The Unspoken Rule – Chemotherapy Days (part 1)

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Before going for chemotherapy I did the one thing that you are told not to do.  I researched on the Internet, desperately trying to find something that would tell me what it would actually feel like.

It turns out that it’s difficult to explain what chemo feels like. Everyone’s experience is different (it’s true) and the cocktail of drugs that you can be given varies – everyone reacts differently.

But that’s not really what you want to hear when you are trying to prepare yourself for a round of chemo.  You just need to know.

In fairness my chemotherapy nurse had offered to put me in touch with others of my own age, those who had been though the experience (a good variety too – those who had both good and bad experiences) but in all honesty, I am quite a private person – and I was not ready to talk to others at that point.

Personally I find reading rather than talking is easier, so this is my feeble attempt at explaining my treatment.

Chemo Session #1

Lisa Lynch made me laugh, mainly because, like her I too rocked up to my first chemo session in trendy jeans, a nice top – a touch of makeup (this is rare as a mum) and a positive attitude.  Announcing my arrival to the receptionist in the chemotherapy ward like it was something I was actually looking forward to (I think we both knew I wasn’t).

I had done all the things that I had researched – drank tonnes of water, visited the dentist, drank yet more water and eaten good food beforehand.  The first dose wasn’t as bad as I thought, although that may have been due to the positive mindset I tried to adopt (and also perhaps your body is stronger the first time).

The ward was cheery, as were the nurses, I sat in a nice purple chair and was administered EC (Epirubicin and Chlorophosphomide) manually. As soon as it was all over you are sent home to deal with the aftermath of how chemotherapy drugs truly affect your body…

The best I can describe it as is a VERY bad hangover.  Your head feels like it might explode from the pressure, your limbs ache a bit like the day before you catch the flu, and the nausea is constant even with the tablets.  The tiredness is overwhelming at times – it is true that chemo tiredness makes you too tired to even tolerate lying down.  You are hungry, but not hungry.  Thirsty, but not thirsty.  You have to drink to try to flush the drugs out of your system if you can, which means constant visits to the toilet.  You shake, go hot and cold and generally feel crap.

Luckily I didn’t actually throw up or have to be re-admitted to hospital because of infection – so I am all too aware that my account of this is not as graphic as it could have been;  yet that is how it happened to me.  A true, honest account.

At this point I have to say that I feel quite bad in saying it how it really is, mainly because it seems like an ‘unspoken rule’ that no- one should talk about.  It’s a bit like not telling other expecting mums what it really feels like to go through labour.  It is quite an inbuilt British way I find, that we are brought up to feel as if we shouldn’t talk about illness or pain, and just shoulder it and soldier on.

– but then if no one ever says?

Chemo Session #2

The following doses did tend to get gradually harder – all the same experience but your body starts to question what the hell you are doing to it.  This time I was more prepared, leggings on with a nice top accompanied with a fleecy blanket and several other helpful items in my ‘chemo bag’ that I thought might be helpful, all things I had forgotten last time (nice smelling conditioner, a book, hair things and snacks for the ever – patient husband keeping me company).

It is probably a good time to explain the Cold Cap at this point.  You are offered (but it’s not compulsory) the option of trying to preserve your hair.  The Cold Cap is a helmet with a cold ice coil inside placed onto your head, with the aim to shrink your hair follicles whist you recieve chemotherapy.  This is a clever little invention, and can in some cases, prevent or minimise hair loss.  I tried it and because I could tolerate it (4 hours of tolerating it per session) I have persevered.  I can honestly say that it was the hardest part of my chemotherapy experience, however it has saved my hair so ‘every cloud has a silver lining’ I guess.

The second dose was also in the afternoon (the first was a morning session) so the anti-sickness drugs I took when I got home proceeded in keeping me up all night, through the nausea (it is fair to say that I did not look good the following day). Sleep is key.

Chemo Session #3

Try as I might, (and I am trying to portray the positives in all of this) I have to honestly say that I worked myself up before my third round.  It is my own fault, we all have ‘off days’ and this day all the little things seemed to go wrong for me.

Now dressed in leggings, non matching jumper, hair thrown up into a bobble and not looking particularly good I had forgotten my hair things, my nice smelling conditioner and other bits and pieces needed.  I had remembered my essential fleece (bought by a kind friend) to keep me warm and obviously my now long suffering husband!  The dread of the nausea and the cold cap meant that I was snappy and irritable and generally probably not nice to be around.

The hospital had mislabelled my bloods that are required for the ‘pass’ that you need to have your next dose, so we went in to hospital hours early to have everything that I had already gone to great lengths to do the day before – all over again.

The session itself wasn’t that bad, I say this because it was no different to the previous two sessions – however the administration of the chemotherapy seemed a little quicker this time, to the detriment of my veins I later found out.

This was the day I really wanted to draw the curtains around my bay (the wards are generally open) because I just wanted some privacy.

I am glad that I didn’t draw my curtain that day, because a lovely lady sitting opposite me later mentioned that she had been in hospital since 8am and that this was her second time (I presume she meant second cancer and experience of chemo).  She had been merrily chatting to a lady sitting in the next bay to her, who she had obviously befriended during previous sessions and then later (to my relief) her daughter came to keep her company aswell.  That lady made me realise that I needed to ‘snap out’ of feeling sorry for myself, as we were all sitting there in the same situation, and some worse than others.

Chemotherapy is shitty, there’s no two ways about it BUT and here is the big but, it is an extremely humbling process and one I intend to learn from.

One For The Dads – the Gambler’s Club

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I picked a ‘good un’ in my husband, I am 100% certain of that.  If I wasn’t before all this, I am now.

Firstly, and most importantly my husband saved my life.  No two ways about it, he felt ‘it’ and commented on ‘it’, and if he hadn’t my story so far would be a whole lot different.

My husband wasn’t there on the day of my diagnosis, something that was my decision.  It was a difficult decision for me, for fear of hurting him, but nevertheless I needed to hear those words on my own I think.  From that point on though, my other half has been there every step of the way – and believe me that is no easy thing given how stubborn I am.

As a daddy he has bravely taken up the mantle from school pick ups, to making dinners – afternoons in the park and surviving bath time (happy hour, where everybody loses their patience or has a meltdown).

Our son adores him and is delighted that his daddy now gets to hang out with him more whilst I am out of action.  To my son, his daddy is his hero through and through.

My daughter on the other hand, makes him work for it – in every sense of the word.  She decides on any given day whether she will kiss him before he goes off to work in the morning.  She will play with him, only on her terms (usually making him sit in amongst her teddies in a make believe game).  She doesn’t hold still whilst he struggles to dress her and fathom her tights, or even attempt some sort of hair style.

I know that both my kids love their daddy for all of the same reasons that I do, he makes them laugh, he is kind and he has all the time in the world for them – he always will.

It is only right to say that breast cancer affects the men as well.  I have found it to be similar to pregnancy in that they try to be there for you – but in essence, they are helpless in knowing what to do for the best (and that can’t be a nice feeling).  Yes, it seems that at the sametime as hurting you, this crappy disease hurts them too.

On the decision of whether or not to accept chemotherapy treatment he applied all of his ‘Gamblers Club’ knowledge (a group he’s in with his old Uni friends) and boldly said that he would take the slim odds that they gave me for reoccurrence – the chances of the cancer cells coming back, without further treatment.  However, he soon changed his mind (we both did) after the reality dawned on us that what we stood to lose was much greater than either of us could deal with.

He found my post-op mumblings whilst coming round from general anesthetic hilarious and although I can’t speak for him – I think he is secretly very pleased with the results of my ‘boob job’, as they are definitely new and improved.  It is also safe to say that he was a little taken aback one morning in the hospital when I informed him that he was the 3rd man to see my boobs that day (following consultant visits).

He has temporarily lost his drinking buddy for our ‘crazy’ Saturday nights in front of the telly with a takeaway.

He has had to put up with a teary, tired wife for months, and has even lost embarrassingly at ‘Words with Friends’ (a Scrabble App) during my lengthy chemo sessions.

He has juggled the work – home life thing for months together with looking after a sick wife.

But you know what? He has not complained once.  Not one single time.

Now on Fathers Day I have the quandary as to how the kids will go about treating their daddy.  Scenario #1 is pay back for Mothers Day, where they excitedly wake him at 6.30am on Sunday morning with cards and gifts, happily bouncing on the bed or Scenario #2 letting him lie in until he naturally wakes up (a thing that all parents with young children crave). This year I am going for the latter because he bloody deserves it – every single minute of it*.

I can say now and with absolute confidence, that if there ever comes a day when I am not here I know that my children will be brought up in the way that I have always wanted – and as a mother there is not much more of a compliment I can pay the guy than that.

* Happy Father’s Day Gareth Matthews

A Little Bit of Magic – holding on

Believing you are different is a risky game.

It has occurred to me recently that I seem to believe that I am different,  or special in someway.  Almost as if the rules don’t apply to me and the ‘norm’ or normal way of doing things, for some reason are different in my case.  Or that maybe some sort of miraculous exception will be applied at some stage in all of this.

As a child you are taught to believe in your dreams.  That you can do anything you set your mind to, as long as you work hard enough, and don’t give up – you can pretty much achieve anything.

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… and so it came to be that just before Christmas (around the time of my diagnosis) my kids fell in love with a film called ‘Pan’.  The tale of Peter Pan, the boy who never grows up and who lives in magical world where fairies exist.  Whilst this tale is just a story, I love the idea that children believe in magic.  They completely, whole heartedly believe – as a parent this is a special thing to see and you hope that they will hold on to it for as long as they possibly can.

Obviously at some stage in the process of growing up you stop believing in magic.  You let go of some of the more unlikely dreams that you had along the way.  Reality and life make sure that you forget the things that you imagined to be achievable & you settle for those that you believe will make you happy.

With all this in mind, the breast care nurse had her work cut out with me.  I was told all about the effects that breast cancer can have on you (physically and emotionally) but I looked instead for the exceptions.  I was handed story books to explain these effects to my children, and I instantly said ‘no thank you’.  As if these stories didn’t apply to me, my situation, my kids.

I did tell my children of course, about hospital and the nurses helping me and giving me medicine.  I showed them my scars as they watched me bathe, and I let them ask questions about all the things they did not understand.

But all the while I also encouraged their love of stories and magic, adventures and lovely things.  This idea helped me when writing both a short note the night before my surgery – reminding them of our favourite songs, to believe in magic and to look after each other always (in case I wouldn’t be there to remind them).

You see, I believe that the reality and the harshness of life can be explained in the moment to kids.  They can handle it, God can they handle it, when they are called upon to do so – tougher than adults will ever be without a doubt.

In the meantime though, as a mum, you do everything in your power to keep the magic alive.  To preserve the happiness and naivety of childhood for as long as possible – and in that way the story of ‘Peter Pan’ has it spot on.

As a grown up faced with the reality of breast cancer and beyond – I have learned to say ‘thank you’ for the second chance, and that I have been given a little bit longer with my kids.

Because, if one day you are not here anymore, just a photo, or a memory – then at least that memory might be that you were always a little bit different or special.

– for Noah and Isla (my Peter Pan and Wendybird)

Counting My Blessings – the fertility issue

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So as well as dealing with the ‘here and now’ it seems that you also need to try to focus on the future.

You see when you are young, and you are diagnosed with breast cancer the fertility issue is bound to creep up… and it doesn’t just creep, it slaps you square in the face.

As well as deciding about surgery it becomes apparent quite quickly that any resulting treatment (be it chemotherapy or radiotherapy) can damage your chances of having children.  That, together with the prospect of early onset menopause from hormone therapy means your options are fairly limited.

I’m sure that my friends & family would tell you that my head is dizzy at the best of times.  Since my diagnosis, my concentration and memory have reached shockingly low levels (this can no longer be blamed on ‘baby brain’ when you have a three year old). Having said that, I am pretty sure – no actually positive, that I hadn’t finished my family.

Both myself and my husband ran a standing joke as to whether we were finished having babies (usually after a sleepless night, a dramatic tantrum or too much wine).  Yet when asked if we had finished our family by my breast care nurse, we did not have a real answer – the thing is that we had not yet decided.

Quickly referred to a fertility specialist we were given the option of IVF or several other drugs to try to minimise any damage that treatment would inevitably have on my body.  Reluctantly we decided to let nature decide, given that we already have two beautiful, healthy children.

Now I can’t imagine what it feels like to have to make such decisions before you start a family.  Or even to be told that having children is not an option.  But I do truly have a greater empathy with all of my friends who have had to go down the IVF road.

The best I can do is to say is how it feels to accept that breast cancer has taken away our choice.

It feels like something very precious has been stolen from us before we even realised it had happened. Something that may have never been there in the first place, but if it was, it has now gone, and that is truly heartbreaking.

In truth, I cannot think about it for too long because I get that ‘girly’ anger where you get so mad the tears well up in your eyes.  So what I try to do instead, is to think of the things that I am thankful for.

I don’t take for granted a single thing that I have.  I know how lucky I am to have two beautiful children and a husband who loves me – and for that I am truly grateful, no matter what the future holds.

Children are better than medicine – fact

I have discovered that children are better than medicine.

Having children on a normal day is a tough gig.  Don’t get me wrong my kids are bright, energetic and happy (most of the time). But I find keeping up with them hard work!

Now I struggle like most mums, even on a normal day – the manic mornings, the school/ nursery run, doing my own hair/ cleaning my teeth in the car (or once I get to work). The endless laundry that never seems to make it back where it should be & then all over again, school run, tea time, bath time story time – you get the general gist.

Yet, on the day I was diagnosed – on that day, I had managed all the normal morning stuff.  A full speed nursery run, school run… and then everything began to slow down – almost like everything was getting stuck in slow motion.

After the school run I waited in the reception of the Breast Care Unit, trying to enjoy the moments of peace (actually having time to read a magazine about random celebrities that I had never heard of) – but I was shaking.  Even though I knew the answer before I was told, I was still shaking.

The lady I later learned was my breast care nurse came to greet me and asked how I was.  In the room my consultant sat there, on her day off, and looked me straight in the eye and delivered her diagnosis.

The next few hours were a bit of a blur, but I remember a few things.

On the way home I got stuck in typical Christmas shopping traffic, and then being late to pick my little boy up from school (which is not an option for school age kids).  When I finally arrived at school he was in floods of tears, all on his own.  I’d let him down (he’s a sensitive little thing) and I just wanted to sit and cry with him but I didn’t, I shook myself off ‘got a grip’ and headed to pick up my little girl from nursery.

On that day though, all the little things became much more important and all the stressful things became, well, insignificant.

From that day I knew that every single kiss good night or cuddle or game might become a memory – and memories are important when children are growing up, they make you into the person you become.

So I had made my little boy’s first Nativity and my little girl’s first Christmas show and instead of crying I enjoyed every last second of it – being a normal, proud mum trying to take not very well focused pictures with my phone and trying to do thumbs up whenever they caught my eye.

You see the thing I found about my diagnosis was that I could handle the facts, in part because I already knew that ‘it’ was there I think.  But the offer of the books to read to my children explaining cancer were a step too far for me at that time.  I would tell my children in my own time and in my own way, but the hardest thing about all of it was the realisation that I may not be there to see them grow up – and that, for any mum is the real kicker.

But you know what? After one of the most difficult days of my life – seeing my husband broken and me wandering round like my legs were stuck in treacle.  I still managed the school pick up and I still managed the tea time/ bedtime saga, adamant in my mind that the children’s routine would stay the same no matter what, adamant that they wouldn’t pick up even a slight hint of upset or fear.

You see that is the amazing thing about having children, and it is the thing that has kept me going in a way.  They don’t stop, they go on and on, their energy and enthusiasm has no end.  Children still have all their everyday needs regardless – and when you are broken and on your knees they always oblige with a smile and a cuddle.

The Day the ‘Gloves’ (Bandages) Came Off

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After a few weeks I returned to hospital to have the bandages removed.  This evoked a whole range of emotions, relief, anxiety, dread even.

Myself and my husband met with my consultant and breast care nurse in the room in which it all began.

Behind a curtain they asked me to remove my top and gently removed my bandages.

It’s hard for me to put into words the next part because the results were amazing.  The scars were barely visible and because I had opted for a nipple sparing mastectomy (a relatively new procedure) my new breast appeared almost symmetrical, although you could tell the right one was implant only.

I said thank you and tried to smile, because I was thankful, very thankful at what this lady had achieved. The results were fantastic.

My breast care nurse asked if I was ok as I seemed a little quiet.

Maybe it was the resulting conversation that got to me, I’m not sure.  The consultant explained that only three of my lymph nodes had been removed (which is a good thing) as the cancerous cells had not spread beyond this point, however the grade of the tumour had been higher than expected.  The new grade, coupled to my age meant that chemotherapy was now an option for me.

That was the last day I saw my consultant, and I gave her and my nurse a small bag of treats and cards to say thank you.  She made me laugh as she said, ‘Don’t make me cry, this is why girls shouldn’t be able to do things like this!’.  Ah so true, because as I have already explained, that lady completely got it – an accolade to her true expertise.

Finally, we sat down with my breast care nurse to discuss further options and ‘what happens next’.  She was fairly upbeat and my husband was relieved also.  But I cried, not a lot, but the tears fell, much to both of their surprise.  The relief and anxiety washed over me, and in a way the news about the possibility of chemotherapy was also hitting me.

I always knew my tumour was borderline and I was made fully aware of the possibilities of all treatment, but when the facts hit you – you realise that ‘it is what it is’ – right down to the wire.  No one, it seems can control cancer they can only provide you with the best treatment they have available.

Looking back I think I was naive about the bullshit.  You see, more of it hits you when you least expect – and you have to ‘man up’ and deal with it the best way that you can…

Tea and Ice-cream

I have read many things over the last few months, but these are the things that I have found to be true.

Cancer patients don’t sleep.

Heat heals. Warmth distracts from pain & relaxes. Hot water bottles, baths, fleece blankets, sunshine or warm drinks.

Tea

Chemo makes you too tired to even tolerate lying down.

The surprising reactions from people. Good and bad. From the upfront bold questions that hit you like someone has just slapped your face. To the positive & lovely who don’t want you to give up.

The constant kindness of people – those who have listened. Those who consistently check how things are and genuinely care about the answer.

The tears that don’t seem to end, sometimes good sometimes bad. Just the sheer overwhelming, ongoing feelings of ‘fighting’ something that cannot be fought – whilst willing yourself to enjoy every tiny moment possible.

Fresh air and exercise does help. Cold makes you feel alive. Sun shine makes you feel alive. Water makes you feel alive.

Children are amazing. Constant energy, constant enthusiasm, and a constant spectrum of raw emotions from wide smiles to full blown tantrums. Better than any medicine without a doubt.

It is important to have greater understanding and more tolerance of others. Their lives, their illnesses, their troubles or bravery.

Illness, whatever it may be, makes you take a long hard look at yourself. There’s nowhere to hide.

Tea and Ice-cream (and wine when you’re allowed) solve everything.