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.

 

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.

“…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.

 

A busy week with welcome news – “no mass identified” and “no further surgery necessary”

It’s turning out to be a busy week. There was some very welcome news on Monday, followed by lots of poking and prodding and pummelling over the rest of that day and the following day, but all to the good. There’s more to come; in fact by Friday afternoon, Wednesday will have been the only day this week I won’t have been at the hospital.

It’s funny, but since the operation on 19 December (mastectomy, axillary lymph node clearance and immediate reconstruction – Saturday’s op – a daunting prospect but a key step on the road to wellness), I’d been focusing so much on my recovery that the cancer had pretty much taken a back seat. However, it was very much back in focus as I headed to the hospital on Monday afternoon to hear from the breast surgeon on how much cancer there was in the removed breast and lymph nodes and whether I’d get to keep my own nipple on the reconstructed breast or whether it would have to be removed in a second operation.

I’d had what’s called a skin and nipple-sparing mastectomy. The breast surgeon had recommended this with the caveat that if any cancer cells were found when the tissue that was removed from directly behind the nipple during the mastectomy was biopsied, there would have to be a second operation to remove the nipple (Immediate reconstruction – the decision is made).

As with the reconstruction (“It’s perfect”), the mastectomy had been a technical success. If it had failed, the nipple would have turned black within six hours of the operation. It didn’t, thankfully. And as it turns out, there was good news on the biopsy front at Monday’s consultation. “No further surgery necessary,” the breast surgeon informed me. Needless to say, I’m both delighted and relieved at this outcome. I had expected to lose the nipple initially, but the fact that the chemo did such a good job (An “excellent response to treatment”) meant that a nipple-sparing mastectomy became an option. To have gone from assuming I’d lose it to thinking that I probably wouldn’t then back again to having to prepare to lose it after all would have been hard. So big smiles all round.

As for the removed breast, no mass was identified. Indeed, there was “no invasive in-breast disease” at all. If you consider that the tumour was initially probably bigger than 5cm across, you get an idea of just how successful the chemo was. As I’ve said before, the fact that the chemo worked so well on something we could see implies it’s had the same effect on any stray cells that may have broken away from the original tumour but can’t be seen while they’re on their way to try and cause havoc elsewhere in the body. And that, really, is the whole point of chemo.

On top of the mastectomy and reconstruction, I’d had a Level III axillary node clearance, which means that all the axillary lymph nodes on the affected side up to a essentially under the collarbone were removed. We knew at least one lymph node was “involved” – as the jargon goes – from the biopsy that was done in July. It turns out there were a “few scattered clusters” of cancer cells in seven out of the 10 nodes that were removed. That is the only fly in the ointment, albeit quite a big one.

Discussing the histopathology report was just one part of Monday’s consultation. The breast surgeon felt under my arm and announced I had developed something known as “axillary web syndrome” or “lymphatic cording“. Cording is a commmon occurence after breast cancer surgery involving the axillary lymph nodes and it’s when scar tissue develops in the lymph vessels from the armpit to as far down as the elbow. It feels like a tight cord – or a taut guitar string – under your skin. It’s harmless but disconcerting and it can be painful (it was). Also, because it’s tight, it cr_115996restricts your arm and shoulder movement. I told the breast surgeon I was already in the process of arranging an appointment with the physiotherapist; I assumed she’d be able to help. I subsequently got an appointment for the following day, ie Tuesday.

Also, the fluid build-up (known as a seroma) in the underarm/breast area and in the abdominal area above the scar that had started after Christmas (Post-op progress report No 2: A bit of a moan) had got worse, so the breast surgeon sent me down to the radiology department to see if they could drain the fluid off. Having used ultrasound to locate the fluid, they extracted using a needle and syringe almost 400ml of fluid from the underarm and breast area. That’s more than is in a can of Coke, a friend helpfully pointed out. If you think of it that way, you can imagine how much more comfortable I felt afterwards. This might have to be done a few times before things settle down.

They tried very hard to drain the tummy area but try as they might and despite it feeling like there’s a bag of water in there, nothing came out.

Before the physio session on Tuesday, I had an appointment with the plastic surgeon. The reconstruction is looking good again now that the swelling’s gone down. The surgeon replaced some of the dressing on the abdominal scar, gave me some advice on scar care and tried to drain off some of the fluid from the abdomen and some more fluid from the breast. To no avail, on both counts. So she referred me back to the radiology department, where they’ll have another stab (literally!) at the abdomen later today.

At the physio session, the physiotherapist spent a considerable amount of time massaging the cording and loosened things off to such a degree that I had far more mobility in my arm and shoulder than I’d had when I entered her office just an hour earlier. Again, smiles all round.

I see the breast surgeon again tomorrow. As I said, a busy week. Then next Monday, I have an appointment with the oncologist followed by my second physio session. Also sometime soon, I need to meet the consultant who’ll be in charge of the radiotherapy part of my treatment. There’s a lot involved, isn’t there?

 

 

 

 

 

 

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. I’d decided I’d do my tummy exercises on the floor just where I was rather than climb two flights of stairs – which I can do fine now – to the bedroom where I’d do them 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 the recovery 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.

20151224_132839Nothing 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!

 

 

The least sexy washing line ever

It occurred to me as I hung up some items of clothing to dry over the radiatior rail that this was possibly the least sexy washing line ever. Check out the photo below… I’m telling you, with breast cancer it really is all glamour.

Starting from the left, we have:

20151225_090653Item 1: the wig liner, to stop your wig sliding round your head.

Item 2: the post-op bra, to support your reconstructed boob. Look at the SIZE of that thing! Andy reckons you could use it to transport bricks.

Item 3: the anti-DVT socks/stockings, to be worn 24/7 for the first week after the op then during the day for another two weeks.

Item 4: the compression knickers, to stop you feeling like your insides are going to fall out through your abdominal scar.

I know what you’re thinking and yes, I know and I do apologise… the bra and pants don’t match.