Sod the compression bra, it’s summer!

I decided I’d had enough of compression bras when I was getting dressed one morning about a month ago.

I’d been advised a good few months ago now to wear a compression bra as a matter of course to deal with the breast lymphoedema I’d developed as a result of my breast cancer treatment. I’d been very compliant… up until this particular morning. The sun was shining. It was a lovely day. I’d tried on at least half a dozen summer tops and still hadn’t found one that covered the monstrosity I was wearing. I looked in mounting frustration at the growing pile of discarded tops on the bed and thought sod it, it’s summer. I ripped the offending garment off, put on a normal bra and happily put on the top of my choice. It sounds pathetic but I can’t begin to tell you how good it felt.

So how does the lymphoedema manifest itself? I clearly have a mild case but things are a little swollen in and around the operated area on the right hand side. Andy insists you don’t notice it when I’m clothed. I think you can, but I’m probably paranoid. I pointed it out to Andy in a photo. He peered hard. “If someone was looking at you that closely,” he joked, “I’d have to hit him.”

I don’t know whether it’s down to the surgery (mastectomy, reconstruction and lymph node clearance) or the lymphoedema but there’s still general discomfort and tenderness in the whole area and occasional pain. I’ve stopped running for trains on the tube to avoid bumping into anyone as I dive into a carriage. I don’t run down stairs for fear of tripping or falling. I’m careful in crowds. I brace myself when people give me a hug and hold myself in such a way that when they do they avoid the affected area.

I’m keeping up with my daily lymphatic drainage routine. The compression bra (or heavy duty sports bra – they do the same thing) still gets worn with some regularity. I haven’t managed to get to grips yet with the kinesiology tape, which is also used in the treatment of lymphoedema. Yes, that’s me with the tape on in the photo, when I was having daily manual lymphatic drainage at the clinic back in May (Post-op progress report No 5). Drawing by Andy.

When I met the consultant who assessed the extent of my condition in April, she asked me to go through my recent medical history with her. As I told her what treatment I’d had, I could see her mentally ticking lymphoedema risk factor boxes. Axillary lymph node removal, radiotherapy, post-surgery cording, seroma drainage, cellulitis. Tick, tick, tick, tick, tick. I can tell you’re really not surprised I’m here, I said. She smiled.

Anyway, I guess it’s just something I have to get used to living with. It’s manageable, if inconvenient and a bit of a pain. Importantly, it seems to be pretty much under control. Let’s hope it stays that way.

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.

 

 

 

 

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.

Breast cancer “reminders”

Quite apart from coping with the emotional side of having had breast cancer, there are plenty of physical reminders to make sure I don’t forget what I’ve been through any time soon.

I was thinking I would list the various side effects I’m experiencing in order of annoyance but that’s hard to do. I have different types and levels of pain or discomfort in different areas and each side effect is annoying in a different way. Here goes.

Peripheral neuropathy. I’m still experiencing pain – numbness, tingling and throbbing – in the balls of my feet and toes as a result of the nerve ending damage caused by the chemotherapy drug paclitaxel. This comes and goes, ie it’s not constant, and while it is improving, on some days – if I’ve done a lot of walking, say, or have worn heels – it can get pretty bad. I can’t remember when it last woke me up at night but it’s usually the first thing I’m aware of physically when I wake up in the morning. This can take up to a year to get better, although in some cases it’s permanent. So I’m guess I’m playing a waiting game.

Post-surgical pain. I still have pain – numbness, tingling (but different from the feelings in my feet) and a burning sensation – in the upper inner part of my right arm and what feels like muscle pain where the reconstructed breast meets my chest and below and behind my armpit. This is much less painful than the peripheral neuropathy but it is annoying, as this pain is more or less constant so I’m aware of it most of the time. I’m pretty sure the muscle pain – or what feels like muscle pain – has got worse in the past few days. It’s at its worst when I wake up, especially if I’ve rolled on to my right side while I’ve been sleeping.

The numbness and tingling is caused by nerve damage that happens during surgery to remove lymph nodes from the armpit area. The effects subside as you heal – within about three months for most people – although they can last or become worse months after the surgery. The numbness and tingling is definitely not as bad as it was but it’s still annoying. Another waiting game.

Breast lymphoedema. I saw the radiation oncologist on Monday and, while the cellulitis (It went downhill from there) has evidently cleared up nicely, she mentioned the dreaded L word – yes, lymphoedema – with regard to the persistent swelling in the breast area. Early treatment is recommended to help prevent hardening of the tissues and reduce the risk of you getting cellulitis (please, not again!). So I’m to have a course of manual lymphatic drainage (up to fifteen sessions over up to six weeks), a very gentle form of massage that allows the lymphatic fluid that’s collecting and causing the swelling to be redirected to – untouched and undamaged  – lymph vessels in the vicinity where the fluid can drain away more easily. Also, later today, I’m to be fitted for a lovely compression bra. I’m assuming this will be an even sturdier version of the post-surgery bras that I’ve really never stopped wearing since my op on 19th December – other than for a few days during radiotherapy when I had cellulitis and a bad skin reaction to the radiotherapy – because there’s always been some sort of swelling or another. Compression treatment for lymphoedema puts pressure on the area where you have swelling, and the pressure helps the lymph to flow through the lymph vessels. It also acts as an extra force for the muscles to work against, which helps the fluid to drain out of the area.

The swelling is not painful in itself, I suspect mainly because I have no feeling in most of the area in question. At rest, however, my inner upper arm rests against part of the swollen area and this aggravates the already tender upper arm.

By the way, breast lymphoedema I can cope with (Fear of lymphoedema); please let it not spread to my arm.

Cording. Now that the cellulitis has cleared up, I can start having physiotherapy again on the cording, this hardening of the lymph vessels to form tight bands under the skin from the chest or under arm down to the elbow and beyond that can happen after breast cancer surgery involving the axillary lymph nodes. The cording is not painful as such but, again, that’s because I have limited sensation in the affected area. I also know to limit my movements so that it doesn’t hurt where I do have feeling. It’s only painful in those areas when I forget and try to stretch further than I am able to. With physio and the arm and shoulder mobility exercises I’m continuing to do every day, the cording should go over the next few months.

Hip-to-hip scar. I was really nervous about the potential consequences of the surgery to get the fat and blood vessels from my abdomen for my reconstruction. While the immediate aftermath was tough, it’s the part that’s giving me the least trouble now in terms of ongoing post-surgical pain and/or discomfort. The scar that runs from one hipbone to the other has healed well really well (there’s just one small area of less than an inch long where it’s a bit messy) and while the surrounding skin can still feel very tight and hard in some places, there’s no pain. Discomfort, yes, but not pain. I’ve been shown how to massage the area above the scar to loosen the skin up and I do abdominal stretching and strengthening excercises at least twice daily. Things should continue to improve.

Lost toenails. Chemo played havoc with my nails, especially my toenails (Note to self – keep your toes covered when trying on shoes). The nails on my two big toes are in the process of growing out and the nails I lost on four other toes are growing back in*.

I think that’s it on the physical side effects front.

And then there are the drugs:

Hormone tablets. I take one tablet of letrozole every day and will do so for the next five years, when I’ll move on to a different hormone therapy, for another five years. I count myself lucky in that I seem to be tolerating letrozole very well; I have no side effects to speak of.

Calcium and Vitamin D supplements. Letrozole can cause osteoporosis; the calcium and Vitamin D supplements I take daily are to counteract the effects of the letrozole in this regard.

Iron tablets. I’m still taking these three times a day for post-operative anaemia. I stop taking them in a few days, three months after my op.

Zoledronic acid. I’m to have my next cycle of the bone hardening drug, zoledronic acid, this coming Monday. Thereafter I’m to have it every six months for as long as I’m on letrozole. This drug – and other drugs of its kind (bisphosphonates) – is used in the treatment of post-menopausal women with early-stage breast cancer as it’s been shown to lower the risk of them developing osteoporosis and of breast cancer spreading to the bones. This treatment is given via an iv drip in the chemo unit at the clinic.

Now none of the lingering side effects I’ve described above is so painful that I have to take painkillers. And I’m otherwise quite well, if still pretty whacked. And it’s still early days and hopefully everything will get better over time. But for the moment these things are annoying and they do cause pain and/or discomfort. They – and the drugs and exercises that I still need to take or do – are obvious reminders of what my body’s been through over the past seven months. I used to think I’d been quite lucky in terms of physical side effects. Reading back through this latest post, now I’m not so sure. I guess it’s all relative and no-one said it would be easy. One thing is certain, though. Regardless of how I deal with the emotional side of things, physically I’m really not going to forget any time soon that I had breast cancer, am I?

*My fingernails are looking great, I’m relieved to report.