Why do we have to “battle” cancer?

Veteran BBC television and radio presenter Terry Wogan died earlier today after a “short but brave” battle with cancer. David Bowie died of the disease a few weeks ago after “a courageous battle”. Actor Alan Rickman followed Bowie; unusually, his family seemingly chose not to use any fighting analogy.

It seems if you’ve got cancer you’re almost always seen as battling or fighting it, more often than not bravely. We never hear of anyone dying of the disease after a lacklustre, take or it or leave it, weak-willed tussle.

Can’t we be allowed just to have cancer and get on with it? Especially if it’s terminal as it was with Wogan, Bowie and Rickman.

Should I play tennis? “Yes, just don’t play Federer.”

As soon as I’ve recovered from my radiotherapy treatment and assuming I’ve regained sufficient mobility and strength in my right arm and shoulder, I plan to get back on the tennis courts. I was concerned that the movements involved in playing might increase my risk of developing lymphoedema but the consultant oncologist in charge of my radiotherapy reckons otherwise.

I’ve made no secret of my fear of developing this condition (Fear of lymphoedema) in my operated arm and I hadn’t been able to find a clear answer on whether tennis would increase the risk of getting it or not. I came across a biography of the consultant online and read that she played tennis so I asked her at our first meeting last week (Post-op progress report No 3: one month on and things are going well) whether, if she’d had the same surgery as me, she’d go back to playing.

The consultant’s answer? A definite yes, with a caveat, though: “Just don’t play Federer.” I wasn’t planning to, so I guess that’s fine. She reckoned the different kinds of movements you make with your arm and shoulder playing tennis don’t constitute the vigorous, repeated arm and shoulder activities that women at risk of lymphoedema are advised to avoid. This consultant says I have a 10-15% risk of developing lymphoedema; I’d been told before it was around 25%, so that was good to hear too.

The plan is for me to have radiotherapy every day excluding weekends* for much of February, starting on the 4th and finishing on the 25th. It should take me a while to recover from that and more in general from the overall battering my body’s taken over the past six months or so. And I guess this hardening of the lymph vessels, or “cording” (A busy week with welcome news – “no further surgery necessary”), in my right armpit and more recently also down my right arm will need to be resolved. Once that’s done, though, I should be able to start hitting tennis balls again. I’ll have to build things up slowly and take it easy at least to start with. I’ll still worry about lymphoedema, but with that encouragement from the oncologist perhaps not quite so much.

*Radiation affects the healthy tissue in the area being treated and the two-day pause in treatment each week is it allow your body to repair this damage.

Random thoughts

Random thought No 1, on people’s kindness

So many people have sent or brought flowers over the past months that at times the downstairs of the house resembled a pop-up flower shop.

The photo shows a selection of what was awaiting me when I got home from hospital on Christmas Eve after my operation.

More generally, I’ve been overwhelmed by the kindness and thoughtfulness of friends and family and colleagues. I’ve received dozens of cards and all sorts of gifts to cheer me up. Folk have run errands and have driven me to appointments when I couldn’t drive. They’ve come to visit and accompanied me on walks, they’ve cooked for us and they’re still phoning, texting/emailing/facebooking/whatsapping to wish me well and ask about my progress.

It’s all very humbling and I feel extremely fortunate to have so many people looking out for me.

Random thought No 2, on being open about having cancer

I thought I’d told the world that I had breast cancer but even now I’m still bumping into people who’ve only just heard from someone or other that I’m not/haven’t been well. I’m glad I was open about it. I’d much rather have people cross the road towards me and ask how I’m doing than have them cross the road to avoid me because they’re not sure whether they’re “meant” to know or not.

Random thought No 3, on that lovely hospital look

While I was in hospital, I reckon I looked such a fright that if a child who had been visiting a none-too-ill relative had caught a glimpse of me pacing the corridor my first or second time out of bed, I’d have put him or her her off hospitals for life.

He/she would have seen me all bent over with a nervous look on my face, tottering along with tubes running from various parts of my body into a bright green plastic bag (that’s where we kept the drainage bottles when we went walkies), wearing a shapeless hospital gown, anti-DVT socks and little red bootee-type slippers. This last item is missing from the photo – saved you from that delight!.

Add to the mix a very pale face and a bald head (saved you from that too!) that at the time had faintly ridiculous looking tufts of mostly grey hair sprouting from it in a distincty random manner and you get the picture.

Random thought No 4, on loving the internet

You gotta love how the internet works. Over the past few months I’ve been receiving loads of spam email exhorting me to check out such gems as “The Best Breast Augmentation Providers”, “Breast Reduction Options”, “The Latest Tummy Tuck Options”, “Botox Options” and “Six Best Cancer Treatments”.

I’m pretty sure I didn’t get this type of email before I started blogging about my breast cancer diagnosis and treatment!

 

 

 

 

 

 

 

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.

 

 

 

 

 

 

 

 

 

In Glasgow again, but for the saddest of reasons

How do I work into a blog about my breast cancer and me the fact that my dad has just died? The only way, I’ve decided, is to come straight out and say it.

Because how else do I explain the fact that I’m up here in Glasgow less than a month after my operation (Saturday’s op – a daunting prospect but a key step on the road to wellness) when I really didn’t plan on moving very far at all from home in south London for a good six weeks?

I got a phone call at 5 o’clock on Sunday morning from the oldest of my five brothers saying my dad had died unexpectedly a couple of hours earlier.

That’s the dad who throughout my breast cancer ordeal asked questions about how I was really feeling that no-one else asked and that showed how much he cared and understood. That’s the dad who with my mum had phoned me every single day since my operation on 19 December to see how I was doing. That’s the dad who had recently taken to telling me he loved me at the end of every phone call. That’s the dad who again with my mum read my blog religiously and when I wrote about the bad days told me how sorry they were that I was suffering. That’s the dad who felt bad he wasn’t mobile enough to come down to London to be with me after my operation. And that’s the dad who was so, so grateful that I made it up to visit between one chemotherapy session and the next in September last year (It’s not all bad & Thanks, baby bro!) and then again before my final chemo session in November (I love Glasgow, but it’s not Geneva & 19 December – it’s official).

I declared myself fit enough to travel and took the train up to Glasgow on Monday afternoon, straight after my appointments at the clinic with the oncologist and the physiotherapist (A busy week with welcome news – “no mass identified” and “no further surgery necessary”). I’ve been here since, staying with my mum. Everyone is very conscious that I’m recovering from major surgery. Rather than me help look after my mum, she and I are being looked after in a sad but incredibly nurturing atmosphere by an army of carers comprising my brothers, sisters-in-law and an assortment of nieces and nephews.

Those two recent visits of mine were the last occasions my parents, brothers and I were all together. Over the past few days, we’ve wondered at the ironies of life and reflected upon the fact that these gatherings only happened because I had cancer. What’s lovely is that all of us – my dad very much included – appreciated at the time how fortunate we were to be together.

Later today I’ll head back home to London, where I’ll be until I come back up to Glasgow a few days before the funeral on 1 February. I’ll have been here these past few days for the saddest of reasons, but much as I’ve missed my three boys at home, I really couldn’t have been anywhere else.

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 restricts 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.

One down, just 3,652 to go

Yesterday I took the first of the 3,653 tablets I’m due to take over the next ten years as part of my long-term hormone treatment plan.

The oncologist said in her letter to the breast surgeon before my last chemo session in November last year that I should start hormone therapy as soon as I was recovered from my operation of 19 December and “if up and about”. I’m not exactly sure what recovered means – fully? partially? – but I’m up and about at least some of time so I decided that rather than start taking the tablets on some random, grey, nondescript day later in the month, I’d start on 1 January, the first day of the new year. So on every Hogmanay (or New Year’s Eve for the non-Scots among you) for the next nine years, I’ll tick off another year and on Hogmanay in 2025 I’ll have a massive celebration to mark my finally having finished treatment for something that happened more than a decade earlier.

That is, of course, assuming that the cancer doesn’t come back in the meantime or that some accident or other unforeseen event doesn’t cause me to shuffle off this mortal coil before then. There are no guarantees but I’m generally a glass half-full kind of gal so let’s look on the bright side ;-). And let’s face it, there are no guarantees for anyone in this life, it’s just that most of us never think about it and do just fine.

So just to recap, the breast cancer I have (had?) needs oestrogens to grow (Understanding your chemo regimen &  Breast cancer does indeed “come with baggage”). Every day for the next five years, I’ve to take one tablet of a drug called letrozole. Letrozole is one of a group of medicines called aromatase inhibitors. Aromatase inhibitors lower oestrogen levels in the body by blocking aromatase, an enzyme that converts other hormones into oestrogen. As a consequence, any slow-growing or dormant cancer cells that may have survived chemotherapy (and/or radiotherapy) are starved of the oestrogen they need to grow and so they slow or stop growing and/or spreading to other parts of the body.

Hormone treatment is now recommended for some women – I’m one of them – for ten years. Once the five years of letrozole are up, I’ve to take one tablet a day of another drug, tamoxifen, also for five years. That’s where the figure of 3,653 comes from – one tablet a day of either letrozole or tamoxifen for the next decade, and the decade includes three leap years.

The side effects of aromatase inhibitors can be severe and many women stop taking these medicines as a consequence. One of the reasons the oncologist emphasised recovery and being up and about is that exercise can help alleviate “the likely side effects [of letrozole] including bone ache and joint stiffness”. I’m not exactly super mobile at the moment but my daily walks on Tooting Bec Common must count as some form of exercise. Another reason for starting now is that I’m hoping that if I do get these side effects, I won’t notice them so much among all the other aches and pains I have at the moment following my operation and the chemo. I’m only half joking there.

Anyway, fingers crossed. Happy New Year everyone, and here’s to 31 December 2025.