelling). If someone else touches it – no sniggering now, we’re all adults! 😉 – you feel absolutely nothing. Now the following info is new to me and I just have to share. The nerves have the potential to regrow as the nerves in the flap that was transferred from your tummy regenerate within the chest. If sensation is going to come back, though, it’s likely to take a year or two. Interestingly, it seems that if you have no sensation in your breast, you may get feeling back in the area next to your breast. Now check this, folks, “some women find that the armpit next to the reconstructed breast becomes tremendously sensitive to touch and is a new erogenous zone”. Come back in a couple of years and I’ll let you know how it’s been for me.

It went downhill from there

Not long after the excitement of getting back on the bike last Tuesday (In the end, the wig ditched me), things started to go downhill.

I’d been feeling really tired since starting radiotherapy towards the end of the previous week, on 4th February, but I started to feel physically unwell as well as tired last Thursday. Also, the reconstruction was looking red and more swollen than usual. Skin reactions to radiotherapy are common, but not that early in the programme; I was only five sessions in at that point. Things got progressively worse and they culminated in me being admitted to hospital this Monday evening – exactly half-way through my 16-session course of radiotherapy – for a short course of iv antibiotics to treat a rather nasty bacterial infection that I’ve developed of the skin and underlying tissue in and around the operated area.

I had a dose of antibiotics via iv injection every eight hours between arriving at the hospital late on Monday and leaving earlier today after I’d had the last of six doses (my doses were given at 10pm, 6am and 2pm). 20160216_063859The good news is that the infection is responding to the antibiotics. It hadn’t responded to a different antibiotic I’d been started on on Friday. I’m now back home, with a supply of oral antibiotics to take over the coming week.

I’m still tired – guess I’m stuck with that for a while – but otherwise I’m feeling almost fine. The extremely swollen, extremely red and extremely warm right boob is less swollen, less red and less warm than it was on Monday and the rash that covered nearly a quarter of my midriff looks much less angry and is receding. It really was quite impressive on Monday, but there are no photos, as there are things even I won’t photograph! Some areas feel a little sore and tender but it would hurt a whole lot more if I weren’t numb in most of that area following the operation back in December. Every cloud, eh?

For those who like details, I have breast cellulitis, a known but not common complication in women who’ve had certain types of breast cancer surgery. The consultant breast surgeon, who decided I should be admitted to hospital, said the infection needed to be cleared up “pdq”. (The consultant keeps trying to get rid of me but I keep coming back. I’ve now gone to him with one complication or another three times since he supposedly signed me off on 8th January, saying he’d see me in April for a three-month check-up.)

I’m aware this all sounds terribly dramatic. However, for most of the time I was in hospital – apart from the night I was admitted – I actually felt more or less ok, although you’d have found that hard to believe if you’d seen the infection.

This has been an interesting diversion in my breast cancer “journey” (I’m so sick of that term now). It has included:

  • two nights in hospital;
  • the best part of two days spent at home in bed with a fever and the shivers, either sleeping or just feeling really lousy;
  • another ultrasound scan, to see whether any fluid needed draining off – it didn’t;
  • a two-day break in radiotherapy while we got on top of the infection;
  • seeing two consultants who thought they’d seen the back of me for a while; and
  • more people than I care to remember examining my inflamed and burning hot boob.

I have had some lovely visits over the past couple of days… and the friend who came with me to hospital on Monday has finally accepted that I do have something serious wrong with me and that I haven’t just been slacking all these months!

I’ll start back at radiotherapy tomorrow. Coincidentally, it turns out that the machine was down both today and yesterday, which means I wouldn’t have had the sessions anyway. Maybe there was so much heat coming off me during my session on Monday that I caused the machine to shortcircuit! To make up the two missing sessions, I’ll have one this Saturday (they’re running Saturday sessions to work through the backlog) and they’ll add one on at the end. Assuming all goes to plan from now on, my final radiotherapy session will be on Friday 26th February.

Onwards and upwards.

 

Being a ninja and benchpressing cadillacs

I really don’t buy into the idea that what doesn’t kill you makes you stronger cadillacso I loved this cartoon about benchpressing cadillacs when I came across it.

Challenges such as having cancer are life changing for sure, but it’s clearly nonsense to say that every hard knock you take in life makes you stronger. I’ll come out of this different, certainly. Chastened, definitely, and more appreciative of what I’ve got and grateful to be alive. But stronger? I’m really not sure. Anyway, as my two teenage sons would say, what does that even mean?

As for this second cartoon, about God and ninjas, I just love it. ninjaThat really is the way I would feel at the moment if I were at all religious.

All the way through my treatment, I was determined to stay positive and work my way through it, taking things as they came. I was determined not to feel too sorry for myself… and I didn’t want anyone else to feel sorry for me either. Then my dad died (In Glasgow again, but for the saddest of reasons) and I thought, ok, there really is only so much a person can be expected to handle at once. So when a friend posted a version of the ninja cartoon on Facebook* the other day, I thought that’s got my name written all over it.

Even now though, I can’t bring myself to be too despondent. It’s tough, but my treatment has gone well, I have an amazing support network of family and friends, I’ve learned a lot, made new friends and met some amazing people, etc, etc. As I’ve said before, things could be worse (It’s not all bad).

That said, it would have been nice if Scotland had beaten England at rugby in the Six Nations Tournament yesterday! And this weekend I’d have loved to have been sorting out my own ski gear as well as helping Andy and the boys sort out theirs for when they head off to France this coming Sunday for the half-term week… while I stay here and plough through a week of radiotherapy.

To be fair, it was I who persuaded them to go skiing. Andy took a bit of convincing but for the boys it was a no-brainer. Hang about in London with mum at home most of the day cramping their style or go skiing with dad and friends? I know what I’d have chosen. “Do you think it’s right to go skiing without mum?” Andy asked them a while ago. The reply: “Well no offence to mum, but she goes skiing without us.” Fair enough, I guess (I love Glasgow, but it’s not Geneva). I think I can hear the sound of chickens coming home to roost.

I genuinely hope they have loads of fun. I’ll enjoy it all the more if I go next year for not having gone this year.

*The cartoon that the friend posted on Facebook was funnier than the one I’ve used here. The FB one used the real f word – but my mum reads these posts so I looked for a version that wouldn’t offend her! 

 

 

 

 

 

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.