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.

 

 

 

 

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.

My nails? Sensitive didn’t even begin to cover it.

Well I was warned that certain chemotherapy drugs can cause your nails and nail beds to change colour, become dry and brittle, cracked, grooved and/or ridged, lifted, or sensitive.

Dry and brittle, ridged and discoloured I can cope with. I can even accept losing a couple of toenails. That’s all cosmetic, and even though it might take some time, it’ll all get better after treatment finishes. I just didn’t imagine the “sensitive” side of it would be quite so painful. Sensitive didn’t even begin to cover it.

At least now my fingernails and thumbnails (but mostly my thumbnails) are no longer so tender and sensitive to the degree that I’m unable to carry out lots of daily tasks that you usually take completely for granted. But they were for around three or four days last week.  Any grasping or pressing, especially involving the thumbs, was very, very painful. Unscrew the lid off a new milk bottle? Not a chance. Pull the stalk off strawberries? No way. Open a tin of tuna? No. Do up the button on your jeans? Just. Press the button on the ticket machine in the supermarket car park? Doable, but only just. Turn taps on and off? Painful, but doable. Tap your PIN in at the supermarket checkout? Same. Peel an orange or a banana? You’re having a laugh. I even needed help taking my socks off a couple of times.

My thumbnails and a few other fingernails are now a bit of a mess (yes, those are my hands in the photos). On top of that, one toe nail just completely fell off the other night as I was rubbing cream into my feet. At least one other toenail looks like going the same way. Hey ho.

If you happened to bang your nails on something, the pain was excruciating – a bit like when you hit your thumb really, really hard with a hammer. You have no idea how many times a day your thumbnails collide with something or other. Normally you don’t even notice, but when they’re tender, even the slightest knock hurts. You lock the door when you leave the house and your thumb nail hits the door. Agony. You dry your hands on a towel and your thumbnail hits the towel rail or the wall. More agony. You run your hand down the bannister as you come down the stairs and you bang your thumb on the post at the bottom. You literally see stars. And so on, and so on, and so on. It’s just as well I was on my own in the house… no-one was there to hear the swearing. It really was that bad.

When I related a potted version of this to the oncologist at our pre-sixth chemo session review the day before yesterday, she did a series of tests to check for chemotherapy induced peripheral neuropathy, or CIPN, a known side effect of paclitaxel, the chemo drug I started two weeks ago. If I were to develop CIPN to any degree, we’d have to think about stopping the chemo as the trade-off at this stage between what the chemo’s doing to the tumour and the potential long-term damage it can cause to the nerves would no longer be in my favour.

The tests included me closing my eyes and the oncologist placing one object into one of my outstretched hands and another object into the other. I then had to make a fist with each hand and say what the objects were. For the record, they were a small coin and a paper clip. I guess if you had no feelings in your fingertips, you wouldn’t be able to work out what they were. Clever, eh? Last week, though, my problem was too much sensitivity, not a lack of it. And the problem was the nails rather than the tips of my fingers or toes. There were some signs of insensitivity in a couple of toes, but nothing too bad.

Yesterday’s chemo session – the sixth of eight- was uneventful. Let’s see what happens with the nails between now and the next session in two weeks’ time. I’ve trimmed them down to almost nothing, which seems a shame as they haven’t actually grown in the two-and-a-half months since I started chemo. I’m still rubbing in the drops I’ve been given by the clinic and I’m considering putting on some dark nail varnish. There’s a theory that because paclitaxel is light sensitive (a thick black plastic bag is put over the infusion bag to protect the drug from the light), dark nail polish has the same effect on your nails as the black poly bags do on the infusion.

I’ll be keeping my fingers crossed there’s no repeat of last week – at least for as long as I’m able to!