Saturday 7th July 2018

Reality Check…

Last weekend I had my Personal Independence Payment Assessment (PIP). This is the only help I get financially as I’ve been poorly for so long and unfortunately will be for a long while yet if not forever. Up and down – sometimes good sometimes bad, sometimes really bad. It’s about £300 per month and is just a little added extra to help. It means that I can work part time which helps with my health and my mind. In an ideal world I would work a little less but financially we can’t pay the bills and have nice food or have any chance of a holiday so I need to work for financial reasons, but I am also a self-confessed workaholic! I actually enjoy work – my problem is trying to stop myself doing too much. I enjoy learning new things and I enjoy working with and meeting other people. I like ‘doing’. There has never been enough time in a day for me to do all the things I would like to try! This is going to be a challenge for me.

There are so many jobs I would like to do – always up for a challenge, me! Unfortunately now to get a permanent job I’m not sure I would be able to due to my medical records – not sure how I stand with that one.  So, to get around this I work on a zero hour contract which means I have flexibility without the guilt if I’m poorly or have hospital appointments.  I work at College supporting students which gives me variety every year and I absolutely love, the hours are really flexible and I get school holidays off so I can rest! Plus I get to work with an amazing bunch of people.

I’ve managed to do some waitressing at the Lion across the road (of course not at the moment!) – this is where my boys work too – just helping out when I am able and when they are busy. It’s always been on my bucket list to be a waitress – maybe when I was younger but hey never too late they say!  I love it so much! Although I’m not very good as I talk far too much to the customers, I can’t carry much and I keep forgetting things – I drive everyone crazy! But it’s so much fun. And work should always be fun otherwise you are in the wrong job! I really hope to get back there soon as I miss it.  Meanwhile I will just eat ice cream and have lunch from there.

At the moment, I miss work, I miss my friends, I miss so much, I wouldn’t miss it so much if I was more able at home, but I will get there.  I am getting there gradually I am just so impatient! I am really good at finding new ways to do simple things meanwhile! ha ha!

So back to the assessment. I’ve never had one before so I didn’t know what to expect. But the guy, James, was kind and understanding. He basically just had to go through a questionnaire on his laptop and asked me lots of questions about my health and how it affected me – on good and bad days. Luckily he didn’t mind me relaxing on the sofa as I still can’t sit very comfortably still.

So, I don’t know if the PIP will still continue – who knows but I hope so. He thinks we may be entitled to some other financial help – like statutory sick pay from the government and maybe a top up on Phil’s wage now as he has had to change job to be able do more to help me etc. Phil got made redundant last year from the bank where he was able to work from home, which enabled him to take me to hospital appointments and help if I was poorly with the family.  But there aren’t many jobs as flexible in an office about now and there is no way he could take a permanent job in London full time.  So now he has set up his own business as a gardener and a general help around the house, plus he does some freelance IT work which is good for him as he has so many years experience and is so knowledgeable.  It’s flexible for us but we are having to cope on much less income.

Anyway I’m getting off track, PIP guy was here for over an hour and it was exhausting. But worse than that it was quite upsetting – it was a reality check for me of what I’ve had to go through, going through and what I will always have to live with. I missed out a lot and skimmed over bits (maybe to my detriment now to think about it) but it was still awful to go over and actually list. I don’t read my past blogs. I look at the medical stuff because I’m interested but I sort of distance myself from it actually being me. I don’t want to keep going over stuff as what’s done is done, but with things like this I have to. It wasn’t nice – I think that’s why I don’t like any of the counselling I’ve had as they always go over the past stuff – so negative. They need to do positive and forward thinking counselling.

Although I still don’t plan much in advance yet, I’m not sure if I ever will now,  make each day count and all that, of course I have aims and dreams but I’m still in the moment. This year I wanted to go SUP stand up paddle boarding, start the tattoo project, zip wire in wales, maybe a holiday somewhere warm in the winter time…. loads of stuff…. but in reality I’m aiming to get back to driving, swimming, dinner out with my family, a trip to the beach, be able to walk my dogs, do some gardening – simple stuff – one step at a time.

It was when he asked me about hobbies that it hit me as I have lots of hobbies and interests but unfortunately I can’t really do any of them at the moment.  That was sad.  But as I said, I will get there.  I will make myself. As soon as I can sit better I will be sewing some puppy toys!

At the moment I have to rest a lot still and it’s amazing how much TV I’ve been watching – Lorraine, This Morning, The Dog Whisperer and of course Love Island – so addictive! Dani and Jack are our favourites.  Never watched before but absolutely loving it so much!

Magazines have been great too (thank you Rayner!) as I can flick as reading is still tricky to focus but as soon as I can lower the medication I hope to get reading more again. Oh and I can water the garden and I play with the puppies as much as I can so I’m occupying myself pretty well. And on the subject of the naughty puppies I am getting very good at mopping my conservatory floor a lot after they jump in the pond and come skidding through and run around! I think of it as gentle self help physiotherapy – especially for my arms.

So it also made me realise how much I can MAKE myself do and how much I have adapted.  One of my friends said to me the other day….

“Your problem is you make so sick look so good!”

Which is so lovely, as of course I wouldn’t want to actually look how I feel.  Can you imagine that? So if I actually look poorly then I really am feeling rubbish.  I’ve always loved customer service! Hey, I wanted to be an Air Hostess but I wasn’t tall enough back then! ha ha! Why spread the pain and misery to others? Think Disney and keep smiling when you can! But this means only my closest family and friends really see what it’s like to live with me and to be honest I think they get as frustrated as I do.  Like when I had to ask Lewis to take my socks off the other evening because I just couldn’t reach them! He has promised that when I am old he is not going to look after me! ha ha! Thanks Lewis x love you too x

One thing I did ask the PIP guy was whether he had come across anyone going through anything similar to me as in coping with after effects of cancer, side effects of drugs, trauma to body like fibromyalgia pain etc etc, and, if so, how they coped and what they did? I don’t know what I expected? Some new idea? Some amazing new way of coping, a magic wand??? No, what he said was that……

“Very few people have a mindset or drive like you do……most people in your situation would not be able to work and would be quite depressed”

Poor people.  I felt quite lucky – so after all it’s good to be a little crazy eh? I think even if I lost my legs I’d find ways of doing things. When I’ve been at my worst……. being hospital/bed/chair/house bound the last few months I’ve still been busy some how – maybe it’s just how I am. In fact I have the opposite problem! I want to do too much and I find each obstacle a challenge.  I am surprised I wasn’t better at competing in sports or against anybody, but I can compete with myself? Strange.

Changing the subject the other thing I’ve realised this week was how we view ourselves – Visually.  I have had everything ‘womanly’ taken away to save my life…. my breasts, my ovaries, my hormones,  even my nice stomach and pretty good arse if I say so myself, and now my thighs are painful and dented. At least my hair has grown back so that’s a positive. I have very a numbed distant sensation over most of my core body, thighs and right arm.  I find it really hard to look at myself in a mirror unless it’s to assess my scars and healing. Not that I was perfect before and I didn’t stand in front of mirrors much anyway but it’s just horrible now. In clothes I’m ok – again – I can ‘look’ fine on the outside and I know what I can wear and what I shouldn’t.  But underneath I’ve been sliced up pretty good and proper by a samurai warrior! aka my plastic surgeon! albeit as neatly as possible and he’s saved my life so far and done an amazing job – well done Mr G and his team.  I know I’ve had to do this to stay alive and I know clothes can do wonders and I know I’ve had my children, I know it could be so much worse, but it’s still hard.  Hence why I feel the need to have tattoos – not to camouflage, but to embellish what I’ve had to go through to get this far and to just pretty-up for myself.  Delicate flowers and butterflies! This is the plan to help me visually. It’s good to have a plan.

So 3 1/2 years since diagnosis and it is still so tough but I’m starting to see an end to the surgeries – hopefully just maybe one more small one? Fingers crossed.

It’s been a hard old slog so far and very gruelling, not only on me but all my family too. Poor Freya had a bit of a meltdown at school the other day – it’s just so much.  She’s ok and it was good for her to have a good cry and get it out. Bless her.

And Mentally? I had to find a reason.  And I believe that getting cancer and going through everything I’ve been through was so that this PALB2 gene could be found – I feel I have to look at it this way.  If they had removed both my breasts at the beginning I would not have had everything else happen and this gene would never have been found when it was.  Or not as soon anyway as the tests didn’t exist and we may never have been eligible to be tested.  I believe everything happens for a reason, even the really bad stuff.  So to get my head around all this mentally I believe someone had to go through all this to help others and if it wasn’t for this then my family wouldn’t know about the faulty hereditary gene.  And unfortunately that someone was me.  But would I have chosen anyone else? Of course not. We are privileged to have this knowledge as so many people don’t.  We have a heads up! Me getting cancer could mean that the rest of my family, and extended family don’t get it – it could save my sister, and even my own children if any of them test positive.  Either by being tested, closely monitored or have the option of risk reducing surgery as Michelle (my sis) is opting for.  That’s what keeps me going. That’s how I cope mentally as I have a reason now. I told my kids it’s like jumping in front of a gunman to save them.  I would do that, I would somehow dive across all of them like some amazing stuntwoman. Wouldn’t any of you too? I would honestly go through all this again if it meant I could save them.  It’s called being a mum.

And it’s the little things that help too and make you laugh…..

Like the other week when I was laying on the couch in hospital in huge amounts of pain having my stitches dug out of my thighs – so much pain! Bad memory and experience – no pain relief.  Phil doesn’t usually come along with me but I asked him to come in as I knew it would be a tough appointment and sometimes even I need some support.  Anyway, afterwards he told me that while I was laying there all he could see was my thighs while the surgeon and nurse were digging around, and he said my thighs looked good!!!! OMG! Random!  He better not be getting any ideas! No way! ha ha!

To me I see pain, scars and distorted legs – usually with a doctor of some kind looking closely – but he thinks they still look good!!! Wow! Not sure if that’s good or bad. What’s that saying? “Beauty is in the eye of the beholder”? It is nice he can see through the scars and pain and horrible stuff – it must have affected him to watch me go through all this too. Maybe not the right moment to be assessing my thighs though!  He’s not a man of loads of words when it comes to feelings so it’s been hard for us and I’m sure there are so many other people in similar situations.  I hope we are strong enough to keep getting through this together as we have come so far – I suppose that’s what marriage means. And as a couple we need to adapt to how everything has changed for us too.  It’s a bit like when you have a baby – things change from when you were just a couple and you adapt. I just hope we can cope with the changes long term and what we’ve been left with after cancer.

I’ve also had 2 hospital appointments this week.  Firstly with Dr Liptay-Wagner, my breast consultant.  It was good to see him.  He’s a genuine, down to earth guy and I have a lot of respect for him – he took over from Dr Chakravorty.  He doesn’t promise anything or fob me off.  He and Mr Griffiths work well together. They are the ones that have had the job of picking up the pieces and sorting out – bit like the kings men in Humpty Dumpty.  The last time I saw Dr Liptay-Wagner was as I was going into the operating theatre for my last surgery to sort my legs out.  I had a quick hug to say hi – I couldn’t even remember if he was staying.  But I found out he did and assisted as a bonus as he had another surgery after me.  It helps that he knows exactly what’s happened – it’s all about communication and so often it doesn’t happen in the NHS especially between hospitals.  I am my own project manager most of the time but it really helps me when I get good people helping me.

So as usual I stripped off again – this is so normal for me now too – I don’t even bother with a gown and my clothes are easy to get on and off. I wear a lot of jersey as it’s comfortable now.  Again it’s amazing what you get used to doing but I still don’t like it.  This time only to my underwear as I just needed him to trim off some stitch threads sticking out and check my wounds and some scar tissue lumps in the new left boob.  Bless him, as soon as he saw me standing there he said I looked really good in underwear! Obviously in a professional observational way – meaning my new boobs looked even and scars were healing etc.  I’ve uploaded some pics under the medical pictures page as could be useful for some of you to see what can be made a little better (thank you Matalan!).  I’m good at camouflage and I know what works with my new body.  It was nice of him and it meant a lot – it makes such a difference when a doctor comes across more human and not all strictly professional and distant.

Anyway, results of this meeting.  He is referring me to the Pain Team back in Colchester to try and get on top of the pain I’m still in and keep me monitored.  The long term plan being that I can come off most of this medication and get my body to release it’s own endorphins to keep on top of the pain by exercising – that’s my plan anyway.  But I have a bit of a catch 22 situation at the moment.  But I’m on the case! Again thank you pharmacy job for my medication education!

He is also going to try and get a written update from Mr Griffiths and Physio in Plastics in Chelmsford to be able to get me transferred to Physio and Hydrotherapy in Colchester.  This could be a challenge in itself so no promises.  We know that all the other complications I have like the fibromyalgia and hypersensitivity etc has just made everything so much worse for me.  We had a good chat.  I like this guy.  Let’s see what he can sort for me as this is the NHS and we know all about waiting lists.  Luckily I’m doing my own exercises and rehabilitation the best I know but I need some professional help really.

Second appointment this week was with Mr Griffiths for a checkup after surgery.  This was short and sweet as so crazy busy there again.  He was really happy that none of the scars had opened and all looked good.  He confirmed he will need to tweak the new ‘thigh’ boob later in the year or so.  But with my currently state of little fat there will be no point in fat lipofilling as I have none worth while. Plus it’s super painful and obviously my body probably would not like this pain wise!

I told him I was still in a lot of pain and that my thighs literally felt like the surgical team had enjoyed a party in them – in my head I meant hands dancing about in my thighs and pulling muscle and cutting and glueing and whatever.  Everyone else – Phil, Mr Griffiths and Nurse giggled and took this to mean something else a bit naughty! NO! How can people all think so differently? But everyone laughed so that was good. Laughing is good. They will remember the ‘Thigh Party’ moment I am sure! ha ha.

So great news is that he doesn’t need to see me for another 3 months as I just need time to heal.  Then we will discuss what’s next but he will put me on the list now and hope to fit me in about a year I expect (he said 6 months so I usually double this estimate).  Unless I need to see him before of course.  It’s nice when appointments are spread out – it means good things!

More fantastic news is that he said I am able to go swimming and gentle yoga – ok walk in water and a lot of corpse pose and breathing! But gentle does it and I will get there. Soooooo happy!  Needless to say I got Phil to drop me at the Essex pool this morning – omg the water felt so good.  Just being weightless immediately eased some of the pain.  I managed to walk a few lengths, and a very slow back stroke, and to float, and slight breast stroke arms/doggy paddle mix with up and down legs slowly. I tried a few things.  I did some stretches in the water too.  I hurt when I got out as my body felt so heavy but it felt so good to actually start getting back and doing something.  I will be taking it easy so don’t worry!

What else?

Phil and I managed to get a sneaky lunch together with the 4 spaniels across at the Lion.  I can lay on the sofa on lots of cushions and eat pizza and ice cream. We are so lucky to live opposite such a great place….  although we are a little biased!

Best of all the sun is shining – we won’t get a holiday for a long while yet but I have a beautiful garden, the sky is blue and we’ve taught Dillon to dive into the pool under water!  Cool doggo!

So now I just need to try and get my fitness back.  Can’t wait to be able to walk the dogs again but I think this may be just round the block to begin with.  Going to all take time but I feel positive and driven.

I will get there little by little and hopefully back to some sort of normal, albeit adapted yet again.

I’ve started by getting my nails painted… so pretty and sparkly….

Thank you all for all your messages of support, offers of help, lovely gifts and just being there for us.  This is when family, friends and living in a village is so needed.

I found all the cards everyone has sent me since diagnosis….. so so many! Thank you x

Now I’m off to get my hair trimmed! This will be interesting seeing as I can’t really sit down for long without more pain! But needs must and I’m looking like a scarecrow! x

Meanwhile I’ll leave you with this little borrowed quote…..

……and there are so many things you can use as the light to keep going.

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Saturday 23rd June 2018

Considering what I’ve been through these last few weeks (and I’m talking just these last few weeks, not the last few years!) I’m doing ok…….ish……very slowly….but omg this has been so much worse than my experiences of having babies…..

Little re cap….

I’ve been in hospital and had a TUG Breast Reconstruction on Tuesday 8th May (mastectomy removal of left boob and stuffed with inner thigh flesh and small muscle).  Then I’ve had to have another op to re open the new boob and seal off small bleed and remove a hematoma (blood swelling) on 14th May – see medical pictures pages for the gory stuff.

Then come out of hospital on 17th, but unfortunately had wound breakdown and seromas (fluid build up) of thighs that prevented healing. Proper zombie stuff (again see medical pictures page for gore)…… this is me dressed as zombie for my 40th birthday party – little did I know what was round the corner eh! My inner thighs looked like great special effectswith all the ooze and stuff but unfortunately it was all too real! So Mr Griffiths tried the vacuum pumps to draw out the fluid and he stuck needles in to draw out a few times too, he cut away, he burst, I religiously wore the surgical pants, dressed the wounds to help heal, ate well (I even managed to get hold of green foods in hospital!), rested lots, everything I was told to do and more…….. but in the end I needed a third surgery to sort out.

So on Tuesday 5th June back into hospital yet again.  Had op to cut all the bad stuff out, sort out and sew up with proper strong big black stitches.  Had the Vac Pump on again with loads of other tubes – I was like tangled set of christmas fairy lights.  But on 9th June I had it removed so thought I may as well try and get out of bed and make my way to the toilet! So lucky Phil had popped in to see me as that was an event in itself. I won’t go into details now.  Let just say that it’s good Phil is strong to catch me!

Missed our 19th wedding anniversary on 12th June – rain cheque on that one Phil Britten! If and when we get our 20th I really would like special please! And not spent in hospital hopefully.  Ha ha x

So I won’t be joining the Walking Dead cast just yet unless I use special effects as I do like a bit of horror artwork !

So not only did I have a tweaked boob (all fine now), a brand new thigh boob that was sore and healing -this has all taken well and not died – yay! – lets keep reminding ourselves of the positives.  The killer cancer boob has gone – byeeeee killer boobie – another positive.  But I will need a further small op to re adjust much later as it’s very lumpy bumpy and will rub, and looks quite bad to look at still, but from a surgeons point of view it’s great as it didn’t die!  If I am going out and need to look a bit more rounded a bit of padding can work wonders if I need. At the end of the day I just want to be able to stretch enough to swim and yoga. Flat is ok.  I showed one of the older ladies I met in hospital – as you do to each other – and she said “so when will you have reconstruction?” ha ha! I told her I had to compromise and this was done! So funny.

My chest has been so painful due to the connections of the 4 vessels and removal of a part of my rib.  Again this is healing and not so painful already so long as I am careful – no press ups or planking! Seriously though – not much at all if I am totally honest. But my thighs have been overriding this recovery and I’ve had no choice but to use my arms much more than lifting a kettle or a puppy! More like lifting my own body weight! I am so glad I am not huge! How on earth would a rather larger person do this???  I am very grateful for my good stomach muscles, my strong arms and so glad I exercised before all this. Done me good now!

On my second thigh lift Mr Griffiths put in big black strong non dissolvable stitches.  Good to hold my flesh together to make sure it all sealed this time and the stitches didn’t disolve before healed. Not so good when you have to have them removed though as I found out on Monday – like lots of wasp stings in my groin.  So on Thursday I pretty much begged Mr G for him to remove the stitches. I must admit that sometimes I forget that I am not his only patient! He had a very busy clinic. I must have looked as upset as I felt as luckily his assistant surgeon Charles agreed to do for me – after a bit more begging.  He had his magnifying glasses and a nice sharp scalpel. I just had to stay very still. And get onto the couch -believe me this is a feat in itself!  Each stitch had embedded into my skin so he had to literally dig them out and cut them – it felt like deep splinter removal.  So so painful. No pain relief.  I could have really done with some! But I was as brave as I could be – I didn’t scream or cry or move – although my leg did decide to uncontrollably shake at one point so the nurse had to hold for me.  It hurt so much even I couldn’t chatter through this.  Usually chattering or watching gets me through most things – not this.  Ouch so much.  Reminded me of removing lots of bullets in movies.  Phil was with me which was nice for some support although he used his time wisely to pick his own splinter from his hand! ha ha. Seriously, not much he could have done though and we’re not the holding hand type – bit like childbirth! But the stitches are all out. One more step along the way. Wasn’t there a hymn we used to sing in school???

So healing….. of course I’m using my essential oils to help heal these wounds……helichrysum, copaiba, lavender, frankinsence and Correct X cream. The helichrysum stops bleeding wounds amazingly!

Now? I am extremely sore but that should heal nicely in no time fingers crossed. Really hope nothing splits or opens again. I have swelling in my thighs and bruising which means my legs are still so very painful.  My leg muscles will gradually need stretching as so tight and I’m doing some very gentle yoga stretches but not managing much at all. I am wearing the compression pants to try and help reduce the swelling too- not great in this hot weather but I am determined to do as I am told. I also have a nerve impingment (we think) which has been caused due to my leg positioning during surgery.  The medications will help and I’m massaging but the physios and docs think this could take 3-6 months. Just another thing to contend with and this is making walking even more agonising.

I’m experimenting with some natural pain relief too ….. early days but promising results so will update you soon…. copaiba essential oil dropped under my tongue, massaged on legs and drank in tea.  Oh and I have a little plant I’ve been trying in tea too. Made me sleep a lot! Will keep you all posted on results as can only test properly when off conventional pain meds.

As for pain…..I still can’t sit upright in a chair – I have to lay in a reclined position. I haven’t been able to actually sit on the toilet for a month now! I am very good at hovering! Thank you Chair yoga pose – you have done me good! Anyone remember the old fashioned holes in the ground toilets in france? I am so there!

I lay a lot and I can shuffle like a penguin from my knees like the dance in Mary Poppins. No striding it out here yet. No swimming, no driving, no nothing much fun really.  In fact there’s so much I can’t do lets just stop thinking about that now as it’s all a bit miserable. I can barely do anything. It is very frustrating for me as I like to ‘DO’.

But I can speak, eat, type, watch Netflix TV, listen to music, read, I can stand for short times and vacuum within reason, put washing on and a little cooking.  I can dust waist level and I’ve managed to clean the sinks and toilets sort of – we are not talking steam cleaning here! ha ha. Luckily everyone is mucking in still. The family is doing good.

Puppies I can not do. Picking up anything I can not do – there is lots off random stuff on the floors that I have dropped – it has to stay! Luckily our house is like an amazing puppy playground and most things on the floor are dog toys! Puppy wee wee accidents are interesting! Definitely a knack to that one! I need a grabber or extendable arm like Steve Austin the Bionic man – I think he had a special arm??! Although I have managed to find some novel ways of getting things up off the floor – including myself! It’s very interesting in this house at the moment. Especially as Phil has decided to join me by injuring his back! We both groan a lot for pain reasons! It’s just fun fun fun here! Although I think I win this competition hands down so he can’t moan!

I am still waiting for nice fun lunches with friends to help with my recovery! I can’t wait to catch up with everyone. It’s going to be a while yet as I’m still rubbish company. Hopefully I’ll be able to make it across to the Lion in a week or so armed with pillows! At the moment I am lucky enough to get some random home deliveries of lovely food from our lovely chefs, thank you!

So at the moment I have to rest for an hour, then move for 10/15 mins – this works.  If I do too much I pay for it with more pain. If I lay too much I sieze up. No win. Oh and I tend to need to sleep like so much – think this is the medication too….

Dr Charles asked how did I sleep when he watched me try to get on the couch to take my stitches out on Thursday? good question Charles! lots of pillows (like loads!), concoction of pain meds that knock me out, and I can lay sort of on my side for short times now.  How do I get up? I roll! I have found little knacks in how to do things and what I am capapble of doing. Comfort is not a thing I remember. Having no pain is not a thing I remember now either. It’s the simple things I am appreciating at the moment.  Like LOVE ISLAND – never watched it before but I am surprisingly loving it! Beautiful people wearing beautiful clothes in a beautiful villa! and so funny….. just what I need!….Andnot I can not even think of attempting to do this Flossing thing!….. Strawberry ice cream helps too! The Lion do the best and I have a love for it! ha ha….. and M&S cookies! Did I mention I can eat?… Food + Love Island!

I am in so much pain but I am still happy, most of the time! How is that possible?

I must hurt as I am not even craving a holiday! I can’t think of anything worse than travelling – it’s agony just getting to the hospital at the moment! Don’t even mention bike rides! No no and no! I actually feel like I’ve done Lands End to John O Groats Cycle Ride! And No it’s not on my bucket list ever!!!!

Puppies and our dogs offer unconditional love and they are loving all the snuggles – especially Clover as she is permanently by my side like a little shadow….. but they are such hard work at the moment as I can’t do much….especially when the little ones are having so much fun in our pond! Not good puppies!

But our family and friends are helping – thank you all – and our Dinner Board now does Nathan’s whereabouts, puppy helper shifts, Me helper shifts and dinners for the family! Phil was great at Burgers – now the family need something different. So glad I can do Tesco delivery! Plus cheffy friends are good with ideas!

So it’s good to be home of course but it did upset the family a little – they had actually got into their own little routine without me – bit like a student house I assume – I think I missed them more than they had missed me.  I was so upset in a way but also proud of them for mucking in and coping. But all has now settled and I am home and it’s all ok for the moment and yes they did miss me. And yes, all this does put a huge strain on family life – especially when you throw in puppies and Phil being self employed and needing to work instead of hanging out in hospital and looking after me.

I have been asked a few questions.  Please ask away – and I will answer as honestly as I can….

Why did I have this op and put myself through all this?

The cancer is PALB2 hereditary – the boob had to go as the cancer would come back – if we had known this to begin with of course I would have opted for a double mastectomy and seen how I coped without chopping my stomach and my thighs. Some women would see a tummy tuck and a thigh lift as a bonus – I didn’t need or want either! Unfortunately it’s all been gradual and I need to feel even – I am strange.  So as I’d already had the DIEP recon last year it was worth the risk to try immediate reconstruction with the other.  Although it has been 10x harder than the DIEP!

How do I keep smiling and keep going?

I have no idea! I just keep reminding myself constantly of all the good stuff and it makes me smile. Try it.  Plus I think my mouth naturally has a grin most of the time – at the moment it could be the medication too! ha ha

Have I ever felt like I would like to be put down like a pet?

Oh yes! that much pain!! but only for a split second – I have too many things to keep me here for now! I have a huge bucket list and most of it I will never be able to afford to do!

Why on earth to I want to tattoo my body and go through even more pain?

This will be a long while yet – I need to heal really well, be healthy, design my tattoo, find a tattooist, and save spare money! That never happens in our house! Seriously, I look in the mirror and all my scars remind me of all the pain I have had to endure because of Cancer.  I would love to look at some prettiness instead.  We shall see. On the topic of tattoos, yes Nathan is embracing being 18 and has had his first tattoo – it’s pretty cool. Check out his instagram.

Why do I think I got Cancer?

Now we know it is hereditary.  But also triggered by stress to the body – I was working far too much, raising a young family, run ragged, exhausted, worried about everything – ticking timebomb waiting to happen.  A deeper reason? I think maybe I could be helping others get through some shite times too??? I hope.

Would I like to be a Nurse?

I did. Now. Not in a million years! Work so hard, underpaid, under valued, long hours and not flexible enough.  Plus I’m far too poorly and old now to cope. But I would love to work in the office in a hospital – maybe a medical secretary or a ward clerk – if I can keep healthy by next summer I’ll apply to do some bank temp work.  We shall see! I can type and answer a phone! Let’s hope I can sit by then eh!

That’s it for now. I need to catch up on Love Island, Rest and Recover.  Will update my medical pages with recovery wounds for those interested keep checking.

One day at a time for the moment still…… not planing anything yet x

 

 

Sunday 3th June 2018

Hanging out in hospital far too much!

Thought I’d do another update to try and explain what has been going on since being home – most of you will get the general gist from facebook but I’ll try and explain it all a bit better.

So basically I am still in a lot of pain – although meds are helping (oh they are good – just don’t expect me to remember much if you speak to me in the evenings!), plus I am getting used to it and tolerating more and maybe some of the pain is slightly easing but whatever it is I am adapting and doing ok (not good, just ok). It is horrible but I am coping and just doing day by day.  What else is there to do?  There have been some days where I actually wonder how the hell I am doing this and actually surprise myself.  And there have been days where I feel like no one really understands (except a very few).  And sometimes I even look at people and envy how they can go about their normal lives without any of this pain.  But I quickly push that away and think of lots of positives – as we know looks can be deceiving anyway.

I am also sure there is reason behind everything – reasons people cross your paths and you meet randomly. Reasons bad stuff happens. Reasons why bad stuff keeps piling up and up and a few times I have looked back and got a bit annoyed but what is the point – it’s happened, nothing can be changed and more importantly it is not just us.  It just feels like it sometimes.  And there are people going through so much worse – just doesn’t always feel like it when you are the one going through it. But at the moment I am thinking that I would rather me have to go through all this than my children or any of my family or close friends.  In fact I would not wish this on anyone. It is so hard.  But it could definitely be worse. Things can always be worse. And it is all relative what we can cope with as individuals – it is true what they say that all this does make you stronger – although I am weary believe me I am having to summon up a lot to keep myself going! But at some point may be there is a reason that all this is happening to me and it will become apparent. Just at the moment I’m not sure.

So as it’s been a bit ‘hellish’ lately so I’ve been watching Lucifer TV series!  Never fails to make me laugh.  You need a lot of humour to keep you going. And if you can keep smiling no matter what it not only helps yourself but it helps everyone else too. And I hope this blog is helping some of you.

The kids have been up and down but I have been asking a lot of them – sometimes they help loads.  Sometimes they go out or hide in their rooms!  I feel bad they have to deal with so much.  I even had to ask poor Lewis to help me dress my oozing wounds as he was the only one around – but he stepped up and did good. We are coping best we can. I am so proud of my family and I know I have been a bit naggy and snappy with everyone.  It’s just cos I hurt, I am fed up and so very exhausted. And the dead fly on the stairs for 4 days really wasn’t important. And it doesn’t matter that I can write messages in the dust.  And anyone that has a lot of dogs and family will know that you can clean a house top to bottom and within a day it is filthy again! ha ha! I am learning to ignore things like this – just like a teenager can!  Hey! I’m learning from the kids! It doesn’t matter! We are keeping on top of washing – we shake – no ironing! They can all work the washing machine and the dishwasher. But it is still never ending just keeping up with the basics and mix in a litter of puppies it sure is busy here!

We have a ‘puppy looking after schedule’ which has replaced our dinner chalkboard and I have no idea how the hell I am going to thank and pay back our helpers. It’s always the unexpected people that step up when you need! As Phil is self employed it is important he works to keep our family so when I’m in hospital it makes it so much more difficult.  Lucky we know a whole group of chefs that love puppies and work shifts! And of course you have your solid reliable family and friends that all muck in and a few extra surprise people too!

Thank you for all the nice things people have sent me to cheer me up….. so very kind and thoughtful of so many of you….

We have really really needed so much help and it’s the practical stuff I am mostly so grateful for as this operation has been the worst by far.  I literally am so limited. So especially thank you Donna who has helped me so much with my wounds (she’s a really good wound nurse!) as they need dressing so much she has taught me loads and popped round in her spare time to help me and to save me even more desperate trips to hospital.  I am getting so good at wound dressing now.

Thank you all so so much x ps kids say cakes help too! ha ha!

So I have still been visiting hospital a lot. And I mean A Lot! It’s like my second home really! And Phil is making a wonderful taxi driver and thank goodness his work is flexible – there was a reason he decided not to go back to an office job in London!  We have a good routine now – he just drops me off at the door! ha ha. Medical staff say ‘hi’ in the corridors and people recognise my name when I call up.  It’s nice in a way but not good really as means I’m there too much.

Take Mr Griffiths – we have been hanging out together in hospital far too much lately – on the other hand I really appreciate seeing him as it means he cares and is looking after me and he sees me rather than one of his team. I am sure he is a perfectionist who also works far to much – I am glad he is my plastic surgeon. So between him and Phil they are doing a good job of looking after me.  Phil drops me off at hospital Mr Griffiths slices bits of of me up, sticks needles in me and apologises a lot now – he says I am a good patient – I think this means I don’t scream!  I can withstand quite a lot of pain now.  I find so long as I can watch and he explains what he is doing I can actually zone out and blank my mind. Strange I know but it works.  He is also seeing far too many bits of me – maybe more than my husband! I have never had my arse looked at this much ever! ha ha  Luckily in a strictly medical way.  I am sure he just sees me as a piece of meat that needs chopping or medical project that needs mending or a piece of art that needs tweaking? Who knows as he is very professional and doesn’t always give much away.  I suppose self preservation not to get too personal with patients otherwise would be so difficult when bad stuff happens. I am just so grateful he has a sense of humour especially as he spends a lot of time looking between my legs or my bottom or my new boob bumps!  Basically looking at me with very little on which is not nice for either of us.  Again I can blank my mind quite well now and I am sure he does too!

For example I was laying on a bed the with a couple of nurses sorting out my awful rotting flesh wound  (totally zombified as I actually have a hole where I shouldn’t have a hole that I can actually see inside my thigh (if you want to see the gruesome stuff go to the medical pictures page – with warnings of course).  I had to take my knickers off as quite often the wound oozes so much and there is a lot of mess, so there I was holding a bit of gauze over my girl bits with my legs spread! And in walks Mr Griffiths as he does – pops in and out – quite normal and casual. He had a great view (not) and looked up and said ‘oops, sorry’ then realised who he was talking to and continued ‘oh well, I’ve seen most bits of you now anyway’ or something similar! So funny! we all chuckled. Poor Mr G! I’m not sure if it’s good that we are the same age or not? This is so much worse than having babies! I don’t even get a cute baby at the end of it all! But incredible what you get used too!  And I do have adorable fluffy puppies instead- this is Parsley and Thyme who we are keeping. Cute but hard work.

So next?

Unfortunately the wounds on my thighs have broken down. The boob bumps are good – and the killer original boobs are gone now – there’s a positive! Still very painful but the flesh has taken so that means the vessels are working.  With the op I’ve had done a chunk of muscle has been taken from each inner thigh.  This has left a void – sounds a bit spacey doesn’t it?  Now most people may have some spare fat that would fill this and the skin would adhere and heal to this.  Unfortunately I just have a void with no fat.  Then to top this I may have a leaky lymph node that seems to keep filling my right thigh and making it wobble like a jelly (they don’t usually do this!) hence needing draining a lot with big needles as the fluid is making seromas (collection of fluid).  So now Mr G is going to try and repair me with an op on Tuesday.  First thing will be to open up my thigh again and clear/cut out the dead tissue that isn’t healing. Then inject some blue dye to show up what the lymph nodes are doing and see if there is a leakage – if there is he will seal it.  He will give my thigh a good wash out and then hopefully glue my skin to my inside tissue (I think it’s called fibrin glue) to help stop any accumulation of a seroma after surgery again.  And if all goes well tidy up and sew together – hopefully nice and neat and not too tight otherwise may open.  He will also take a look a my left leg as I have a couple of open wounds there too but not so bad – we shall see.

Don’t diet! you never know when you may need some fat!!!

What can I do? Well I am resting as much as I possibly can but I also need to move to keep my circulation good. Catch 22 as walking makes the wounds move – so I’m walking like a penguin from my knees a lot! Stairs are interesting!

I am also eating as nutritionally as I can to help myself heal, although I have a few allergies and intolerances against me – thank you chefs for keeping me well fed:

Protein: Chicken/turkey, beans, eggs, milk and yogurt

Vitamin C: Citrus fruits and juices, strawberries, blackcurrants, tomatoes, peppers, sweet potatoes, spinach, raw broccoli, carrots

Vitamin A: Dark green, leafy vegetables, carrots, sweet potatoes (beta carotenes), kale, spinach, berries, eggs,

Zinc: Dark chocolate, chickpeas, oats and garlic

and of course plenty of herbal teas and water to keep hydrated.  I’ve been suffering low iron so I’m adding liquid iron to my smoothies which has helped me feel so much better.  No one can say I’m not trying!

Although I don’t think cheesy puffs or crispy crackle cakes have huge nutritional values but I like them! ha ha!

We did get some good news to keep us going – my brother’s genetic testing came back as negative! yay! that means it stops with him there.  Nathan has his blood test this week so he should find out in about 6 weeks.  Fingers crossed!

So case is packed, help is scheduled for pups and I have been asking everyone beyond our world/universe/God/my spirit family/angels for all the help they can give me to get through this as I am needing it! So 3rd op, in 3 weeks, here I come.  I can do this – with a little help. Please be thinking of me and my family and wish me luck for Tuesday first thing! I will message as usual as soon as I can to let you know I am ok xxx

Sunday 20th May 2018

I’m back! Been 12 days since my surgery and it’s all been a bit of a blur but here you go…..

Monday 7th May – admittance day – all went really smoothly, unlike last time.  Phil came with me, I expected to be there hours and then come home to sleep but to our surprise there was a bed! So they advised me to ‘bag the bed’ and stay over so of course I did!  This made it easier as Phil could then go home to the kids and the puppies and it also meant I could relax comfortably and be there for whenever the doctors etc came to do all their pre op checks.  So no pressure on anyone.  I had said goodbye to the kids just in case they decided to keep me in so all was ok there too.  So I made myself comfortable.  Watched a bit of TV and relaxed.

Tuesday 8th May – Operation day – very early start.  All happens fast – I was up by 6am and had a nice shower and made the most of easily walking about.  By 7am I was drawn up (see medical pictures) and gowned and ready to go.  This all usually happens really quickly.  I suppose they have a schedule to keep, so when the surgical team is ready you are whizzed down quick as you like.  That’s quite fun in itself. You are taken down on your bed and usually quite fast which always includes some crashing into doors and various objects.  I think it adds interest and you’re quite safe the bed as all the guards are up.  I’d already had all my pre-op questions – they knew about all my allergies and intolerances etc.  I actually felt really calm.  I’d made best friends with my anaesthetist already (best to make friends with them as they are the ones that keep you alive and monitor your stats throughout surgery).   They went through everything that I was expecting to have done – always good to extra check.  We discussed paper knickers! ha ha. I knew they were filming and taking pics so I really didn’t want my girl bits or even my head in the pics if they were going to use in training! ha ha! And before I knew it I was asleep. Nice and smooth. I dread to think what sort of spread-eagled position I was in – a whole team of surgeons working on all different bits – both thighs, removing left boob, stuffing left boob, tidying right boob!  Can you imagine the surgical party going on around me! OMG! I have close up movies of the micro surgery connecting the blood vessels which took Mr Griffiths 5 hour alone to connect all 4 vessels.  It is truly amazing to watch – clever man and his team.  I thought the movie would involve more cutting and sawing but it’s all quite majestic and gentle.  Very very clever.  I have added some ‘stills’ to the medical pictures if anyone wants some gore! I now understand why my chest hurts so so much too!

So fast forward 8-9 hours…..

Waking up from a very long op is not so good.  Usually I have problems with extreme pain.  This time they couldn’t wake me up – it was almost like being in a coma I would imagine – I could hear stressed voices around me saying that I wasn’t waking or moving but I couldn’t speak or move even a toe or finger.  They kept talking to me asking me to move.  I wasn’t scared.  So I just drifted off again into my lovely land of no pain!  When they finally did wake me I couldn’t feel anything – which was quite good in a way. I was really concentrating to make my fingers and toes move but they just wouldn’t no matter how much I tried.  But worst of all I couldn’t speak! OMG! Not speaking!!!!  I remember them discussing nerve damage and a nerve consultant coming to see me.  But in the end the feeling starting to come back and I could wriggle my extremities.  I later found out that all this was because of the huge amount of anesthestic I had because of the long op.  So back to ward – still no pain – good good.

What a long night, soon I was in so much pain as the anesthestic wore off.  It’s all a bit of a blur really. Any meds they tried just made me so nauseous and sick and did nothing for the pain. My chest pain was so incredible I couldn’t move or breath. So sore and nothing was touching it and there wasn’t much of me that wasn’t hurting – maybe my toes? Not good.  I was in a high dependency unit, as everyone is from this type of surgery.  And the care from the team we get in Stock Ward (Broomfield Hospital) is truly brilliant – right ward means people that know their stuff – and it helped as I knew most of them from last year!  You have your own nurse to look after your every need!  I had a lovely nurse that was also interested in alternative and complementary therapies call Jenny – she was a beautiful and caring person who pretty much stayed and talked to me all night and of course did my observations all night long checking the transplant was taking, my blood pressure, stats etc – I actually remembered quite a lot of our conversations although she said I wouldn’t. She helped to take my mind off the pain and try and work with it rather than against it. I can’t actually believe how much pain I was in when I think about it now.

You have to rely on your nurse 100% as you are literally bed bound and can hardly lift your head and move a hand.  I had leg pumps on, a catheter in (wee!), IV fluids, 3 drains, heated blanket etc.  You get the idea.  Proper wired up! You slide down the bed and you can’t even shift yourself or move. It is tough being so totally dependant.  Must be so awful for paralysed people – makes you appreciate everything.

So unfortunately this pain, soreness and sickness continued for a while and I was in for a very bad few nights. During the day it was more tolerable as I could chat to keep my mind occupied – but night times were terrible – they tried different medications but it seems now that I cannot tolerate any of the opioids (these are the morphine based drugs that usually work wonders!)  So while in pain, meant no sleep too, and while being sick meant no food either as even during the day when I tried to make myself eat and drink I still threw up – which means really weak poorly me!  Not good. Nathan and Kiri came to the rescue and bought me in some sweeties, lemonade, wotsits, salt’n’vinegar crisps, raspberries and a few other crazy bad things I fancied.  Phil even bought me cheese and celery sandwiches! – bit like pregnancy nausea with strange cravings!  But I knew I needed to eat and drink no matter what as dehydration was not an option!

Luckily they get you up really quick so that meant as soon as I could get to the toilet the catheter could come out! Yay!  I could walk then and of course my legs hurt and my chest hurt but this seemed to ease the pain a little. I got very good at making myself hot chocolates at 3/4am!

Having had my thighs cut open, muscle and flesh removed, sewn up – oozing wounds and drains.  Then mastectomy on left breast and reconstructed with thigh tissue with part of my rib/cartilage removed with 5 hours of surgery to connect the blood vessels along, and then a correction tidy up surgery on the right side too.  Plus being sick so really weak – you know how awful it is being sick anyway but add that on top and it feels like the end of the world.  You need a lot of help to do anything.  And you can’t help but to form very strong bonds and reliance with these wonderful nurses.  One young Italian male nurse in particular I will never forget – his name was something Italian but he said we could call him Jack.  Bless him – he caught my sick a lot and helped wound dress far too much of me that a young man really shouldn’t see!

You have to carry the drains around with you everywhere – I had one in each thigh and one in my left breast at first.  It was about Friday when I was managing to shower on my own.  You have to be self sufficient before they let you home so you can imagine my determination!  I had so many dressings to contend with, plus the drains had to be threadled through my surgical compression pants and knickers! So like untangling fairy lights.  I finally had everything in order to have a shower – exhausted before I had started.  But little did I know while attempting to wash myself that my drains had all fallen over, twisted round the emergency cord and was ringing for help all on their own! I think every single nurse was coming by asking if I was ok! oops!

On all the meds you don’t quite think straight. Plus I’d had very little sleep due to pain still. So another shower incident I thought I’d gather everything and off I’d go and freshen up.  Now the towels are small!  There I was getting dried when I realised I had forgotten my clean clothes! oops! I wrapped all the mini towels around me, grabbed my toiletries and my drains and shuffled as best I could back to my bed. So funny. My this point my wounds were leaking everywhere too! Not a great experience but still funny now I think about it!

You get to know everyone in hospital really well.  We are all so vulnerable and needy and to get you through it helps to chat.  When you are in close proximity to people 24 hours a day you can’t help but get to know each other really quickly and everyone mucks in and helps each other.  Obviously I’d had my DIEP surgery last year so it was helpful to some of the other ladies to see me a year on.  Amazingly I met 2 ladies that also worked at Colchester Insititute who I will keep in touch with and see in September.  And I made some amazing friends in Jan, Audrey, Alison, Nathalie, Abbie, Janet, Hari (what an inspirational young lady), Cara and more lovely ladies – we tried to laugh a lot together through our pain and uncomfort! Laughing, coughing, sneezing is definite no no’s! so ouch!  I think you get to meet the bravest, strongest people sometimes when you are all thrown together.  I can understand how people made such close bonds in war time – or any disaster come to that! Humans are amazing x

Anyway, long story short, after a bit of trial and error and testing different meds my team realised I was a bit of a unique case and as usual wasn’t going to be textbook! So pharmacists and pain team meetings meant finally a drug combo that we got to work and they finally listened to ME! My short time at the pharmacy has definitely paid off tenfold! So the plan was to was to triple my Gabapentin dose for nerve/sensitivity pain.  A brilliant doctor had actually recognised that the surgery had triggered a fibromyalgia attack and the intense burning pain I had was the hypersensitivity.  I’d had to have part of my rib removed which had then made my rib and chest pain so intense.  For most of the time this actually over rode the incision soreness!  The way the body copes with pain is interesting. So they also gave me anti inflammatories – Diclofenac, omeprazole to combat the stomach problems.  Paracetamol as a baseline pain relief.  And Diazepam as a muscle relaxant to help relax and sleep of a night.  Yes of course I still hurt a lot but at least it wasn’t excrutiating.

Perfect! I was on the road to recovery, so I thought.

Unfortunately my new left boob started to swell and get extremely painful.  The bruising was coming out rapidly.  Over the weekend I constantly told the team how much it hurt – like an engorged breast and it was turning bright red and all sorts of coloured bruising – so ouch!  So by Monday night after a number of consultants had seen this – and been pretty worried. Mr Griffiths was called in from Cambridge. That night I was rushed down to theatre again with a haematoma – which was a blood swelling.  This again happened so fast. Bit scary too. Unfortunately my veins were weak and I was put to sleep with terrible pain as they injected me through my tissued vein. They had to hold my hand down.  Not nice at all.  But luckily it worked and I woke up with yet another new cannula.  My poor veins. All went ok – Mr Griffiths said he had removed the bleed, trimmed some of the muscle that had failed, drained some of the fluid and sorted me out.  The relief of pressure was immediate.  Although even now I am so very very sore. And 2 more new drains in! yay!

Our Mr Griffiths came to my rescue! 100% trust this guy….

So back from surgery.  They used a drug called Fentanyl (bit of hype with this drug with Michael Jackson etc) – this is still a manufactured opioid but it didn’t make me sick! And it took the pain away for me to actually get 4 hours solid sleep! Wonderful!

So onwards and upwards?

No quite but I’m trying.  This is me remember!

Still couldn’t go home as drains were still filling too much.  But one by one they were being taken out. I was making myself walk, eat, drink, everything I was told. I needed to get home to my family and fur babies.  I was starting to feel down due to serious lack of sleep and missing everyone. Mental health is important.

The main problem was my oozing bottom wound.  I had popped a stitch early on and it just kept oozing.  So in the end Mr Griffiths recommended a Vacuum dressing to help draw the fluid out and heal. You get very close to your surgeon when you are bent over and he is peering at your oozing thigh wound!  I am so glad he has a wicked sense of humour!

I currently am sitting here with it stuck on my bottom/thigh and doing a great job – well I am not sitting in a pile of oozy mess so all good!  Unfortunately I still have a few weepy wounds that I’m back to get checked on Tuesday.  And I am also anemic due to loss of so much blood during the surgeries etc – explains why I had been feeling so absolutely terrible.  No surprise really.  And in hospital there is no such thing as dark green leafy veg!  But instead of a transfusion – as my team of doctors agreed I had been through enough – it was worth getting me home to recoup and eat spinach! (and some iron tablets to help too!)

So beetroot, blackcurrants, raspberries, banana and spinach smoothies it is to boost my bloods and get my health and strength back on track.  Plus using my oils – mainly Doterra Frankincense and Lavender for healing. wonderful care packages of foods from my wonderful friends and family are helping lots as I can’t lift my Thermomix or a kettle or have the energy to bake. My little Nathan chef and his team at the Lion are helping out lots too!  I am so grateful for all the help that has been offered and given. And gifts too! practical help and food is the most needed help at the moment as Phil has to work and kids need to be at school (by the way Honywood have been so supportive and understanding which is something you don’t know about until you need it).  So not being ungrateful but no flowers please as I can’t lift the vases t sort them! ha ha. Garden plants nice as Basil has taken to digging up my flower borders while I’ve been gone! ha ha! And company if you don’t mind making your own tea and help with the puppies if you are good with dogs.

So what now? Wounds need to heal – my bruising is colourful.  It’s going to be tricky on my thighs because where the wounds are and I have to wear support pants 24 hours a day which means no air to wounds to compress the saroma fluid.  But will be getting checked regularly for dressings etc. Don’t you just love my new get up….. padded surgical bra, support pants – I had hospital ones but they gave me blisters on my inner thighs (ouch) so mum and sis got these from Primark for £5 and we cut the waistband – perfect. I also have to wear the compression socks to stop blood clots after surgery and I have the added accessory of the vacuum pump I carry everywhere….. nice!

So lots of hospital appointments still – wounds, check ups and physio.  Lots and lots of resting and sleeping and watching TV, reading magazines and puppies of course!

More surgery still? Most probably as I look like a train wreck but I’m not thinking about that yet. I am in the Now, day by day, feeling very lucky to be home with my family. I am one lucky happy lady (albeit still in huge amounts of pain).

Will keep you all posted xxx

 

Monday 7th May 2018

Hospital or End of the World?

It’s finally come! Today I go into hospital at 4pm for my op planning – discussing, signing in, drawing up etc etc.  This is where my plastic surgeon – Mr Griffiths – looks at me disappointingly when I haven’t grown a big wedge of fat for him to use in his sculpturing!  But he knows I will compromise – he can only do his best with what I’ve got and I know 100% that he will.  I have confidence in him.  So today will probably take a good few hours! Last time it took about 4 hours so I hope it’s quicker than that. I’ve just called up to see if it’s ok if I come home to sleep afterwards and then go back in the morning. Looks like this is a possibility as there probably won’t be a bed but they’ve just reassured me that the operation is going ahead so hopefully no worries there. But if there is a bed I need to bag it! This is the NHS remember!

Then first thing (about 7/8am) tomorrow morning I will go for my surgery.  This is removal of my left boob – risk reducing.  Yes, I could just have that removed and go flat but this would leave me with restricted movement which could mean I can’t swim or yoga.  So I have chosen to risk it and have mini reconstruction at the same time using my own flesh.  No stomach fat to use this time so I’m having what is called a TUG – this is using both my inner thighs.  It’s not done often but it is used on slimmer people.  Unfortunately I don’t know anyone that has had this done successfully but Mr Griffiths said he has recently done this op on a cyclist of similar build to me and all was fine.  So here goes! We felt it was worth the risk.  If all goes well in surgery Mr Griffiths hopes to tweak the right boob a little too as I have excess skin there.  But no promises. Just need to hope the micro surgery takes and no infections.

So these last few weeks I’ve been off work which is exactly what I have needed. I’m still not sleeping well because hot flushes are difficult in the heat – always something in my world! And of course I’m scared and anxious – although trying not to be.  But overall I actually feel more rested and my general body pain has eased considerably with the temperature increase and rest. So even though I hated giving in and being signed off, I know it was the right thing to do.

It has also given me the chance to play with these little bundles of joy….

OMG I love these puppies so much! They are so precious.  So obviously we are totally mad and are keeping 2.  Parsley, who is the little chocolate boy, and Thyme, who is the little black girl with white paws.  She is actually going to be Freya’s.  At this moment in time she is snuggled upstairs in Freya’s bed with her! I think this is how both of them intend things to continue! ha ha! Whatever keeps my family happy and at the moment they need happiness!

Clover has been an amazing mummy – feeding them so much! They are the biggest cocker spaniel puppies and they are only 3 1/2 weeks old! Dinner time is getting fun as we’ve just introduced them to puppy mush! And yes, they spend most of the time rolling in it, over each other and generally spreading it everywhere rather than actually eating it! But this is how they learn and it’s been great fun watching them.  Dill has been a very watchful daddy too – although Clover is very hormonal and protective and regularly snaps! Which of course he totally ignores as he adores his babies too. I am going to miss these little bundles so I need to get home soon. Luckily we have a camera set up so I can view so long as the wifi is working!

So what have I been doing?  Well of course I’ve been cleaning the house top to bottom, filled the freezer with food, washed all the bedding, sorted paperwork, listed passwords, you name it I’ve been organising.  It’s such a strange feeling.  I’ve kept busy to stop myself thinking about the op but I’m also organising my family.  It almost feels like I’ve been told the world is going to end tomorrow and I need to cram lots in before.  I made lists but of course I didn’t get half of it done. But I’ve done the important stuff.  I saw my family yesterday too which was so lovely, but also sad saying goodbye – just in case. I hate that bit.

So what does a regular to hospital pack? I thought I’d make a list to help others.

  • Surgery bras, underwear
  • Vest tops and shorts – hospitals are always so hot! Plus every limb will need access for drains, drips, meds, pumps etc
  • Flip flops for showers, but Birkenstocks are the best as you need to wear surgical stockings for ages afterwards.  I always get told off for popping my toes out!
  • Magazines (a good book too but I probably will feel too poorly to actually read it)
  • Phone, extra long chargers, iPad, ear phones, money and card (for tv just in case but probably not)
  • Toiletries – antibac body wash, toothbrush, paste, brush, face wipes, shampoo/conditioner, natural soap, flannel, lip balm etc
  • Essential oils for healing – frankincense, lavender, digest blend (always needed after an op), peppermint and orange and more, I have a whole bag!
  • Herbal teas! they don’t have them in hospitals!
  • Hair bands, clips, brush
  • Fleece blanket – much more snuggly
  • Hand held mini fan
  • All my meds! including boxes – then they let you self medicate
  • Slipper socks
  • Black lightweight dressing gown – I got one from Asda which was perfect!
  • Loose jersey trousers in case weather changes
  • One of the boys zip up hoodies!
  • Food! lots! I take in my own sweet potatoes as they are great for skin healing and they don’t mind cooking them if you ask, salt n vinegar crisps (I need to help with sickness), porridge pots, Miso noodle/soup pots (they are great and so nutritious), water bottles, flask to have hot water, straws, lemons, grapes, bananas, green and blacks dark chocolate, biscuits! I have staples – I will not starve!!! I am not going to The Island with Bear Grylls!

Basically I think that’s it.  I will be fine.  I just need to get tomorrow over with.  As soon as I wake up and recover (which I don’t usually do so well), get the pain under control and back to the ward I will put a message up on fb to let you know I am ok.

Wish me luck!

 

 

 

 

 

Friday 20th April 2018

I’ve been struggling recently.  As I let most of your know I had recent results from Bone and CT scans that have shown there is no sign of cancer causing the pain I am in.  This is fabulous! But it did show that my bones are degenerating, which means arthritis is causing some of the pain – especially in my spine, ribs and hand.  I seem to be getting progressively worse as time goes on. It’s the accumulation of everything piling up over time……

You start off with a diagnosis of Breast Cancer and that’s bad enough. But add on Chemotherapy, Mastectomy, Implant, Radiotherapy, Herceptin injections, Zoladex injections, Ovary removal, Medical Menopause Symptoms,  Side effects from medication, Joint Pain, Fibromyalgia bought on from trauma, Implant removal, DIEP reconstruction, Chronic Fatigue, Anxiety, Hypersensitivity, Nerve Pain, Degenerative Bone Pain (arthritis), More surgery, More pain, More recovery, More worry, Less sleep etc etc.

That’s all I can think of at the moment, sure there is more but even that little list looks so much. Scary isn’t it! This is what I’ve had to deal with these past 3 years and it’s ongoing. Of course I’m happy it’s ongoing, in a way, as most of this isn’t going to kill me – all this treatment has been to save me! It means I’m still alive. But add on normal illnesses like colds and daily life problems or worries, and this is a lot to cope with for anyone – even for me!  I have a good strong positive mind and I am really focused and motivated – I am an expert at ‘looking’ so much better than I feel most of the time and making myself do things as normal as I can. And unfortunately this works against me a little as I’m also a total workaholic. But I am weary and exhausted now.  Its been a long winter and I feel like I could sleep for 100 years!

So I’ve hated doing this but I need some time out to rest for a bit and get my strength back and ready for my next surgery. My doctor has signed me off work for a few weeks which now will merge into a few months. Needs must. And now the weather has warmed my bone pain has eased and I’ve managed to get some sleep – I’m feeling more rested already – I can do this!  Which is good as I have just found out that my surgery is booked for….

Tuesday 8th May!!!! OMG!

That’s not long! That’s in 2 weeks! I need to try and get well and in tip top shape to cope with more major surgery (see previous posts for details).  But this time it is mastectomy on left side boob due to PALB2 gene, so risk reducing.  Stuffed with fat from both my inner thighs (TUG flap reconstruction) which I’ve been trying to grow, and if all goes smoothly Mr Griffiths hopes to have time to sort out the other boob with corrective surgery. Wish me luck and please support my family over this time as I will be in hospital for a while and it’s going to be hard for them too.

We’ve had so much going on.  On top of this I had news that both my mum and my sister have tested positive for the PALB2 gene mutation that increases the risk of developing breast cancer – or in mine and my mum’s case another Primary breast cancer. This has hit my family hard. All very similar to the BRCA genes you hear of in the news. This has meant my sister will be opting for Risk Reducing Mastectomy and Implants to give her a chance of not getting cancer like we have.  She will be in good hands and hopefully this will be soon. Implants are fine if you don’t have to have radiotherapy afterwards!!!

We are still waiting for my brother’s results. This is now far reaching as my uncle (mums brother) will need testing, then on that result my cousins may too. Same for my brother’s daughter. Nathan has just put in for his testing too – great 18th gift eh? Please let’s have some negatives! Better to know but doesn’t make it easier.

So we need some positives to focus on and April hasn’t been all bad – of course I now have my surgery date which is good – scary but good!

Although we’ve had to cancel most of our socialising as I haven’t felt well enough, there was one event that I wasn’t going to miss! Nathans 18th Birthday! We had celebrations at The Lion and we all had a great time! For me, it was wonderful seeing everyone so happy and having my family altogether. I’d been saving up to pay for food for everyone and the Pizza’s were amazing -Ed the Patisserie chef made the biggest chocolate cake I’ve ever seen! It was yum and everyone got some and more to take home!

Afterwards the young ones carried on the party at ours until the early hours – like 4am!!! Needless to say we left them too it to have more fun – apologies to our neighbours but it’s not every day you get to celebrate your son’s 18th!

I didn’t even drink or stay up late and it took me days to recover!

Freya had her 13th birthday too – pretty quiet after Nathan’s celebrations. But she got the best present ever! Puppies!

Yes, Clover’s puppies have arrived. Bit scary as she was in labour all night long and still no puppies so we had to get her to the vets and they ended up having to deliver them by cesarean. They were too big for her to push out! She’s been eating like a Labrador! So we are pleased to announce that all 4 puppies survived and Clover is doing really well too. She is an amazing mum – very protective and she has bonded with her babies so well.

Freya has named them all after healing herbs, as we do all our dogs. 1 brown boy called Parsley, 1 black boy called Pepper, 1 black boy with a white chin called Sage and a little black girl with white paws and chest called Thyme. OMG they are so adorable and they are making me feel so much better already! ha ha. Puppies can help a lot! And you can waste hours just watching them.  They are making me rest! ha ha. Enjoy the pics……

All that in April and we still have Phil’s birthday this Sunday! What a month!

So wish me luck, please support my family, and I’ll see you all on the other side of surgery (walking like a cowgirl!) x

Saturday 17th March 2018

Oh come on Spring and hurry up!

I’ve got the tell tale signs of snowdrops, daffodils and this beautiful tulip which fill me with happiness. I love spring bulbs. But this weather is playing such havoc with my body.

We have gone from beach days to snow days and back and forth again – all this chopping and changing has not been good for me. And my friends that suffer arthritis or similar have all said they have been bad too, which I find a little reassuring that it’s not just me.  My doctor and consultants are arranging scans before surgery – just to make sure there isn’t anything untoward causing this level of pain so fingers crossed it is the weather or accumulated side effects of my medication.  Funny what I hope for now. Just so long as it’s not cancer come back as that would change everything.

So I’ll keep thinking of these beach days…..

Snow days are fun and beautiful too – the dogs love! Look at Clover’s snow paws – bless her x

 

But I prefer beach days – no competition there! I neeeed the beach! I think I must have been a crab in a previous life or something! ha ha!

I would say this has been the worst winter so far as pain levels go and I am struggling big time. Even putting on that smile and carrying on is proving difficult for me and especially this week as I’ve not only been trying to cope with my fibromyalgia and joint pain, but I’ve also caught this cold/flu virus which has knocked me for six. Literally! I was in bed for over 24hours! I literally didn’t have the energy to move at all. And to top it off poor Lewis – who has been so poorly recently with the same, now has the dreaded Norovirus! Not good in the Britten house.  So come on springtime….we need you – I want my family better…. we need you sunshine to keep us smiling and lift our spirits to keep on going!

So enough about the weather, now, healthwise.  Lots been going on.  Lots of meetings. Lots happening.

My mum, sister and brother are all getting tested for the PALB2 genetic mutation.  My family are also being used in a research study at Cambridge. Yay! pioneering family! I was also told that I was the very first person to first be tested negative with the first level testing and then positive under the new level of testing – it all helps others as this showed that it’s much more complicated to find.  Sneaky genetics eh?  Someone has to be the first as Dr Liptay-Wagner says!  I like the idea we are helping in research to help others in the future and our generations to come.

But at least now we know WHY I got cancer – this faulty gene is the reason.  The PALB2 gene is called the Partner And Localizer of BRCA2. It provides instructions to make a protein that works together with the BRCA2 protein to repair damaged strands of DNA and stop tumor growth.

It’s hard to understand (unless you’re a scientist of course!) but basically being tested positive with the PALB2 mutation means there is a ‘blip’ or an entry point that allows the cancer to then grow if the right triggers are there as my body doesn’t have the safety system to repair the gap quickly – as we know stress, trauma, illness can all cause a weakness to let the cancerous cells mutate and without the PALB2 gene working properly this is what happened to me.

My sister described the new tests as looking for a single red letter in a whole black and white book instead of just looking on a single page – the new test discovered this gene because it looked through the layers and sequences too – much more widespread and in-depth.  We are lucky our ‘blip’ has been found and it is reassuring that these clever scientists are discovering new stuff all the time.  I am sure there will soon be a cure for cancer and it will be more like living with a chronic disease.  I hope.

So as they now know what they are looking for the test can be done in 6 weeks for my family.  Each level at a time.  This gene is passed down in families from either parent.  But if someone is negative it stops right there – it’s doesn’t work by skipping a generation so that is good news.  So for example if my brother shows up as negative his children won’t need to be tested as it stops right there at him.  But if my mum tests positive (which is highly likely) then her brother (my uncle Dave) will then need testing for his family and so on.  Fingers crossed for lots of negatives! Same will go for my children – if they test negative then it stops there. Nathan will have the chance to be tested as soon as he’s 18, in a few weeks time. Scary, but he needs to know and better sooner than later.

Next surgery plan….

If you remember from last time my case still had to be discussed at the RRM (Risk Reducing) Meeting.  And as we expected it was all agreed that a Risk Reducing Mastectomy is needed sooner rather than later on my left side.  Ticking time bomb boob and all that! Having had breast cancer and now testing positive for the PALB2 gene gives me a 100% chance of having cancer (obviously) and 40% chance of a new primary cancer occuring.  No brainer for me.  So latest discussions come to conclusions of:

CT with contrast scans, MRI, Bone scans, blood tests etc before op and to help with planning – these have all come through super fast – next week. Impressive eh?

Surgery hopefully May/June says Mr Griffiths – he wants to get me in as soon as he can – so fingers crossed for soon.

Due to limited fat resources available Mr Griffiths has agreed to do a TUG flap reconstruction, and hopes at the same time ‘tweak’ my right reconstruction to try and keep more surgery to a minimum.

I have been easing on fat burning exercising and continuing to eat lots to grow some flesh.  He thinks taking a section from each of my inner thighs and stacking is my best option.  I can just about pinch more than an inch! ha ha.  And of course I will need to be realistic with my boob expectations. It’s never going to be a big a wobbly boobie! But a little bump is better than nothing and it will give me movement to allow me to swim and yoga. I can do compromise.

My left side hasn’t had radiotherapy so this is good as no skin damage to deal with.  Although this operation may have a longer recovery time because of the incisions being inner thigh and round to my bottom.  Also the blood vessels are shorter here than when taken from the stomach tissue (and before you ask, no I don’t have any more stomach to take as it’s already now my right mini boob!) So the vessels will need to be connected in my armpit.  Very fiddly! I am glad Mr Griffiths is off on holidays soon – he will be refreshed and ready to go! I did ask about using the flesh from my bottom but this isn’t the best flesh to use – apparently it doesn’t mould so well and is tougher on the rump!  Plus healing is more of an issue. There is an option of taking from my back but there really wasn’t much there either and that would mean no swimming.  So not an option. So inner thighs it is! Ouch!  I could be walking like a cowboy for a while over the summer! I am dreading this.  There are a few worst scenarios I’m trying not to think too much about.  What I do know is that I 100% trust Mr Griffiths and Dr Liptay-Wagner – I spend a lot of time standing in just my knickers with them.

So now I wait for the test results and for a surgery date as it’s another big one so will take some planning and co-ordinating with the surgeons diaries.

But to help with that wait we have Nathan’s 18th Birthday Celebrations to look forward to…….

On Saturday 7th April from 7pm at the Lion pub, Earls Colne
please join us all for a drink, pizza and birthday cake!
All who know Nathan are invited.

Plus, we think Clover could be pregnant with Dill’s puppies! Bit of a happy accident if she is.  So watch this space for puppy news.  Will be due on Freya’s birthday – best present eh? 4 puppies…..