Tuesday 11th October 2016

Super quick update!

As most of you have seen I had my operation 2 weeks ago now to remove both my ovaries and tubes (bilateral salpingo-oophorectomy) – if you want to see pictures then check out the Medical page! I stupidly thought it would be a walk in the park and I’d be fine and up and about after a few days. Oh how wrong was I! I had to stay overnight in hospital and my stomach hurt so so much – even more than having a baby! In fact I’d have a baby any day rather than go through that again.  But the surgeons were really happy that it all went to plan and seemed pleased with themselves! I think they had a wild party with their medical instruments in my inflated stomach! Ouch ouch ouch! But another ‘tick’ off the treatment so all good!

Now I’m not one to usually sit around and feel sorry for myself but I did this time – for a bit anyway! I was bored resting, fed up with hurting and so weary.  The fatigue is as bad as in pregnancy but never ending img_2220– all I felt like doing was curling up on the sofa! So not me! But good thing is I’ve watch a lot of TV, rested, snuggled with Clover and I’m starting to feel better! I love Lucifer TV series (fallen angel – so funny but it hurt to laugh, so good!), Cold Feet is great! Undercover Boss USA is just fab! I’ve been watching lots of operations on Botched – it’s amazing what these guys can do with a nose! I wish they could sort my boobs but more about those later! And loads more rubbish day time TV that I never usually watch!

My whole family have been poorly with a terrible headache, cold/cough virus thing.  I think my body has been trying to fight it off too as I’ve been bowled over this time.  But I’m slowly mending and I’m very lucky to have a great network of friends and family – so many lovely people!

But on top of that sometimes when you’re at your lowest energy wise and generally feel rubbish I find someone unexpectively comes into your life and gives you that boost you need to pick yourself up and carry on.  This time for me it was a wonderful couple I’ve known for a while but not really well – Troy and Natalie.  I hope they don’t mind me mentioning them but they’ve been through hell themselves these past few months (and I mean hell).  I’d wanted to see them and do something to help them but hadn’t had a chance as my ‘stuff’ has been getting in the way! Frustrating! We live in a village – that’s what we do!  So finally, with some chocolate brownies in hand, Phil dropped me off for a cup of tea and a catch up.  I’ve been drinking lots of tea and managed to catch up with lots of people which is another great positive to recovering from an op! What amazed me was they have their own ‘stuff’ going on – I’d wanted to help them in some way – but they were both more worried about me! I felt so emotional with the kind things we chatted about – that simple cup of tea (well hot water in my case) was worth so much more to me than they realise.  There is always good that comes out of bad. Thank you both so much x

But back to the update…. other than drinking lots and lots of tea I’ve had lots of hospital appointments for scans and tests – it feels never ending.  Today I met one of my new consultants – Dr Peter Liptay-Wagner.  I was very impressed – he didn’t rush, he had obviously spent time reading my notes (they are huge!) and he took a lot of time to answer our questions and explain everything.

So most important news of today is that all my scans have come back clear! That means nothing bad and most importantly no cancer spread. Yay! But I sort of knew that the pain I’d been in wasn’t due to cancer as it’s a very even pain.  But we needed to make sure.  Good news.

I’ve been off my Exemestane (aromatase inhibitor drug to keep the cancer away) for over a month now too.  Just to recap, as discussed with Dr Loo, we needed to do this along with the scans to see if it was the meds causing the amount of pain I’m in.  I can say that since being off this my joints seem a little better but that’s it. Still feel pants in general!

Anyway, this means they can assume that the pain I’m in is something different – it’s like being a detective! So they think it’s most probably bought on from all the treatment my body has been through.  Sometimes I forget how much I have been through – I don’t allow myself to look backwards – what’s the point? I focus forwards, one day at a time and just get on with it day by day and be grateful – and I am so very grateful!  But after speaking with the doctor he thinks that the deep throbbing pain I’m getting constantly in my hands, wrists, arms, feet, ankles, legs, neck, chest, shoulders and head is something called Fibromyalgia.  In a way if it is, that’s great as I’ll know what it is! It’s not life threatening either! Yay! A positive.  But in a way it’s bad as there’s not much that can be done and it is so wearing as the pain is constant.  The only thing that seems to ease it is swimming, gentle yoga, and warm baths (or hot tub and sauna works well too!) In fact I feel like I need to lay on a beach in the warm at least every few weeks to cope with it – yes, we are doing the Euro Millions as this is the only thing that could enable such a life! The doctor thought this was funny! Then of course I still have all the other side effects to deal with on top of this – it’s going to be gruelling forever!  So yet more blood tests! My poor veins!

Next point we discussed is the boobs!  They discussed my case at their management meeting and decided that they wouldn’t recommend a full mastectomy on my good boob.  What they think will be better is to try and rectify the new boob so it doesn’t hurt so much and may be able to add some flesh from another part of my body so it looks more natural and more comfortable.  They think the radiotherapy has tightened and distorted the implant which makes it so painful still and it’s important this is sorted.  They will then uplift and implant the ‘good boob’ to match as well as possible. So for this I am being referred to a plastic surgeon to discuss all the options in much more detail to make sure I am happy with the decision.  I wasn’t sure at first but after a bit of thought I think this is the best option – Phil agrees too. Even Freya came along for the meeting but she’s been poorly so I think most of it went over her head, bless her.  If the cancer was to spread it is most likely to go to bone, lungs, liver etc – unlikely to spread from boob to boob.  I will still get regular mammograms too which is reassuring. We have a plan – plans are good.

We also discussed me taking Bisphosphonates – there’s been a lot in the news lately and because of this there has been an influx of ladies requesting them.  This is also good news.  From my research, although they have side effects, the benefits are worth it.  They work by putting a sort of shield around the bones.  In my case prevention is better, especially as my bones will be prone to degenerate much faster than a woman who had naturally gone through menopause and the medication effects.  On top of this they add a protection against cancer spreading to the bones.  So hope to find out more about this in the next few months too.

Meanwhile, I am continuing to rest, recover and look after myself and try to be patient with my body! And of course my voice is fine so I’ll continue to use this time to catch up with friends and family over more cups of tea when they visit!

There are reasons for everything that happen in our lives – good and bad.  After everything I have been through and yet to go through I am so happy – I don’t understand why but it’s nice. Love always to everyone who has been helping us and thank you x

 

 

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