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.

 

 

 

 

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!

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.

Post-op progress report No 1: Biting off more than I can chew

I realised I’d bitten off more than I could chew when I found myself on my back on the living room floor, unable to get up, with no-one in the house to help. I know, funny image, but I wasn’t laughing.

That was on Monday afternoon. Andy and the boys had gone out for a couple of hours; I’d said I would be fine. I was being lazy and decided to do my post mastectomy/DIEP flap reconstruction tummy exercises on the floor just where I was. The alternative was to climb two flights of stairs – which I can do fine now – to the bedroom and do the exercises lying on the bed.

What I’d failed to take into account was that getting up from the floor would be so much more difficult than getting up from the bed. Even getting out of bed is still quite painful because of the strain on the hip-to-hip incision when you roll over from your back on to your side, then again when you swing your legs over the edge of the bed and yet again when you have to get into a sitting position on the edge of the bed so you can stand up. I still can’t use the operated arm (the right one in my case) for support and my left arm isn’t the support it normally would be as it still hurts from where all the needles went in for the various “lines”. So basically all I could use to get up from the floor were my legs and abdomen… and anything that stretches the incision too much is very painful.

Anyway, I managed to manoeuvre myself, still on my back, over nearer the sofa and somehow used that as leverage to get myself up and back on my feet. Or rather back on the sofa, which is where I spent most of the rest of the day. Lots of pain involved. Lots of swearing involved.

That episode notwithstanding, I think my recovery from the major surgery I had less than two weeks ago is going well.

It’s hard to believe we’re already on Day 11 post-op. You do make considerable progress day by day, but I still tire easily and there is pain involved in doing the most mundane things, even when you’re on painkillers. I spend a lot of time on the sofa, reading, watching TV (I’m on Series 2 of House of Cards and loving it) or writing. It still hurts to sit down and to stand up. Getting into bed is relatively easy at this stage. Manoeuvring while in bed is not.

Things are generally fine when you’re sitting down and not moving although there is a constant painful numbness on the underside of my right arm from my armpit almost to my elbow. I’m hoping that will go in time. I’m following instructions and am doing next to no weight bearing or carrying with my right arm; also at this stage I’ve not to lift my elbow any higher than my shoulder.

On the upside, I can shower standing up although drying and dressing myself takes an age. I can stretch my legs out flat in bed; previously I’d needed a pillow under my knees all the time I was horizontal. I still can’t quite lie completely flat and sleep on my back propped up on two pillows with one cushion under my knees and another by my right side on which to rest my right arm.

I can more or less stand up straight, although once I’m on my feet it takes a good few minutes of loosening up to get there as everything tightens up when you’re sitting down and not moving.

Nothing hurts anywhere near as much as it did a week ago, or indeed even a few days ago. I can now laugh – a little – without doubling up in pain. It still really hurts to cough although not so much that I need to resort to the wonderfully low-tech but effective “bracing device” that you see in the photo – a rolled-up towel held together with tape. One of the nurses put one of these together for me when I was in hospital. If you press it onto your incision while you cough or laugh, it decreases the stress on your incision and you feel less pain than you otherwise would.

I can walk quite well and I make a point of going out – accompanied – for a short walk every day now. Yesterday I ventured out by myself for the first time – to the doctor’s surgery just round the corner to put in a prescription request for iron tablets (anaemia is common after major surgery and for the first time in my life I’m anaemic; I’m to take one tablet three times a day for the next three months).

I’m doing my arm and shoulder mobility exerises and abdominal exercises as directed; they’re going ok. We step them up in week 3 post-op. However well things are going, though, I think I’ll stick to doing the tummy exercises on the bed for a while yet!