Thursday 31st March 2016

I can’t believe that this time last year I’d had my first chemo nightmare, my hair had fallen out very painfully and I was getting ready for my second reduced lot and had another bad reaction to it – totally wiped my cells out.  How a year flies by!

So a year later….. and I can’t believe what I’ve been through – best not to think back really – so onwards we go…….

But number 14 Herceptin treatment has just about floored me this time. Bam! I’m trying to see the positives: it’s good that it’s the Herceptin that seems to be affecting me the most as I only have 4 more to go! Finish in June and after a few months I should start to pick up – yay! I will still have side effects to contend with from the Exemestane (10 year drug), and the zoladex (ovary shutdown injection) – until I have my ovaries removed, and then the ops to get through, but I feel there is an end in sight now – in maybe a year or so.

For anyone that knows me I’m the sort of person that would find a way to walk, talk, smile and keep going no matter what! I’ve just always been like that – I don’t know why – it must be in my genes! Thank you mum (and dad!) x

Has anyone seen the amazing Australian guy born with no limbs? His name is Nick Vujicic – he is truly amazing and inspirational – “no arms, no legs, no worries!” – check out his website: www.lifewithoutlimbs.org.

Anyway, this time even my sister said I looked like I was about to collapse at any moment. My whole body has hurt so much more, extreme tiredness (but unable to sleep with restless body!) and the nausea has been pretty bad. I’ve had the shivers and weakness too. But another positive: I am telling myself this amazing drug is doing a good job on those rogue cancer cells – it’s it’s making me feel poorly it must be working!

The question is should I rest or should I push myself? This is the big question as there is no rulebook. I will be continuing to mind over matter, exercise and swim as much as I can – there is research that proves this is a good thing to do throughout cancer treatment – just carefully – and I’m taking good advice and listening to my body.  But at the moment I’m resting and eating chocolate……

…. and of course watching some feel good movies. The Easter break has come at a perfect time and movie watching makes me sit down, rest and recover.

We started  by watching “My Big Fat Greek Wedding” – thank you Gemma for lending it to us – we went to see number 2 at the cinema next. We laughed so so much – great movie! But now Freya wants a Greek wedding with lots of Greek dancing! She’s nearly 11 so there’s time yet for this – we’ve compromised on maybe a Greek inspired party at some point! Or my lovely cousins Kirsty and Tony could just tie the knot and ship Tony’s Greek family over for the Greek dancing!  We may need to work on this marriage project though! Or we go on holiday to Greece and gatecrash a random Greek wedding! Something else to add to the bucket list!

We watched another great99a6ffe1-a631-467d-82e1-e5c525ecfe04_560_420 movie – Inside Out! Just so clever – this movie shows how we need all our emotions – being diagnosed is definitely full of emotions!  It shows we can’t be full of Joy all the time and we need some sadness, fear, anger and disgust to make us appreciate the joy even more! Love this movie – sure we’ll be watching this a few times over the holidays. Very brilliant!

Freya and I also came across a bunch of beautiful Leonberger’s on our way to the cinema – big fluffy dog cuddles are the imagebest thing ever for a cheer up!

So update on the ever continuing cancer stuff: had a mammogram and ultrasound on the “non killer boob” – mainly to check it and help us decide on the best option for the left boob – keep and uplift, mx and recon or totally leave alone? Decisions decisions.

I wasn’t worried about any cancer showing up – I know what to expect now, plus I’m on the hormone meds and still on the Herceptin so they should be keeping the cancer at bay. If there had been any early cancer then that would have been a very bad situation as it would mean the Herceptin wasn’t working or a new non-hormone receptive cancer – but there wasn’t so let’s not even think about that one! There were some calcification dots but no change to these which was good too. My radiologist showed me and compared my scans from a year ago. The tissue in my left boob seems to be changing a little which could be due to hormonal changes, still very dense, very nodular and lots of tiny cysts. So not good for feeling any changes. But pretty much what we expected – no change is good news. Although, this still sways me more to having a mastectomy on this side too. I asked her opinion and in a professional way she seemed to agree – it’s all down to our mental state. If we can live with it and block it out then fine. If not, then prevention could be the best thing, everyone is so individual.

If only my boob wasn’t so lumpy then this would totally change everything! Every new lump or bump I will have to get checked out – this could make me quite neurotic so not good for my mind long term – even though I know that cancer doesn’t spread this way as it would more likely recur in the right side of my body to the bones and lungs etc and hopefully the Exemestane should keep this controlled.

But I also need to help my body long term and how I feel as the unevenness is affecting my posture and causing terrible neck, shoulder and back pain. I FEEL so odd – no one can really prepare you for this feeling – it’s probably worse than looking so odd now.  Obviously not as bad as losing a leg or arm but still odd! I feel like I walk lopsided, my right chest and upper right arm is still very numb so this adds to it – nightmare when you get an itch as there is no feeling to scratch it!

So with Dr Chakravorty (my surgeon) leaving this week I had an appointment to see him before he goes to discuss the results of the scans and to get the “ball rolling” with the paperwork.  Dr Loo, my oncologist, advised this as things can take a while to get sorted as a preventative/elective op and she felt it best to do this to give me the option later.

Dr C looked very tired – he works so hard – busy being a boob consultant! We must all blur together – he’s known me for a year and I’m really sad he is going and I can’t help feeling a little abandoned – stupid I know.  Whatever I decide to do to sort the ‘other’ boob I have plenty of time to decide, 6-12 months I recon, as it’s more important to get the ovaries removed first.

He did discuss that most women prefer the option of keeping one natural boob or having an uplift, but it would still feel different – I don’t think I could do one wobbly one and one that doesn’t move at all and feels like concrete – the oddness is driving me absolutely CRAZY! I know I should just be grateful to be here, and of course I am, but I also need to think long term – the main thing that niggles me is the risk of another op – so much could go wrong! Should I just pull myself together and just live with oddness and get on with it, why put myself through more pain and risk? I will be continuing to research.

People often ask me if I worry about the cancer coming back or getting out of control. OF COURSE I DO – I’m human! But especially because I was diagnosed with aggressive breast cancer which was camouflaged under the cysts! – I would have preferred a slow grower and been post menopause, but hey, we don’t get a choice.

I used to worry1438884435615 about absolutely everything and everyone and I still have moments but I have to control my anxieties as much as possible now.

I would worry when Phil picked up the chain saw (I still do a bit, I just don’t watch!), worry about the kids all the time, worry about falling down the stairs, worry about a car crash – everything – I’m totally over cautious!  I also overthink everything and always think the absolute worst scenario so then I’m prepared – this is what is making the boob op decision more difficult as worse scenario: ‘I die on the operating table’, second worse scenario: “op goes wrong and implant rejects or gets infected’ etc etc – my brain always works at full speed just thinking.  I wish I had one of those Pensieve bowls Dumbledore had on Harry Potter for all my thinking! I suppose this blog helps – but I can’t put everything down – way too much information and a lot of rubbish! I apologise – just skim over my ramblings!

I know I cannot solve everything for everyone! I don’t have a magic wand! So I am doing my utmost to change my mindset – worrying is no good and it’s pointless and there’s a lot of stuff that is totally out of my control – still easier said than done though so this is working progress. I am still doing ‘one day at a time’ – and at the moment one thing at a time too.  My multi tasking skills have gone out of the window – I can’t even string a coherent sentence together most days now. I am such a goldfish – 3 second memory and all that – post-it notes everywhere and driving the kids insane! So frustrating of me too, grrrr!

Being diagnosed with cancer (or any life threatening illness) is just simply horrible. One of my longest and dearest friends has been messaging me this week as she’s suffered a perforated bowel – nasty! She is so strong and has been through so much and I know she can get through this. But stuff happens to all of us to give us a shake up – we don’t know when bad stuff is going to happen or if we’ll get through it – but that’s what life is all about isn’t it? None of us know – surprise!  It makes you think and makes you assess and value your life so much more – as we should.

Unfortunately I’ve lost a few close people in my time so I’ve regularly had sharp reminders of how fragile our life is – it has definitely affected me as to how I try and cope with bad stuff.  I’m also very lucky to have amazing family and friends to support me. My lovely family came to visit on Sunday and they all brought the food already prepared so I didn’t have to do anything! thank you x

My inspirational quote of the week was given by my friend, Vish (he’s one of my lovely, clever, inspiring swimming friends – he’s actually a mental health consultant or something very intelligent!)  He told me that his mum used to tell him that ‘the world is an Echo – what you put into it, you get back’.  I love this so I thought I’d share it! I totally believe that you get back what you give out in this life and I’m trying to teach my kids this way of thinking and doing. I am forever advising them to treat others how you’d like to be treated – in every way.  I hope they do. Vish has also given me a bit of light reading material to help my mind ‘Psycho-Cybernetics’ by Maxwell Maltz – will let you all know how I get on, but first impressions it looks perfect!

So back to the question – do I worry about the cancer coming back – yes, but I try not to dwell on it for long but it is also a reality now.  I remind myself that anything could happen in the meantime . There is always someone worse off and something worse than cancer! And it’s important to keep reminding ourselves of the whole perspective of this and that’s what I do to cope – I look around and I remind myself every single day.  It’s not that bad really! But it is hard and I do have times when I have to pull all my strength together to keep on going – especially when I’m having a particularly painful body day too.

I have had the pleasure to meet some interesting people along the way that have inspired me.  Recently I met a guy in chemo (I can’t remember his name), he was obviously there for cancer treatment but he also had his arm in a scaffolding – like in cartoons!  Me being so nosey asked him what on earth he’d done – so he proceeded to tell me the story of how he’d cut his fingers off by grabbing a bandsaw when his dog had knocked it over and it had started heading towards his groin! OMG!  He picked his fingers up and wrapped them in a towel (he said he forgot about the frozen pea thing!)  The hospital tried to save them but he said it was looking bad.  He was still so positive and happy – he helped me that day – it was his left hand – not his right! It wasn’t his groin! It could have been worse – he was still smiling – and to top it off he had cancer between his eyes (so not a good place either!)  There’s always someone going through worse!

I also met a lady in the mammogram waiting room – she’d already been diagnosed with cancer in both boobs over a year ago (slow growing), but she decided to decline treatment and continue with her plans to go and travel the world for a year or so – on the condition she came back and got checked out on her return.  I don’t think she had children so this obviously makes a difference, but she’d sold her house, given up work and was planning to go off travelling again as soon as possible – she had a whole bucket list to work through – one being to swim with great white sharks! Wish I’d got her name as I’d love to have seen those pics! Amazing!

So we all have to find a way to put it behind us some how, carry on and keep focused – otherwise it screws you up and I don’t have an answer on how to do that but I hope this blog is helping a little to show how I am trying to cope with stuff at the moment – I hope my new book helps too.

I will be continuing to surround myself with the people I love, things I love doing and as much positivity as possible – I read the end of a book now before I start it to make sure it ends happily – it all helps! I try and avoid anything negative or people that may bring me down. I spend more time with the people that I really want to be with and who keep me happy – I am learning to say ‘no’.

We all have that inner strength, we just have to find it, keep hold of it, call on our family and friends and anything else to help us keep going – be it swimming, exercise, sewing, reading, holidays, hobbies, cuddles with fluffy dogs etc etc). I’m sure not giving up! We can do this!

So Bear Grylls it is still! – I’m working on convincing Phil I need a ‘Go-pro’ camera if we’re going to do Bear Grylls properly – starting with some underwater Mermaid pictures!

 

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