Saturday 28 November 2015

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.

Tuesday 24 November 2015

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

Sunday 15 November 2015

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 19th of November 2014 when my sister was having her 36th 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 7th 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
 

Sunday 1 November 2015

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.