Tuesday 1st November 2016

It’s my birthday! I’m 45 today. Happy Birthday Me!

I should be happy I’ve got to 45!  But I’m tired and weary and feel 100 years old. I can’t sleep without drugs, my mind is racing, it’s 3am and I’ve been up with my poor Lewis who now has a sick bug! Really? After the day I’ve had I’m really feeling that someone has it in for me! I feel like crying but hey!  I think my hormones are a bit crazy since my ovaries have gone! I know this as I’m constantly nauseous, dizzy and my sense of smell is so sensitive – just like pregnancy.

So where do I start? Lots been going on and I’ll try to update.

Firstly, let’s start with a positive – today my mum has moved into her brand new beautiful house in Colchester! But what a tiring and exhaustingly busy day.  My mum is truly amazing and it makes me so happy to finally have her living closer to me. But I feel for her at the moment – I’ve not been able to help her with packing due to my health which is frustrating.  Luckily my brother (Darren) and sister (Michelle) have been able to be there, but she’s done so much herself and seeing her yesterday look so exhausted was so upsetting on top of everything else.  Sometimes we forget my mum is 71! But we will get her settled and sorted. I can be there now to help unpack and organise!

mums-new-housemeandmum

She is my inspiration and she has been through so much herself.  She is the one person that I can really talk to and who understands a bit of what I’m going through with this ongoing treatment as she’s been there too – with both of us going through breast cancer it has bought us so much closer. I love my mum so much and more so every day.

So that’s some positives – let’s hold on to that!

Here’s the medical update……

card-from-workOvaries: It’s been 4 weeks since my ovaries were removed.
Great news is that there was nothing abnormal whatsoever found – no cancer! It was a great relief to read this on paper.  I had already been told by the surgeon when I came round from surgery that they looked fine but it’s still reassuring.  My body is slowly recovering – just a stomach ache and a few twinges – I hope to get back to work next week but I’ll be working very part time. Thank you for my card everyone x

Resting has allowed mariaandhollyme some time to catch up with lots of my friends which has been really nice – plus we get to eat cake!

Really cheered me up seeing my ‘baby’ friends – Holly and Maria – always make me smile girls, thank you.

Medication: I’ve met with Dr Loo my oncologist. Yes, I’m hanging out at hospital a lot lately again! It goes like this.  We now know that the Exemestane (keep cancer away drug I take every day for years and years) causes the bone and joint pain.  But I need to be on it.  So I’m back on it aedge-of-tomorrow-tom-cruise_612x380_1nd don’t I know it! My bones are back to cracking and hurting – they feel so delicate that they could break at any time.  I actually feel like I need an Exoskeleton suit to give me some reinforcement….. bit like Tom Cruise…… with some guns too! and flames!

But in reality I have just ordered some wrist/arm supports.  I find the pain in my wrists and lower arms unbearable sometimes so we shall see. Worth a try.

I’m also trying some different pain relief…….medicinal cannabis oil (CBD) and the occasional glass of red wine! (with Strictly!) Not sure if either is working but got to be better than relying in Diazepam and painkillers more and more! Seriously though, I will update soon on the CBD as I know quite a few people are interested in the results.  But so far I think it’s taking the edge off the pain and just tastes really disgusting! The wine is similar! I’m also listening to meditation podcasts – this is great to get to sleep, it’s staying asleep which is the problem! Stupid pain!

cbd winestrictly

So back to Dr Loo – bone and joint pain caused by Exemestane.  Muscle pain everywhere they think is Fibromyalgia – my doctor agrees.  So I’m being referred to Rheumatology. Just more pain to deal with! Where doesn’t hurt? I can talk! My mouth is ok.

Plastic Surgery – the boobs: This is today’s news.  This is what has been hard today and on my mind tonight.  Firstly,  I had to go to my appointment to meet with the new Plastic Surgeon on my own.  Don’t get me wrong, I’m fine going to hospital on my own but today I really could have done with some support.  But that’s the way it happens – needs must and you just have to get on with it – Phil had to work, Mum moved house, Michelle had Amora and house and building work! Crazy day.  So off I go to meet with Dr Mat Griffiths.  I was worried – I had a bad feeling. But he was really nice and seemed experienced and down to earth. Plus I liked his secretary, Kim – usually a good sign! Plus I recognise a few people at hospital now – thank you Sharon on reception x

So results of meeting: as usual I have to strip down so he can see the boobs and this time look over for any flesh on my body to use – inner/outer thighs, bottom, stomach.  I felt a bit like a cow at a cattle market.  But needs must and he was kind and respectful.  It’s hard looking in the mirror let alone other people looking at the nude flesh!

To recap in May 2015 I had an immediate reconstruction with implant using strattice (pig skin) before I had radiotherapy.  At the time this was the procedure for the hospital and Dr C did a great job in the whole scheme.  I was really poorly and had lost a lot of weight so there was no option of DIEP at the time and it was worth having the implant to try and preserve some skin (that was how it was explained anyway).  There was always a chance it would be rejected or would have to be removed – it just wasn’t explained how this would complicate things so much more in the future, but maybe they didn’t know?  Plus we knew this was new surgery for cancer patients – it was meant to reduce surgeries and recovery time and save NHS costs too I am sure!  Basically now they only do this surgery as a preventative to breast cancer for women with the BRCA genes -like Angelina Jolie.  It has now been taken off the NHS as it’s been proven not to be successful when done before radiotherapy.  In my case the radiotherapy has tightened the skin and caused scar tissue to form which has meant a lot of pain (although I am the queen of pain now my body should be used to!). Dr Griffiths said that unfortunately it is only going to get worse as more scar tissue forms and tightens. The yoga and swimming are what has kept it stretched as well as it is.  So there is no choice – it has to come out.  Unless I want to have a painful rock boob forever.  I sort of knew this might happen but even so I’m gutted – It actually looks ok in clothes – sort of – if I was Frankenstein’s monster or similar!

But this makes me a difficult case for a number of reasons.  Firstly he’ll need to remove the implant and stattice and see if any skin can be saved. Apparently radiotherapy damages blood vessels.  Secondly the best procedure for breast reconstruction is to use my own fat/skin and stay away from any implants!  I know this as my mum has had a DIEP Reconstruction (skin, fat, blood vessels taken from stomach and reconstructed into a new boob) – she looks amazing – it has been a long time but she’s good now and definitely the best option.

But, and it’s a big but – I don’t have much fat or flesh at all and this is the difficulty!  He may be able to take a chunk from my stomach (not that there’s much there), and some from my inner thigh (not much there either).  He doesn’t want to use my bottom as that would make recovery really extra painful – front/back/sitting etc not good – plus not much there either!  It’s really long surgery too. But he thinks he would be able to make a new small boob (maybe a B cup) and then later on reduce my left side to try and match – he said the ‘good non-killer’ boob was good shape – he said people would pay good money for one like that! Not sure if I was meant to be happy or not?  I think it was a compliment maybe. Not that it helped.

The other option would be to have the implant removed to flat.  Which would be fine but they refuse to remove the ‘good’ boob to match and even up.  This is a problem for me – I need even! I wouldn’t mind but this is what I asked for right at the beginning but was told it’s not NHS policy to remove a healthy boob unless tested BRCA positive! But I can understand their reasons.

So basically Mr Griffiths job is to sort out everyone who’s had strattice implants. NHS project to save money gone wrong I’m thinking! And a few of us tried it out for them?

I asked him if he’d operated on anyone the same as me or similar.  Unfortunately not so far. He said there’s a team of surgeons that do about 400 ops a year just on breast surgery and he’s been doing this for 16 years – I think I have that right.  So it’s not good – it’s mainly because of the combination of issues – implant x not much fat x other pain.   And no, unfortunately I can’t take donations of flesh – damn! Also he said there’s no point trying to gain weight as it would just disappear again.

He said that I’m looking at at least 6 months recovery in my case, may be more.  This means no swimming! Not good for my mind! Plus huge amount of time off work. And then that won’t even be it – they’d still be more surgery after that for ‘tweaking and adjusting’ and still the left boob.

Still a lot to discuss and nothing will be rushed – we have a group meeting with surgeons in a month or so to give me time to research myself.  It may be an option to do in stages – get the implant out first and see what we have to work with.  Who knows? Not much on the internet regarding replacement recon after strattice recon either as it’s so recent.  I really could appear on Botched!

So decisions decisions.  I have a headache and I’m tired. How much more can a girl take?

But I need to stay focused….. get Lewis better – bless him – so so sick.  Help mum to sort her new house (this is good to keep me occupied), try and celebrate my birthday somehow but that may have to go on hold with a poorly Lewis and then get back to work (although I don’t know how my body is going to do that!). One day at a time.

 

 

 

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