How Facebook got me through cancer

When Lisa Markwell was diagnosed with cancer, she wanted to keep friends updated on her treatment, but also needed space to herself. She found the answer in a place she'd always ignored – and everything just clicked

I've been a Facebook refusenik for years. I'm as umbilically linked to the internet as the next working mother – Sainsbury's online, tick; Amazon, tick; BBC iplayer, tick. But as a way to communicate with my friends? Absolutely not. The first Facebook wave passed me by completely, and by the time all my younger colleagues were gaily posting holiday pictures and taking "which movie character are you?" quizzes, I had learnt enough to see it as a navel-gazing, time-wasting indulgence. I preferred to catch up and/or unwind over a glass of Montepulciano and a DVD. But unforeseen, unwelcome events made me change my mind.

9 June 2008

On Friday 6 June I found a lump in my breast. Nothing strange about that – hundreds of thousands of women go through this – but I never thought it would happen to me.

Anyway, being possessed of a brain and a will to live, I made an appointment with the doctor and I got J [my husband] to cop a feel – he could definitely make out a lump. Shit, it's real.

And so it began. As a journalist I've always felt uneasy about the confessional style of writing, the "I'm the first person ever to have a baby and I'm going to tell you all about it" columns. There's something dazzlingly egotistical about expecting other people to care about your every move.

But there's nothing like a cancer diagnosis to throw all perceived wisdom out the window. There was an urgent need to offload all this ... stuff going on in my head and while I never expected it to reach an audience wider than my immediate circle of friends, it gave me a vital outlet for my darkest, sickest, saddest and most idiotic thoughts.

What was intended as a social network became, for me, a support network. Bet the Facebook creators never imagined it as a Dear Diary for a fortysomething cancer patient.

20 June

It's bad. It's cancer. With the nurse, we are taken to the counselling room. Just the kind of patronising shit I can't stand. Until she starts talking in her no-nonsense way about things like – how to tell children; what to deal with first; what happens in surgery, etc. It may not surprise you to learn that I cried.

26 June

Telling people.

Who wants to tell their their children that they've got cancer?

P and T were heroic. They listened, they watched our faces. They went away and came back later, as requested, if they had anything more to ask/say. P and I made a list for the surgeon ...

1) What colour is it?

2) Will you get it all out?

3) Will it come back?

T asked if she could keep the lump afterwards. "Not to play with, mummy. Just to see." I explained that that probably wouldn't be possible.

Apart from that, don't want to tell anyone else much. I can't bear being a victim, or a bore (which is definitely worse).

Amazing how many people use Facebook as it is, I suppose, intended. Names from my professional past popped up with friend requests and I felt duty bound to reply with a health warning: I'd love to reconnect with you, but please bear in mind that my notes and status updates will have a certain black-edged tone to them ...

3 July

Ten years ago at 2pm I was getting married. This year I'm in hospital having a biopsy on a new lump in my breast. Them's the breaks.

At this point, I'm slightly resigned to everything. One lump or two? At least they're on the same side, and my consultant charmingly told me that if I had to have a mastectomy, I could perhaps go up a cup size during reconstruction ...

Can't decide if I love him or think he's a total wanker. I suspect a lot of women feel this way about their breast surgeon.

8 July

Surgery. My hospital bag is hilarious – new PJs, slippers and dressing gown. Scented soap to make the bed smell nice. Nintendo DS with Scrabble, for those quiet moments. iPod with upbeat music for those loud moments. Magazines, books, washbag. it's not so much a hospital overnighter, but a weekend in a boutique hotel I've packed for ...

The operation was a "success" and I went home and sat up in bed with my laptop and a cup of tea. The outside world retreated completely. I started writing in a very different way to anything I'd done before and realised why so many people keep a diary. Whether or not I ever read it back was irrelevant, it was just important to empty my head of the emotions and anxiety that inhabited it.

17 July

So Facebook turns out to be a good idea. For a start while I'm sitting here in my pyjamas it's good to know that out there my existence is noticed!

Why did I ever despise social networking? If only for the ceaseless queue of friends who are willing, eager even, to play online Scrabble against me, it was worth joining Facebook.

I had meant to start some sort of blog as a way to keep my friends in the loop. Matt in New Zealand, Kim in Los Angeles and Cailin in Toronto wanted to know what was going on and I just couldn't face Skype yet.

It wasn't just me that was benefiting. By this point, J had sympathy fatigue which sounds horrible, but fielding the calls and the faces at the school gate was really tiring. With a place to send people for news, updates, information it relieved the pressure on him to be a combined husband/doctor/newsreader.

24 July

What would you do? I have the choice whether to have chemotherapy or not, and it's the most difficult decision of my life (well, one of them). So I'm casting around for advice, opinion, anything really.

Kim

The words "reasonable chance of it recurring" tell me that you might have to just do it.

I hate the idea of sad tufts of hair on your lovely head that I really do love very much, but I hate it less than the "recurring" word.

Matthew

I agree with Kim. The possibility of going through all of this hell again – and the not knowing – would be too much for me; even though the therapy is clearly not a walk in the park.

PS: I'm determined to thrash you at Scrabble.

Krishna

I think – do it. You will feel crappy for a bit, tired, sicky and yes – your hair might go a bit mad. But – then it will all be over – done and dusted and time to move onto the next brilliant chapter of your life. Belt and braces I say. Also – don't worry about the radiotherapy. Really ok and other than leaving you a little tired and maybe sore (like a mild bit of sunburn) its pretty ok as it goes.

Friends' comments and messages gave me much more guidance and support than I might have hoped as I battled to see a way forward.

Meanwhile I decided to take photographs of myself in my attic sickbay – like childbirth, I remember thinking: "I might not be able to remember all this later." It seemed important to catalogue the stages.

17 August

What's happened in the last seven days? Where to begin? I went to see the oncologist to make the decision, finally, about chemotherapy. Another hour of pros, cons, side effects, etc etc. Even I am beginning to feel like an expert. This time the spectres of future possibilities of heart disease and leukaemia were thrown into the mix. Decided to do it – despite Dr C's last-minute mention that having chemo "might be overtreating the problem". But as I've probably droned on about before, I don't want to spend the next 10 years thinking, what if?

PS: I am lucky. Really. Some women do all this alone, and I am not.

25 August

I think I'm still alive; I just about feel alive, but it has been the week from hell. And that's not an exaggeration. I thought I was ready for what chemotherapy could throw at me. I'd read every single horror story, talked to women who'd been there, been appraised of the risks and side effects by the oncologist. There were not to be any surprises.

And I suppose it wasn't surprising that it was torture. Five hours hooked up to a machine pumping toxic fluid into my veins, five hours of wearing a freezing cold hat over my entire head, with frozen rods sticking down my neck. Necking anti-sickness pills to try to hold off the inevitable. So yes, torture.

By Wednesday the sickness had lifted a bit, I thought, if this is chemo, I can do this. Still very tired indeed, and brain not up to much. But Friday might have been the worst day – physically – that I have ever endured.

Difficult to describe the feeling, but what I imagine happens when your body starts shutting down, which I suppose was what was happening in a minor way, the organs freaking out about the poison coursing through them. Moving impossible, thinking difficult, speaking not an option. And I couldn't even cry ...

I sound like a right old whinger. It's because I feel better now that I can look back at it slightly objectively, this kind of death-lite.

Without sounding totally schmaltzy, I do think that thinking about all the fantastic things people have said got me through. "Nothing's permanent" came through a FB comment, and although at that moment I felt like melting the computer with self-pity, it was true.

Why did I take a photograph of myself wearing the cold cap? Honestly? I have no idea. It was, without doubt, the most debilitating experience of my life. Again, I suppose it could have been to mark the moment – to act as an aide-mémoire to chemotherapy. Actually, that's crap. I will never forget it. The other day, almost a year on, I drove past the hospital and the taste that accompanied the vile chemo drugs involuntarily appeared in my mouth. But when I posted the picture I had the onset of gallows humour, likening myself to the Queen at her most disgruntled.

8 September

So yesterday I had the real, proper, handfuls of hair coming out in the shower moment. Conveniently we had two friends round at the time, and the shower is next to the kitchen where everyone was chatting merrily, and there's a gap above the door, so I was sure they could all hear me crying. It was muffled by the sound of the water and I had my hands over my face, bawling. And throwing lumps of hair down the loo.

Eventually I got J to come in and see and like that utterly nonsensical moment in Casino Royale when Daniel Craig gets in the shower to comfort Eva Green, he actually got in the shower fully clothed to give me a hug. He might drive me mad but at moments like that, it's hard to fault the man.

So then I just thought fuck it and got the comb out. Huge great amounts came out – waaaaaaa.

As with last time, distracting messages most, most welcome. Just knowing I've got a select band of witty, groovy, warm and bright friends makes it better – honest.

Kim

Look, get some body paint and paint on your hair, the way they did in The Wizard of Oz. Or, you could buy miniature traffic cones from Hamleys, and make a Mohican with some eyelash glue, that'd look good.

The downside of writing everything in a blog/diary was that I assumed everyone knew what I was talking about. Oh, the arrogance. My parents, for example, had not embraced Facebook and I had to remember to use old-school methods of communication, like the telephone. And to moderate how I talked to them – the mock-doom mood I employed for many of my blogs was not appropriate for a worried mother 100 miles away.

And for my children, the information had to be doled out in manageable, understandable chunks. When I told them that my hair was about to completely fall out, 12-year-old P said: "No offence, mum, but I don't want to be seen with you with no hair." I told him I felt exactly the same way – and it spurred me on to find something to cover my head with that wasn't like wearing a sign round my neck saying "Yes, I've got cancer."

The photograph taken on my Mac Photobooth application while lying in bed at this stage reminds me of Ian Botham, but without the beefy neck. I look ILL.

11 September

Weird, just realised the date. Anyway, after a sleepless night I have shaved my head. The relief is tangible. Hair falling out everywhere is Not A Good Look.

Apart from the comedy suggestions of jesters' hats, afros, etc (thanks fellas), I am now ready to receive suggestions of scarves, hats, anything that will look chic and discreet. The websites for cancer hairloss women, as you might imagine, are dire.

I need sartorial help!

Matthew

I've had a look too and they are a bit dire. I found this one though which seems pretty good. Get past the first picture in the testimonial page and damn ... these women look great!!!

I hope this helps.

The search for an anti-cancer look continued with no joy. A dismal visit to the wig department of Selfridges ended with the bittersweet realisation that although I've always wanted long, thick wavy hair, it looks dreadful (well, the acrylic version does). Cue much hilarity from the Facebook community. As anyone who's ever sent a hasty email intended as a joke but read as serious will know, tone is hard to convey written down and I winced once or twice at the brutal honesty of my friends.

I ended up in Topshop, scouring the vintage scarf department (who knew?) for suitable head coverings. This entailed removing the woolly hat I've been using, and tying scarves around the cotton skullcap I bought from a chemo-fashion website. The nearby standard-issue Topshop customers, 14-year-old girls with glossy manes and endless legs, froze.

I soldiered on and left with a stash of silk and cotton squares and spent hours trying them in the privacy of my sickbay then, a trick I wish I'd thought of years ago, I snapped myself in them and posted them on Facebook, to ask my fashionable friends for their unvarnished views. This time, I really needed to know – I didn't want to go out of the house looking like a total weirdo.

SCARF COMMENTS

BERET IN RED

I feel berets reveal the bald sideburn area, but am working on it.

Kim: Love the beret, can't you get a black one and a raincoat and go for the vintage IRA look!?

BACK VIEW

See what I did there? A back view of the bow.

Rachel: Very Princess Caroline!

Angela: LOVE IT! On-trend as Gok would say, even though I don't know what "on trend" really means, i just love saying it. ON TREND!!! Xx

PIERRE CARDIN

This is the most expensive of the vintage ones I bought, but rather sweet.

Kim: Gypsies Tramps and Thieves, you hear it from the people of the town ... They call us etc etc. Like it, very Biba.

CANCER TIE?

J says this is the cancer tie but what do you think?

Sarah: Love the scarf, but the man has a point: it's a bit like a cross between the "cancer tie", a 1950s swimming cap – and what I imagine Miss Slocombe wears before she goes to bed, when she has taken off her ice cream coloured wig ...

TABLECLOTH

J says it looks like a tablecloth.

Dan: Hang on you crazy polite people. This one looks like a patchwork snake eating her head!

Sarah: I'm afraid I'm with Dan. There's just waaaaaaaay too much goin' on!

Kim: Do you take in laundry is my first feeling. xxx

WRAP

I don't think the Mrs Mop-style wrap is quite right.

Rachel: No although it's very Prada last autumn/winter ...

Sarah: No, no, no, no, no ... You want me to cross ref Miss Slocombe again? I've got a kitchen floor crying out for some attention, if that's of any interest?

Dan, husband of a great friend, is someone I got to know through his Facebook status updates and his tireless comment and message sending. He contacted me with a strange request. A gifted artist, he wanted to sketch me, if I'd allow it. At this very stage, at my most bald and vulnerable. Nobody had seen my head, not even my children. My husband had glimpsed it but I kept hold of the cotton skullcap like a security blanket. I slept in the damned thing.

Now I found myself agreeing to his visit. He came brandishing a camera. "I think I'll take photographs and draw from them," Dan announced. I didn't ever see the pictures until this week, when I asked him for one to use in this feature.

23 September

I am now technically bald but feeling quite gung ho about my headscarves. Thanks to the expert guidance of Facebook friend comments, I now know how to tie them so they look jaunty rather than bonkers.

30 September

I am HALFWAY.

30 September

Drugs ... So far today I have had 80mg of anti-nausea stuff; four steroid tablets, 40mg thyroid medication and just shot up my bone marrow booster. Tonight I've got a sleeping tablet to look forward to, as I didn't sleep last night. Maaaaan, I could be a great pusher.

Matthew

Or a Pez dispenser; sounds like you're full of the stuff.

6 October

One week on from chemo number three and it's been a strange and not very positive week. I have been so determined to get through the physical trauma of this experience that I've done little to deal with the emotional aspect. And if that sounds weird, given that I've done plenty of crying, throwing myself on the bed, whining about stuff, clearly I was only dealing with surface emotions.

By Wednesday a low-level nagging feeling surfaced – it's not OK to be me any more; I am not the person I was and never will be again. Sounds bizarre, but it was the first time that had hit me. Not an "it's unfair" feeling, just a feeling of difference.

The feeling was heightened on Thursday, when Catherine took me to see Britain's leading hair-loss fixer. This woman creates miracles – full heads of hair on women who have either temporarily or permanently lost theirs. The salon was full of women having a mesh woven onto whatever little hair they had, then painstakingly applied tiny strands of hair to make it up to a full head of hair, that is so natural and realistic that you can shower, swim, do everything in it and it won't move for up to two years. Really incredible, but then it should be for £1,800!

The women in the salon all looked quite sad and traumatised but clearly doing something about it, and on the way home, shattered, I realised emphatically that I am one of them, part of it rather than an observer writing a feature about them, or anything like that. Quite sobering.

Kim

God, the great divide. I'm glad you are going to the wigmaker place. Where are you getting this £1,800 from? Do you need any donations? That's a filthy question, but I certainly mean it ...

24 October

The most annoying thing is that I only cry for about 10 seconds – just like Holly Hunter in the brilliant Broadcast News when she unplugs the phone and bawls, then plugs it back in and keeps on working. That ain't healthy.

I lay around most of the time reading the October issue of various magazines, all of which have breast cancer features as it is the month for raising awareness. Naturally I feel fairly aware already so don't know why I did it, and regretted reading one particular feature about seven or eight women, all of whom were having cancer a second time. Ugh.

Um, and I have this weird fuzzy hair on my head, very short but it is there, in places. Shall I go for the fake hair after all? I don't think I could feel less feminine or like myself right now, so maybe hair will help? Answers on a Facebook message purleeze. x

Photographs of the top of my head got put onto my by-now lengthy Facebook page. Virtual cheers went up, which kept me going through the later, increasingly vile stages of chemotherapy.

2 December

Chemotherapy is OVER.

Yesterday was the last one and I will be very happy never, ever to go through that again, although I can't help feeling rather anxious about believing that. I started crying when I first got there, don't know why, really. I suppose it was a mixture of relief and worry, as my friend Sam said the last session was the worst when she did it.

On 5 January I start radiotherapy which will be no picnic but not nearly as bad, I guess. Just need to watch out for weird "sunburn" skin, tattoos to identify which bits need zapping, and exhaustion. The nurse told me that I might not feel comfortable wearing low-cut tops afterwards. I said don't worry, I haven't felt comfortable wearing low-cut tops ever.

5 February 2009

I can't believe I haven't written anything for nearly two months. Being able to put down in diary form what's going on has kept me sane, and I am kicking myself for not keeping up to date, for my own sake. I feel like I've been sliding down a very gentle slope since mid-December and now I'm at the bottom.

Naturally that seems stupid because I've finished chemotherapy, I've just finished radiotherapy and I have a week off work in which to relax and regroup. But I feel sad and miserable. Radiotherapy was fascinating because it was so WEIRD. In a very deep basement room in the hospital, naked to the waist with a giant, James Bond-like machine moving over me, zapping SIX MILLION volts of radiation into me. I hadn't wanted to ask about how it actually works, so luckily J came with me one day and asked all that stuff. Apparently an x-ray delivers about 500 volts, so that's the comparison. Eeek.

As a result one side of my chest is red and "sunburnt", which adds beautifully to the scars and dents. Choosing swimwear is going to be ... interesting.

On the upside my hair is growing back apace. It is very short and rather grey, but it's there, and I actually went to a party on Friday night with no hat or scarf on, and it was liberating.

I think what's happening to me is entirely inevitable but that doesn't make it easier. I've spent every day since last July thinking about this cancer thing, and have had a barrage of appointments, specialists, operations, etc, filling up my diary and my brain. Now I've been spat at out the other end, with no doctor appointments, no schedule at all. I'm on my own with just a packet of Tamoxifen tablets.

I had a good old boo hoo in the street on the last day of treatment, I felt – rejected, I think, is probably accurate. Nothing special about me, just another person going through the cancer factory and out the other end.

In April I went to America on holiday and everyone I met seemed addicted to posting on Facebook, via their iPhone, at any hour of the day or night. I felt quite left out, but made up for it by creating an album of pictures of me, the short grey-haired lady, in the sunshine. Being in a new environment, amongst strangers, was a strangely free feeling. They didn't know that I used to have long blonde hair.

I've left Facebook behind now – I still check in every now and then, but there's no more Scrabble, no more blog, no more pleas for chat or advice. My last "C Word" entry was to post a photograph of myself with the note " with hair". I had an 11-hour procedure to weave hair to my scrappy little regrowth and emerged with more hair than I ever had before or will ever have again.

It's gone now – I couldn't hack the maintenance, but it got me through a difficult time.

I have no doubt that, trite as it sounds, Facebook was a vital part of my recovery. I couldn't have done any of it if it hadn't been for the support of my friends who were, for the best part of a year – virtual. BC (before chemo) I sneered at people who updated the world at large with their every move. Now I understand that feeling as if someone (anyone?) is listening out there, you're not so lonely or afraid. And if the inevitable low-lying fear that the cancer will return comes to pass, I will again reach for my laptop.

The whole exercise could be seen as towering vanity. But this week I bumped into the sister of an fellow parent who has just been diagnosed with breast cancer. She's terrified of the unknown, I was told. Could I perhaps give her some information? I could do better than that, I thought; I could give her my rough-and-ready survivor's tale, my blog.

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