151. The Dolly Parton option

Tomorrow is mastectomy day.

The thought occurs that today is the last day of my life when I need to wear a bra.

Loss or liberation? Will I mourn the loss of a cleavage and try to emulate the suggestion of a shapely front, or celebrate the ability to do naked star jumps without a complaining chest? I have no idea, and I'm intrigued to find out. It could go either way, but my money is on Liberation.

What I'm wondering is (a) what I'll look like flat-chested, (b) how noticeable it is, and (c) whether I'll mind if it's noticeable. I am making no assumptions here.  So far, my attitude has firmly been of the This Is Me variety, love me or leave me. Grey hair, wrinkles, mastecomy scar? They speak of a life lived long enough to have earned them, of challenges overcome, like badges I've earned.

But every woman has to find her own comfort zone.

I am not making any firm predictions. Since my first mastectomy-without-reconstruction, I have always worn a prosthesis to match the remaining breast, contrary to my general au naturel approach in life. The lob-sided look is not great, even with my modest A-cup.

Wearing a relatively small prosthesis is not a problem. Who knows, I may have been less keen on the unreconstructed look if I had been blessed (or burdened) with a more generous cleavage. When I was fitted for a proper prosthesis (there is a special clinic for such things), I picked up the largest specimen when Prosthesis Lady wasn't looking, and found it unexpectedly heavy. Choices are perhaps harder and less straightforward when your breasts are quite literally a bigger part of you.             

There are times when I couldn't care less. Swimming with a softie just feels ridiculous and unnecessary, so in the pool or on the beach I no longer bother with a matching pair. The communcal changing room is no longer the challenge it once was. In all these past seven years, no woman sharing the lido experience has ever batted an eyelid at my scarred chest - although it still strikes me as odd that I have never, ever, seen another woman there with any sign of having had breast surgery. Not sure where they all are.

I have found that doctors and nurses DO make assumptions.

When the surgeon told me I needed a mastectomy all those years ago, she described the operation: "First I do the mastectomy, then I get the plastic surgeon to do the reconstruction on the same day." She launched into a detailed description of what that was like, taking bits of shoulder muscle to mould into a nice shape, or failing that (as I protested that surely I'd want my shoulder muscle to do muscly things in my shoulder) taking a bit of fat from... from where exactly? Not much of that to spare, so I might end up with half a buttock. That smacks decidedly of robbing Peter to pay Paul. I had to be very firm about my refusal of such options ("Are you sure? You can think about it!").

I found the thought of walking around with a permanent implant of some sort equally alarming. It's a deeply personal choice, and oh, I do understand why many women choose differently.

What I don't understand is why I always had to work quite hard at convincing the hospital staff of my choices. Once convinced, though, they applauded me. "You're so right!" they'd say. "Having a reconstuction is not an easy option." (Why do you only hear about the drawbacks AFTER you've refused? Same with the Cold Cap, which is meant to stop your hair falling out. I had to keep telling the nurses that I didn't want it, after which they conceded that not only was it indeed highly uncomfortable, it often didn't work anyway).

This time round, though, there was the Chief, who took one look at my flat right side, felt the lumpy left side, pronouncd that surgery was needed, and happily assumed that I wouldn't want a reconstruction this time either. Which makes the surgery so much easier - I'm predicted to be back home the following day. (With a reconstruction, I'd be in hospital for a good week).

"You can just wear two prostheses," he said. 

"I don't think I'll bother," I told him. "Now that my flat front will be nicely matched."

He looked at me and pondered, "Well, you might want to wear it when you're going out. You could have a Dolly Parton."

My husband and the breast nurse (new to the job and looking somewhat taken aback by this conversation) probably didn't dare laugh until I did. I thought it was genuinely funny.

There's a thought, though. If you're going to pretend that you have a frontage, why copy the old building? If there's nothing to match, I can be the architect and the world's my oyster.

When it came to the follow-up discussion with the nurse - they take you into a room with tissues after you've heard the surgeon's verdict, to talk through some of the detail - she opened the drawer to give me a new softie. (That's breast cancer jargon. If you don't speak Breastish, see here.) What size did I want?

I made the rash decision not to go for the Dolly Parton option, so I reached into my bra to pull out the current pretender. Something to match this one. In the end, she gave me two of the same size, which is more generous than last time, when I begged in vain for a second softie.

Later, I passed the Dolly Parton option by my daughters. Hm, perhaps not quite your style, was the verdict. Looking at this photofit of my possible future self, I think they may be right. So, whilst keeping my options open, you'll be relieved to know that Dolly Parton is crossed off the list.

 

150. Cancer in times of Covid

I've lost count of the many times I watched the news and said, Thank goodness I had my cancer treatment THEN and not now.

All these reports of Covid-filled hospital wards whilst cancer patients had their surgery postponed. It's bad enough nervously counting down the weeks to your operation without the stone-sinking worry about what your cancer cells are up to whilst your doctors and nurses are busy elsewhere for who-knows-how-long. It's bad enough coping with chemotherapy playing havoc with your immune system, without the added stress of shielding. And it's bad enough being rushed into A&E with your husband to help you. I couldn't bear the stories of desperately ill people, all alone in hospital. Dying alone.

Thank goodness I had cancer when I did, and not now.

But now? Well, I'm amazed. The words COVID and BACKLOG are enough to send any cancer patient into a mild panic, but I only heard those once, when I first tried to get seen at the breast clinic. Since then, I've been whizzed through the system faster than you can say Hello.

Eight years ago, there were six weeks between showing my suspicious lump to the surgeon and the surgeon taking it out. This time, it's just five weeks.

Last time, I sat in overflowing waiting rooms for hours. I learned that patients have to be patient: 

Sometimes it seems that appointment times are simply academic: a vague indication of whether you should come in the morning or in the afternoon. 

This time, I can take my pick of empty seats and have yet to wait longer than 15 minutes. Popping down from my office to the scanning department, at exactly the allotted time, the nurse was already waiting for me. Quickly done, she sent me to the CT scanner nextdoor: "Might as well get you through that now, saves you having to come back later."

Last time, my pre-operative appointment consisted of hours of waiting to be poked and prodded and asked endless questions. This time, the questions were asked over the phone at exactly the agreed time, taking just 15 minutes. I had to go into hospital for the podding and poking, but barely had time to sit in the waiting room (which, incidentally, had a rather interesting choice of entertainment - no break from work topics here!).

So from where I'm sitting, it seems that Covid has actually improved my hospital experience. When I compliment the staff on this stellar service, they tell me they like it too. "It's one thing we're going to keep up," said the nurse who did the pre-op assessment by phone.

The breast care nurse tells me that they even managed to keep going with seeing cancer patients, all the way through the Covid crisis. Hats off.

In the meantime, I have to try and stay Covid-free until Friday.

They do a PCR test three days before surgery, after which I'm meant to isolate with my entire household. I don't want to run any risks of a positive test, so I've been working from home and semi-shielding along with my husband. The rest of the house emptied a week ago. Covid is rampant in London at the moment, with almost daily reports from son and daughters (and indeed my own office) of people testing positive. My son, who had been staying with us for a few weeks, returned to his own home. My daughters, who still live here, moved out until surgery day - taking Bear and Pig with them. 

We said our goodbyes, and now it's strangely quiet.

It could have been nicely restful if it wasn't for the 1st April looming like a bad joke. Let's just hope that my next blog post isn't called Cancelled in times of Covid.

149. The cancer blog

I am utterly flabbergasted (and rather flummoxed) by the response to my blog last week. I thought people might be interested and perhaps concerned to know why I won't be around for a while, but I really didn't expect this... Over 5000 people have read it in just a few days.

I have received HUNDREDS of personal messages.

Hundreds of friends, relatives and complete strangers who took the trouble to reach out to me on email, whatsapp and social media. Some of you even sent me flowers and cards (how on earth did you find greeting cards with owls on them, so quickly? Love them!).

I have read all your messages, but do forgive me for not responding to each one. This blog is my response, and I'm not promising to keep that up either. Here is one message that made me reach for my hanky:

Blog & write a diary if it helps you - if it doesn't, enjoy your garden and your music & leave us to look after ourselves for a bit.

Thank you Pink Champagne Friend (you know who you are), I shall take note - and if anyone is disappointed by my lack of blogging, they can blame you.

But for now, blogging does help. It's my way of distancing myself a bit from the difficult parts of having cancer, looking at it like a story-telling researcher (shout-out to Richard and colleagues: that's called ETHNOGRAPHY. I'm my very own ethnographer here!)

I do feel a bit of a fraud though. Yes, cancer is bad, but it's not that bad. I'm glad my cancer blog was appreciated by so many people, but I'm not sure it deserves the status as My Most Read Blog Post. I'd much rather that honour goes to my work blogs, so let me send you in the right direction... HERE's one I wrote a few days ago.

Which also shows you how I'm coping. Since my cancer diagnosis, I've spent every single day working. So many great projects that I'm sorry to have to step away from for a while, so I'm trying to cram in lots of things I was planning to do over the next few months. On Saturday I told myself that enough was enough, time to stop and rest, but it was no good. Stopping doesn't mean resting. Stopping means finding my breathing goes a bit too fast and my fingers start tingling. Best to keep staring at my computer screen so I don't see the elephant in the room, sitting right behind me.

Perhaps cancer is quite bad after all, and blogging is justified?

148. Another cancer, another owl

 

Well, hello again. If you have been here before, perhaps even right from the start in 2014 when I was new to blogging and new to cancer: Long time no see. Can’t say I’ve missed you.

If you’re new to this blog: A bitter welcome. I’m not sure how rocky this ride is going to be, so best be prepared to buckle up. Anyone wanting to get off now, please do and I don’t blame you.

I have breast cancer again.

There it is, my headline news. I’m not sure why it comes as such a shocking surprise. I should know better than anyone that cancer can appear in any woman’s breast, just like that: You’re fine one day, then you chance upon a little lump, you think “Hang on a minute, what’s this?” and get it checked out, and BANG. You’re still feeling fit and well but everything has changed, and before you know it you’re waved onto the cancer treatment rollercoaster that brings your fitness & wellness, indeed your entire life, to a screeching halt.

That happened before, so why shouldn’t it happen again? I’ve still got one breast after last decade’s debacle, so it’s a case of one down, one to go. But somehow, your subconscious decides that cancer is for Other People. Once that myth is busted by the unexpected arrival of your very own breast cancer, you adjust. OK then, cancer is clearly also for me, but cancer staying put and carrying on – well, that is definitely for Other People. Me? I shall live happily until I get knocked of my bike aged 102.

I had genuinely forgotten all about it. When people asked (in that meaningful concerned tone of voice) “How are you now?” it took me a while to figure out what prompted that question. Ah yes, of course, cancer, ages ago. No worries, I’m absolutely fine now, thank you. Lovely weather today, isn’t it. How’s your family/job/cat?

Now, we’re back to the precariousness of the How are you? question. (If you are thinking of asking me How are you? feel free but be warned that you may just get an honest answer. Perhaps read this first.)

Let’s get the facts out of the way. The short version:

•  Small lump (just under 2cm) in remaining breast turns out to be cancer
• Full mastectomy booked in for 1^st April (no joke)
• Further treatments may be needed, depending on what they find when they look at my sliced-up dodgy breast under the microscope
• But so far, it looks well-contained, so let’s hope that surgery will sort it out

Why write a cancer blog?

Because I can’t face telling all my friends and relations and colleagues the same sorry story over and over again. Because there are so many of you lovely people, interested in what’s happening for me, and I really want to tell each one of you but I can’t find the time or the headspace. Because I want people to know that they can talk about cancer, it’s not a taboo, it’s not a secret. A spade is a spade and a cancer is a cancer, and I want you to know that you can call it just that.

Writing about Breaking Bad News and Talking About Things is my job, and I will undoubtedly get back to you on this topic, but for now, please don’t take it personally if I don’t respond to your messages. I am comforted by the love and care of all of you, but I am also rather overwhelmed by my situation.

It’s easier, therefore, to tell my story just once. For those of you who want to know all the ins and outs of what’s been happening during the past few weeks, here it is. 

The long version:

After the full menu of treatments for a stage 2 breast cancer in 2014 (lumpectomy, hang-on-it’s-bigger-than-we-thought so let’s do a mastectomy, chemotherapy, radiotherapy) my annual check-ups had always been fine. Last year, my breast doctor discharged me. I still have three years of hormone treatment to go, but that tiny tablet is just part of my daily routine with little thought of why and wherefore. (It only had one job, which was to stop cancer in its tracks. It doesn't seem to have done that job particularly well.)

The lump

Just over three weeks ago, I discovered a small lump in the leftover breast. It felt exactly the same as before, a mirror image. I popped into the breast clinic (conveniently located opposite the bike shed at the university hospital where I work), begging to be seen, but because I’d been discharged I had to get a new GP referral. To my relief, the GP took my word for it on the phone and referred me at once. Then the hospital appointment office told me that it could be five or six weeks before they can see me – Covid backlog, you understand. Sorry, we’re only just booking patients who were referred three weeks ago.

I’m not one for panicking, but believe me, I stood in the corridor at work staring at my phone in a lightheaded sweat. Not knowing what’s going on with your body and your life is rather terrifying. So my relief was enormous when someone rang me back a few hours later with the news that they could, after all, fit me in on Saturday.

The breast clinic

The process in the one-stop breast clinic goes like this: A doctor prods and pokes, you have a mammogram, then an ultrasound, then (if needed) a biopsy, and finally another chat with the doctor, who will say: Let’s see what the results show, come back in two weeks.

To my pleasant surprise, I saw one of the Chiefs himself (“I agreed to work this Saturday, to help clear the backlog” – NHS staff are truly amazing). This breast surgeon was able to recognise my experience as a cancer patient and as a colleague, and willing to speak his mind. I couldn’t cope with the thought of waiting two weeks to get my cancer diagnosis confirmed, so I told the Chief that it looks like cancer, doesn’t it? If so, it would really help me to know when you might do the surgery? I’ve got work to sort out, you see. A new research project starting. The more time I have to get things sorted, the better.

(When it gets to discussing my work with the cancer doctors and nurses, we’re into sitcom territory. Eight years ago… Doctor: You’ve got cancer. Remind me what work you do? Me: I’ve just written a book on how to break bad news.

This time… Doctor: What do you do? You’re a professor here? You should have said at once! What area of research? Me: How to plan for the end of your life.)

The upshot was that the Chief booked me in for a bone scan and CT scan straight away. (“We don’t usually do that, because women get so alarmed at being sent for scans before we’ve told them the results of their biopsy, but in your case, let’s just get on with it.”)

The new owl

So there it was. I wasn’t yet given my formal diagnosis, but it was pretty obvious that I had cancer again. Who to tell, and when? The children first, obviously. And immediately. I don’t ever want them to worry that there are things they don’t know about, or things they can’t talk about. That is only possible if they are confident we tell them everything, openly and honestly. Plus, how can people support you if they don't know you need support?

No longer children now – my daughters are 18 and 22, my son is 24. They were shocked but also brilliantly practical. They remember the rocky road from last time, so now we just need to get our heads around another bumpy ride. My daughters knew exactly what was needed.

Mum, you need a new animal!

This blog is named after Owl, who accompanied me throughout my previous cancer treatments. It’s a long story – if you haven’t met Owl, you can read all about him here.

Just looking at Owl, who has been sitting quietly on the bedroom bookcase, made me feel nauseous. I couldn’t bear the thought of getting him out of retirement, as there are too many associations of hard times. (The VIP lounge springs to mind.) And really, I no longer have the excuse of needing to bring a stuffed toy to medical appointments for the sake of two young daughters who made sense of my cancer story through the story of Owl. Surely, I no longer needed him?

But my daughters were wiser than me. Of course Owl wasn’t for them. Mum, YOU need... Yes indeed: new cancer, new animal. The shock of hearing about my cancer turned into excitement. What animal? They pondered getting me an otter, sloth, beaver, bear, but in the end we decided it had to be another owl. We named him Otus (that’s Latin for Owl, apparently).

Otus was pressed into service the following day, when I was put through various scanners. I’m not sure how often the hospital staff get to put owls through their machines and take photos of them, but if they were taken aback, they didn’t show it. I tried to mumble something about For the girls, you see (leaving aside that these girls are grown-ups), but perhaps I should just stop pretending that Otus is there for them. The staff understood this too. They suggested that I could leave Otus lying on my stomach as the bone scanner closed in on us, and that was a surprising comfort. Lying there for 45 minutes with the large machine right on top of me, I was glad of the company.

Tears in the office

Waiting for Results Day is horrible. That’s all I can say. I went into work overdrive, trying to get ahead and sorted as much as possible, because whenever I stopped, I had butterflies in my stomach as if I was waiting for a scary exam. I decided to tell the colleagues involved in my projects, because I needed their help to plan ahead. That was hard but also life-affirming. Such lovely colleagues… Tears were shed in the office. I wasn’t planning on tears (because I’m in charge! I’m in control! And tears are dangerous, because once you start, will they ever stop?). But my colleague Richard (who has learning disabilities) was the first to cut through that: Can I give you a hug, Irene? (Oh yes please! And pass round the hankies!).

Others followed suit. I’d tell them my cancer news, we’d talk through it all, we’d reassure each other that the show will go on – this is how we will manage, this is who will support you. Yes, it will all be fine. And then we’d stop, and look at each other, and weep. It’s rubbish, isn’t it.

They were right, of course. We needed to think about the implications and the practicalities of the project manager going on sick leave, but we also needed to acknowledge that we care for each other as human beings. We needed to acknowledge together that Bad News is called Bad News because it is, well, Bad. No use trying to dress it up in a fancy outfit.

Outside work, I kept as quiet as possible, because the tears in the office were enough to cope with. Plus, every time you tell someone I have breast cancer again, it forces you to look at it and believe it, making it more real. It’s exhausting.

During those same weeks, there was only one other bit of news. There are no words to describe the horror and terror of Russia’s war with Ukraine. I am so very aware that I am adding to sum total of misery in the world, but also, that my bit of misery pales into insignificance when I look at what millions of people are suffering right now.

Thank goodness for the NHS, for family and friends and colleagues.

Results Day

A few days ago my husband and I walked into the breast clinic full of trepidation. Now here’s the strange thing. When the Chief greeted us with “Good news! The scans were clear, the cancer hasn’t spread anywhere,” I really did experience that as good news. I still do. Husband noted afterwards that being told I had cancer didn’t sound like particularly good news to him, but I already accepted that bit of the message. Bad news is not just broken by the Chief's official verdict, but also by what I can feel in my breast, see on the ultrasound scanner, deduct from the words of Charmaine, my previous breast care nurse who I'd bumped into a few weeks ago ("You're right Irene, if it looks like a duck and it quacks like a duck, it's going to be a duck"). I had deducted it from the Chief's response at his initial prod and poke. Clearly, he wouldn’t have put me through all those scanners quite yet if he thought it might just be an innocent lump.

So my relief was enormous when nothing dubious showed up in my bones or other organs. Now, we’re back in familiar territory. Grade 1 cancer? Walk in the park. The Chief reckons that a lumpectomy will suffice, with a bit of radiotherapy thrown after it for good measure; but I had already told him not to bother with taking just the lump out. Get rid of the whole breast please. If I’ve managed to grow breast cancer twice, I don't want to run any risk of Third Time Unlucky.

The Chief understood. He started leafing through his diary to see how soon he could fit me in for a mastectomy. We’d counted on 8^th April, but alas, he’d just booked in another woman who had Covid so needed her surgery postponed. Shouldn’t really wait another week. How about the week before? Hm, also looking quite full but you're urgent - we'll squeeze you in. So, 1^st April it is.

I could only feel relief. By now, my worries about work (starting the How-To-Plan-For-The-End-Of-Life study on 1^st April! Meetings planned! New staff starting on that very day!) had made way for worries about delays. Is it my imagination, or is the breast lump just a tiny bit bigger every day? I can feel it – in a certain bathroom light, I can even see it. So, let’s take a deep breath, and get on with it.

I’m trying to look at the positives.

There’s all of you, sticking with my story by reading this far, thinking of me, stepping in to help me manage my life and especially my work.

There's best-husband-in-the-world, and my grown-up children. Not having to worry about looking after them is just amazing. My daughter cooked me dinner last night.

There's the distraction of work, whilst knowing I have some brilliant colleagues who will manage, despite (or perhaps even thanks to) the tears in the office. I’m still working 7 long days a week… I just can’t stop, because if I stop, the butterflies are back. But I know that in two weeks’ time, I will truly be able to leave everything and sign out. So that’s a positive of sorts. I might even be looking forward to it. Sea, sand and surgery: a break from daily life, let's call it a holiday.

Then there is the prospect of evening things out in the chest department. That’s also a positive of sorts, is it not? Convenient flat chest, no need for a bra.

I’m clutching at straws here, as you can see. Because really, having cancer again is just crap, excuse my language.

I’ll try and keep you posted.