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. 

As the new year approaches

Author: Tamsin

As 2016 approaches, everyone’s eyes are firmly on the new year’s horizon - the sparkling glimmer of an exciting future and the limitless possibilities that lie ahead. It’s a chance to move on, to forget past mistakes and hurts - to close one chapter in our lives and start another. The new page is tantalisingly fresh, not yet marred by typos, blots or smudges. I don’t need to buy a magazine or newspaper in January to know that the pages will be filled with advice on this year’s latest diet and exercise regimens, with their promises of energy, vitality and a long, healthy life; as though food and fitness are talismans which ward of the ‘evils’ of illness, disease and ageing. 

But 2015 has been a kind year to me - it’s the first year since my first diagnosis of cancer that I have enjoyed stability in my health. And it’s been amazing! I am filled with gratitude to be alive, something of a small miracle considering I have had two bouts of cancer treatment over more than two years, including 11 months of chemotherapy for an aggressive breast cancer, 6 ½ weeks of radiotherapy, more surgeries than I can remember, although three stays in a high dependency unit were memorable for all the wrong reasons! As I sit here writing, I realise that this will be the first new year since 2009 when there hasn’t been treatment or a major decision - about preventative or corrective surgery - ahead of me, with all the accompanying fear and uncertainty. 

It’s been a year of milestones, but not ones that are easy to share - it’s been the year that I finally started buying full-size bottles of shampoo (having gone through hair-loss and re-growth twice, hair-care has been a never-ending series of experiments), got to grips with my new, changed, half-breasted body with its lymphodema and early menopause symptoms. It’s been the year that I began enjoying being around babies and toddlers (even baby George) instead of nursing the grief of my lost fertility and where I’ve felt I could trust myself to cry openly at my daughter’s school concerts instead of sobbing silently into my pillow in the middle of the night.

One of the ways I’ve coped with cancer has been to stop looking too far ahead - ‘the future’ has become something to fear; I am always on guard, my defences at the ready in case I need to deal with another set-back. But as much as cancer has taken from me, I have taken something from cancer too - I’ve learned that I am loved, that I am resilient; that I am lucky (as well as unlucky). These were the easy lessons, what I call ‘my silver-linings.’ But, there were bitter lessons too, for instance the discovery that ‘patient’ means ‘the ability to accept suffering without becoming upset’ has been an experience which has taken me to the outer limits of my soul. As Thomas Wolfe wrote from his hospital bed in 1938 - ‘I’ve made a long voyage and been to a strange country, and I’ve seen the dark man very close; and I don’t think I was too much afraid of him, but so much of mortality still clings to me.’

Most of us have been confronted with our mortality at one time or another - maybe you’ve been in a near-miss while crossing the road, or driving your car. You are really quite shaken and you tell your friends, maybe your partner, who give you a hug, make you a cup of tea. Maybe your boss sends you home to recover. Maybe that evening, you find yourself thinking ‘what the hell, I’m buying that expensive bag’, maybe you decide to go on that trip of a life-time, or maybe you just want to sit quietly and be thankful you survived. This feeling might stay with you for a few days or weeks, you might be more forgiving of the irritations we all face in our daily lives for a while, but we move on and forget.

For me, living with a cancer diagnosis - without being told I am cured and living with high risk - is a bit like knowing that out there is a car waiting for me. It’s somewhere on the road ahead. I don’t know whether or when it might race towards me; I wonder whether I will see it coming or whether it will come without warning. If I am lucky, it will miss me. I hope. I really hope. Living with breast cancer has meant passing through a doorway into what has felt like a parallel world where my awareness of what it truly means to be mortal is brought into sharp focus. I am afraid of the long voyage and the strange country but I have learnt to accept that my fears are just a small part of the gap between the person I was and the person I am now. Fear isn’t a constant anymore and though it ebbs and flows like the tide, it reminds me that I am a ‘human being.’ So, I won’t be disheartened if I find I have abandoned many of my goals before the end of the month. Instead I will show myself the same compassion I would a beloved friend. I want to try to learn from my mistakes and to be content with my small and faltering steps forwards. After all, New Year’s Day may be a special day, but it’s also only one day amongst 366 other days this year (it’s a leap year) and each one is a new day, a new year, a new beginning and a chance to start anew.

I don't believe

Author: Eve


Today was Boxing Day , two years ago I celebrated it with a pint or two of FEC-T, for those of you reading who don't know what this is, in a nutshell it's a pink chemo drug that beats the complete shit out of you..... so much so even typing the words brings an involuntary retch to my throat.

Fast forward two years on, the festive season is ending and I suppose we all reflect, I know I have and I have had a few epiphanies....

My babies are growing fast, I suspect this is the last year Santa will be left mince pies and it makes me sad, they are starting to have their own opinions, their own thoughts and believe in their own way of thinking which as a mother of girls is a tough one. I don't believe in Santa is the one line I won't want to hear next year but I hope with all my heart I will be here to hear it.

The mothers from my group who never made it are constantly in my thoughts. Their babies are 'celebrating' Christmas without their mumma. My heart aches with sadness when I think of them all. A cruel roll of a dice that made them unlucky. There are at least 9 children I know who have lost their mum to breast cancer. To know you are leaving your children must be the worst pain imaginable.

And so I have to replace those thoughts, put something in their place that means I don't burst into tears because my eldest rolls her eyes at Santa, I am there to see it, to feel it, to breathe it in and to wrap my arms around her still, which despite her protests at my display of over excited Elf emotion I do.

Having girls you worry about weather they will go through what you have? I have told them to have mastectomies, I figure prevention is the biggest weapon I have and boy am I going to bloody use it for them.

Back to my epiphanies... brought on by the emotions of Christmas and the cruel blows delivered to the online ladies going through treatment.....

Little girls are fed bull shit, I have decided, and I have also decided that I for one will not be filling my daughters heads with such bollocks.... The following apply and I will write it in a book if they want me to.

I do not believe in the following .....

Things happen for a reason
(What a load of crap! Like you are meant to get illness and sorrow)

Just wait, karma will deliver
(Again, bull steaming shit, no it doesn't, no one gets what they deserve,  the rich get richer, the bad prosper and the good get taken advantage of and the sweetest, gentlest people have some terrible 'karma' delivered)

You are only given what you can handle
(Load of ...... You handle what you are given and put your gloves on and punch, you didn't receive it because you were stronger than Thelma the class shy girl)

Good things come to those that wait
(ha ha, yeah right, excuse me while I run in front of you cus if I don't get it for myself, it just ain't gunna happen, sit there if you want but I'm off )

I could go on but you probably think I am a bitter old hag, I know I am not. As a mother of girls I will bring them up with an inner strength, a mental strength that gives them power, power to make their bubble happy, to find true friendships and real love, the type that is not contaminated with fairy tale cliches that somehow justify suffering and pain and other people treating them like doormats. The only way to do this is to lead by example, to show them , for all the ladies that desperately wanted to but can't, I will .

And Santa will still get his mince pie even if my girls laugh at me, just because I can.
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