Sunday, 22 February 2015

101. The IKEA friend

More observations from the cancer waiting rooms and wards:

The friend, the husband, the daughter.

They come in all shapes and sizes, the people who come along with the cancer patient. There is usually a certain "match" with the person they are with.  I have been as touched and intrigued by them as I have by my fellow patients.

Here we go, shamelessly stereotyping.

The elderly husband... He is as bewildered as she is, but both the husband and the wife sit quietly through their ordeal, side by side. They rarely speak; they don't need to. He doesn't leave her. He might have brought a newspaper, attempt a crossword, but you sense that his mind is really with his wife. He carefully puts away her walking stick. She looks vulnerable. So does he, but as you are sitting there looking at them both, you ponder that at least they have each other. They've managed to get through a lifetime of ups and downs together and now they find themselves here, in an alien world that is just about bearable because he is there, she is there. What will he do without her?

The just-about-to-retire husband... They have both worked hard all their lives and now they are on the cusp of retirement. But here he is, with his wife, in the breast clinic. He looks worried and she is trying not to. They had plans and breast cancer wasn't one of them. What is going to happen? They read the leaflets, get a take-away coffee. Once the treatments start and they get into a routine, he will do the crossword, focus on it, finish it. Or, more likely, she'll bring a friend.

(Hm. We're not quite ready to retire, but I think my husband fits this category nicely.)

The young husband... Of all husbands, he looks most shell-shocked. He holds her hand when they sit down. No crossword for him. What can you say? 

The busy sons and daughters... They may be busy, have jobs and children of their own that need attention, but they are faithful. Here they are, waiting with their mother, sitting with her as she has her chemotherapy, because she needs them. She couldn't get here on her own, for starters. They have dropped everything. They may be on the phone to a sibling, giving updates. ("Still waiting.") They ask mum if she wants anything, they go off to the hospital shop, they return with a hospital sandwich and a bag of hospital crisps. Unless they come prepared with provisions. Halfway through, their sister comes in. They give a brief handover, and they're off. As I said: they have a job to go to and children to collect from school.

The daughters of the mother who doesn't speak English... These daughters (they are almost invariably daughters) warrant their own category. My South London hospital has a large Asian population in its catchment area, so I've seen enough of these daughters to be able to turn them into a stereotype. The elderly mother shuffles in with her long thin hair in a tight bun, a warm coat over her sari. The daughters come in twos or threes, or in shifts. They chat and chat (the daughters, that is. The mother only speaks when spoken to.) It can even be quite jolly at times. It's always touching, because they may have busy lives, but they don't let it show. Mother is ill: they give her all the time she needs.

The teenager... A rare breed in hospital, the teenage sons and daughters who sit with their. mother in waiting rooms and treatment areas. They are probably there to provide practical help rather than moral supportThey don't speak or look around. For all you know, they could have been waiting at the airport or queueing at a bus stop, plugged into their iPods whilst playing games on their iPads. Love 'em.

I had a couple of these with me - although only one was true to stereotype; the other was reasonably chatty and brought her knitting instead of a gadget.

The supportive friend... Where to start? The friend is less devastated and more practical than the family member. She (it's mostly a she) is equally focused on the patient, but the illness doesn't affect her life quite as much. Unlike the husbands and sons and daughters, she won't need to watch this patient go through the misery of side effects day after night after day after night. So it's easier for her, perhaps, to pull out the stops during this hospital session. If the environment is somewhat alien to her, she doesn't let it show or get her down. She gets on with it, she is helpful, she is kind, she occupies herself or talks quietly: whatever is needed. Marvellous.

I was lucky. I had several of these supportive friends. Thank you kindly.

The I-know-best friend... Thankfully, these are a rare breed too. I've seen a couple and it's enough. I always felt sorry for the patient. There he is, the weak-looking, defenseless patient, marooned in his chair and hooked up to a drip. There she is, the matronly friend, fussing over him, drowning his soft voice with her stern one. Has he eaten well? He must look after his diet you know. And not give up. Acupuncture is rather good, she has heard. Has he tried it? No? Why not? He must.

It's best to have your own supportive friend with you when there is an I-know-best friend about, so you can exchange looks and shake your head imperceptibly. If you're on your own, you just sit there brewing resentment.

The IKEA friend... This is the most puzzling breed of all. The I Know Everything About-this friend. The reason she Knows Everthing About-this is that she has been there herself. I am sure there are many people who have been there themselves and it turns them into a Supportive Friend as described above. The IKEA friend is different. She is determined to let everyone know that she has been there herself. She strides into the waiting room exuding confidence. She owns the place. Hey! says her body language. I am at ease here! I am a member!

What sets the IKEA friend apart is her determination to save not only her own friend (the patient) with her expertise-by-experience, but all the other patients too. Including me. When she talks to her friend, she talks to all of us in the waiting room. It won't be long before she lets us all know that she Knows Everything About-this, because she, too, has had breast cancer. (And she's not afraid to say it out loud. BREAST CANCER.)

The most perfect specimen of this breed was the friend who came along to the radiotherapy waiting room. I was sitting there minding my own business, hot and hat-less after my long walk to the hospital. I can't quite remember apropos of what exactly she started telling us all that she was an IKEA type of person. Apropos of nothing, probably. But there she was, holding forth, her friend (the patient) standing quietly by her side. And suddenly she whipped a photograph out of her handbag and put it under my nose. Look! she said. That was me, a couple of years ago! The photograph showed a group of people congregating around someone's front garden, and one of them was bald. 

You see, this is what puzzles me. What is the IKEA friend trying to say, exactly? Don't you worry about your cancer/baldness/misery, look at me, I have been there, done that, and I've re-assembled myself, and so can you? Which assumes that I am worried about my cancer/baldness/etc, which I am not (well, actually yes, I am, but she is the last person I'd share that with). Or is she somehow missing the feeling of being special that comes with being a cancer patient? Does she feel she has to justify her presence in this place? Or does she genuinely feel that she is being helpful?

Whatever the reason, I am still wondering what the correct response is to a stranger who shoves a photograph of their previous bald self under your nose. Answers on a postcard please. (Or on this blog.)

If there are any IKEA friends reading this, let me tell you: it is not helpful to draw attention to yourself in the cancer waiting rooms and VIP lounges and wards. Because that requires the patients to focus on you, which is the last thing they need. Before you know it, you will turn into an I-Know-Best friend, and then where will we be?

The thought occurs that there is another type of IKEA friend, and I'm afraid I fit the bill. They are not IKEA customers, but IKEA staff members.

The I Knows Everything About-this staff member is also an expert, not through having been a cancer patient, but through having worked in the cancer world. They are doctors and nurses who speak the language. I hope that this only bothers the staff and not the patients. I have spotted them, sometimes, and they usually fall into the Supportive Friend category. You just notice that they know how to work the system and they know what questions to ask. The patient usually seems reassured by her friend's presence. When you get talking to her, she may even nod her head gratefully into the direction of the friend: She's a doctor, you know. 

Here is evidence of my membership of this breed. A friend of mine once texted me to say that she had just been admitted to hospital. Her situation was distressing and I knew that her partner couldn't be there, so I hopped on my bike and went to find her. It was mid-morning. I did the confident stride onto the ward, Look, I Know Everything About-this, I'm a professional. It didn't quite stop the staff nurse from telling me sternly that visiting hours were in the afternoon, but I looked over her shoulder to the ward sister and asserted, Well, yes I know, but don't you agree that a woman needs her friend with her at a time like this? They conceded. Just as well. My friend was in no fit state to advocate for herself. "I'm soooo glad you were there," she said later. "I would just have gone along with the treatments they suggested even though I didn't really want them. I was scared and it would have been so much more awful if I had been on my own."

Which makes me think that there are merits in having an IKEA staff member around. I hope so, anyway.

This week, another friend told me she needs to have a shot or two of chemotherapy treatment.

Not for cancer, curiously, but to help with another long-term condition. 

I was about to offer my company, as this was one of my Supportive Friends who has been to the VIP lounge with me. Wouldn't it be jolly? But as soon as I visualised it, I felt ill and vaguely nauseous. I have managed to sit through all my treatments with reasonable level-headedness, but boy, I don't even want to THINK about going anywhere near another VIP lounge any time soon.

And when I am ready to face that world again, in a couple of years' time perhaps, beware. If I'm not careful, I shall become part of a terrifying species. An IKEA staff member and IKEA customer rolled into one.

I KNOW EVERYTHING ABOUT THIS! I might say to everyone willing to hear it. And I really mean EVERYTHING. You know what? You should read my blog.

Sunday, 15 February 2015

100. One hundred blog posts about living with breast cancer

I suppose we all like a milestone, even if it's an artificial one. Is life at 50-plus-one-day so very different from the life at 50-minus-one-day? Is your outlook on the 1st of January different from the one on 31st December? Just asking.

Is blog post number 100 any different from number 23, 67 or 89?

Yet it's a milestone for me.

Perhaps because it coincides with the first steps on Recovery Road, a road going Down the mountain rather than Up the mountain. Having reached the top at last, it's time to stop and stare perhaps, taking in the new vista.

(Vistaa pleasing view; a mental view of a succession of remembered or anticipated events.)

This one hundredth blog post feels a bit like the flag planted on my mountain top, look here folks, done it, made it, been there. I know I'm not the only one, there's a veritable FOREST of flags where I'm standing, but still, it's my very own hand-crafted, hand-carried, hand-planted flag, and I've got the scars to prove it.

But I'm not going back down the way I came. I'm going to come down on the other side of my mountain, leaving that treacherous Cancer Road out of view.

A big part of me wants to leave this blog behind as well, along with Cancer Road.

Out of view, out of mind. Onwards.

I am glad I wrote it. It has kept me sane, enabling me to step outside myself. When things were particularly bleak, I would be composing the words in my head: Ha! wait until I describe this particular little horror. Knowing, at the very same time, that there would be another blog post later on, one that said OK, that's over now. Next!

Crucially, blogging also kept me connected to the outside world. Friends and acquaintances and even strangers sending me supportive vibes through my iPad, even when I couldn't move beyond bed and sofa. There is a lot to be said for modern technology. I cannot describe in words what it was like to feel that others were thinking of me; to know that they were interested enough in my tales of woe to keep reading.

Even now that I'm done with the treatments and have gone back to work, I meet people I hardly know (distant work colleagues, say) who tell me that they've read everything, right from the start.

This has the bizarre but rather nice effect of feeling like I've got a whole new set of friends out there. Because if you've listened to me banging on about being breastless/hairless/defenseless/helpless, and you've stayed with me even during the grimmest, most tear-filled of days, then you're a friend, right? It's a bit one-sided of course, but interestingly, I have noticed that people who used to be mere acquaintances, or even strangers, seem to open up more. I suppose if I can tell them about being breastless/hairless/etc, then they can tell me about their life as well.
So it's been good, all this blogging. But isn't one hundred posts quite enough of a bad thing?

No, apparently not.

Now that having cancer is no longer my full-time job, people are giving me hints.
  • You'll have to find something else to blog about! (As if it was the blogging that was my primary objective, rather than the specifics of coping with my verbal cancer diarrhoea.)
  • Don't stop blogging! I'm going to have withdrawal symptoms!
  • What are you going to DO with your blog? (This in an expectant sort of voice that leaves no room for the "nothing" response.)
  • When is the book coming out?

So, here is my answer. I will carry on blogging, but ONLY about things related to being a recovering breast cancer patient.

Reflections on what it was like, looking back. It's quite amazing how things look quite different when they are behind you. I mean, who knew that going back to work in-between treatments, the stop-and-start approach, was just madness? At the time, getting a sick note for the entire ten months just seemed feeble; now, I think: Get a grip! Of course it doesn't count as skiving if you sign off from the day job for the duration of all these gruelling treatments! Actually, it seems that you all knew this, and told me so at the time, but I didn't believe it.

Snippets of memories that might be interesting or entertaining, but never made the blog. Ah, I can think of a whole stack of them.

I'm also wondering whether I ought to go back to the very first three months following the discovery of my breast lump, before I started blogging. I read back through my diaries recently and was shocked at how utterly floored I was by it all - I have genuinely forgotten all of that. Pouring that all over the internet would have felt far too scary at the time, but now that I have safely emerged at the top of the mountain, I wonder whether it's worth releasing? What do you think?

Reports of the journey down Recovery Road. Because it's not over, of course. I may think it is, I may pretend it is, but it's not. I am feeling genuinely happy and on top of the world (well, perhaps not the whole world, but on top of the mountain, definitely), but physically, I'm still struggling. This week, I worked quite solidly for four days (sooooo excited about being able to finish a task I've tried to do for the past year, but never quite managed, because of the stop-and-start problem), but on day five, when I had planned to do just a little bit more on that task, or perhaps go for a very long walk, I simply collapsed into bed. All day. And I haven't quite emerged from that spell of exhaustion.

The Take-each-day-as-it-comes lesson was one of the hardest to learn and the easiest to forget.

Comments on cancer-related news items. Have you noticed how cancer is in the news all the time these days? Is it just me, or was it always thus? (There was another one on the BBC this morning, a celebrity "coming out" as a breast cancer patient. I'm glad I'm not famous. I would be horrified if my getting-through-each-day was described on the radio as a Cancer Battle, as if an ability to "fight and win" would be my own personal virtue, and dying would, presumably, be a result of my own deficiency as a warrior. Ah, I could go on.)

One thing I am not at all sure about is your suggestions of publishing a book.

Those are flattering suggestions of course, but every author must ask herself: why? who for?

I'd be interested in your answers to those questions. I can think of some myself (didn't I start this blog partly because I thought Owl was such a marvellous addition to our family, he was worth sharing?) But for now, I am shelving the book idea - mostly because my daughters cannot think of anything much worse than a mother blogging about things that mothers should very well keep quiet about, posting pictures of bald heads and private pigs in the process. There's not much point in publishing a book if you're not going to promote it, but I haven't quite resolved the tension between wanting to share my cancer-writing as widely as possible, as part of my Let's-try-and-save-or-at-least-help-the-world affliction, and protecting my children from a future psychiatrist's couch ("My mum wrote about me! Embarrassing things! In a book! Without my permission! I'm doomed!")

Wait a year or two perhaps, when mum being too tired to read Winnie-the-Pooh is a distant memory, her hair is flowing freely, and she hasn't died.

In the meantime, I'll keep blogging. But only when I feel like it. It could be several times a week, or it could be once a month. You'll just have to wait and see, and so will I.

That leaves me with the final task on blog post 100, which is to add a photograph.

"One day, we will look back, Owl and I, and marvel at the road we have travelled."

That's what I wrote on the About Owl page when I started the blog. I guess that day has come. So off I go in search of a photographer, to immortalise us both, Owl and I, looking back.

I find youngest daughter. She agrees on the condition that Bear can be photographed for the blog too, wearing the brand-new waistcoat I made for him this weekend. (See, I'm on the way down that mountain. Sewing waistcoats for bears. Must be feeling better.)

Doesn't he mind being on the blog then? Unlike Pig?

No, he doesn't. One day, asserts the younger daughter, he is going to be famous anyway, so he might as well start getting used to the paparazzi.

I wonder... could I seize this moment? This particular child is most mortified if people talk to mum about the blog or the cancer... but let's see.

"How about a making the blog into a book?"

No. Just NO. For the record: if there is ever going to be a book, the younger daughter is NOT (repeat: NOT) going to contribute to the production of the front cover. We're sticking with mug shots for the blog. Here they are.

Owl and I, looking back on a cancer-filled year
The almost-famous Bear in his new waistcoat

Saturday, 7 February 2015

99. Our chances are 50/50

It was World Cancer Day this week. Did you see the news?

One in every two people will get cancer at some point in their lives.

Cancer Research UK says so. I've always thought it was one in three, but no, it seems that it's half of us.

Can that be true?? The mind boggles.

When I started writing this blog I thought that it might be interesting for others to hear what it's like to have cancer. It's not as if many people get to experience it. Not like blogging about, say, what it's like to be pregnant. Describing that would just be tedious. Self-indulgent. Who on earth wants to hear about my morning sickness?

But it turns out that your chances of, say, giving birth at some point in your life aren't quite as high as your chances of getting cancer.

(Although your risk factors are much more clearly defined, of course. Being male lowers your risk of pregnancy by, oh, about 100%.)

I find the new statistic extraordinary. I know loads and loads of people who have given birth. I don't think I know quite as many people who have had a cancer diagnosis.

(Although it's creeping up, my personal tally of people-I-know. Absolutely everyone, it seems, has an Auntie Ethel who had cancer, but quite a few people have now told me that they've had it themselves. And I had no idea. I might have known them for years, but I never knew about their cancer. Perhaps it's still a hidden thing, with people suffering in silence? Like having a miscarriage? When that happened to me (and I was as open about that devastation as I am about my cancer), I was absolutely flabbergasted to discover how very common the experience was. It seemed to be a similar statistic to one-in-two-people-get-cancer: about half of the mothers at the school gates, I'd say, nodded in sympathy, "Yes, me too." Who knew?) 

It's an age thing, of course, not knowing quite as many people with cancer. Ask me again when I'm 96, and the chances are that people's pregnancies have faded from my memory and I'm wearing myself out visiting cancerous friends in hospital.

I've been thinking about statistics ever since that 90%-chance-of-survival figure I was given. So have others.

"Excellent!" has been the delighted comment from most family and friends. Some wish to take me up on my offer of detailed statistical explanations over coffee. But it isn't all as straightforward as it seems.

"I can do percentages," one friend wrote in an email, "but when I am a patient I can't." She continued:

"It is not the maths that defeats me but the emotional difficulty of imagining anything other than 100% alive, or 100% dead." 

And that, of course, is exactly the problem. There is nothing in-between. It is not possible to be 90% alive, or to have half a cancer. Doctors often make treatment decisions based on statistics and population studies, but you are not a population. You are an individual. Studies on individuals tell you absolutely nothing about risk or chances.

So it's not much use, really, to know that cancer is going to happen to roughly half of the people in your office, on the bus, in the supermarket queue, in your daughter's classroom. You still won't know whether it's going to happen to you. If it does, it will  happen 100%.

Then there is always the I could be knocked down by a bus argument. Even the consultant used it when she tried to put the statistics into context, explaining that you will never really know. "You could live to a hundred and I could be run over by a bus tonight." 

We simply don't know what's around the corner, so there's no point speculating. Until I turn that corner, I'll consider myself 100% cancer-free.

There is one statistic, however, that is now crystal-clear and definite.

My chances of pregnancy were already dwindling with the onset of middle age, but with the cancer treatment frazzling everything in sight (eggs included), those chances have been firmly reduced to 0%.

I'm absolutely delighted that I was among the less-than-half-of-the-population to have given birth, but I consider it to be good news that on this front at least, there is no risk of recurrence.

Wednesday, 4 February 2015

98. The stubbly hair-do

"Is your hair growing back yet?"

People have been asking me this for months, ever since that last chemotherapy session at the end of November.

If only. It takes ages for the poison to work its way out of the system. Three to five months, the VIP nurse reckoned when I asked her how long it would be before I'd have a bit of hair back.

The problem was, how would I know that I could safely stop shaving my head without looking like an autumn tree after a storm, rather bare but for a few hairs here and there? I've had a bit of stubble all through the treatment.

So I've kept a close eye on other regions, for clues. Almost overnight, right on the dot of my final radiotherapy treatment, I found that whilst my two remaining eyebrow hairs had finally given up the ghost, a new fuzziness was appearing underneath.

Not just eyebrows. Areas never seen in public have also started to fuzz over. Areas always seen in public, which I'd hoped the chemotherapy had stripped for good, are beginning to sprout. So I'm afraid I'm going to have to re-join the army of women fighting a battle with beards and moustaches.

Time, therefore, to see what my post-chemo hair is going to look like.

I had my last headshave two weeks ago and am now sporting an unflattering covering of grey stubble.

Let me tell  you, this is not a good look. I've looked it up on the internet and found quite a few women who have posted a blow-by-blow pictorial account of their hair re-growth, so I was vaguely prepared. Apparently, it takes quite a long time for your hair to stop looking thin on top. I've heard that I might expect a different colour, or a different curliness. 

It's rather disappointing that my stubble is as salt-and-pepper grey as ever. Not the lovely silver or pure white I'd hoped for.

Combine this with the thinning-on-top, and my current style is one rarely seen on women but more suited to the mature gentleman. It's worse than being bald, as far as I can see. At least baldness could (just could) be a fashion statement.

Let's hope that soon there will be enough of a covering to be able to pretend that I like it like this. Better still, enough for people to stop thinking I wonder if she's got cancer? and start thinking Lovely hairdo, it suits her. Or better still, passing me by and thinking nothing at all.

Just as well it's winter, and cold, so I can wear hats and more hats, even inside.

Which has the added advantage of keeping my hands off my head. Having a rather enticingly soft stubble is as bad as having a new gap in your mouth which you can't stop searching for with your tongue, just to check it's still there.

Yep. Just checked. Stubble, short on the sides, shorter on top. Still there. Still as short as it was this morning. And this lunch time. And this afternoon. Where's the magic wand when you need it?

The Mature Gentleman look