Posts Tagged ‘breast cancer’

>BRCA1, BRCA2 or none at all? Me and Doreen…

>I never met my great grandmother, Doreen. She died before I was born, a big, happy woman, but troubled with some ill health. My dad’s beloved gran, he always speaks so fondly of her – she was Mop, and his eyes shine and he smiles as he mentions her. Mum and Dad have a photograph of Doreen up on the wall. She’s young, in her late teens, dressed up in a frilly dress and bloomers, with a bonnet and parasol – and the very strange thing is she looks like me. Even the same expression. How funny that you can look at a picture of someone you never knew and see yourself staring back.

Legacy, likeness, family trees, the past – how these things have whirled around in my head these past two weeks. I look at the picture of Doreen and I wish I could speak to her. We have more in common than our wayward dark curls, brown eyes and smiles (and love of frilly parasols).

Doreen was 34 when she was diagnosed with breast cancer. It was 1939. In those days, the treatment for breast cancer was brutal. A radical mastectomy, lymph nodes and muscles out from under the arm and I imagine some horrendous radiation treatment too, although that is conjecture on my part as Dad doesn’t know. He remembers her terrible scars though and the fact that she couldn’t play the piano due to the pain and constricture of that scarring. I have thought a lot about Doreen since I was diagnosed at 33 – did she feel the same fear that I felt? What was her experience all those years ago? Doreen beat her cancer and carried on with life. She died of something completely unrelated at the age of 68. I have often looked at her photograph and smiled – she was a survivor, she was a talisman.

When you are diagnosed with breast cancer at a relatively young age, it is suggested that you investigate the possibility of a hereditary link, a genetic thread running through the generations. I had my clinical genetics appointment on the 13 January. I knew about my great gran’s breast cancer, but she is the only other sufferer apart from me in my entire family. I expected to be told that it was just one of those things, random, just chance – all the things that people have been telling me since that fateful day back in 2007.

The shocking reality for me is that because Doreen had breast cancer at 34 and there are only males in the direct line between me and her (my grandad and my dad), two genetic consultants have put me in the high risk category for having a genetic cause for my breast cancer and I have some stark and difficult choices ahead.

It is possible that I carry either the BRCA1 or BRCA2 gene mutation, which would increase the risk of my breast cancer recurring and give me an increased risk of ovarian cancer. I can decide not to have the genetic testing and take my chances or have the test and deal with the consequences of a possible positive result.

I don’t like uncertainty. I’m going to have the test. I really fear a positive result. It will mean choosing again between screening, touching wood and crossing my fingers, or preventive surgery – a double mastectomy and an oophrectomy (my ovaries removed). At the moment, I’m scared, angry, frightened, consumed once more with the overwhelming headfuck that is breast cancer. I have really had enough. Yes, actually I’m really bloody angry that it’s taking me back to hospitals and appointments and uncertainty and worrying. I was slowly getting away from all that.

But then, I know that it’s never really going to leave me anyway. This is one more obstacle in the race I never in my wildest dreams thought I’d ever have to run. I did do it once, I can do it again. It is stripping me down to the quick, but I’ve proved I can get through and smile and live. I am wounded by breast cancer – there’s no denying it’s left its mark on my mind and my life, but at the same time, what point is there in getting through if I’m going to weep and moan and give up?

So – bear with me. I am going to be a pain in the arse. I am going to cry and sulk and be a hermit. I’m also going to be a normal mother and a vaguely normal librarian. I’m also going to rail and scream and worry and fret.

I might get that negative result – I pray and pray that I do. But I look at that photo of Doreen and her parasol and all I can think at the moment is that we’re linked. Her face is my face and her genes just might be too.


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>Writing workshop – Hold me up


I’ve got these thoughts running through my head. They never let up. I lie in bed and they jab through the peace of my dreams. I drive to work and they spool behind my eyes, causing me to jump the lights and overshoot the roundabouts. I go to work – they leap out from their lair and make me scuttle around the building looking for somewhere to hide. I laugh with my friends and they poke me in the back and remind me of sorrows. I play with my son and they invade our games, unwelcome visitors in our world of make believe. I lay in the bliss of love and they pounce on me and remind me of what I have lost and what I may never get back.

They make me cry. They make me panic. They make me angry. They distract me from living my life.

I’m trying to force them out. For a long time I didn’t even recognise them as the interlopers they truly are. I thought these thoughts were part of me, but they’re not. I have lived with them for so long that I believed I was them, that they defined me.

I’m on to them now. I am worn down by these thoughts and I’m going to need help to oust them. Perhaps they’ll never really go, but I’m going to try and push them out from centre stage. They are not me, they are part of what went before and I am determined to make them retreat. So much of life is being sucked away by these thoughts. I didn’t get through it all to live a half life, worn down by thinking of things that can’t be changed.

I will do it. I am trying so hard. All I ask is that you let me take my time. That you take my hand and try to let my angry tears wash over you. That when it’s tough, you give me your support, grab me tight and do your best to hold me up.

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>So there it is. Another six months under my belt. Another milestone in the difficult journey away from breast cancer. I had my six month check up today with my smiley consultant, the one who took away the cancer that could have killed me, reshaped my breast and saved my life. He’s lovely, human, smiling and has Motorhead’s Ace of Spades as his mobile ringtone. An all round good sort and a rock-lovin’ man to boot.

A five minute appointment. Is everything alright? You look great. Your hair’s come back so quickly. How’s the fatigue? Can I just have a look? And then it’s over. Barely five minutes and I’m smiling and getting dressed and going back into the waiting room to Massage Angel Friend who’s come along for moral support. That takes me two years and eight months further away from the truly horrible day when Rock-Lovin’ Consultant held my hand as I sat in my gown, big black marker pen arrow pointing to my tumour and crying with fear before I went down to the operating theatre.

It sometimes feels like it never happened, it’s all so dramatic and unreal, but I know it did and slowly, slowly, slowly, I’m moving away. I went for hot chocolate with marshmallows on top after today’s appointment with Massage Angel Friend and we laughed and giggled and trolled around the fancy goods section of the garden centre. I felt happy and I wasn’t pretending – it was really me.

I bought a heart for my newly painted shed. I was going for shabby chic – inspired by the lovely creations at Skybluesea.

I’m usually really good at shabby, but not so good at chic. However, I think I’m getting there with my shed! The heart is a symbol of a good day. I cried my tears last night – check up appointments bring it all back in a flood, but today I’m smiling and  honestly, I’m amazed at myself. I’m not saying I’m through it – I’m not that daft. But smiling for real on today of all days is something I did not expect.

*First post written on laptop loaned by Friend from Wayback – ta lovely girl. xx

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>Two front teeth…

>Five year old O’s top two front teeth are super wobbly. He’s already lost two from the bottom, but these were quickly replaced by the new teeth and you really can’t tell they’ve gone. I am in premature mourning for the top two teeth – they seem to represent the difference between his babyhood and him growing into a big boy. I don’t feel ready to say goodbye to my boy’s baby face just yet.

Every night we’re doing a ‘wobble check’ and I have been teasing him that I’m going to glue them back in with super-glue if they come out. Ho, ho, we have such a giggle about it – I really have to rein myself in, as I really do think I will be glum when they go.

What is driving this dental misery? I think it’s that I did so want two children, a younger sibling for O so that they could grow together and hopefully be as close as my sister and I, or his big brothers, Tiddles and Mosh. Then breast cancer came along and made me feel far too precarious to go ahead and have another baby. The thought that my only child is leaving his infancy behind is sometimes hard to think about even though I enjoy watching him grow and change. I do yearn though. Babies are all around me at the moment, friends are pregnant and others replete with new babes. I often feel cut off, like the clock stopped back in 2007 and I’m an anomaly, a freak and not quite a proper woman.

All this because of two wobbly teeth. I look at O and do know I’m blessed to have him. It’s just that there’s always going to be the thought of how it could have been and I think I need to mourn it to let it go. I’m still here, I’ve got a great man, a lovely boy, wonderful friends and family, but still I sit and brood.

I just need to know – will this yearning ever leave me? Or is it something you just learn to live with in time?

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>I wrote the most personal blog post yesterday and posted it to Tara’s Gallery over at Sticky Fingers. I received some wonderful comments, both here on my blog and on Twitter and Facebook. I was going to reply to all the comments one by one, but I am just overwhelmed by the kind and frankly tear-inducing things that have been said and thought I should respond more fully.

I am stunned by the response I have had to my post. I knew that putting up my baldy pics would probably stir feelings and strong emotions, especially as most of you will have friends or family, (or even yourselves) who have been or still are in the same position, but I never expected such an outpouring of support and well-wishing.

I have to say I am really pleased that you think I look good regardless of hair or lack of it. Obviously I took my glasses off for all these pics (so vain) and missed out the hilarious mini-Afro pics that came in between the last two photos. I do have some things I’m not willing for the world to see. I also had one photo where I look like a bald David Baddiel. That did not make the final cut!

I suppose that my post is very personal, but also shows that anyone can face cancer and get through. I am not brave, although as a lifelong sap, it is nice to be told that I am, so please don’t stop. With such a diagnosis, I think your choices are to give up or grit your teeth, cry a bit (a lot) and then just put up with the crap as best you can until it stops. I was bloody unlucky to get cancer at 33 and I just got through the best I could. Friends and family helped me get to where I am today and I admit, I have got a long way to go. The physical aspects are a memory for the most part, but the emotional scars and changes wrought by my experiences are harder to erase. Cancer is more than what it does to your body (and your hair!).

But – I’m getting on with it. For every bad thought or bad day or setback I face, I try a little harder to face it all down. The responses I have had to my post, from people I know and people I don’t, have lifted me up once more. So thanks once again – I really am touched beyond measure.

Mel x

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This is my entry for Tara @ Sticky Fingers’ Gallery Week 12. It’s been a tough one for me but I am so glad I did it. I am sure there will be some fantastic entries this week. Please go and have a look at the other entries, as the Gallery is always full to bursting with wonderful photography.
May 2006. This first photo is a bit of a cheat, as I did not take this picture myself. But this was me, with my finger looking like it’s stuck up my nose and my hair shiny, long and lustrous. I’m allowed to say that, as by November 2007, I’d been diagnosed with Grade 3 breast cancer and facing chemotherapy. The consultant who broke the dreadful news actually said, “Oh, your beautiful hair”. I didn’t think that the loss of my hair would be so hard to bear, but it really was.

16 January 2008. I started my chemo in January. I’d had my surgery in November and had to wait for a wound infection to clear up before I could start the chemo. It was a long, hard wait. My fab Hairdresser Friend gave me this hairstyle, which I really loved, but sadly, I knew that it would not last too long. It was designed to ease the transition from long-haired woman to baldy cancer patient.

31 January 2008. One Thursday morning, during my second chemo cycle my hair started coming out in clumps in my hands. It was everywhere and it was making me cry. An SOS call to Hairdresser Friend was made and she came over. She got the electric razor out and this was my Number 2 cut. It was quite a relief to have the hair tamed and I quite liked the pixie-ish look of it. Again, I knew it wouldn’t last.

4 February 2008. Sure enough, over the weekend, my hair continued to fall out (from everywhere – that was an interesting bathtime!) and I knew I had to bite the bullet and just shave it all off if I was to keep my sanity – and my soft furnishings hair-free. I went round to my Friend from Way Back’s house and Hairdresser Friend came over and did the deed. This is me just after, when I’d got home. I bloody hate this picture – God only knows why I am smiling. I look dreadful.

12 March 2008. I had a couple of wigs. One was long like my old hair, but as I was so pale and thin, I looked too gothic (even for me, the Queen all that is Black). This other wig was kinder on my pallor. I only ever wore my wigs out of the house – they were itchy and annoying and I really could not be arsed to faff about inside. Plus I was scared of setting fire to it whilst cooking. Imagine the scenes…

3 April 2008. These next two pictures are when the chemo was really doing its work and my eyebrows and eyelashes were struggling to survive the onslaught. I look at these pictures and I can’t honestly believe that this is me. During this time, I was very poorly and had to just get through the bad days. However, I note that I have applied a little lipstick. Vain throughout the suffering!

7 June 2008. The first four cycles of chemo were the ones that took my hair. I then switched to chemo tablets and although I was still poorly, my hair started to come back. This next picture is where I can see me peeping out through my eyes once more. I remember taking this picture and feeling hope and happiness and a little bit of hmmmm, still got it going on, girlfriend…

28 August 2008. This one was taken on the same day as the photo of O that I picked for Gallery Week 5. A happy, happy day and a happy, newly curly woman enjoying the sunshine and being out and about. This felt like the start of coming out of treatment and although I still had a long way to go emotionally and mentally, things were getting better.

15 May 2010. And this is me now. Out the other side, a little less carefree and a little more weary, but definitely on the up and sporting a really fulsome head of bouncy curls. It was a really drastic way to get a new hairstyle, but I’m really enjoying my curly hair and feeling more and more like me again and less like the breast cancer girl.  

Writing this post has taken courage. I am actually shaking as I type, as the self portraits I’ve chosen have only ever been seen by a couple of people before today. It feels right though. I took them during the hardest, most soul-stripping time of my life. Looking at them now, I can see what cancer did to me and what it took away.

More importantly though, I can see what I’ve now got back. Cancer did take me to my lowest ebb, but I didn’t stay there. I’ll always be changed by what happened to me, but it doesn’t define me. I’m moving on and hopefully, I’ll keep going and getting further and further away. Thanks, Tara, for giving me the opportunity to get this post out there.

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>Back in the bad old days of 2007 and 2008 when I was going through the torment of breast cancer treatment I needed something to take my mind off the general crappiness of life. I did not choose anything artistic, character-building, charitable, or anything particularly noble. I needed something that was completely unrelated to what was going on in real-life and that something was a television programme.
That programme was Heroes, the hit American show about real people living ordinary lives with extraordinary powers. It was my salvation. I watched the show, I read the blogs, I goggled at the fanfiction, I downloaded the pictures and I immersed myself in this pretend world in order to save my sanity. I’d love to say that the only reasons for becoming so involved in this show were the marvellous writing and the wonderful production values, but of course my interest was somewhat more base.

Ah – Nathan Petrelli, played by the glorious Adrian Pasdar. He was my not-so-secret passion and my poor chemo-addled brain was ‘slightly’ delirious for his manly charms. I spent many a happy evening Facebook chatting about the Pas with my Facebook Wife, Laura, she of AWNTYM-fame. She shared in my ramblings and even admitted her own unwholesome love of Boyd from Waking the Dead. For further information on this time, please just ask her about her feelings regarding beards, glitterballs and Shredded Wheat. I am sure she won’t mind me outing her in this public arena…*crosses fingers*

The whole scenario came to a head when my ‘Friend from Way Back’ (who incidentally has a weird crush on Stefan Dennis, aka Paul from Neighbours) told me there was a Heroes promotional stand in the Halifax branch of Sainsbury’s. To be more specific, there was a lifesize cardboard cutout of Nathan Petrelli standing near the newspapers.

Imagine my delight. I gathered O into the car and off we flew to Sainsbury’s. We entered with what I hoped was a nonchalant air and approached the Cardboard Pas. The following pictures were taken…

This photograph I took myself, lurking behind the Cardboard Pasdar. Note my ridiculous expression, my just-growing-in tufty post-chemo hairdo and the alarming radiotherapy pinkness of my chest – ugh. But also note me and the Pas looking like long-lost lovers. His cardboard face DOES NOT look scared…

This one is my lovely son, posing with the Cardboard Pas, following my instructions to smile. Note the Sainsbury’s man in the background, just behind the Cardboard Pas’s head. I think he might be wondering what the hell is going on. This is confirmed by the following which is a close-up of the Sainsbury man in the previous photo…

He does not look impressed. In fact, he looks confused/bewildered/like he’s about to call security. After I’d taken these two photographs, we left Sainsbury’s and scuttled back to the car.

Looking back at this whole episode, I would like to think that the crazy cancer world I was living in prompted this unseemly behaviour. Sadly, I know that this is a lie and if the Cardboard Pas was ever to visit Sainsbury’s again, I would be there like a shot!

I would like to dedicate this entire post to Laura @ AWNTYM  for her friendship and humorous chatter that helped me through the bad times. She is a fantastic woman and life would be dull as ditchwater without her.

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