Friends

Author: Bev


The Oxford English Dictionary says that a friend is 'a person that you know well and like'. Since being diagnosed with breast cancer in October 2014 I'd like to challenge that definition...my friends are so much more.
 
When you get your diagnosis your world shifts on its axis. Nothing is the same as it was before. Everything is different. You are not the same person you once were.
 
Now don't get me wrong - those I classed as my friends before cancer are definitely still my friends now...the support offered to me and my family during the last year has come from old and new friends. It often surprised me who withdrew a little and who stepped up to the mark to make that difference. Maybe it shouldn't have done. I understand that being around me may have made people realise their own mortality, and that this is often something people shy away from. I don't blame anyone for trying to preserve their own sense of being. I can't say that I would have done the same were the roles reversed, but I love all my friends for their differences and if everyone acted the same all the time the world would be a much duller place. There is great beauty in our differences and I would never expect anyone to be someone they weren't on my behalf.
 
During the period between my diagnosis and the beginning of my treatment I refused to Google...I was pretty au fait with all the medical jargon having trained as a nurse and midwife (although I think my poor husband was undergoing a mammoth learning curve!). I trusted that my doctors knew what they were doing and would plan what was best for me. However, a lady on a Facebook group pointed me towards the Younger Breast Cancer Network UK. It was a couple of weeks before I felt ready to sign up...but I'm oh so glad I did. I'm sure my Macmillan breast care nurses had their lives made easier as well as I learnt most of what I know from lovely ladies on YBCN! 

Sitting in the breast clinic I felt so very young...everyone else there seemed at least 20 years older than me. Here (online), all the ladies were under 45...I'd found my new friends who would sustain me through the next year. There were ladies who had just been diagnosed, ladies undergoing chemotherapy or radiotherapy or surgery, and ladies who had finished all their treatment and were just there to offer advice and support. 

There was a group of ladies who all had similar time frames to me, and there was always someone online 24 hours a day 7 days a week. And we told it how it was...you know – all the things the medical professionals don't tell you. All the things that make you sit at home thinking 'is it just me?' And when you're not able to get out and about because you've just had surgery or are recovering from your latest chemo session, these ladies are all there. Nothing was out of bounds and there was lots of tears and lots of laughter.

There was one lady in particular who I chatted to quite a lot. She was diagnosed a couple of days after me and we had all our treatments within a couple of days of each other. We were 'chemo twins'. Once we'd finished our active treatment we celebrated together, and finally met in person to share a few drinks and hugs in September this year at a Breast Cancer Care Younger Women Together event.

Our bodies were still recovering from all the harsh treatments, but we could start planning the future. In fact, my friend wrote a poem about that very subject on this blog.

Over the last few weeks my friend was told the cancer had spread to her lungs. It was now incurable, but with drugs she may be able to extend her life. She was taken into hospital a couple of weeks ago. I sent her regular messages and sometimes she replied, sometimes she didn't...but I just wanted her to know I was thinking of her.

Last week she was moved to a hospice. Now these places aren't always doom and gloom. They are a much more homely place to be stuck in than a hospital, and their medical teams are second to none. They help people to live with illnesses – they are not just places to go into and never come out.

I made a box up and posted it to her. It was not much, but it was just full of things that I hoped would make her smile and know that she was being thought about. I don't know if she ever got to see my box. Not that it matters in the grand scheme of things – she knew she was loved.

My last message from her was Tuesday. She knew that her time was limited. I was so saddened on Sunday when I received a message saying that she had passed away on Saturday evening. Everything seemed to happen so very fast. In fact, I drunk a lot of wine and had a bit of a meltdown...something I'd not really done since my diagnosis. Life is so unfair and cancer is so cruel. Two more children left without a wonderful Mother.

She is not the first friend I have lost but she was my closest. Love you lady - you will be in my heart always.

My first instinct was to tell all my friends (we now have our own little group away from YBCN where we talk about everything and anything) – they were her friends too. To know that even in this I wasn't alone helped immensely.

You know when you say or do something and then stop and think that it's just you – nobody else can possibly feel like this / do this? Well this bunch of ladies just get it. They've all been through what I've been through. Yes everyone has very different experiences and we're all individuals. But I have told them things that nobody else knows...and vice versa. When we meet up in person – which I have done already with some of them, and am so looking forward to doing in a couple of weeks when we have a mass meet up to celebrate Christmas and remember our friends no longer here – there is none of the awkwardness of meeting new people.

Because we know each other. We know so much about each other.

I'm sure that I would never had crossed paths with many of these amazing ladies had I not had cancer. We are all so very different, but also all the same. So in a way I am grateful to cancer for forcing me down a different path to that which I had planned. Now my plans have changed. I plan on living life to the full, spending time with my family and making many new memories. I plan on doing it with the lovely friends we have all lost along the way at the forefront of my mind...it is wrong to waste your life when there are those who are no longer here and tried so very hard to stay.

Chatting to my new friends is a daily occurrence. Distance is irrelevant online. And when we discuss things there is no need for explanations. I am my new me. I don't need to pretend to be someone else, or pretend to be the person I was before cancer. I'm the same person I was but very, very different. I love all my 'new' friends and having them at the end of my fingertips is invaluable. I don't feel different because I've had cancer. There is none of the sympathetic head tilts or gentle questioning or avoidance of subjects that often come from friends after a cancer diagnosis. I think a lot of it is down to not wanting to upset the person. But with these ladies we have no subject that can't be discussed. All of us has stood face to face with our own mortality and I really wouldn't wish that on anyone of my 'other' friends. I hope against hope that none of them ever have to cross the line I have crossed.

We laugh a lot. I've learnt lots of new (rude!) words. We cry sometimes. We love deeply always. With these ladies I am just me. I am home. I cannot imagine being without them. I love them fiercely.

I have found my tribe.

Happiness and Love

Author: Anonymous

BD - ( that's what I call it now , before diagnosis) I would liken myself to Dave the minion. I would walk around in complete ignorance of the world really ......funny because now I think I'm more like the Dalai Lama but with more clothes and less tolerance. How does he not swear, I must fucking work on that one ...

I love deeper, I mean REALLY love deeper, I tell my daughters hourly I love them, if they sneeze "Bless you sweetie, mumma loves you." They usually roll their eyes and say "tell me something I don't know", then wipe the snot on my sofa ...... but I do it anyway,  "Mumma love you but don't wipe your snot on my sofa" ........you get me?

I'm kinder, I look at people and I will try to help. Be it small like giving the Big Issue guy a Greggs pasty and his dog a chewy (they usually swap cus there's more meat in the chewy) I no longer walk by. I don't do it for thanks -  no point most people have no manners, I do it because it nurtures my soul.

I am more sensitive, since diagnosis I have noticed how people abandon you, who knows why? Maybe they think they can catch it? Maybe they think they need to protect themselves from the pain of possibly losing you? Maybe it was my nutty phase that made me difficult to be around from being poisoned, burned and butchered, who knows?  That's about as much thought as I am going to give that one, see below ......

I forgive quicker, hurt me (boy have I been hurt since diagnosis) and yes I will react like the black widow but I will also walk away with no resentment, I am clearly wasting my time and emotions on you so I am off. Turrah!

My senses seem to be heightened, I smell the leaves  I feel the sun on my face, I stroke jumpers in shops!  Food tastes different to how it used to and I have an inner leprechaun that freaks completly if it sees a beautiful rainbow, nature is truly beautiful you just have to stop and look.

I pray more, I have my Catholic faith, it's personal to me, I am not overly strict in my practice of it but I don't judge you if you do not have one, challenging my belief will not change mine, mine gives me peace it gives me a inner calm at the most challenging of moments. I do not see badness as a punishment from God, it just is, life is very unfair. I have never quite understood why faith causes such arguments it is so sad, or why you would want to deny me my faith and the comfort it gives me, then marry and baptise your children, (which is a holy sacrament) in a church, those in glass houses and all that.

I constantly think and challenge, why ? Why did that person do that? Why am I doing this? why do my bones ache so much? What was that twinge? Stopping  the waterfall of thoughts is frustrating and a daily battle.

What am I trying to say, I don't really know myself , chemo brain never allows me to complete my cycle of thought beyond that of a goldfish, what was I saying again? I think I'm saying enjoy the moment, like so many ladies in my situation and far far worse, enjoy it, find the happiness, give the happiness and never ever, ever, stop loving.

PS I love you girlies ....... well it has been ten minutes!  x

To the man on the train

Author: Anonymous

The idea for this post came about when I found myself sitting between several people reading an article about the ‘No Less a Woman’ campaign (in which I feature). I imagined myself having a conversation around some of the - upsetting - comments I later saw posted about the article.

Man on the Train

I was sitting next to you on the District Line last Wednesday, reading the Evening Standard over your shoulder. I know it was irritating – sorry. I just couldn’t help myself. I saw my topless photograph on page 11 in the article about ‘No Less a Woman’ - the collaboration by Stella McCartney and Laura Dodsworth to highlight breast cancer awareness. It’s not every day you see a picture of yourself half-naked in the newspaper! I blushed didn’t I? It sounds crazy, but there was this awful split-second before I realised that neither you, nor anyone else in the carriage would know that I was one of the three women in the article because our identities were not revealed.

I noticed that you looked at the images for a long time. It’s okay to be curious. We wanted you to know what mastectomy scars look like; to better understand the impact of breast surgery on women’s bodies. Sadly, not everyone gets to have neat scars and beautifully reconstructed breasts despite the wonderful advances in surgery. Not everyone can have a tattoo over their scar. Radiation treatment, for instance, can cause invisible, but long-term damage to the skin.

It didn’t cross your mind that you were sitting next to one of the women in the feature? You didn’t think I looked like I had breast cancer? It’s hard, but we all need to remember to try not to make assumptions about how people look, sometimes people can be ill, even when they look great. 

You can’t understand why I wanted to show my scars? To be honest, I would never have agreed to have a topless photo before I had breast cancer. I took my breasts for granted. I didn’t see them as emblematic of my womanhood and femininity. I was sad to say good-bye to them when I decided to have risk-reducing surgery but when a reconstruction failed, and I got cancer again, I was devastated. Around 1 in 8 women in this country will develop breast cancer and 11, 000 women still die every year. I heard cancer described as ‘sexy.’ I hope these images will help people to understand that cancer is not sexy and they will have a better appreciation of this disease. 

I worry that my daughter’s generation will struggle to develop a healthy relationship with their bodies if they are only surrounded by airbrushed images of idealised women. I worry that we are in danger of denying the truth of who we are if we carry on holding such unrealistic expectations, not just about our breasts, but about our bodies and the control we imagine we have over them. 

Please don’t call me ‘brave.’ I don’t want you to feel sorry for me. But if you must feel pity, turn that emotion into a verb – do something to help, even if it’s just making a donation to charity.

Were you shocked? If you were, then it gives you some insight into how I felt for a long time. Nudity is something of a taboo in our culture, but to bare an imperfect body, a scarred body, feels like the final taboo, one that I wanted to shatter by showing off my body in all its flawed glory. My scars might be hidden from you, but I see them and they tell the story of my body, of my courage and strength. 

 http://www.stellamccartney.com/gb/lingerie_section

My English Cancer

Author: Sandra M

Hola amigos,

I have never dared to write a post for the blog simply not just because I didn't want to say things, just because I thought my foreign English wouldn't do justice to all the things I would like to say. However now, I have been learning that my cancer is proper English, with its proper RP accent, with the London look, like a Londoner accent. My cancer was born in this country, my cancer was found in England and the NHS is looking after me the best they possibly can. I am never felt more English that I feel now even though I am genuinely Spanish from top to bottom with my expressive hands, my funny faces when I talk, my brown eyes and the straightforwardness of words when I speak my language. Funny enough, I struggle so so much speaking about my disease in Spanish. It is so hard that I really need to think carefully the words.

I hesitated so many times to join YBCN (Younger Breast Cancer Network UK) feeling that I shouldn't be part of this group. I was totally and utterly wrong. What could I have done without this? How could I've been comforted when I was alone, when my family cried over the phone, those time when I was losing the plot or I had millions of questions. One thing I remember was my fear to post anything in the group and I dared. I dared because from second number one I knew I was in caring and supportive hands. All the welcomes and the warm greetings made me feel better already.
 

I have BREAST CANCER, finally I said it after two paragraphs. I was diagnosed the 19^th of November 2014 when my sister was having her 36^th birthday and I ruined it telling the crap news that the biopsy confirmed it was cancer. Homerton greatest surgeon told me I had triple negative breast cancer, stage 3, grade 3, very gently, well managed and with lots of encouraging words. She told me we caught it just in time. And everything worked! Yippie!!! My chemo was a success, the surgery worked and my arm is feeling better after my sentinel node biopsy. Rads were a walk in the park and during those 21 days of radiotherapy I enjoyed the look of a lovely member of staff, nice, caring, geeky, intelligent look, smart, with glasses and tall!!! I gave the team my email address but he didn't get the hint or perhaps he was too professional and my mailbox didn't get the email. Oooops!! Hehehe
 

I am LUCKY, I truly think I am, however many other moments I wonder whys and what's the reason behind my cancer or even if I deserved this, I guess we all do wonder and question. Unfortunately, we will never know and that's fine. We haven't done anything wrong, we didn't eat too much bacon or drank too much wine, we are not responsible for this. It is just sometimes the way things are and it sucks and we can only try and hope for the best.

I always hope for the best even now that I know my breast cancer has come back. Last Friday I was told my cancer spread to my brain. It doesn't look promising, there are two areas where the bastard has spread and we/they don't know much else yet
 

I want to live my life whatever the time I have, I want to keep up, carry on being resilient and stubborn like the bamboo when the wind blows and tries to break it and it bends and comes back up. Believe me when I say those words because I fucking am.
 

I know the outcome of all this, I don't need to remind you what will happen to me but whatever the time I have I really want to DO. I need to enjoy, laugh, cry, share, travel, see friends, eat in restaurants, go to the cinema, polish my nails, discover new books and write many words.
 

Friday yes, I was a mess but I accomplished things too. I was able to leave the counselling room with raccoon eyes and a clown nose and I finally asked for help, first time ever! I told my dearest friends to have a coffee with me and make jokes that evening. My sister whose birthday I spoiled last year, flew over to London that night and it felt good. We did things, lots of things. And on Saturday the 7^th of Nov 2015 ( yesterday) all my other siblings went all together to my little town and helped me to break the news to my parents. Gosh, it was so hard. I managed not to cry and kept neutral with my feelings as I know my mum will be devastated and it wouldn't help with my tears. They both ended up in hospital after the news, my father because he just came out from heart surgery and had a shock and my mum because she had such a huge breakdown that needed painkillers to make her feel better.
 

I am so sorry this post might look full of fear and pain but it is nonetheless the opposite. I want to give you a big cheer up.
 

I am already thinking about my funeral, which is very odd and probably not the best thing to have in mind at the moment. But somehow it is for me like organising a big fat party. I have so many plans for that day that makes me smile.
 

I would like to send love to you and tell you to grab minutes with your hands, enjoy the seconds of today, laugh to adversity, grab your life and hug it until your arms hurt and do things you love the most. It is our precious time, our treasure. Please look after that.

I leave it here with a quote I heard yesterday when I was in the cinema watching 007.

“You are a dancing kite in the middle of a hurricane” Yes indeed!

So much love,

Sandra M

Me before November 2014

First chemo done! And champagne! 

Second surgery and a "new knickers hat"

 

Sad news with secondary diagnosis, and steroids = cleaning house windows

 

Clarity

Author: Christina B


On the 2nd December 2014, my washing machine broke down and leaked all over the kitchen floor. Also on that day I was diagnosed with Stage 2 grade three breast cancer. That day when I broke down and cried it was not only for the diagnosis which challenged my mortality I also cried for the water threatening to ruin the kitchen floor and the inconvenience of not having a working washing machine.


9 months on the washing machine is fixed. I am "fixed" too in medical terms. The cancer has been removed and I've had chemotherapy to blast any indignant lurking cells and I've also had a breast reconstructed. These are physical changes and fixes.


My headspace is a tricky one to navigate though. A cancer diagnosis propels you into a dark unknown which forces you to face your own mortality head on. Whilst medical professionals do their job to " fix" you physically your mental health is not really considered unless you proactively request it. At one of my appointments at the breast clinic I asked for details of counselling service as I knew although I was doing a convincing job of coping I was really struggling underneath.


Fast track to my local cancer centre and I was given my own personal counsellor who was someone who I could trust and confide in. Someone who would not give me platitudes. Someone who would not give me head tilts of sympathy, someone's you I could dump all my concerns and worries on and not hold back for fear of how they would cope with information of any sort. Counselling isn't for everyone but it was for me. Breast cancer from my perspective was like a project. A really horrid project I might add. After diagnosis I decided to treat it like that and throw everything I could at it and counselling was one of those "things" I hit it with. Retail therapy was another thing too but that's another story in it's own right.


So 9 months on after diagnosis again I encountered a wet kitchen floor. This time it was a leak from the bathroom, causing a downpour into the kitchen. The damage was much worse and would require extensive work; an insurance job requiring new floors, ceilings and plasterwork. This time however I didn't cry. I didn't think why me or how unlucky I was or how would I cope with this disaster. After going through breast cancer the fact that I had to have the kitchen ceiling re plastered, bathroom floor redone and my sons room carpet ripped up and relaid due to a flood just didn't register on my Richter scale.


Suffice to say I've gained clarity and perspective going through breast cancer. I'm here to sort out the mess and that's what really matters.

Breast cancer awareness month: So much to say...

Wow....

What a month.

Last October, 2014, I was halfway through chemo. Quite frankly, I looked and felt like a bag of crap. The massive bald patch on top of my head, steroid bloat, Generic Cancer Face as a result of missing eyebrows and eyelashes, constantly streaming eyes and nose, sore and bleeding arse, and rank mouth thanks to oral thrush were actually the least of my worries. I was more concerned with my upcoming CT and ultrasound scans. Worst case - the results would show my cancer had spread and was incurable. Best case - the scans would be clear and I could look forward to my post-chemo treat of.... surgery. Ooh goody! A skin-sparing (but not nipple-sparing) mastectomy with immediate reconstruction using latissimus dorsi muscle flap, and expander implant. It's as lovely as it sounds. I was also newly single, knew I would never have children of my own even if I did stay alive (and that's if I even managed to find someone new to love me, cancer and all!)

So much of the "awareness raising" and fundraising that goes on during Breast Cancer Awareness Month is a smack in the face to young women like me who are undergoing or have undergone treatment for that very disease. Last year it was pink Playboy bunnies strutting round train stations with collection buckets, this year it was a social media campaign to... show everyone your bra strap on Facebook/Instagram/Twitter. Gah! (Don't get me wrong - both fundraising and awareness raising are incredibly important - but it doesn't have to be so insensitive).

I'd set this blog up in March to encourage and support young women with breast cancer to write about and share their experiences. Writing is cathartic! As October approached I realised the blog was also an ideal platform to do some awareness raising of what it's really like to be a young woman with breast cancer. I hoped that I might be able to publish a new post every day throughout the month.

Thank you!

In actual fact - there have been 65 posts on the blog this October. I have been blown away by the response from young women across the country, who wanted to add their voice and share their stories. It has been an absolute honour to read, publish and share every single one of them. I would like to say a HUGE THANK YOU to all of the women who took the time to write for the blog for breast cancer awareness month. There have been over 16,000 views on the blog during October. Your stories have both educated and inspired. THANK YOU!

I would also like to say thank you to everyone out there who has liked the Facebook page, followed us on Twitter, shared the blog posts, and added their kind and supportive comments. Every single one has been very much appreciated. Please continue to read, comment, and share. It feels as though the Young Women's Breast Cancer Blog is becoming a safe and supportive community - you are all a part of that.

Thank you also to the AWESOME Jo Harrison for designing our very own special pink ribbons.

 

Thank you to Melissa Fletcher for designing the pink photo ribbon we used as part of our October "logo".

And thank you to all of the amazing young women with breast cancer who contributed their photos to create this poster.

So what's next?!

Breast Cancer Awareness Month might be at it's end, but the blog is here year round. Any young woman in the UK with a breast cancer diagnosis can contribute to the blog at any time. Here's some information that will hopefully be of use if you are interested!

• About the blog
• Why write?
• Submitting a blog post
• Having a post published - things to know

If you have any queries - please do get in touch at ywbcblog@yahoo.co.uk.

But there's more!

Throughout October a number of conversations have been taking place behind the scenes and... we are going to do a special series of blog posts at the end of November/beginning of December. There'll be a separate post calling out for submissions very soon, but I wanted to give a heads up just now. It's going to be a no holds barred, unfiltered, honest series about being young and single with breast cancer. Sex, dating, body confidence and all the rest of it. If this is something you might like to contribute to please get in touch at ywbcblog@yahoo.co.uk. All posts can be kept completely anonymous.

More info coming very soon!

In the meantime, thank you again for all of your support during breast cancer awareness month. Go and check your breasts now eh?

Sarah xx

Breast cancer awareness month: Hummingbird

Author: Sarah C

My heart is full. I am joyful. It is two months since my surgery and I am well. I have got through this. I have lived through this. I am in love with this moment. My stomach flutters like the wings of a hummingbird and life pulses through me.

Yesterday I spent all day in meditation. Mindful. Mindful of the fact that this is the end of the acute phase of my cancer journey. My wounds have healed. No fluid, no swelling, just a scar which looks less angry every day. I have accepted the loss of my breast and am slowly coming to terms with the practicalities of what this means. Negotiating changing rooms and swimming pools and conversations with awkward questions.

The hardest part has been having to massage the scar every day. Looking in the mirror at the wound where my breast once was and slowly, gently trying to bring the flesh back to life. The surgeon cuts through the muscles and nerves and the area of the wound becomes numb. With proper care and attention you can coax the nerves back to life but you have to be brave. You have to look at the site where the cancer was, you have to face the trauma of the cutting and the stitching and marvel at the miracle of healing. You have to be kind to yourself, body and mind. You have to take time. You have to accept.

Yesterday in meditation I decided to celebrate this moment. To enjoy the crescendo of this part of the healing process. The body is a miraculous thing. Life is a marvellous journey. I am scared of tomorrow and the tablets I will have to take and the risk of the abnormal cells multiplying and dividing, forming a new army ready to invade like Putin’s people on the borders of the Ukraine. But this is today, this is now. I am well. I stood and I closed my eyes and I said thank you to whoever or whatever has led me here. Whatever has been my guide, my Sherpa on the rocky terrain of illness, I know I have been guided through to this place.

As I closed my eyes a dove swooped down in front of me. It was a big and powerful bird and it quickly disappeared. Then quietly, gently a hummingbird came into sight and stayed, hovering just over my heart in front of my chest. Technicolour and startlingly beautiful, I felt like Mary Poppins without the excruciating Dick Van Dyke and the fluttering of its tiny wings reverberated through my body with a joy and freedom I cannot describe.

Eight years ago at a time of crisis I went to Barbados and made some decisions that changed the path of my life. The decisions took courage and strength and meant breaking with the old ways to find a new happiness. There was a humming bird nesting on the veranda of the house I was staying in. Every time I stepped out on to the veranda the humming bird came out. My heart opened at the sight of it and I found the courage to live a new way, inspired by this tiny bird who could move so fast and yet always stand still, entranced by the energy and the strength of this magical creature. Yesterday the humming bird came back.

Tomorrow I get the tablets which mark the start of the next phase of my cancer journey. The banality of the everyday living with chronic illness, daily poisoning myself with the tablets in the hope it will kill the potential future threat. My own personal war on my own personal terror but for now I just need to hold onto this moment and make sure I keep my humming bird with me as I make my first faltering steps into the future. 

Sarah writes at  http://livethroughthisblog.wordpress.com/2014/06/20/live-through-this/

Breast cancer awareness month: Like losing a little part of me

Author: Laura

It's very hard to put into words how having breast cancer has made me feel. 

I feel a little like they cut a little piece of me away when they cut out my lump. 

 

That little piece may have been my tolerance, I have less patience with people's moaning about the things they have the power to change. 
 

 

That little piece may be part of my identity, sometimes I feel like all people want to ask is how the treatment is going, and I know that they mean well, but sometimes I would like to talk about something else.

 

That little piece sometimes feels like the friend I was, when people try to protect me from their dramas (because it's nothing compared to what I'm going through?!?) it doesn't matter how big or small the problems you are facing are, a problem shared is a problem halved and all that.... Please talk to me!! You know,sometimes it's nice to know that other people are having a tough time too (not that I want anyone else to have a rubbish time) but then I don't feel so isolated and alone.

 

That little piece is sometimes my confidence. Chemo steroid weight gain, scars, bloating, baldness, eyelashless, ruined nails, more scars.... I will never look in the mirror and see myself, but now see a new person who I am learning to love. I know my hair will grow and my scars will fade, but right here, right now, it's hard to look at my reflection.

 

That little piece is sometimes my energy, just making it through the school run, a hospital visit, a few hours work, and I'm completely wiped out!

 

But, in the little pieces I have lost, I feel there is so much more I have to give, and so much that I have gained. 

 

The strength my family and friends have shown has blown me away. 

 

The support my colleagues have given is phenomenal! Planning nice gifts, collecting well wishes from our clients and saving them for my "bad day" each cycle, creating a box of sunshine (filled with anything yellow and sunny.... Anything from mustard to sand?!? Ha ha)

 

They say in times of trouble you learn who your friends are, my diagnosis has shown me that people are kinder than I could have imagined and care more than I realised.

 

It will take a long time to find that little piece of me that I feel I have lost, but with my husband at my side and my friends and family behind me, I know I will get there. 

 

Thank you x

Breast cancer awareness month: Tales of asymmetry, dating and always looking on the bright side...

Author: Alison G

To the left, to the left … All the single ladies, all the single ladies…

Yes, I am a fan of Beyoncé, but these lyrics also have a lot more meaning, which I’d like to share with you in my unique take on life as an asymmetrical woman.

So, there was a film on recently, in it a man takes an earth shatteringly beautiful woman home after picking her up in a club. They get back to his room and he confesses, he was umm exaggerating about the size of his body part. She laughs and says, ‘Don’t worry, let’s be real.’ She then takes out her contact lens, then whips off her wig….he gasps…..next come her boobs, he attempts to leave, and I kid you not, followed by her bottom and lastly leg.

I’m not quite sure what was funny in this after all, as hang on just a few years back this could be me.

 
Breast cancer can have you feeling like the incredible detachable woman

Just 4 years ago my body was in symmetry, my body parts could have lined up two by two, to jump on board Noah’s Ark.  Two eyebrows check, two boobs check…

In May 2012, aged 40 and full of life and mischief, my life was interrupted by a shock diagnosis of an unknown primary tumour that had metastasized (spread to you and I) to my lymph nodes. The next two weeks were largely spent in hospital gowns, having every available test, chemical cocktail and radioactive power being charged through my confused body. Every day I woke up hoping this was a bad dream and put on a brave face to all those I loved. After 2 weeks it was confirmed as Breast Cancer.

I would say I was fortunate that I had 5 weeks from my diagnosis until my mastectomy, it gave me time to absorb this information, and actively search images to see what this would mean. I can’t imagine how difficult it would feel to be given a diagnosis on Monday and operated on Wednesday. I needed time to understand just what the heck was happening. So I remain grateful circumstances enabled this (my surgeon being on holiday).

Have you ever seen a mastectomy image? I hadn’t, so I educated myself and told myself, ‘You’re going to need to love this new you, as you might be like it a long time, if not forever’

After being told I had cancer I wasn’t offered immediate reconstruction, not everyone is, it depends on the type of treatment you need afterwards, I had a locally advanced cancer which appeared aggressive so they wanted to whip it off as soon as possible, before blasting me with chemotherapy and radiotherapy. By the way it is annoying when people say, ‘so and so had reconstruction immediately, why haven’t you?’ Or ‘so and so had recon and now has amazing boobs and a flat stomach' – yawnnnnn.

I had time to prepare and cope with being left asymmetrical, and predictably my humour emerged as a coping strategy. I planned a Bon Voyage Booby Party, where with good friends we celebrated the imminent departure of my left boob, playing snap, match the boobs, eating chocolate nipples. Jelly boobs and all members dressed with fake boobs, the best being the old lady sock boobs that made passers-by imagine we were a Hen Night. For me laughter is the breast cure …

I had a blog 2theleft, where I could express my feelings, and a closed Facebook group for my close friends and family, which was usually filled with images, and articles. Many might think my humour tasteless, but it worked for me. We made a playlist….’to the left’ obviously made the list, so did ‘Gone’ – Nsync, ‘Man I feel like a Woman’. Tasteless and tacky yes, but a way of helping me and those closest to me to cope with the shock of what had happened.

You don’t necessary jump up and fully embrace your asymmetrical look, for some women it can take weeks, months or even years to accept and embrace this change. For me, I made it my mission to love my lop-sidedness. I wanted to see the scar as soon as possible, and joked with the surgeon by turning one side I was 7lb lighter. Not sure she found this as amusing – she did make me wear a straight jacket for a while! I jest….

I wanted to accept the new me, and considered without my left breast I could place my hand on the bony landscape where a boob used to exist and feel my heart beating away, it’s kind of comforting. I mulled that it perhaps would make me more vulnerable, and open to love. Hmmm we’ll come back to that.

It’s not easy being asymmetrical, your body wants to compensate for the shift and balance. Dressing is different, you have to change the way your dress so that your prosthesis doesn’t fall out, or appear over the top of your clothing giving away your secret. Initially you have a softie, that you can squeeze into shape and then after your scar settles you graduate to a silicon prosthesis that sits inside your bra and feels like a real breast. It certainly intrigues most people who feel it, it’s like a boob shaped stress ball. A heavy one.

Perks of asymmetry…

You have Go Go Gadget Boobs, I have a different one to swim, a different one in the summer – I’m sure I could have a special one for nights out even with a sequined nipple if I searched the internet.

But obviously you have no sensation, so if someone slams a door on my left boob I look blankly at them, or if someone nudges me by accident and flushes expecting a reprimand…they are surprised that I probably didn’t even notice. Or and if it’s cold my right nipple will respond, and not my left – which is obviously AWOL. I think people are too polite to mention this.

Going through airport customs or being searched to get into a club or concert will have a little doubt – imagine they realise it’s a fake boob and then think I’m a drugs mule, or female impersonator. The ping of an elastic glove can have me running faster that Bolt.

Women joke about finishing work and removing their bras, I can go one up on this, by coming home and whipping my boob off. I never thought at 40 I’d be going to bed with my boob nestled beside me in its only little pillow. Will be my teeth next?

If there is a strong breeze in the office I can whip it off and it becomes a paperweight …or if a conversation with a potential date isn’t going well I take it off and end the night…. OK the last two are fictitious, but what a thought though.

The lows…

At first I’d be self-conscious going boob less even around my kids, but during chemo and radiotherapy I lost that, along with all my hair, including nasal hair, eyelashes, eyebrows, toe nails and finger nails. I didn’t lose weight though, no steroids and chemotherapy bloated my body and the scales went up by 9kg. How’s that even fair?

Ending 2012 I felt absolutely repulsive to all, including myself sadly. In public wearing a wig, and being fully dressed I might have the occasional guy smile at me and I’d drop my eyes feeling a fraud. Thinking if you saw me underneath this you’d certainly not give me the same appreciative glance.  The toll of the diagnosis and treatment can grind you down, I didn’t want to focus on how bad I looked, or felt, and instead focused on finishing all treatment and getting back in the gym.

Being stripped of all things that you define as making you feel feminine is extremely difficult. Every day we are bombarded with beautiful celebrities and images of ‘perfection’ I can safely say I felt offended by society’s ideal of beauty at this point in my life and had serious eyebrow envy.

Don’t worry it will grow back ………

Well my boob won’t, unless I am a strange mutation after all.  Hair – yes, but let me tell you growing back from bald is the longest wait of your life.

The year following active treatment ended my confidence, that had initially soared for seeing off cancer and having No Evidence of Disease (NED) dropped as reality took over, feeling uncomfortable with the no style short style hair, the traitorous eyebrows that never grew back and my stubby eyelashes, oh and hard to shake Tamoxifen pounds I wanted to hibernate.

Between 2012 and 2014 every woman seemed to have HD eyebrows, doubly long lashes and waist length hair.  I had a pair of eyebrows drawn on with a sharpie – to stop them rubbing off, and slow growing chemo curls.

Don’t hate, appreciate….

In truth your body is a miracle, just as it can stretch and accommodate a growing baby, it can defragment from cancer treatment and pull back together.

It’s not even 3 years since I finished chemo and I have hair I can flick, and twirl round my fingers, and hide behind again, oh boy that feels good. To reassure anyone currently in treatment, no product advertised makes it grow faster or thicker, it just takes time. Obviously my nails grew back, my eyelashes too, not as full as they were before but that’s a potential side effect of being thrust into a premature menopause from Tamoxifen.

It’s widely reported that women diagnosed with breast cancer face high rates of anxiety, depression and decreased self-esteem. Whilst going through treatment everyone is behind you regarding you a hero for battling the bad C word. Once the active treatment ends, you are left piecing back together your life and body parts potentially.

I am always saddened when I read about women who feel they have been ‘mutilated’ and can’t look at their scars. Women whose partners or husbands leave them as they too can’t cope with the physical, psychological and emotional changes that cancer leaves you with.

I was dating prior to my diagnosis, and I haven’t since. Why? I consider this a process that I’ve been working through, I had to work through loving me fully and wholly first. Guess also after all I’ve been through this hasn’t actually been a priority – a) Beat Cancer b) get a boyfriend.

Ok admittedly perhaps I was too fearful to show my vulnerability and face rejection for exposing my own unique lopsided beauty before now. It all takes time. For anyone else in the minority, as it certainly feels that ‘being single during cancer or beyond’ is a minority, when you read the thousands of threads praising loving husbands, Hang in there.  People will tell you that, ‘someone who really loves you won’t care.’  The person who probably said that wasn’t single!!

My advice – be your own cheerleader, love yourself and let your body and confidence repair. Once you start to feel this returning, opportunities will appear too. I did a search to find threads, blogs and articles from other single women post breast cancer who had not had reconstruction and found barely anything. So I guess we have to be the ones to step out boldly and do this, what have we go to lose? Remember if the date's going badly, whip out the prosthesis and watch him run.

Breast cancer awareness month: "But I don't know what to say"

Author: Anonymous

A recurring theme among my breast cancer chums is how we lose friends and acquaintances after we get diagnosed. Some people, who we least expect, step up and are amazing. Others who we'd normally consider really good friends fall by the wayside. Some of us have found that once our treatments finish those same friends expect to pick up where they left off and this is difficult for us. We've witnessed that when the chips are down they didn't have our backs.

Don't get me wrong some of the phrases that I'm mentioning have probably crossed my own lips before, but let's say after my diagnosis and subsequent treatment I'm a little....let's say.....more aware of what I say.

It's really hard for us to know that you've been avoiding us simply because you didn't know what to say or do. When all is said and done, you know your friend, you know which of these tips applies to your friend with breast cancer. Most of these are personal to me, some have been inspired by my breast cancer friends. I hope they help you understand a little bit more about how your friend is feeling. Above all else, when the chips are down it doesn't matter what you say or do as long as you carry on saying and doing something - anything. We lose so many friends and that's really sad.

So let's crack on!

 

That head tilt!.........it's ok to feel sorry for someone with cancer, it sucks after all, but sorry is an apology and you have nothing to apologise for. It isn't your fault. It isn't anyone's fault. Instead think about saying "I'm so sorry this has happened to you, can I do anything/would you like to talk about it". We know you mean well but that head tilt speaks volumes to someone diagnosed with cancer.
 

Cancer isn't a fight, it's a bloody endurance test and yes we need encouragement to get through treatment and surgeries but we need support above all else. Saying things will be fine is belittling our situation. We never know it will be fine and what makes me more of a fighter than someone who lost their life to cancer?.... Did they not fight hard enough? Instead think about saying "I hope everything turns out ok" or "I'm praying for you" or simply "Do you want to talk about it?"
 

We won't ask! We're stubborn creatures but we are also independent and feel we should be at the prime of life. Nothing blows your self esteem than having to ask for help. If you want to help, pop around with a lasagne for the family, we need to eat well. Ring us on a Saturday and ask if the kids or us want to go to the park. Ring us when you are in the supermarket and ask us what we need. If you've come around for a cuppa and you feel inclined go ahead and make the tea and possibly do that bit of washing up. We will be forever grateful for your help but we probably wont ask and we'll probably say "oh it's ok I don't need any help but thanks for offering."

Surgery options, treatment options, reliving diagnosis, worries, fears or just generally wanting a whinge. No opinions needed just a kind ear.
 

We want to know what's going on in your lives. Nothing sucks more as a cancer patient than being the last to know anything. We want to know what's up with you right now. We want to be able to help and advise as we always have. We are still your friend first and foremost and to be honest it takes our mind off of us a little at your expense but it's nice to have something to think about other than cancer.

For one thing it's always beneficial to have a second set of ears. Hospitals are horrible and a lot of time is spent just waiting. Take her to chemo and keep her occupied. Take notes of what is said. Hold her hand.

A lot of cancer patients feel like all their decisions are being made for them and the truth is they probably are. If you have a party/lunch date/dinner planned don't assume that they won't want to come because they are having treatment. Invite them as you always would. A patient can feel fine one minute and dreadful the next. It helps them to have a focus and plans in place and if they cancel at the last minute don't be mad just rearrange. A lot of cancer patients believe it or not lose friends because they become less reliable than they used to be for obvious reasons. It won't last forever but their recollections of how you handled those situations will last a lifetime for them.

Lots of us blog our experiences. Read them.......all of them. You'll probably learn a lot.

We of all people understand what it's like to feel poorly and to be honest most of the time our immune systems are so trashed the sniffles for you could mean a hospital stay for us - but the internet is a wonderful thing and so is connecting to the people you love. We want to know what's going on in your life. So think about Skype or FaceTime it's a wonderful way to connect and chat that doesn't make our numb fingers ache. If life has been manic fair enough but you know what there's always a minute for a quick text even if it is just to say "things are manic, catch up soon" - you probably would have before.

That may be true, but give us some credit our bodies are going through hell and so are we. We might be pretty cruddy friends right now but we're still your friend and to be honest the chemo fog makes it hard to remember our own names let alone yours. Sorry!

It's not all doom and gloom. We still like a laugh as much as we ever did. Joke about things when appropriate to do so. If she's worried about going out in her wig do your hair up so hideously that no one will be looking at her. You'll laugh! I bet.

Truth of the matter is cancer is lonely. We lose people because they feel they don't know what to say or do. Send us messages, arrange visits, ask us out for coffee no matter what we'll be grateful for the company and change of scenery.

So talk about the weather, tell us about the shoes you bought for your date on Saturday.........tell us about the date on Saturday! Tell us about the annoying woman at work who went around all afternoon with bog roll stuck to her shoe! We wanna know! We're interested in life outside of cancer too. It's your company and most of all your friendship we want not an in depth profound conversation on the meaning of life.

 

With anything! Just anything. Little gifts, cards, letters, magazines, DVDs, pamper sessions, conversation.

Well that feeling is mutual but please don't lay any unnecessary guilt on us. We already feel guilty for upsetting the lives of our family/friends/kids/partners.

Yes please! Please help us to nourish ourselves when we're probably too tired/feeling too rubbish to do it ourselves. Co-ordinate with your other friends so we don't end up with 6 dinners on one night. Flowers and chocolates are lovely also but you can't beat a home cooked meal.

If she says struggling with the house work suggest a cleaner, phone around some and ask for quotes or see what local charities offer the services, if you can tell she's generally not herself suggest she seek counselling which is available to nearly all people diagnosed. Or again look up local charities, the Haven offer specifically tailored courses for women with breast cancer. Encourage her to accept all help that's offered to her. It can be a very hard thing to accept that you need help- support her through it.

Who wants any sort of cancer?! No cancer is good cancer. People die from breast cancer. Nearly 12,000 women a year in fact. There are lots of treatment options, but for some women those options run out. Just no!

Well thanks, maybe I will and maybe it'll hurt less than major surgery or Tax chemo aches!

The worst thing that can happen when you feel like pouring your heart out is being told "don't talk like that, you've got to stay positive". We do try to stay optimistic on the whole but sometimes it's good to let it out. If we want to talk about worst case scenarios or who we want to look after our dogs if we're not here one day then just let us say it. We're both hoping it won't come to that.

Take her out, take her kids out, do the school run, take the dog for a walk. Cancer affects not only the person diagnosed but all those around them too. Try to help her make day to day life as normal as possible for everyone else.

Well it is a bonus not having to shave but not having hair, lashes or brows sucks! I don't care if I have a nice shaped head! I want my long locks back and I want to have to spend 1/2 and hours tousling my tresses before a night out!

Thanks for these little nuggets. For now I'd like to form my own opinions based on medical facts, thought through and discussed with my oncologist. I'm not dismissing your ideas but please don't ask me to accept your ideas as medical fact. It's a minefield as it is learning a whole new medical dialect. Find me a leaflet and I'll have a read if and when I'm ready.

Nothing is screaming out of a cancer patients head more than the thought of death and dying. Lots of people die from cancer, that's a horrific fact. We've probably lost people we know and love from it too. Just don't say anything on that subject at all.

Hair cutting before chemo, throw a party. Birthday, throw a party. End of treatment, throw a party. Good test results, throw a party. We love nothing better than a good excuse to be around the people that we love.

There will be times when we still continue to look pretty amazing, it normally takes some effort, makeup, wigs or withstanding the cold cap. But don't presume because we can look well that we are. A lot of people especially those with secondary breast cancer can look really well a lot of the time. The honest truth is we normally get tired very easily, can pick up bugs pretty swiftly and that's not to mention the psychological impact we're going through. Instead say something like "you are looking well today, how are you feeling".

Tell that to the 6 month old baby with leukaemia. Cancer doesn't give a damn about your age. We can't say I'm sorry Mr Cancer sir but I can't have you because I'm only in my 30's so go away.......if only.

Yes! Friends do ask. Reconstructions after a mastectomy aren't at all like having an augmentation. We may learn to live with our scars and grow to be proud of them but early on they cause us an array of emotions, they are red and sore. Most of all we all pretty much liked our boobs just how they were thanks very much. If we want to show you we'll ask if you want to see.

If we've just had chemo probably be in our pj's looking and feeling a bit rubbish but your effort counts a ton. We might not be up to much conversation especially in the early days after chemo but we love seeing you and yes we'd love a sandwich and a cup of tea.....you know where the kitchen is.

The best any breast cancer patient can hope for is NED - no evidence of disease. Breast cancer has a funny little habit of rearing its ugly head even years down the line. We don't get given the all clear -we get sent away with a list of symptoms to look out for for possible recurrences and we have yearly mammograms to check for recurrence. And even if my body is cancer free now, my mind will never be.

No one knows! We've probably racked our brains, calculated every contraceptive pill we've ever taken. Recollected every bump our boobs have taken. Analysed every morsel of food and drink that's passed our lips. Unless we are diagnosed with a gene mutation which could give us a greater risk there's just no way of knowing. Unless we bring it up let's let sleeping dogs lay.

Surgeries, steroids, anti sickness drugs and chemo not only knock us on our backsides and make some of us less active. The steroids and anti sickness meds actually fuel our appetites. Not all women are the same - some lose, some gain and some stay the same.

I go back to the "all women are different" comment and also add all chemos are different. Some people sail through chemo, some end up so sick with it that they can't even have all of their treatments. Don't make your friend feel bad for not living up to your expectations.

If there's anything your friend could do with, especially if she has no hair, has gained weight, is loosing her nails, has no brows or lashes, it is an ego boost. Compliment her on how fab her wig is, or her new sunglasses. Try to avoid saying things like your new hair cut really suits you, FYI it's not a cut and we didn't choose it. But we like compliments just like the next person.

No no no no no! Just don't ask. We aren't told. How long is a piece of string. Unless we say otherwise we are gonna live till we are old ok.

We're fighting for our lives here. Please don't dismiss yours with a flippant remark. 

You could and you would if you had to. Brave is making a choice to do something that scares you. I suppose in a way we do make a choice to endure the treatments but the alternative is much scarier so in that case I'm actually a great big scaredy cat......see what I did there.

It's not a walk in the park for us either but we're hoping this is just a blip. Sometimes in life you have to face difficult situations.

................ We need you now more than ever!

So there it is. I'm sure there are many, many more that I haven't thought about. Feel free to add them in the comments.

Like I said before though these are just tips if you are finding it difficult to know what to say and what not to say but at the end of the day we just want to stay friends and for at least one aspect of our lives not to change forever.