True Grit

 

I remember when I first heard the word ‘cancer’ it was in 1964 and I was seven. I was brought up on cowboy films and it was probably from here that I developed my love of horses and an affinity for the underdog, the under-dog being the ‘Injuns’ over the ‘land stealing cowboys’.

John Wayne’s ‘True Grit’ was one of my favourite films and his character, Rooster Cogburn, was one of the few cowboys I liked. He was the unwilling ‘good guy’ and I thought he was funny with his black eye-patch and the way he rode his horse, reins between his teeth and a rifle in each hand. He was a big man and a big star so it came as an equally big shock when he announced that he had cancer. I believe it was John Wayne who first coined the phrase ‘The Big C’, that was his way of demeaning and trivialising the disease.

 JW

I would occasionally hear my parents discussing John Wayne and his cancer but I had no idea what cancer or The Big C was. In fact, I wasn’t actually sure if it was something bad that he had, or something bad that he had done but whatever it was, cancer was something to be avoided.

Years later, I was to get my own Big C. Have you ever heard the phrase “Gripped with fear”?  you see it in novels but I have always thought of it as nothing more than that, ‘a phrase, an expression or saying,’ until that is, a couple of days after my own breast cancer diagnosis. I had already gone through the initial shock and was in that numb place while you are waiting to hear what the next stage will be. Pretending to the world that I was fine,  I had overheard a conversation that had nothing to do with me but they said that word – , cancer. Suddenly and without warning, I was quite literally, ‘Gripped with fear.’  it felt like a big iron belt had been strapped to my torso, tightening around my rib cage until I couldn’t breathe. This unexpected and excruciating pain terrified me, I was convinced that I was about to die, right there, right then. Obviously, it was some kind of panic attack, lasting for just a few minutes but a few minutes of absolute terror. On reflection, it was as ridiculous as it was terrifying. Ridiculous that I had been scared half out of my wits by a word, a simple six-letter word, C -A- N- C- E- R.

So here’s my idea, why don’t we find a new name for ‘It’.  I reckon that if we dilute its name, we can dilute its grasp on our conscious and our lives, at the same time diluting its power.  Years ago, a cancer diagnosis was a death sentence but today, with earlier detection and better care, it is not the killer it once was. Yes, it still takes far too many lives but we can’t allow it to carry the same stigma of old, a stigma that can cripple you with the mere mention of its name.  Being positive and confident can play a huge part in both the mental and physical journey  but if cancer has a head start by stabbing you in the back with its bayonet of fear at the mere mention of its name, then it has already taken the first battle and depleted half your army.

Some people have been known to name their tumour, these are good war tactics, ‘be-friend the enemy’. But why not go a step further and make the enemy sound weak and insignificant, making it appear to have no place in our thoughts. Let’s call it ‘Who?’ or ‘What?’ (the question mark would form part of the spelling) A recognised facial expression should also be adopted  when using the word, so whenever it is used in a sentence, the eyebrows should never be lowered but always raised in cheerful surprise and the glimmer of a confident smile must begin to form on the lips of both those using the word and of those hearing it.

Maybe we could call it ‘Blip’ implying  a short break in normal service. Or how about ‘Jester’ as in clown or comedian, a thing to be laughed at and not taken seriously. Because that is what we all need to do, laugh in the face of cancer. Make it shrivel with shame and slink away in ridicule back to its own dark corner.

John Wayne was a big and imposing character, a man not to be messed with. However, let’s not forget that John ‘Duke’ Wayne was actually christened Marion Morrison. Yes, Marion!   Somehow, I don’t think anybody would have been scared of a cowboy called Marion. The big man himself tried to deflect from the word cancer, referring to it instead as the Big C.  We are consistently being equipped with more and better weapons to fight the fight so maybe now  is the time for us to come up with a new and completely different name, one that will show that nasty, devious disease that we are not afraid of it.

Please don’t misunderstand me, I know this is a war that many will not win and there will be those whose battles, though bravely fought, will be futile and it is for these people that we should join forces, take the reins between our teeth and with all guns  blazing, show cancer that we too are made of ‘True Grit’

jw3

Be careful what you wish for!

Breast cancer brought about many questions in my life but one of the biggest was,  did I  want to continue the relationship I had with what I thought were, my two life-long buddies, my breasts. Throughout my life, I have had a shifting relationship with my boobs. While I have always thought them aesthetically pleasing and a great source of comfort for some, they seem to have had their own agenda, committed to causing me embarrassment, discomfort and more recently, enforcing the adage “Be careful what you wish for.”

My adolescence, like many girls, had been spent eagerly waiting for my boobs to grow. I would have swapped my entire Cindy doll wardrobe for a AAA bra and to be allowed to ditch the liberty bodice. When they did begin to make an appearance they paid me back for my impatience by ballooning out of all reasonable proportion.  In today’s age of over inflated lips, faces and boobs, I would have been the envy of many but back in the days when the only over inflated things were your shoulder pads, my boobs were nothing short of an embarrassment. They prevented me from wearing tight tee shirts or close-fitting tops. Men spoke to me with their eyes fixed on my chest, never making eye contact and oblivious to the beer soaking through their suede shoes. Thankfully, my thick Yorkshire skin was able to laugh off the many inappropriate jokes and I gave back as good as I got.

Things are different today, this is the age of ‘The Bigger The Better’ and now would be the time to love my big boobs. Sadly, this was not to be, as it was now that my face began to show the ravages of time, it was now when I really needed those perky little devils with their chapel hat peg nipples to draw attention away from my face but it was now that they decided to begin the inevitable deflation process .

I like to think that I am not a vain person and I’ve never really been that hung up on how I look. Working with horses and spending most of your days in big coats and muddy wellies tends to do that to you.  My philosophy was ‘You are what you are, make the best of it and live!’

Sadly, this carefree attitude began to take a bit of a dip when I hit the big 5 0. My lack of interest in make-up and fashion no longer gave the appearance of a ‘girl with better things to do’ and instead was replaced by the ‘bag lady’ look.  I began to miss my much bemoaned 18-year-old boobs and where previously,  I would never have considered any kind of cosmetic surgery and scoffed at those who did,  I couldn’t help thinking that my beagle eared boobs could do with a bit of medical intervention but as the saying goes, “Be careful what you wish for.”   It was about this time that my boobs decided to develop breast cancer.

I’m one of those annoying people who likes to look for the positive in every situation, “Look on the bright side, cup half full, every cloud..” bla, bla, bla, but finding the positives in being told that your breasts are killing you, was a bit of a stretch even for me.  The tumour in my right breast was quite large and aggressive so the chemo I was to have for the next six months was to be equally aggressive. I was given neo-adjuvant treatment, this means having the chemo first in order to reduce the size of the tumour, which in turn will hopefully mean less invasive surgery.

Six months of chemo gave me plenty of time to think about my breasts, how I felt about them, what they meant to me and of equal importance, what they meant to my husband. Note that I now referred to them as breasts,  I no longer had a friendly, intimate relationship with them where I would fondly refer to them as Dorothy and Delores as I had affectionately christened them, they were now just a body part, an enemy hell-bent on my destruction and from day one I decided I wanted rid of them.

Though I was fully aware that at best I would need a lumpectomy and at worst a mastectomy, I also knew that the only option I would be happy with was a bi-lateral mastectomy. I did not want to wake up every morning worriedly examining the evil mounds, waiting for the dreaded day that another lump had formed. Not that a mastectomy can stop the return of cancer, nor can it take away the demons that haunt your mind but for me, it would reduce the risk of recurrence and dampen the mental stress.

So, this was to be my ‘every cloud’ moment, a mastectomy would reduce my cancer risk and  the re-construction would mean a decent pair of perky boobs belying my age. The only concern I had about this decision was that when I asked for the removal of my un-affected breast, it would be denied on the grounds of no medical need.  On the day of my consultation, I went through a whole argument with them in my head, preparing myself to demand, beg and plead for them to agree to my request. My husband, who was in full agreement with me, had been briefed to argue my case. Sitting across the desk from the kind faced professor, he said he was pleased to tell me that the tumour had shrunk considerably and that he would be performing a breast saving lumpectomy. Gripping the edge of my chair, I took a deep breath and spilled out my preference for a bi-lateral mastectomy. Holding his gaze, I waited for rejection but my argument was as deflated as my breasts, he nodded kindly and said, “If that’s what will make you happy, then that is what you will have.”

I was so relieved and the only down side was that, due to the length of time I would be under anaesthetic and the fact that my body had already gone through a gruelling chemotherapy regime, they refused to do them both at the same time or to do an immediate reconstruction. I was disappointed but this turned out to be best thing they could have said.

In August 2009, without one tear shed, one drop of regret or fear, I said goodbye to my right breast and so began a rather awkward relationship with my left one. I didn’t have much to say, think or feel about it, it was just there. I don’t know if it missed its mate, ‘formerly known as Dolores’, I certainly didn’t so why should the  mound, formerly known as Dorothy,  care.

I had to wear prosthesis to even up my chest and I was always a little conscious that somebody would notice the difference and wonder what the hell was going on under my jumper, especially when the fake one managed to work its way up or down. You know how it is when the wire in your bra works its way through the material and escapes up and out of the top of your blouse, well imagine what it’s like when your fake boob makes a bid for freedom!

When January 2010 came around for my second mastectomy and I could finally say, “Ta Ta Titty, I had no regrets, no fears, no doubts.

After my first operation, I had looked down the front of my gown expecting to see large swathes of mummy like bandaging. Instead, I was quite disgruntled to see nothing more than what could only be described as a large sticking plaster!  I had gone through such extensive surgery I needed dramatic bandaging to show to my friends, I needed visible evidence of my bravery, after all, the bald head just wasn’t cutting it anymore.

So, when I looked inside my gown the second time around, I knew that again there would be nothing more than a sticking plaster to show for my extreme surgery. This time would be different though, this time there would be no lonely breast, this time there would be my disfigured, ugly, unfeminine chest.  With great despondency and trepidation, I took a daring peek inside my ever so flattering hospital gown. Staring down I was momentarily stupefied by what I saw and I was wholly un-prepared for how I felt!

My completely flat chest bore no resemblance to the gruesome freak I had expected to see and I felt no sense of loss or hatred towards my body. I can honestly say that I was thrilled by what I saw and unexpected though it was, I loved the way I felt!  At first, I thought it must be the anaesthetic giving me a medicated high but from that day to this, my feelings have not changed. I am happy with my athletic/boyish shape, I love not having the weight or the pain that can come with your boobs and I really, really love the feeling of unrestricted freedom that it gives me, so much so I could get quite evangelical about it. I don’t expect anybody to understand how I feel, as I know for sure I would not have believed it before I had experienced it. Moreover, I am so relieved that I did not get the immediate re-construction I had so desperately wanted.

If I could change history and not have breast cancer and still have my boobs, be they embarrassingly perky or dismally deflated, I would choose to have them because having them would mean not having had cancer but life without breasts isn’t all that bad and it may not be a silver lining but it’s definitely better than the alternative. And now, while there will be many things in life that I am not happy with and would like to change, I will always have a little inner me, tapping on the back of my mind and shouting “Be careful what you wish for.”

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A Letter to my Body

In support of Breast Cancer awareness month,  I was asked to write a letter to my body.  I thought I might share it with you here. I hope you like it…

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Dear Body,

For the best part of my life, you have served me well. Together we kept fit living an outdoor, country life. Too busy to care about fashion and makeup, we were constantly on the go, looking for new adventures.  We backpacked our way around the world, wind surfed, rode competition horses, drove fast cars, and went scuba diving on the Great Barrier Reef, together we were invincible.

Suddenly, we were 51 but still on the go and still felt great. Even my GP had said that you were the body of someone half our age. So when they told me I had breast cancer and that they were going to poison and debilitate you with chemotherapy and all its side effects, it made no sense to me, it made me sad and I felt that I had let you down.

As if it weren’t bad enough that you were to be pumped full of chemicals, you were also going to lose all those long, thick, dark curls but I can honestly say that none of this  bothered me one iota. If poisoning you and losing our hair was going to save our life, then that was a perfectly acceptable trade-off as far as I was concerned.

That Christmas Eve when I was diagnosed, I promised you that I would have a double mastectomy and re-construction. I wasn’t going to spend my life crippled with fear and I was going to do everything in my power to take care of you and reduce our risk of the cancer returning. Anyway, I thought you would love a pair of perky, new boobs at our age!

Unfortunately, the bi-lateral mastectomy with immediate reconstruction that I had promised you was not on the cards for us. The Doctors said it was too long an operation after all the aggressive chemo they had put you through. We had six months between our mastectomy ops, allowing me plenty of time to think about you, and at no time did I ever reconsider my decision to have reconstruction.  You were going to get the best that I could do for you and the best that the NHS could offer.

The day I woke up from the second mastectomy and bravely peeped down the front of my gown, I was totally and utterly shocked. You were not the grotesque, disfigured, misfit I had expected to see. You were not some weird character you might see hanging out on a Star Trek film set. I saw you so completely differently than I could ever have imagined and to my utter surprise, I liked you.  I didn’t see an embarrassing, disfigured freak, instead I saw a perfectly nice flat chest with nothing weird or ugly about it. The large wounds would soon mend and the scars would quickly fade but what I found truly amazing was, that despite the drains, the stitches and the general soreness, I felt unencumbered,  I felt normal, I felt free!

It’s been three years now and I hope you are happy with my decision, I think you are, I know I am.  My friends, family and particularly my husband, love us, not for what we were, not for what we might have been, but for who we are. I am very happy with you, my new flat chested buddy and together, once again, we are ready to take on the world.

Souper Powers

I have to confess that I have never been much of a cook, one pan recipes are my saviour, the fewer the ingredients the better. That said, I recently made a cheese and onion flan, only two ingredients, cheese and onion, yet I managed to forget the onion! Not that long ago I juggled several pans, treating dinner guests to a wholesome meat and potato pie with veggies followed by apple pie and custard. It would have been a resounding success, if only I had managed to serve the pies in the right order! So, you can see why it came as quite a shock to everyone, especially my husband, when during chemo I suddenly became a brilliant cook!

The first part of my treatment involved a drug called Doxorubicin, a bright red cocktail that a nurse would slowly inject into my sad, tired vein. I was convinced that this stuff must be the blood of Mrs Beeton, as this could be the only explanation as to why I had suddenly become an avid and quite frankly, talented cook. The Doctors had laughed heartily at this, saying it wasn’t a side effect that they had ever come across before. They thought I was kidding but I wasn’t, I really did believe the Doxorubicin was the cause of my new found talent.

This got me to thinking about the side effects of chemo and medicinal drugs in general. Can anyone think of an illness or disease that when treated, does not give you vile or debilitating side effects? Even over the counter pain relief will have a list of possible side effects that sound far worse than any malady you may wish to cure. As if it isn’t it bad enough that we have these horrible conditions to contend with, any treatment that may be available to ease or cure us, always brings with it the most ghastly and nauseating side effects. So, my question is this, “With all the money that goes into drug research and development, why can’t they create drugs with enjoyable side effects?”

 

While I appreciate that it might not be possible to lose the side effects altogether and that we may have to accept them as a ‘necessary evil’, couldn’t they at least be a little bit more pleasant? A talent that you had long wished for could be your side effect. You might become a beautiful singer, a brilliant pianist, an accomplished artist or maybe a ballet dancer, whatever your heart desired. I would have quite liked to be an ice dancer but best of all, I would have loved to have been able to fly. Swooping and soaring like a bird, the cool, fresh air washing over me, liberating me of my pain and the mental demons that cancer forces upon us.

People would no longer give my bald head and grey skin a  sideways glance of sympathy,  instead they would be ducking and cursing as I swept through shopping centres, whizzing round and around in revolving doors, my laughter echoing throughout the mall.

From my own experience of breast cancer, there were many side effects associated with the chemo that I would love to have swapped for something less revolting and embarrassing. Having a super power might be asking too much but how about swapping painful and nauseating for ridiculous and funny?

The most obvious and often the most devastating for some people would have to be the hair loss. I can confirm that it is true that 90% of your body heat escapes through the top of your head. I know this because when I was bald, it was absolutely bloody freezing! So much so, that I had to wear a woolly hat whenever I opened the fridge door!

Having a cancer diagnosis means that not only are you having to face a bleak and uncertain future but you have to do it looking like somebody you don’t recognise. A pasty complexion, and a bald head with a face devoid of eyebrows and lashes, looks back at you from the mirror. Tired, worried and confused, you can’t even see a glimpse of what you once were.

With a bald head, you can look edgy and quite attractive but once the eyebrows and lashes go – well then you just look – basically shit, like some kind of alien or a guppy!

If they could just tweak the drugs so that instead of finding all your hair on the pillow one morning, you could wake to find that your hair has grown several feet (that’s feet as in inches, not feet as with toes, now that would be ridiculous!) You would step out of bed to find long, thick waves cascading to the floor and you would bear an uncanny likeness to cousin It from the Adams Family. You could cut it each morning, trying a different style every day or you could leave it growing and enjoy your new floor length hair. The massively bushy eyebrows would need regular trimming but hey, you can’t have everything.

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There are many side effects I would like to swap, like the loss of taste I would swap for highly tuned taste buds, finger- nails that grow like talons rather than turning black and dropping off, the excruciating muscle pain would be exchanged for the strength and physique of an athlete. Then there is the exhaustion, the vomiting and much more and much worse, all of which, would be replaced with boundless energy, a ravenous appetite and something, in fact anything, that would improve the day.

It would be great if we could all pick and choose the side effects, even if it meant that we just got one good one to go with the bad ones. We don’t choose the illness so it would be nice if we could at least choose the side effects. How absolutely fantastic would it be if we could each have our own talent or super power. It could be running at the speed of light, leaping tall buildings with a single bound or just being able to glide across the ice. You could fly high in the sky, circling mountain tops and swoop over golden corn fields before returning to hospital for the next super power infusion.

So come on you wonderful, clever scientists, give us some side effects that will make having a life threatening or debilitating disease a little more bearable or even dare I say, fun. There’s a range of recreational drugs out there, designed to give a ‘high’ to those who use them. They do no good, they can be addictive and in most cases, they are illegal, so why not create something for Good rather than Evil and develop a chemotherapy drug that gives a non-addictive high that will offer some respite from the toil, pain and exhaustion of cancer.

We don’t have to turn cancer patients into super heroes, righting wrongs and preventing world disasters but while they are under- going treatment and worrying what their future might hold, could they not at the very least, have a bloody good time and fight their cancer on a ‘high’,  a positive attitude and most of all, a smile.

Keeping Abreast

Keeping A-Breast

When starting this blog I had initially intended to write about what life is like living without breasts.  The   physical implications, the restrictions, reactions from others, finding clothes, prosthesis and all the other stuff that comes with this life choice. However, as is usual for me, I became distracted and wandered off on another tangent.  Hopefully though, those meanderings have given you an insight to me, my life and where my thoughts are coming from which, may help you understand my perspective and the life choices that I have made.

You may have read on my earlier posts that I had fully intended to have a mastectomy and breast reconstruction and that nothing and nobody was going to get in my way.  I never for one moment imagined that the person who would put a stop to my perky new boobies would of all people, be me!  I was desperate to rid my body of the breasts that, despite my life long love and care of them, had become my enemy, intent on seeing me off. I wanted to rid myself of the risk and the worry and replace them with a pair of pert, perfectly formed and most importantly, benign boobies.

Prior to having breast cancer I would have never, in a million years, imagined myself living without breasts.  Obviously, it’s not something any of us consider for ourselves and though I was aware that there were women out there happily living their lives with prosthesis, I hadn’t really processed that in my mind or given it any real thought.  It wasn’t until I looked inside my hospital gown at my freshly modified body that I suddenly realised that maybe I didn’t need breasts after all.  During that first, scary peep I had expected to see a bad butchery job, like when you see a side of pork all sewn up with big string stitches, I thought that was going to be what my body looked like. I fully expected my stomach to churn and my heart to break. Yet through the scars and the drains that were taking the blood and fluids from my wounds, I could see a nice, smooth, well-proportioned chest. In a strange way, it looked youthful and cute, not at all grotesque and definitely not in need of cosmetic surgery.  I didn’t look a freak and in comparison to what I was expecting, I looked and felt, positively lovely!!

My choice to refuse the option of breast reconstruction must be difficult for many to imagine or understand. IImage got quite a few shocked reactions from some of the ladies I told of  my decision and  I’m sure that I would have been equally shocked had somebody  told me that they were happy to live with a breast-less, nipple-less, chest. I can imagine the thoughts that would have gone through my own mind, ‘She’s obviously putting on a brave face. She can’t really be happy like that. She must feel weird, a freak. She’s so brave putting up such a show.’  Ironically, you could say it was all a front!

Had anyone suggested to me that I needn’t bother with re-construction, that I could be perfectly happy without any breasts, I would have smiled kindly at them and said “I don’t think so, no way, no thanks, nada!”  It quite simply was not an option. But now?  Well now I feel like I have a special secret that I want to share, to spread the word, breast free is problem free. You may think me ridiculous and you may be right. On the other hand, it could be that these feelings of elation are actually those of relief. Relief that I don’t have to go through yet more surgery, relief that I have found myself to be happy with my body just the way it is, relief that my husband loves me with or without a pair of boobs, relief that I don’t wake up every morning worrying that the cancer is still lurking.

Having reconstructive surgery after a mastectomy is nothing like a regular cosmetic boob job. It involves cutting and repositioning muscles from your back, taking fat from your belly or your bum to form the new boobs. There are uncomfortable expanders that you would have to contend with for months, numerous hospital visits over a long¸ long period of time while your skin stretches enough to allow room for your  implants (be they your own fat or a silicone implant) Whatever option you chose,  it’s no walk in the park.  If it had been a quick snip, shove a chicken fillet in there, job done, have a nice day, I may have given it some consideration.  Or if, when I had peeped inside my gown, I had been repulsed by what I saw, then I would have probably gone ahead with whatever surgery I needed, regardless of the enormity of it all but a breast-less body is not weird or repulsive. My breasts do not define who I am, they won’t add any extra points to my IQ score and they certainly couldn’t contribute anything else of note to my life so the decision was a quick and easy one for me.

I should also mention that, after the chemotherapy the tumour in my right breast had shrunk from 3.2 cms to virtually nothing. This resulted in the doctors suggesting a less invasive lumpectomy but being the proactive kind of person that I am, I had already made the decision to have my offending right breast removed and also requested the removal of my more innocent left breast.  For anybody going through breast cancer and thinking about lumpectomies, mastectomies and reconstruction, there is a lot to think about, for themselves, their family and their relationships. Thankfully, the NHS allow you lots of time and options, giving every person the information they need to decide what’s best for them and their future. As a Breast cancer patient, you don’t have to make a decision there and then nor do you have to stick by that first decision.  You can refuse reconstruction and then in 5, 10, 20 or however many years, change your mind and the NHS will give you the reconstruction or surgery that you feel you want or need so there is no need to worry that this is the only chance to make what is a huge decision in your life.

So what are the pros and cons? Well for me the pros have been many and the cons very few but here goes.

Cons

  1. Due to the standard tailoring of ladies clothing, there are occasions when I have to wear my prosthesis when I would have preferred not to.
  2. I have to choose well-constructed styles of clothes to avoid flashing my scars/prosthesis.
  3. Bikini’s that will fit and flatter a totally flat chest  are not that easy to find though not impossible, when I find one I buy several and hang on to them!.
  4. Er, I’ll come back to this as I can’t think of another at the moment….

Pros

  1. A feeling of freedom and easier arm movement across the chest, which is especially useful when taking part in any form of sport.
  2. No jiggling boob pain (or embarrassment) when running.
  3. I can squeeze through much smaller spaces, which has on occasion, come in very handy.
  4. I can choose my boob size for the outfit and/ or occasion.
  5. I can achieve various looks from willowy and interesting  (flat chest, no prosthesis) to curvaceous siren (my large prosthesis also known as The Big Guns)
  6. The star pro for me though is that I have (fingers crossed) reduced my chances of a recurrence of breast cancer by a whopping  90%.

With Christmas approaching I have quite a few parties to attend and each of my styles will be getting a festive outing at some point or other. Being an outdoor, horsey type, I never used to care much for fashion but my newly modelled body has given me a fresh interest in all things fashion and   when the New Year sales start, I will be at the front of the queue, elbows sharpened, vying for the best of the bargains from a 32A to 36DD. Image