Normality

Author: Bev

Normality is a variable concept. Once you've had news that shatters your sense of 'normal' you have to learn to adapt and find that 'new normal', or else your sense of self will be obliterated. This is a common thing that seems to happen to us ladies when we've been given the news that we have cancer.

Initially you are caught up in what seems to be a whirlwind as you are sent for various tests and have to attend many appointments. Generally most of us were fit and healthy individuals who had little contact with health professionals – yet all these hospital visits strangely become our 'new normal'. In fact it was spending so much time in hospital that made me want to work as a nurse again...but that's just me. I think most of my friends hated being there!!

When you get your treatment plan your 'new normal' shifts yet again. You live in three weekly/weekly) cycles when the poisonous chemotherapy drugs are pumped into your body; you submit yourself to the hands of the surgical team who – you hope – will remove the offender from your body; and you allow intense beams of radiation to fry the damaged parts...all in the hope that this will kill the perpetrator and prevent it from ever coming back.

After all the so called 'active' treatment is finished you may find yourself taking other drugs to help keep the cancer from returning. Or you may still be a frequent user of the health services due to side effects of the treatment. This is now your 'new normal'.

It's often hardest once all the treatment is completed and everyone thinks that you're all better. You start to look less ill, your hair grows back and it seems it's all in the past. I so wish that was the case. For me the after effects from treatment are quite mild compared to others. I wake up every morning with numb hands (which makes turning the alarm clock off interesting when you can't feel the button!). I have less energy than I did BC (before cancer), although I have more good days in between, and I'm hoping this will continue to improve. My brain seems to still be lagging behind. I have paper all over the house with lists and reminders on it...and I often get halfway through a conversation when I forget what I'm talking about, or forget the name for something. 'Chemo Brain' is recognised by the medical profession.

But despite all this, I would do it all over again in a heartbeat. The alternative is a much less attractive proposition. This is my 'normal' now. Trying to adapt to this new life I have and all that goes with it.

What I am most envious of from my 'old' life is that I didn't have the worries and anxieties. If I hurt somewhere it was just 'normal'...maybe it was a pulled muscle from overdoing it, or I'd slept at an odd angle and it made my neck hurt.

Now my first thought is cancer. I seem to have a 'fast track' pass to the hospital...anything you have reason to see a doctor about – they'll be looking for cancer too. I don't think it helps that you will never get a bit of paper saying that you're all cured, it won't ever come back. It’s a little bit like a time bomb waiting to go off. My hip aches...it's spread to my bones. I have a headache...it's in my brain. I'm not alone in this either. I'm sure between the lot of us my beautiful tribe have convinced ourselves that we have got cancers and illnesses that probably don't even exist! Having cancer not only affects your body, but it messes with your head big time. 'Normal' people don't think like this do they? I certainly never used to think like this BC and I'm sure most of them didn't either. This is the 'new' normal we are trying to live with.

Of course, we don't all spend our days sitting worrying about this. We do try and carry on and fit in (when we can) with everyone else's normal...going to work, looking after the children, having holidays, going to parties etc.

We celebrate things that other people would think odd. Say if somebody went for a bone scan and results came back showing they have arthritis...we’d cheer those results. It's not cancer – yay! BC this would have seemed rather strange.

Sadly, for some of my friends their 'new' normal is the one none of us wants. They have stage 4 cancer. Metastatic cancer. Secondaries. That means it is incurable. Medical advances mean that there is a chance that the cancer can be stabilised with medication and they may live for a long time...but that 'terminal' word is always hanging over them. Their clock ticks a little bit faster and a little bit louder.

This week our tribe were all rocked to the core upon learning that one of us had been given this very news. Obviously we are all devastated that another of our friends has to undergo further treatment. Sadly it is not an uncommon occurrence in this new world we inhabit. At this time we aren't sure of the extent of the spread or what plan is to be put in place. We are all anxiously waiting to hear.

Nowhere else have I witnessed such an outpouring of sadness and love and heartfelt wishes that flowed upon hearing the news. The total togetherness was absolute. I think it true to say 'if one bleeds, we all bleed'. That is very much our mentality. However after the shockwaves diminished, we set about doing what we do best, rallying round and offering our unconditional support both practically and emotionally.

Whilst it is fair to say that what we can actually do is limited, what we can offer is limitless. Our 'normal' has shifted once again to encompass this new news. Our energies are now spent on buoying each other up, helping those who are drowning a little to stay afloat, and loving each other that little bit harder. We can't allow ourselves to be dragged down...we have to help each other ride out the storm, wherever it may take us and them. We have to keep OUR normal and not borrow theirs. That helps nobody.

In an ideal world my 'normal' would be just like everyone else's, and I would have little knowledge of what I know now. But then I suppose everyone has their own demons. And without this constantly changing 'new normal' I seem to live in, I wouldn't have my tribe. And whilst I wish that I hadn't had to meet them I am so very glad that I did. They can make what others see as abnormal seem all right. I would be totally lost without them. 

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.

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

 

Breast cancer awareness month: Tainted school days

Author: Charlotte S

I loved school, from my tiny primary to my huge secondary where I stayed on to do A levels.
I was fortunate to not get bullied, I wasnt miss popular nor the cleverest, I was me and I coasted along without any major concerns.... I look back on those years with a smile and good memories and I'm grateful to Facebook for helping me to reconnect with special friends.

But now I look at my children who were 12 and 14 when I was diagnosed with Triple Negative breast cancer and I wonder how different their time at secondary school could have been. It makes me feel sick that when they look back at these years in 20 years time will all the fun times be tainted by the memory of what home was like. My cancer is a stubborn mule and almost 5 years on I'm still having almost constant treatment. Have they gone to school and been laughed at because their mum has no hair and one boob...I know they wouldnt admit it to me... Both my children have great friends but its all the others that worry me...was there a child who would say things as they passed?

Would they have done even better in their exams if they didnt have me at home hogging the attention?  I know I took my eye off the ball when it came to nagging over revision.

But most of all I just hate the thought that they will look back with sadness.

Breast cancer awareness month: Adversity to solidarity

Author: Sam R

Sam writes at www.samspaces.co.uk

In December 2005 I was diagnosed with hormone receptive grade 3 breast cancer in my left breast. It had spread to my lymph glands so I had two operations and then chemo and radio. I was 27.

It was a tough time but I had the most amazing support network around me and I did what I could do to distract myself when possible and worked part time. Having to press that major pause button on my young life was very frustrating but I got through it and reached the end of my remission.

Having just got married in 2009, by some miracle, we fell pregnant. I couldn't believe it and we had a baby girl in October 2010. Eighteen months later, in June 2012, I was diagnosed with a secondary in my clavicle and two spots showed up on the PET scan on my sternum. It was a bit of an M15 investigation as it was over the summer but we eventually decided to operate on the lump we could feel and I then had two months of radio.

Learning how to cope with that and a small child as well as moving house on the day of my results was a challenging time, but again, friends and family played a massive role and I feel so blessed to have had them.

I became very aware of helping my wellbeing at this point, dealing with the idea of reoccurrence was very scary and I realised how important it was to be pro active about my emotional, physical and mental health. After the last 6 years of trying lots of different things out, I threw myself into this and started blogging about being a younger patient with BC and the far reaching affects of this. I wanted to offer some solidarity to others that had been through this because I had felt a gap in the amount of patients, my age, when I was going through it.

My Samspace blog started going down really well and then, to my dismay I was diagnosed again in February 2014, this time with a primary in my right breast. I opted for a double mastectomy and a reconstruction and turned my attention to reviewing all the practical things we can do to help our wellbeing after a cancer diagnosis. There is so much information out there that it can be so over whelming for someone who might be facing returning to life after treatment and I wanted to reach out to them and act as a link in the chain to their recovery journey and be a signpost to other professionals who could help them. It has been a long road and my healing and recovery continue but linking with other people affected helps create such a supportive community that we can all offer something inspiring and unique to.

I will be celebrating the ten year anniversary of my first diagnosis this December. I can hardly believe it but despite being tough, it has made me who I am and if I can offer something positive to others going through it, thats enough xxx

Breast cancer awareness month: Jo's Story - Jo Knell (Jojo Gingerhead)

Author: Sam Knell (Jo's mum)

Jo's Story - Jo Knell (Jojo Gingerhead)

16.04.1983 – 15.05.2015

 

This is a hard one to write but I'm positive that Jo would have wanted to share her story with others who didn't get to know or meet her in life, so therefore I'm doing my best even though I find it heart breaking to do so. Jo (Jojo Gingerhead) was amazing – she was an incredible daughter, a trustworthy and loyal friend, an innovative and talented artist and musician and a joy to know. Her humour was black and alternative, her art projects were thought provoking and unusual and her “give everything you've got” attitude to life was inspiring. Some of her projects like Foundism which was based on things she and friends had found in everyday life and subsequently coated in plaster of paris and exhibited were very entertaining. Her photographic collection of fruit teas and vegetables in different states of decay were a bit of an ordeal for her work colleagues but colourful and different. Her Christmas Chemobrow 2014 blog with the Younger Breast CancerNetwork (YBCN) girls went viral and she was so excited at the attention it received as it highlighted women with breast cancer being silly and just having some fun for a change.  She saw beauty in things that most people would pass by and she had a way of getting people to look at life differently.

She never let people down – if she said she was going to do something she would do it – she was everything you could want in a daughter and a friend and I know that she was well loved by so many and immeasurably missed by all. My life is bleak without her and I know all of her many friends feel the same way and we will probably never get to meet someone like Jo again. She was a force of nature which makes the loss so very hard to bear.

Her blog The Malignant Ginger was funny and courageous and inspired so many people in the same situation but also raised awareness about the realities of having breast cancer to those with no experience of it.  The world is a less colourful and interesting place without her and the thought that I will never get to see her art projects or hear her music, hear her giggle or listen to her opinions on what's going on in the world is hard for me to live with. If I could have exchanged places with Jo so that she was here now instead of me I would have done so in a heartbeat.

It never occurred to me when I was diagnosed with breast cancer in November 2011 that my daughter may be at risk for there was no history of this in my family as far as I knew. I was diagnosed with a Grade 3 invasive ductal carcinoma after I noticed my nipple inverting. Five months previously I had a serious fall in my garden and fell heavily on this breast fracturing two ribs and as I knew that cancer can be triggered by trauma assumed that this is what had happened. I had a lumpectomy and radiotherapy but no other treatment. I tried to make as little fuss as possible as I didn’t want to cause my children any worries, especially as they had lost their dad to cancer in 2000. At no stage did I think that Jo would be affected by this so when she rang me in May 2014 to tell me she had been diagnosed with breast cancer I was devastated, shocked and far more concerned than I ever was when I was diagnosed. I had always had worries of Jo inheriting fibromyalgia from me as it is a condition that can run in families particularly from mother to daughter.

Jo was diagnosed first with a localized Grade 3 Oestrogen and HER2 positive breast cancer. She started chemotherapy immediately and then had a lumpectomy in November 2014. She then had radiotherapy and was prescribed Tamoxifen. All her scans up to that point were clear so we were reassured that the outcome would be positive. Through her chemo treatment she was upbeat and carried on with her life, being more concerned with how her friends and family were coping with it all. She didn't invite pity or let her friends treat her any different but just dealt with everything that was thrown at her which was inspirational.

She came home to me for Christmas 2014 but whilst there she discovered another lump in the same breast. When she saw her consultant it was thought that there were no worries as it was presumed that the lump was probably scar tissue. However on further investigation it was discovered that it was indeed cancer but not the same as the original diagnosis - it was now triple negative. Subsequent scans showed spread to her liver and we were advised that this was an extremely aggressive form of breast cancer with limited options for treatment. In January 2015 she was given a prognosis of a possible life span of 6 months - she died in May aged just 32.

All through her treatment Jo was amazing, very positive and proactive in researching her condition. She blogged continuously with dark humour and was actively involved with the YBCN online. She found support and gave support to others all through her treatment and raised funds for breast cancer research through her Scull-pulp-ture website. She and Rosie’s stories were very similar - with a similar diagnosis and treatment throughout and I know that Jo was so concerned for Rosie - she cared very much for her and her other close friends on the YBCN website. She was devastated that Rosie had children who would be losing their mother and constantly thought of others who were going through the same ordeal.

Before she was diagnosed with breast cancer Jo was always interested in undertaking a PhD, she wasn't sure what her subject would be but she was adamant that it would happen at some stage. She loved her job and her work colleagues at Brighton Uni and I know for sure that if she was still here that would be the next step in her education. After being diagnosed with breast cancer she was planning that her prospective PhD would be cancer related in some form of which she was unsure – however she didn't get the chance to see this through.

Poignantly her final piece for her MA which she completed with a Distinction in November 2013 was a thought provoking project about what happens to peoples social media sites and information after they die called Final Status. It was an incredible and moving installation where she had recorded friends and families thoughts and projected them into monitors built into a shrine which she constructed herself. When visitors entered the darkened room, motion sensors triggered rotating motors, sound and vision. So much work and thought had gone into the production of her exhibit - it was breathtaking and the following was her summary of her work:

"Final Status was an interactive digital art installation that I created in the summer of 2013. There are now over 30 million Facebook profiles of the deceased (Huffington Post, 2012). Some of these profiles are made into memorial pages, some are deactivated by family who have access to the deceased login details, but many remain untouched and still active to friends and the public (depending on privacy settings).

I created Final Status to highlight the existence of such profiles, the concept that although a person is no longer with us, everything they have ever shared on social networks still exists on the internet up until that very last thing they posted. Their last final status no matter how trivial, positive or negative it may have been, becomes a poignant statement existing indefinitely in a public space for many to see.

If you had a choice, what would you want your final status to be?”

Unfortunately Jo became too unwell by May to write her final status post but I know that it would have been defiant, bolshie, unique and as always giving thought to all her friends first rather than herself. She was beyond amazing and the world has lost a unique, entertaining and incredible human being – I will miss her every second of every day for the rest of my life.

Her mantra was: Concentrate on the present, don't dwell on the past, don't worry about the future, live for the now, live for the now.

I'm desperately trying to do this but not succeeding very well – she was a better woman than I will ever be!

Breast cancer awareness month: Always living for today

Author: Sianny M

Hi, I am 42 years young with secondary breast cancer. I am usually fit and happily married with three amazing young children.

Initially diagnosed at 38 with my youngest was only 18 months old. 

Treatment: Mastectomy, chemo and 12 months of hormone injections first time around and more chemo, stereo tactic radio therapy and ongoing injections now... 

To be honest it's like a roller coaster.. Disbelief that this could happen, in shock that you can't feel a thing, sadness that I'm not going to be here for my children growing up and will be the cause of so much pain for my family and friends, not in control of my body / life / future (what future)...

Then I stop myself and remind me about today and my family...they are the important things and today is all that matters x

Always living for today 💕

Breast cancer awareness month: Cancerversary

Author: Harriet

This post is from Harriet's blog "Breathless Bird" at https://harryhatd.wordpress.com/.

So here I am. I have been meaning to do this blog malarkey for a while. In true Harriet fashion I have thrown myself headlong into writing this without reading the instructions, so if anyone but me ever gets to read this it’ll be a miracle.

Tomorrow it will be a year since I went for a routine chest X-ray after feeling a bit under the weather with a horrible, sick making pain in my left shoulder and a bit of a sharp pain in my chest. It’s fair to say things went t*ts up from the moment I had a message from the G.P that same day asking me to call him ASAP. Those of you reading who have experienced serious illness will know that this type of message is never going to lead to a happy ending. A friend of mine on my support group describes perfectly that when she gets bad news it is always accompanied with ‘a good dose of side head’. Well, you could virtually hear the damn side head in the message.

Basically, a rather large tumour on my left lung had taken its opportunity to say hi. We have no idea how long it had been there, but probably a long time. Contrary to popular belief, following treatment for primary breast cancer, you do not have follow up scans unless you present with symptoms. I was 13 years post treatment for primary breast cancer and until this point had been really well.

Scans revealed that my visitor had taken up residence in both the upper and lower lobes of my left lung. A very keen eyed Radiologist also spotted something (else) untoward on the first CT and after a lot of discussion, many needles being inserted into my neck, one massive needle going into my chest and into my lung (awake and unsedated – brave soldier points please) and pathologists doing their stuff, it was agreed that I had 2 separate cancers: oestrogen receptive metastatic breast cancer (my lady hormones are murderers) and papillary thyroid cancer.

When you live in the cancer world there is virtually a whole other language that you become aware of. Two words I have learned are ‘cancerversary’, when you acknowledge the anniversary of diagnosis, end of treatment or whatever you want to mark, and ‘scanxiety’ which occurs as you await scan results…something that could easily replace many forms of torture.

So, on my cancerversary I am trying to get my head round the last year. And I can’t. I don’t think I ever will. The harsh truth of my situation is that I have been diagnosed with an incurable disease that will shorten my life. I have been ridiculously lucky for someone with secondary cancer, in that I have been able to have surgical intervention to remove the cancer we know is there, but it is expected I will relapse. We desperately hope that will be a very long time away, but we also know that it might not be. Our lives are lived from scan to scan, experiencing…..you guessed it…scanxiety!

It is utterly impossible to fully articulate the past year. I have thus far tried to do it to a certain extent in a number of Facebook posts to which I have always had wonderful supportive responses. I find that it helps hugely to talk about my cancer, and frequently make massively inappropriate jokes about it (I’m allowed see). I could write a huge amount each day about how I feel, and believe me somedays it would be VERY interesting reading. But in summary, the last year has seen the following that is quantifiable:

6 chest X-rays
5 CT scans
1 PET scan (a specialist scan on which active cancer ‘lights up’)
1 MRI scan, during which I couldn’t stop thinking about Madonna falling offstage at the Brits, which isn’t good when you can’t smile or laugh
1 PICC line in my arm for 4 months
6 courses of chemotherapy
1 full head of hair disappearing
40 odd headscarves (became an obsession)
144 pre and post chemo steroids
1 beachball face and steroid related bloating
18 days throughout chemo of acting like a Yorkshire terrier on speed due to the steroids
2 weeks after each chemo wanting to rip my own skin off
12 bottles of tonic water as normal water was revolting during chemo
7 nights in 3 different hospitals
2 general anaesthetics
1 lung removed (well, they left me a teeny bit)
1 thyroid removed
28 lymph nodes removed from the left side of my neck
14 nodes with thyroid cancer in them
1 node with breast cancer in it (damn you sneaky bugger)
2 post surgery drains
2 catheters (sorry)
1 morphine pump
1 gangsta neck scar
2 suspected blood clots
2 A and E visits
1 personal care plan produced with GP including a ‘do you wish to be resuscitated’ conversation
1 chest infection
5 hormone implant injections and 5 months of hormone tablets, both of which I will be on forever or until they stop working for me as a form of treatment
2 painful feet, ankles and legs due to hormone treatment, resulting in reduced mobility
1 paralysed vocal chord (now finally on the mend)
12 reflexology treatments at my cancer centre
5 psychology appointments at my cancer centre
1 TV Appearance
1 London Marathon (obviously not me)
£8,500 raised for Maggie’s Centres by runners of said marathon
365 days of unrelenting thinking about cancer.

What can’t be demonstrated using numbers, or even understood, is:

How breathtakingly cruel life seems at times
How it feels as a mother to find out you have incurable cancer
How it feels as a husband to be told your wife and mother of your child has incurable cancer
How it feels as a parent to hear that your child has incurable cancer
How it feels as a brother to be told your sister has incurable cancer
How it feels as a friend to hear this terrible news.

The emotional impact that a diagnosis of this nature has upon a family.

That my body and mind are beyond exhausted.

But what we also know is that:

I receive world class treatment from the National Health Service; York and Leeds Hospitals and especially Harrogate Hospital. The people looking after me are nothing short of incredible in the way they care. I am ridiculously lucky.

I have an absolutely brilliant oncologist who listens to me but also tells me things straight. He is patient and kind and we are so grateful for this.

I have a wonderful employer.

Kindness knows no bounds. We are surprised daily with gestures and messages of support and love.

My physical and virtual support networks are incredible. I feel so loved family and friends and also by a group of women who have also been diagnosed with incurable breast cancer, and can say ‘me too’.

The Scandal box set is addictive.

We REALLY need a holiday.

My husband is the best. He really is.

I plan on having many many more cancerversaries.

Breast cancer awareness month: Living together but no longer in a relationship

Author: Heather L
Next February, me and cancer will mark our ten year anniversary. I feel ok to admit that the relationship has been drifting and we’re not thinking about each other all the time like we used to. But the cancer announced that it was metastatic seven years ago, meaning that it’s never going to completely move out. Yes we’re living in the same house filled with memories that we’ve collected together over the past ten years, but those memories are less important to me now than they used to be.

When cancer first moved in, me and it - ‘us’ - was all I could think about. Then two years later, after we had been through so much together, I thought about moving on. It was a struggle, as when you live together you start to absorb each other’s moods. Cancer was defined by fear so I became defined by fear. Then we tried to break up, but it didn’t happen. A crisis point in our relationship meant we needed to work through a few things in order to move forward. There was only one thing for it. We would need to have more treatment together; A LOT more treatment together. That was a hard stage in our relationship, but both me and cancer are less angry for it. In fact cancer now stays at home most of the time and sits around in its dressing gown watching daytime TV, barely nodding to acknowledge me even when we’re in the same room.

What I’m really saying is that we’ve come to the point where I need to feel brave and leave cancer to sit on the sofa all day preoccupied by its friends anastrazole, zoladex and ibandronic acid while I go out and, dare I even whisper it, chase some non-cancer related ambitions. I’ve spent so much time on my relationship with cancer that I now want other things. But I’ve discovered that past relationships can sometimes make establishing new ones difficult. At what stage do I mention cancer and what we went through together? How will someone new feel if I tell them that I’m still co-habiting with my ex? But cancer and I, we barely talk, so co-habiting with your ex is surely socially acceptable in this day and age. Right?

Breast cancer awareness month: Cancer car crash

Author: Emma


I'm 16 months on from my initial secondary breast cancer diagnosis and as I sit here, pondering over what to write, I can't help but look back at my life since cancer and think what a car crash it has been. 

In the months leading up to my illness I was happy. I'd found a lump at the end of 2013 but had it checked and got the all clear. We really enjoyed that Christmas!! 

My life was going in the right direction. My partner of 3 years and I had got engaged, we'd talked about having a baby - a brother or sister for my brood of three from a previous relationship. He is in the army and was deployed to Afghanistan at the end of January 2014. He was on a 6 month tour.

I found another lump, underneath the original one, and went back to the breast clinic at the end of April to get it checked. I didn't think anymore of it. 

Then on the 2nd of May I was rushed into hospital. I'd started haemorrhaging at home.
It was a Friday morning and I was getting the children ready for school. I have never been so scared. I thought I was dying. I called an ambulance and my mum and that was the start of 3 weeks in hospital. Later that evening I was told I had breast cancer. WTF!! 

I had numerous CT and MRI scans over the weekend. I was still bleeding heavily and losing clots the size of mini footballs. I was alone and scared. I missed the kids. Then, out of the blue on the Monday, my partner walked in. He'd been flown home on special licence. I instantly felt safe. He was allowed to stay at the hospital with me - we had a private room. I had lots of visitors and the staff at the hospital became great friends. 

Then we received another blow on the Wednesday. I was told the cancer had broken away and got into my bones. I had secondary breast cancer. The kind you can't get rid of. The kind that people call terminal. I'm not sure where it came from but I found an inner strength and I was ready for the fight. I was not, in any circumstances, leaving my children or my loved ones any time soon. 

My partner and I set about planning our wedding. We arranged everything from our hospital room and got married 11 weeks later in Windsor. It was the best day off my life.
While in hospital I had 12 blood transfusions and 3 platelet ones. The reason I was bleeding so heavily is because the cancer was attacking my platelets - they're what make the blood clot. 

I was discharged after 3 weeks and started chemo just a week later. I had 18 weekly sessions and ended up back in hospital twice due to complications. 

I lost my hair, my eyebrows and my eyelashes. 


I also lost my new husband. 

My diagnosis proved too much for him. I was holding all this shit together, trying to be as normal as possible for the children but I wasn't getting any support from him. He went out for hours in the evenings while I was laid up on the sofa having just had chemo. He either withdrew into himself or was angry at the world. He took the not being able to have children together really badly. He said some nasty things. I had no more to give so I decided to end the marriage. I was doing everything for myself and the kids anyway and as horrible as it sounds, it was like having one less child to deal with. 


So that's why I refer to the past 16 months as a car crash. I was diagnosed with secondary breast cancer at the age of 35. It stole my chances of being a mum again. It completely trashed my marriage. And still now, it feels like I'm walking through the wreckage. My 16 year old daughter sees what cancer is doing to me - the days I'm shattered and can't walk up the stairs. I try to hide everything from her but she's not stupid. I get in the shower just to have a good cry. She has struggled recently with her mood and has had some counselling to try and help. I feel guilty that our lives have turned into this nightmare. I'd give anything to be normal again. 


By Emma x

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Write for the blog! This blog is one of a series being shared on the Young Women's Breast Cancer Blog UK during October, breast cancer awareness month, but the blog is here year round. If you are a young woman in the UK who has/had a breast cancer diagnosis and you would like to be a part of this blog, please have a read of the additional information here.

Check your breasts

Breast cancer can happen to any of us - regardless of age. Information about how to check your breasts can be found on the Coppafeel and Breast Cancer Now websites.

Further information and support:

Younger Breast Cancer Network UK - an online chat and support group for women under the age of 45 in the UK who have had a breast cancer diagnosis.

Baldly Beautiful - a YouTube channel with make up demonstrations, created by Mac makeup artist Andrea Pellegrini who went through chemo herself in 2014.

Take A Moment - This is a group for women (all ages) who have/had breast cancer who want to explore, reflect on and express their feelings and experiences through photography. This is a link to the public page - to join the group, send them a message.

The Osborne Trust - Providing children of parents with cancer the opportunity to access time out recreational activities whilst their parents undergo operations and treatments

Jen's Friends - Free heart-shaped pillows for women (and men) with Breast Cancer. Designed to provide comfort and protection after a Mastectomy operation.
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Me and secondary breast cancer - 7 years on

Author: Heather L

Today is the day.

Seven years since Mark and I sat in that consulting room at the hospital that is still all too familiar and was told that my breast cancer had spread to my liver and bones.

Seven years later I have forgotten what it's like to live without cancer.

Me and the cancer, it's like we've discovered the art of being in the same room at a party while studiously ignoring each other, although I don't think either of us can help the odd furtive glance in the other's direction every once in a while. I guess what I'm trying to say in a roundabout way is that while the shitty days have been beyond shitty, the good days mean so much more because of it, and I've discovered an equilibrium between those two extremes: I have found a way to live with cancer and be ok.

Seven years ago today I was pushed to the lowest ebb possible and found a way to become strong again because I didn't have a choice. But I was lucky that all the operations, IV chemotherapy and countless pills I have had access to on the NHS over the past 7 years have put me into remission.

Its not ok to take vital cancer drugs away from people when they're at their lowest most vulnerable point if there's the chance that drug will allow them to become strong again, whether that's for seven months, or seven years. Please, please, please don't think that the announced cuts to the cancer drugs fund are ok, because the NHS simply doesn't have the money to pay exorbitant prices set by the pharmaceutical companies. Its not about delaying the inevitability of death from cancer. Its about allowing cancer patients at their lowest point, like I was seven years ago, to become strong again. The government and the NHS need to find a solution where people with cancer aren't left in fear, not knowing which drugs will be available to treat them. And that's on top of trying to cope with living with cancer! I'm not writing this to ask you to act by signing a petition or donating money. If you've read the news about the cuts and thought, "well those hard choices need to be made because our NHS cant fund everything", I simply want to try and change your mind.

 

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(Note from Sarah: This is a news article from 4 September 2015 which gives some context to the last part of Heather's post. Cancer Drugs Fund cuts 23 treatments)

Facing Cancer in the Mirror

Author: Heather L


Facing Cancer in the Mirror


My body is a constellation of stars
Each one a different lifetime,
How things were, how they are, how they still might be
Burning white hot, but also blazing with the fire of existence
Sometimes I can’t breathe
Overwhelmed by the magnitude of the starry sky
But for today, and maybe tomorrow too
It is a map to find my way out of the darkness.

Accepting help, rejecting scepticism

I am kicking off the Young Women's Breast Cancer Blog UK with a selection of posts from existing blogs of young women with breast cancer, to provide examples of the range of things you can write about.

This post is from the fantastic blog Fighting Genghis.
https://fightinggenghis.wordpress.com/2015/01/20/accepting-help-rejecting-scepticism/


I’ve never been all that good at accepting help. My dad delights in frequently retelling anyone he can (hi Dad – I know you’ll be reading this!) that, aged 2, I got out of my buggy, went round behind it and insisted “Roro push”. Even at that tender age, I wanted to be doing the do, not being helped.

One of the things that my current situation is teaching me is to unlearn that behavioural trait. It ain’t easy. It feels like it’s hard wired. I don’t ask for or accept help. I give help. Until the day that Genghis arrived. Now I have to unlearn and relearn. So many people are now involved in helping me. Number 1 is my darling and wonderful husband. For the first 10 years of our marriage (almost) it felt like we helped each other and accepted each other’s help more or less evenly. There were times when that balance swung one way or the other, but overall we were on an even keel. A partnership. Now I feel that this has been rewritten. Like in our ketubah (our Jewish marriage contract), Elliot does all the doing and I silently accept. It is taking me time to come to terms with this, for all sorts of reasons. I am not the person my husband married and that makes me sad for him. I am not the strong woman he shared so many experiences with. I am leaning heavily on him, and that is no small burden. And when he reads this he will tell me that it isn’t a burden and that he loves me, but I know that things are different now. Not worse, not better, but different.

Help is flooding in from other quarters too and, again, I am learning to accept it. My darling sister in law became our temporary nanny for a fortnight – I accepted her offer without a quibble. My team at work are picking up my slack and again I accept without demurring. The lovely lady who has found spare time to give me reflexology. The prayers from all over the world. Family and friends are pulling together to offer assistance in all sorts of ways. It is a true outpouring of love and one that I am not able to resist.

And with this seismic shift in my attitude to self-sufficiency has come another change. Always the sceptic, I am now giving myself permission to explore those things that my rational brain has hitherto rejected. Religion. Acupuncture. Healing. Counselling. And so on. Not everything helps. Some things remain difficult for me to accept. Other things start to seem less unbelievable. Don’t get me wrong. There is still a loud voice in my brain shouting “Bah humbug”. But that voice is finding competition for the first time in the quieter, calmer but equally resolute voice which says “Maybe”. Maybe this will help. Maybe this is working. Maybe there is something to this. Maybe it is not all within our control. Maybe there is something stronger, more mysterious, more powerful that can help. Of course, I need the doctors and the drugs. But maybe – just maybe – there are some other pieces to this puzzle.

And then I start to see how the two factors are working together. By allowing myself to accept help and by realising that I am not a fortress, I am also realising that help comes in all shapes and sizes. It is not just the obvious things. It may not always be tangible. But my mind is now open to accepting help in any form. I will give anything a go. For all my self confidence and feeling that I know best, I now know that I don’t. So I am giving myself over to the doctors and the nurses and the pharmacists and the family members and the friends and the rabbi and the prayers and the healers and the complementary practitioners and I am asking them all to help me, please.

Dating with disease, swipe left or right?

I am kicking off the Young Women's Breast Cancer Blog UK with a selection of posts from existing blogs of young women with breast cancer, to provide examples of the range of things you can write about.

This post is from the fantastic blog The Malignant Ginger.
http://www.themalignantginger.co.uk/dating-with-disease-swipe-left-or-right/

At the beginning of this year when I thought I was cancer free, I decided it was time to time to bag myself a man, or at least have some fun and go on a few dates. I haven’t had a serious relationship for well over a year and no amount of mingling at pubs, gigs etc was proving fruitful on the man front so I decided to join the rather dubious world of online dating. I hear all the kids are doing it nowadays.
 
It also has been a hot topic as of late within the online communities for young people living with cancer that I belong to. Is it okay to actively seek a relationship even though you know that you’re seriously ill and may not be around for long?
 
I have dished out the same advice on a few occasions. In my opinion, I see my secondary breast cancer diagnosis the same as living with a health condition. People with diabetes, heart disease, cystic fibrosis, MS, ME, and all manner of other health conditions manage to date and find partners, so why shouldn’t I? I don’t consider having cancer as part of my personalty or a personal attribute so why should I mention it on my online dating profile? I do have photos of myself with a shaved head and wearing various wigs and have found it nothing but a positive thing, plus it provides a topic for conversation!
 
If I can get past the cramp in my thumb from swiping left (i.e. NO), I have made a personal rule that if I arrange to meet up with any potential suitors, I will tell them about my diagnosis. This has happened a few times already and it didn’t put any of them off. In fact, they had some lovely complimentary and sensitive things to say about my honesty. It kind of restored my faith in huMANity.
 
I don’t expect to find the love of my life through online dating, all I want is a little fun and some maybe some flirting and candlelit footsy. Despite having a buzz cut and a few scars I still think I’m a pretty hot catch. So in the words of that well known song by Sheryl Crow “all I wanna do is have a little fun before I die” and I will NOT let cancer take that away from me.
 
So if anyone reading this has any single brothers, friends, workmates, fathers and grandfathers please pass them my contact details. Oh, and they have to be tall or they risk looking like a hobbit next to me.
 
Men, please form an orderly queue.