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God works in mysterious ways

MHB God works in mysterious ways

“You are braver than you believe,

stronger than you seem and

smarter than you think”

Christopher Robin  – Winnie the Pooh

Today I should be in theatre undergoing my mastectomy, DIEP flap reconstruction and mastopexy but early this week, there has been a sudden turn of events which put the kaibosh on the last few week’s planning.

On Sunday as I sat at my dressing table getting ready, I noticed a rash on my belly.  It concerned me slightly and I thought what an inopportune time for a rash to appear but didn’t really give it much consideration; sure it would disappear.  It didn’t, in fact, it rapidly worsened spreading quickly across my whole body.  Angry red clusters  from nowhere also started to itch in the hottest summer since 1976.  I convinced myself I would be fine, took some antihistamines, applied some cream and got on with my day.

On Monday it was worse and by Tuesday it was quite alarming.  I saw my GP and then in the evening my good friend Rachel who is a GP with special interest in dermatology came over to have a look.  I love Rachel but had never planned on sharing my nakedness with her even though she has seen it all before.  She gave me some good advice, I stepped up my antihistamines, bought more cream and got into an ice cold bath.  I saw Jessica Ennis-Hill talk about how she prepares for races by getting in ice-cold baths – I think this is as close as I’ll ever get to being an elite athlete – I only lasted 22 minutes and came out feeling mighty sorry for myself.

Wednesday was my day of admission.  I was due to go in late afternoon for a couple of tests and then be admitted early evening.  I called the hospital yesterday (Tuesday) to tell them what was happening and it was no surprise when they asked me to go in on Wednesday morning for an emergency appointment.

I called Cathy, who dropped everything to take me to hospital in case my operation was cancelled.  When I arrived, the consultant took one look at me and said, it’s ok, I think it’s just the sun, it wasn’t until I took off my dress and she held her hands up that she realised the extent of my predicament.  What a nuisance!  After numerous calls to various consultants, I was greeted by a dermatologist who would give the final decision and his decision, was loud and clear.  The risk of surgery was too great; putting knife to skin could cause the rash to spread and who knows the outcome.  The plastic surgeon turned to me and said, “I am sorry my dear, it is cancelled”.  And that was that.

I felt so blessed that the dermatologist was on hand to see me.  Whilst I did not want the surgery to be cancelled, after all, I was in the zone, ready and prepared, the whole family were ready for this day, we’d been working towards it, everything was in place, I knew there must be a reason for God works in mysterious ways, his wonders to behold.

In situations that haven’t quite gone to plan (granted, perhaps not quite of this magnitude), like when we’ve been at an airport and the plane was delayed or the hotel room wasn’t as we’d expected or we were late for the theatre, Mark and I work together to find the good in the situation.  So yesterday, after I came home and I was reflecting on my new status quo, I thought it was time for a bit of creative thinking.  Here’s my list of why it has been good news that my surgery has been postponed:

The benefits of the delay:

  • I will be able to help to look after my dad who has been discharged from hospital this week
  • Some women who have breast cancer have been moved to the list on 5th July in my place, having their surgery early – what a blessing for them – their cancer will be out so much sooner than expected – yippee!  They are on their way to recovery
  • I will be able to take the children out on their last day of term as we do every year
  • More time to spend with my family without being partially incapacitated
  • A shopping trip with Adam is a must before I go in
  • The cupboard under the stairs will finally get sorted!
  • We may get to Wales again
  • I’ll get to see the sequel to Mamma Mia – hoorah!
  • There were a couple of dear friends I didn’t get to see before my operation and now I have the chance to catch up with them – I am so looking forward to Doyley’s tomato consommé
  • Look at the weather – need I say anymore! (Rash permitting!!)
  • I can lie on my side in bed without the constraints of stitches and more importantly have a cuddle from Mark without him worrying about hurting me
  • So many more yoga sessions to fit in and the delicious feeling of being pulled and stretched in different directions – I simply won’t be able to do this after my surgery (initially)
  • Walking the dog – given I can’t even lift a kettle with more than one cup of water after my op, walking the dog is a definite no no so I can make the most of it now
  • Going back to work as soon as my body is free from contagion!
  •  I was given a spa voucher for my birthday but haven’t been able to fit it in – I’m going to book an appointment tomorrow
  • Many more opportunities now to build up my tummy flesh which in turn becomes boobie flesh – bigger tummy means bigger boobs and given I’m prospectively going from an F cup to a B cup, I need all the extra meals I can get!
  • I can wake up a little longer and enjoy the body my mum (and dad) gave me, with all things in the right place and no crystal maze to work out

I have had an update from the hospital today (Thursday) to say despite their best efforts, they have been unable to reschedule my surgery for July and are unable to tell me when my operation will be.  I have asked if it could run into August and the nurse gingerly said yes.  The difficulty is scheduling a theatre session for the required length of time.  I pray it will be soon and that there is a way forward without delay.

For now my friends, I will go and ponder more benefits, the first that springs to mind is The Great British Bake Off, but honestly, I think I’d rather trade it on this occasion for two perfectly formed breasts like iced buns with a cherry on top and a glacially flat pancake of a tummy.  If only life were so easy!

Much love x

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My three peaks…finishing work, anaesthetic assessment and charity walk

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“A strong woman looks a challenge dead in the eye

and gives it a wink”

Gina Carey

Oh my word, what a week this has been. From the lows of Tuesday when I felt at the depths of despair, hit by the reality of the situation and all that was facing me; to finishing work on Thursday, and feeling the love of those around me; my anaesthetic assessment on Friday and the amazing clinical team that will support me and Saturday’s midnight walk, raising funds for the breast care unit where I will be treated in three days and a local hospice (though I have no plans on checking in there any time soon!).

Finishing Work

On Wednesday morning, I’d wondered if I would be able to go into work, I felt so emotional, but as with every day, going in has been a valuable distraction, something to focus on.  I am not ill, I am still the same person I was before I was diagnosed, I simply need surgery.  That said,  I do feel frustrated at the inconvenience it will cause, at the plans we can’t make both short and long term but like all things, I will get over it.  I am learning to surrender and for someone who likes to be in control of everything, adapting to my state of powerlessness is challenging some days more than others.

I had in mind that my last day in work would be peaceful and relaxing and I’d get off early but instead, it was full on and fast paced, just as I like it.  It was nearly 5pm when I pulled off the car park and I smiled, delighted that even on my last day, my day had been full and felt like I’d contributed and been valued. Honestly, it had been a perfect day. I was speechless – and that’s pretty rare! It started with the delivery of a seven tier chocolate cake with the aim to help me put on a little bit more weight in these final few days, I must be honest, that’s not going too well but God knows I’ve tried!

Chocolates, flowers; a goodie bag for hospital; a lavender plant and Phalaenopsis orchid; a Pandora’s box full of beautiful goodies which will all accompany me to hospital, that’s if the Lavender biscuits last that long; oil burner and ornaments; beautiful scripture verses which I will take into hospital and a bag of presents with very detailed instructions of when to open them from someone who I know would want to remain anonymous. Thank you all for your thoughtful gifts and the time you have taken to make my last day so special. You made me feel like a million dollars. I am a very, very lucky girl with so many wonderful people around me who have made the last few weeks much easier.

My Anaesthetic Assessment

We had been advised to allow four hours and naively, I thought we’d be away after two, I am after all, fit and healthy.   I had the following tests:

  • Bloods including Group and Save incase I need a blood transfusion which will be repeated on Wednesday (the day before my op)
  • ECG
  • Spirometer (because I am asthmatic)
  • Height / weight (for the umpteenth time

I am pleased to report that:

  • a), I am the same height (I am not sure why there is an expectation this will change)
  • b) after eating absolute rubbish, at my consultant’s request, to try and add extra pounds before the op for much needed boobie flesh,  I managed to weigh in an astounding 1lb more!!
  • How can it be that for the last ten years, I have tried so hard to shed those pounds  which have clung on to me in desperation and here I am,  trying to put it on to no avail!

I also met a member of the surgical team who went through my drug history and answered any questions I had.  As I was considered low risk, I did not need to see the anaesthetist which given how long we were there was probably a blessing.

What took up most time was meeting Tina, the Breast Reconstruction Nurse.  I cannot thank her enough for the time she spent with Mark and I on Friday.  I felt like we were her only patient, I wasn’t rushed or hurried at any point.  Instead we were actively encouraged to ask questions.  It was during this meeting that Tina set out in detail exactly what will happen from the moment I arrive in hospital on Wednesday until I leave, I cannot tell you as a patient how reassuring it is to be given this level of detail and in contrast to my mum’s experience who was diagnosed on Friday and went in on Monday and had no before or aftercare, breast care has moved on exponentially.

Midnight Charity Walk

I told my good friend and colleague, Jeanette my news.  She was devastated.  The following Monday at work she phoned and told me that she’s been chatting to Louise and they’d decided to do a charity walk wearing t-shirts with my name on the back.  I burst out crying, I was speechless that anyone would want to do that for me.  Now some how or other, Chris got involved but I don’t know how that came about.

The 10 mile walk was taking place five days before my operation and at midnight, but I couldn’t help but see it as an opportunity to raise money, so I signed up and bought myself a t-shirt with a pledge to raise £500, funds for the breast cancer unit where I am being treated and a local hospice.

I set about getting in touch with everyone in my phone list and asked them to sponsor me.  I am very grateful to those who were able to, especially when we all have so many competing priorities right now.  I have been bowled over by generosity.  I know I keep saying it, but truly, we don’t know how lucky we are.  People sponsored me who I have never met, what a gift of human kindness and every penny does count.

Saturday night was a fabulous, balmy night.  We arrived along with around a thousand others celebrating loved ones who had conquered cancer, some who sadly had not.  Memories were shared, tears were shed.  T-shirts were decorated with names of why people were participating and there was my name engraved on the back.  It hit home, my eyes welled.  You don’t think this will be you or for you. In 1998, I took part in the New York Marathon, wearing a heavily decorated bra (and scantily clad bottoms!) for the fairly newly formed charity WalkTheWalk.org with Nina Barough and again in London a couple of years later raising money for Breast Cancer – it feels like it has come full circle, though the challenge was far less ambitious this time.

The atmosphere was electric as one thousand pink t-shirts decorated the streets in the middle of the night.  Cars tooted their horns; late night drinkers cheered and emptied their pockets of loose change; families stood on street corners and clapped; many, many volunteers ensured we were safe, guiding the way and of course St John’s Ambulance for those who were ill or unable to complete the race.

And my £500 total – I smashed it.  Money is still coming in this morning and as of now, with gift aid (which is a 20% top up from the government), the total stands at £1604.00 and counting!  THANK YOU VERY MUCH xxx

Most importantly, to Mark, Gracie, Ben, Ad and Dad who I love more than you will ever know, thank you for your unending love and support.

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And the countdown begins…nine days to go

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Today it is only nine days until my surgery – a total right mastectomy with DIEP reconstruction and left mastopexy.  Fourteen years ago I tested negative for BRCA2 gene but in light of my age and mum being BRCA2 gene carrier, I am now being re-tested in case my result was a false negative.  If so, I’ll have a prophylactic mastectomy and hysterectomy but I’m not worrying about that right now.

Today, I had a CT angiogram of my abdomen which is used as a road map for the plastic surgeon, allowing them to identify blood vessels to be used during surgery.  I hadn’t realised I would need contrast dye and that it would be given intravenously though it was seamless, as was the scan. It is the first of a number of tests over the next few days. Next up is the anaesthetic assessment and then sentinel node biopsy the day before surgery, I can’t lie, I’m not looking forward to that!

Today though, it was the moments after the scan as I got changed from the hospital gown, my cannula still attached and I thought about the enormity of the task ahead. My eyes pricked with tears and I wished in that moment that someone was in the room with me but Mark was at work;  we’re trying to save his time off for my post op recovery; my mum – that is impossible, though I know she is here always; dad is currently in hospital recovering from his own surgery and my brother juggling visits between dad and worrying about me.  I collected my thoughts and returned to the waiting room pleased to see Mandy who came with me today.  I was grateful to see a friendly face but felt emotionally drained.

I tried to call my husband who was in a meeting. Later, when I desperately tried to talk to him amidst after school lessons, the children’s friends coming around and me dashing off to see dad in hospital, the moment had passed. It was at hospital then, visiting dad that emotion poured out and I sat next to his bed as he held me in his arms and the tears I have perhaps been refusing to let fall, finally came like a waterfall and with it, the guilt as I was leaving dad in hospital tonight worrying about me. A girl’s first love is her daddy and for me this is certainly true.

So now I am home and feeling more focused again, I have chosen this picture of a butterfly which has a damaged wing which I took at Pili Palas in Anglesey. After my surgery, I will have new body that will tell of a journey I have been on, scars I had not anticipated, one hip to hip, a new breast, no nipple but they will not define me. It reminds me of Amy Bloom’s quote, ‘you are imperfect , permanently and inevitably flawed. And you are beautiful.’

Tomorrow is another day xx

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My life unfolds in divine order

When I first heard the news, all I wanted was to have my surgery as soon as possible, especially given the first consultant I saw insisted on the urgency of my case.  Having an immediate reconstruction can delay surgery as surgical teams need to align theatre time.  Added to this, my plastic surgeon is taking two weeks leave but when I met her, she instilled me with so much confidence and I knew instantly she was the person, who with my oncoplast, would make a real difference to me.

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I have had to let go, stop trying to be in control and instead invest my faith in God.  In retrospect, the extra time has enabled me to gain more control over my emotions and I think I will be stronger when my surgery takes place as a result.  There have been a number of events I would have missed if my surgery had happened earlier in the month and I feel eternally blessed that I have been able to participate in them all so fully.

On Friday Mark and I went away for the night and stayed in the most luxurious surroundings and then yesterday we went to my friend’s wedding, we’ve known each other for nearly thirty years.

So the moral of the story, there is a divine order to life but you need to surrender to it a little because otherwise these blessed opportunities pass us by.

To Clare and Al – I wish you a lifetime of happiness together, all my love xx

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Oh for the love of sleep (and food)!

There are two things missing from my life right now – sleep and the ability to eat.

Most nights I am able to drift off to sleep.  That said, there are sometimes when going to bed seems to bring the emotional collective together and I am supercharged and hypersensitive as though the emotion has to come out RIGHT NOW and finally after crying like a child who has lost their favourite toy, I fall asleep through exhaustion.  The trouble I have is kerching – 4am, wide awake, thinking.  Not necessarily about what is going on, I’ve managed to control that somewhat, but I still cannot get a full night’s sleep.

Over the last week or so, I have managed to sleep in until 5.30am ish but I’m still feeling generally sleep deprived.  Work is a marvellous distraction and I am so grateful for the ability to go in to be useful and productive, not to mention the support of colleagues.

The other difficult I’m having is eating.  This is a longer standing issue for me as I have previously been diagnosed with gastritis which can impact on my appetite but combined with the stress of what is happening at the moment, I’ve seen numbers on the scales that I haven’t seen since I was 15.

I visited my GP who helpfully suggested (so I thought) very high calorie milkshakes.  That was until I got home and tasted them.  Each milkshake has around 330 calories and I have to have three per day.  They are pretty gross but better cold.  I figure each one is going to help in the search for bigger boobs as the plastic surgeon has already told me there really isn’t to much to go at on my abdomen.  Her departing words to me were, as she gently held my rounded tummy in her hands, “this is my play dough, give me something to sculpt with”.

So I have been sent away to eat, under no circumstances am I to eat salads and waste vital hunger on low calorie food, instead, when hunger comes, grab it by the balls and eat as much as I possibly can that is high fat, high calorie.  It goes against the grain but given I am a 32F now and have been told I’m likely to end up with a 32B, I’ll give it a go…I’ve nothing to lose except for a couple of cup sizes!

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Meeting the Surgeons – Oncoplasts and Plastics

Generally, I am a ‘fly by the seat of your pants’ kind of a gal which drives my husband mad but when it comes to something important like choosing which school to send the children to or planning an important family event or big holiday, I meticulously look at the detail, I want it to be as near perfect as can be.

It’s fair to say then, when you’ve just been handed the, p.s. ‘you’ve got DCIS, oh and it may be worse following surgery card’, that some of us will want to research it.  I was definitely in that group and in the three weeks from my initial diagnosis to meeting the surgical team, read hundreds of pages of carefully selected information. This was not to send myself into a state of trepidation but to be better informed and ensure that when I met my consultants I was prepared and had a list of questions, after all, your time with them is limited and extremely valuable.

I’ve had a number of appointments so far; I met a consultant first to hear the news and then was invited back a week later to have a chat with any additional questions I had.  At that point, I was referred to another hospital with a plastic surgery unit as I opted for an immediate reconstruction.  There I met with my designated oncoplast and a week later, plastic surgeon.  Some of the questions I had I asked at each visit and received multiple answers, this does not always help when your head is already in a muddle and you are searching for clarity.

When I arrived at my first consultation with the oncoplast, they had not received my mammogram / histology report so it was very difficult to answer any of the questions I had.  My advice would be to contact your consultant’s secretary ahead of your appointment to ensure they have all of your information so you come away with all the answers you need.

Another question that came to me during my appointment but I had not committed to paper was, ‘based on the histology, what is the chance of obtaining clear margins during the surgery’.

Here are the questions I took to clinic.

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I’m in a club I don’t want to be in…

Okay, I can’t lie, telling people has been so much harder than I’d anticipated and being part of a big family and blessed with plenty of friends, there have been lots of calls to make.

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Firstly, no one knows what to say but when you make the call, you’re not necessarily looking for them to say anything you’re just imparting information. What happened several times is that you end up being the strong one. By that I mean the person on the other end of the phone needs comforting about the news and you end up being the consoler.  In many ways, it helped me because it made me feel useful again and regain control.

During the next week, I receive numerous letters from various hospital departments asking me to be part of a new club, The Cancer Club, but quite frankly, I don’t want to be in this club, it’s never been on my radar.  I’m fit and healthy.  I practice yoga regularly, go walking and meditate every day so to be perfectly honest with you, having given it no consideration at all, (and I don’t think I’ll regret it), I’ve decided not to join and I’ve sent back the membership card in a large envelope marked Return To Sender!. A few weeks ago there was absolutely nothing wrong with me and I will not be stigmatised now with a label that quite frankly, I do not want.