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.

Breast cancer awareness month: A Moon Transiting Through Cancer (part 2 of 2)

Author: A Moon
Allie also writes at: https://alliemoonjourney.wordpress.com/

Cancer Fog 

The usual me, although a little ditsy at times, is usually a very together person – organised, driven, determined, detail-focused and on top of things. From the point of being diagnosed, a piece of that person has disappeared a little. I’m unable to take in or store lots of information – I have to have things explained to me more than once, and even then it stays there only temporarily. It could be down to “chemo brain”, but as I had it from the point of diagnosis I suspect not. I’m only able to pick up on certain things or key words as my mind is generally filled with 101 different questions at any point in time about varying things and worries to do with cancer and treatment.

Chemotherapy and Hair Loss 

The way chemotherapy is portrayed in the media does not always accurately reflect how it is in reality. Whilst I know many people face a terrible experience of it, I really thought I’d be completely bed-ridden or have my head down the loo being constantly sick all the time. Whilst I am coping with the chemotherapy treatments better than I’d imagined I have found it very tough emotionally and psychologically. Out of the side effects I’ve had, the worst has been losing my hair. This is a difficult process for anyone of any age or gender, but particularly more so for women. My hair is a part of who I am, how I present myself to world and what makes me feel feminine. When it started to come out I wanted to hide away from the world, I didn’t want to go anywhere or see anyone and didn’t want them to see me. Hair loss can have such a negative impact on your self-confidence and body image, leading to introversion, depression, feelings of unattractiveness and at times it's been hard to cope functioning normally on a day-to-day basis.

I had tried as hard as I could to mentally prepare myself for losing my hair, but in reality nothing can really prepare you for how it feels when it starts to come out. Two weeks after I'd had my first chemo treatment my scalp started to feel a little tingly and a bit itchy. In the days that followed I noticed quite a few strands coming out and then almost a week after when I washed my hair, absolutely loads started to come out. I burst into tears and couldn't stop crying. I wanted to be as strong and as positive as I could be trying to deal with this whole experience. I think when I started to lose my hair all the feelings and emotions I'd had inside about having cancer all came bubbling up to the surface and out like molten lava from a volcano. I became even more aware of my situation and started to deal with the emotions perhaps I had previously been numb to. I felt like I was not only grieving for my hair, but also grieving for the person who I used to be. The reality of the start of this process was much harder than I ever imagined. As silly as it sounds, having lived with having cancer and all the low points it has encompassed over the last five months, I think it really hit me that I was officially a cancer patient – soon to be balding – no disguising the fact now. I felt down at the bottom low.

Loving Kindness, Support, Positivity and Gratitude 

The path I've been walking over the last few months has been fraught with worry, fear, stress, pain, anxiety and sheer fright. But whilst the path has been a hard one to travel, it has shined a light on the many special, down right amazing and kind and caring people who I'm lucky to have in my life.

Without my husband by my side these last few months this would definitely have been an even more horrid experience. He has been my absolute rock and guardian angel – caring for me, holding me in his arms, comforting me in my darkest hours and holding my hand every step of the way. Whilst we had a very happy and strong relationship before I was diagnosed, I certainly feel it's brought us even closer together. My family and friends have also been amazing – no words can describe how grateful I am for the care, thought and support they’ve shown me. My employers have been incredibly supportive throughout all of this and I can’t thank them enough for their kindness and generosity. I feel truly blessed to have such kind, caring and supportive friends, family and colleagues.

A very dear friend moved me to tears when she surprised me with the fact that she’d been fundraising amongst my friends, family and work colleagues. This was so I could choose whichever wig I felt most comfortable wearing without having to worry about how much it would cost. Their very kind donations have enabled me to leave my house and try to brave the world in what is this ‘”new normal” for me. They’ve all helped in making the huge mountain I’m climbing that little bit easier, ultimately helping helped me stick two fingers up to this dastardly disease. As well as many of the more insignificant happenings of life that suck up our energy, I certainly won’t ever be complaining about bad hair days in the future!

I realise that I’m fortunate to not have had a worse diagnosis, and that is due to the fact that I found the lump early enough that it hadn’t spread elsewhere in my body. For everyone reading this blog, please, please make sure you regularly check your breasts so you know what normal feels like. If you feel something that is not right - don’t sit and wait on it – act now.





 

Breast cancer awareness month: A positive outcome

Author: Michaela


Everyone tells you to 'be positive' and' everything will be just fine'. I knew from the moment I found my lump that it wouldn't be fine; I think you just know.

But here's the thing, sometimes you do here a story about someone who got lucky when things could have been so much worse, and that is me. I hope my story can give someone in the early stages of this horrible journey some hope.

It was Mother's Day weekend and I'd been out with my mum and 2 sisters for ice cream and a weepy film. I got home to my husband baking cakes for me for Mother's Day and was told to wait in the lounge and DO NOT enter the kitchen! Love him! So I sat and caught up with the Facebook world. A work colleague who had recently finished her breast cancer treatment had posted something about checking your breasts. I NEVER check mine- because they are just lumpy and how could you possibly tell? I was horrified to find a very obvious lump which I cannot believe I hadn't noticed before.

The days that followed were just an emotional draining whirlwind. I was lucky to be seen by my GP and then the consultant within days. An ultrasound, core biopsy and mammogram were done and then an agonising 3 week wait for the results. In those 3 weeks I prepared myself for the worst. I was going to die and leave my two beautiful children without their Mum. My parents were going to lose their eldest daughter. Could my husband cope without me? Those 3 weeks of uncertainty were, without doubt, the worst 3 weeks of my life.

The results were as expected. I heard the words 'you have breast cancer' and the rest was a blur. What I didn't hear were the very positive comments that she made about how small the cancer looked, how the lymph nodes appeared to be clear. I had surgery 4 days later to have the lump removed and a sentinel node biopsy.

I felt devastated after the surgery. My lump was high up almost on my chest right on the edge of the breast. The scar I am left with is visible and if I'm honest, I hate it. I am not at a stage yet where I wear it as a battle scar to be proud of. Selfishly, I miss my nice shaped boobs and I miss being able to wear clothes to show them off. I don't think I will ever quite get over that part. Please don't judge me for that, I can't help it. I was most scared about having to have Chemo. I didn't want to lose my hair. I realise how pathetic and self aware I am, it's been a lesson in life that's for sure.

It's interesting how you learn so much about family and friendships at a time like this. I saw the pain in my husbands eyes and it made me understand how much he loved me. That had been something I'd doubted at times, but it was suddenly so real and clear. Seeing your Mum cry and say that she wishes she could have the Cancer instead of her little girl. That broke my heart- but I knew she meant every word. My Dad was a mess, he was so scared that he would lose me. And friends, interesting this. Some people you have been close to your whole life don't seem to know what to say, so they just don't say anything. That was very hard. Some friends, and work colleagues literally stopped speaking to me at all, instead talking about me to my husband. I know it's a hard thing to talk about, but from my experience, I know that I will always put my own awkwardness aside and make sure I speak to people. My family were amazing throughout; offering constant emotional support, practical help with childcare and cooking meals for us. A certain few friends now have an extra special place in my heart because of how they helped us through.

My results following surgery were as great as they could possibly be. A grade 2 cancer, only 18mm, all out with no spreading to the lymph nodes. The cancer was gone and best of all I did not need to have chemotherapy. Just 4 weeks of radiotherapy and 10 years of Tamoxifen. The radiotherapy was dull and a bit of a pain to get there every day but for me it was completely painless and I coped well throughout. Work were extremely flexible which helped too.

And here I am 5 months on, life seemingly back to normal, the nightmare of breast cancer hopefully a distant memory. Except it isn't for me, the reality is that I think about it every single day, that I am constantly scared I will get it again and not be so lucky next time. Everyone else around me has moved on and no one knows the mess my head is in. I've found I can't really talk to my husband about it as he always wanted to offer a solution, or tell me that I am being irrational. Which I know I am, but I just need someone to let me get the words out. I've decided to find out about some professional counselling, that way I can get the thoughts out of my head and friends and family can continue to move on and not feel I am being negative about my experience. I am awaiting the results of genetic testing now and hoping that a can of worms isn't opened from the results. Hopefully it is just me that randomly got this illness.

I know how very, very lucky I have been. Compared to many others I have literally had a brush from this terrible illness and have got away so lightly. Physically I am good, emotionally will take a bit more work! I want women to have hope that sometimes the outcome is ok, that if you find a lump early and act fast, the results are not always the worst.

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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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Friendships

Author: Sarah

I'm still here, please don't fear.
I need a friend someone on whom I can depend.
I don't need much, just fun and such.
The treatment may be rough but I've got that I'm tough.
Please take heed to what I need.
Friendship gives me wings to fly on the day every inch of my body cries.
A coffee, a walk, a call it's enough to help me stand tall.
I won't ask, I won't call, I won't tell you I need you but you can be sure that I do.
Just for now please do the giving, I'm trying my best to just do the living.
If you can't talk about the scary C, well that's fine just come and have a cup of tea.
Who knows the future neither you not I. Imagine how you'd want to feel and please try.

Cancer hasn't killed me, please don't kill our friendship.

Friends - like a spoonful of sugar

Author: Veronica P

 

I made it!

I had my first Chemo session and it seems that I am still in one piece! Better than that I'm doing great! :)

I still feel some obvious trepidation for the coming treatments. I know that harder days will come and it can't always be like this but... So far it's no party but I am surviving ok.

 

To date, the majority of advice given to me has been to grab the good days with both hands and enjoy them. Naturally, I don't normally need to be told twice to have fun ;)

 

This  weekend I travelled to meet uni friends as we had previously arranged and it felt bloody good just to be with friends, chatting nonsense in the sun. I had almost forgotten how rich friendship can feel. How it fills your heart with lightness and joy. I am lucky to have such wonderful and caring people in my lie. I am grateful for how many forms and expressions of friendship that there are between us.
 

I feel full of energy for the coming days, I have been topped up with happy! Take that fears and worries!