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Six weeks in the life of a bionic boob after DIEP flap reconstruction

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“You are the only you … You are the best you.
You will always be the second best anyone else.”

Leo Buscaglia

The weeks have gone in a blur; there have been ups and downs; I have laughed and cried since I said goodbye to the only boobs I had ever known and my slightly rounded tummy.  I wanted to tell you about them here, what is it really like, how does it feel and ultimately, if I could do it all again, would this be the option I would choose.  

For those of you who may not have followed by story, the reason I wanted an immediate reconstruction dated back to my mum who had her first breast cancer – a mastectomy at 37  – when I was 8 years old.  It had always affected her and me though I hadn’t realised at the time.  I remember looking for bras with her, which in those days were largely unattractive; without built in pockets for her prosthesis, which must have added an additional trauma for her.  Her scar was pretty brutal and I only found out recently that it took a very, very long time before she was able to show my dad.  The psychological effects I will never fully understand but I do know they were there and I am sure exist for many others too.

Whether you are considering being Flat and Fabulous or a FlatFriend; a delayed reconstruction or an immediate reconstruction; my story is based on my own experience of having  been diagnosed with DCIS, which was later upgraded to invasive breast cancer, and opting for an immediate DIEP flap reconstruction.

Week One

When I emerged from anaesthetic, I was most interested to catch a glimpse of my new boobs.  With cannulas in both hands and swathed in a Bairhugger and half a dozen blankets, it was a little difficult to gain access but I was my usual determined self.  I had two boobs, they were both enormous from the surgery and dressed in surgical tape.  The plastic surgeon had suggested I would likely emerge from theatre a 32B to C cup, a shock from the ample bosom I had been used to.  What I looked down on was akin to Dolly Parton on a bad day and nothing like the teenage bras I had been preparing myself for; talk about under promise and over deliver!  I had very little feeling in either breast.  I had a right skin sparing mastectomy but lost the nipple and on the left side, a mastopexy.

The pain during this week was managed mostly by PCA, though I did have ibuprofen and paracetamol intermittently.  On a practical level, sleeping was aided by numerous pillows and so much better in hospital using the electric bed with the back rest tilted up and the knees elevated to support my tummy.  Essentially, I was sleeping in a rather unattractive ‘S’ shape that I found difficult to recreate when I came home.

Moving around was slow and certainly up to day five, there is a definite pull on my abdomen every time I stood up but by day six, amazingly, I was upright.  Everything felt very tight though and when I say upright, it’s not in my usual style nor speed.

Week Two

I was so grateful of our super king bed, else I would have relegated Mark to the spare room by now.  I am trying to replicate the electric hospital bed at home which is impossible so instead I had a number of pillows propped up on my yoga bolster behind me and a couple under my knees.  Trying to sleep on my side is not even an option so instead, I slept, as though ‘in state’ all night.  The pressure sores I had in hospital still feel sore.

I’m feeling pretty active and walking most days so much so that I decide to do away with my surgical stockings.  I put on ‘The Stripper’ in an attempt to give everyone a laugh but when I tried to take them off could neither bend down to take them off and then when I finally did, they were on so tight, the Burlesque moment was somewhat lost.  Put it this way, I feel more like Calamity Jane than an aspiring Dita Von Teese right now – I’ll put the feather duster back in the cupboard!!

Removing the dressings reveals the true extent of the scar tissue.  In some ways, the dressings hid the scars well and removing them left me feeling a little emotional about the finality of the situation.  It’s a bit of a bugger to be honest…my reconstructed breast being so much bigger than my other breast.  Nonetheless, I am happy with the result and I am very much looking forward to Christmastime and getting my nipple and buying beautiful bras rather than zip up corsetry.

Week Three

Emotionally distressing to discover I now have breast cancer and not simply DCIS as I had thought.   Lots of people talk about DCIS as being an easier diagnosis to deal with compared to invasive breast cancer but for me, having a mastectomy is not straightforward, emotionally or physically, regardless of the diagnosis.

It’s hard to get your head around the fact that your journey to health will be different to the one you had hoped for.  I still try to focus on the positive and how blessed I am in this situation; it could have been so much worse but lying in the arms of my husband, just the two of us, I cry at the uncertainty of what is to come.

I quickly pull myself together and after a few days, I am raring to go and ready with my game face on.

Feeling myself seize up somewhat, particularly around my midriff, I set about doing some yoga.  I try a gentle Downward Dog and then retract slowly realising that whilst I could get into position quite easily, getting out of it was as different story.  I opt instead for simple stretches, I can’t easily bend sideways -it feels like my stitches will unravel but I can move forwards.  My arms are another story, my mastectomy side feels very weak.  I am able to extend both arms above my head comfortably so I add Reverse Prayer Pose, and Cow Face Pose to increase my flexibility and I’m constantly reminding myself to draw my shoulder blades down my back .

The children both comment that I am able to lean over and tuck them into bed more easily than I had the week before and the surgery hadn’t been as bad as they had been expecting…progress!

Week Four

I’m missing driving and being able to hop in the car tootling off here and there, the upside, I am walking everywhere.  This week, I walk six miles in one stretch.  I come home and sleep for two hours.

There are so many drugs I have to take, I do like to try and combine them with an holistic alternative so have Vata oil burning.  I’m still taking Phosphorous 30c and a post surgical preparation available from Helios. Cathy arrived with a blend on aromatherapy oils as I am now allowed to apply anything I like as the wounds are closed.  It combines Rosehip, Jojoba, Vitamin E, Lavender, Frankencise, Elemi, Geranium  and Cypress oils.  I smell divine and sleep like a baby.  Amazingly, after a few days, the swelling in my bionic boob starts to lessen.

I am given a dressing down this week by the physiotherapist who tells me to ease off the yoga particularly the Downward Dog and instead improvise with upward dog and a little pilates thrown in. Her message is, ‘just because you can, doesn’t mean you should.’  I am left feeling rather disempowered and as though the exercises I am now doing are a backward step.  I have never been very good in the compliance stakes!

At the appointment with the plastic surgeon, I attempt to negotiate wearing 21st century underwear rather than the Edwardian corsetry I now find myself in; the answer, a resounding ‘no’.  I invest in comfortable Lycra and long to buy something more flattering from Chantelle.

At this visit, I am told I will have to wait some considerable time for my nipple – as though I am waiting for a longed for out of stock celebrity handbag.  It seemed fate had brought Clare with me to this appointment, my pan sexual, LGBTQ champion.  The plastic surgeon decided to refer me to the prosthetics department and so it was – with some girlie excitement and a little hysteria when the breast care nurse brought out a selection of nipples.  Clare thought she was in nipple heaven, I was aghast at the variety, big ones, small ones and everything in between.  And so it was, I am having my nipple cast – honestly, can life really get any crazier than this.  This is a casting couch of a completely different order.  It’s like Mrs Doubtfire meets Playboy.

I try lying on my side in bed; it feels as though all my insides are are simultaneously collapsing like a stack of dominoes through my abdominal scar.  My boobs are literally suspended in mid air and I need a cushion to support them for fear they will otherwise drop off.  I lie on the mastectomy side briefly and decide to give the other side a go but after a few minutes, it is too uncomfortable so I return to lying in state.  Mark places his hand gently on my abs, they feel so tight and frequently go into involuntary spasm, particularly when I go for a walk or if I’ve been doing too much.  It’s been quite a long time since I’ve had a six pack – let me clarify, I do not have a six pack, more of a one pack. It’s kind of integrated; completely flat but with absolutely no definition, unless you count the raised belly button and rather large slash across my abdomen.

Week Five

I know you shouldn’t compare notes but from what I’ve read, some ladies do seem to have quite a lot of bruising.  For me there has not been too much evidence on my tummy but my boob has suffered a worse fate, still looking slightly jaundiced from the labyrinthine like invasion as the microsurgeons pieced together blood vessels relocating them from one part of my body to another.  The point where the drains entered the breast still incredibly tender and when I lie on them feel bruised.

I try on one of my bras.  My newly lifted boob amazingly fits snugly as though nothing has happened.  The bionic boob is a different story, it spills out and despite my best efforts to push it back in, it’s a lost cause.  Wearing a bra is seriously not an option anyway, I can feel the wire chaff against my scars and I put it back in my lingerie drawer thinking how good Lycra looks on me.  How quickly we change our perception.

Emotionally, this week has been seriously compromised by what is happening with my dad who remains in hospital.  It is impossible to separate the two situations; two people; where love is at the heart.  Metaphorically, we are learning how to juggle; it’s a good job mum and dad taught us how to spin plates when we were young.

Week Six

My scars are healing well, they remain quite red and I do have to remind myself it is only six weeks since the operation not six months.  There is a tendency to want an immediate result and that of course, is not going to happen.

This week, I developed a weepy spot on my abdomen scar which was quite unexpected.  It only lasted a few days and went fairly quickly, something to keep an eye but not worth worrying about.

On the pain front, it is constantly evolving so now I have shooting pains quite often which the Breast Reconstruction team advised me were likely nerve pain.  What is tricky is not really knowing what is normal and not wanting to bother anyone with it.  I have contemplated seeing my GP to have a chat, however with approximately 3500 women nationally having a reconstruction I do not feel confident they will necessarily have the information I need, so I opt to crack on.

What strikes me is the numbness which does not change.  I have very little sensation below my belly button, in fact, most days, I’d say it is completely numb.  Sometimes I have my hand on my belly in bed and I am completely unaware it is there.  The same is true of my bionic boob and my chest in general.  I have quite a lot of discomfort/pain where the cartilage was removed during the mastectomy /DIEP.  There have been a few occasions when I have woken during the night with tingling in my right arm; it’s hard not to make associations with lymphoedema though I may have been lying on a nerve.  I have tried lymphoedema massage which is simple but effective; I’m sure it’s psychosomatic and try not to worry about it too much.

I consciously massage my scars twice everyday with oil or Aveeno.  I unconsciously massage them throughout the day in an attempt to make the scar tissue more pliable.  I hope I break the habit before I go back to work – I’m not sure how forgiving everyone at work will be if I start rubbing my boobs.  I found this practical advice about the benefits of massaging scars and how to go about it here.

The difference between my reconstructed breast and my original breast is of course they are made up of completely different matter.  If you put a potato in a sock it is going to feel different to putting a tangerine in a sock and that is the difference – breast tissue will never feel like tissue from your abdomen.  My reconstructed breast feels much, much firmer and more dense than my natural breast.  I have been advised to try and maintain my current weight as much as possible as the reconstructed breast will respond more sensitively to weight gain/loss than my natural breast tissue because it is abdominal fat – now that’s an incentive, I don’t want wonky boobs.

Sleeping is much easier these days and I can now sleep on either side without thinking about it although I do wake up if I’ve been asleep on my mastectomy side for too long.  I still sleep during the day most days.   The pain where the drains were still remains, it is very tender indeed, in fact there is a tenderness to all the operated areas if I’m honest.

I am desperate to hit my yoga mat but I know my body is not ready for it yet, particularly my abs.  Even the most basic back bend proves challenging.  Instead, I surrender to it, doing what I can do, recognising that for now, my body is simply not able to move in that way.  In the words of B.K.S. Iyengar, “Do not stop trying just because perfection eludes you.” I am a long way from perfection –  truth be told, I was no where near perfection to begin with, but I am enjoying trying.  This operation has made me re-evaluate what I can do and I know I’ll keep going until I get there and I will.

So, as I embark on the next stage of my journey, would I do it all again, yes, I believe I would.  Don’t get me wrong, given the chance, I wouldn’t have been diagnosed with cancer but I was and our lives have become entwined again.  I am so grateful to have been blessed with so many choices, to be Flat and Fabulous, or Resolutely Reconstructed and we’ve not even got to the number of nipple choices!  For me the right choice was to have an immediate reconstruction and I am very fortunate to have had so many outstanding health professionals to enable it.

There is still a long way to go, I hope you will join me on the rest of my trip…

Tootsie xx

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My road to recovery has taken a diversion…not rocks, just a few pebbles…

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“You either get bitter or you get better. It’s that simple.
You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down.
The choice does not belong to fate, it belongs to you.”

Josh Shipp

The 29th April 2018 will go down as one of those perfect days that you wish you could relive over and over like Groundhog Day.  It started with pancakes and much chatting at the breakfast table about the previous day’s events: go karting – which had provided a lot of fun for our teenagers and their friends; the unseasonably hot wall-to-wall sunshine which had reduced us all to shorts and strappy tops in an effort to cool down; walking the dog – her nose constantly burrowed in the hedgerows sniffing out rabbits; ending the day with a family meal at one of our favourite restaurants before coming home and my dad chasing the children around the garden with the hosepipe to squeals of delight and just when they thought they had escaped him and the water to be met on the other side of the garden by my husband with buckets of water thrown over them!  I had sat in a chair chatting with my brother, surveying the scene, watching it all unfold in slow motion and I remember thinking, ‘If this is the last day of my life, I will die happy.’

Fast forward twenty four hours and my secure world felt very different.  I could have never foreseen how just one day could have turned my world upside down.  Looking back now, from the 30th April, the day I had the diagnostic tests – the mammogram, ultrasound and then vacuum-assisted biopsy until two weeks later, when I received my diagnosis, were the most anxious time of the last four months.  Every day was filled with turmoil because in reality, based on the research I had done, I knew what I was facing.  

Before my surgery I had expected that following the surgery I would endure the same levels of concern, that I would be fearful of the biopsy results and what they would bring, what the future would hold but, surprisingly, I gave it little thought.  I knew it was coming up but whenever it came to mind, I let it go, more concerned with ‘the now’ than then.  Maybe that sounds simplistic but you have to remember, there is nothing to control in this situation, no research to be done because at this point, what is there to be researched?  So where does the worry come from…from the desperate desire to know – but there’s a possibility this only leads to more worry.  For me, it was easier to compartmentalise the appointment and deal with it on the day and that’s exactly what I did though I must confess, I didn’t sleep too well the night before my visit! 

My appointment was at 3pm.  We waited until a little after 4pm, it was interminable. Finally, the nurse called my name and I looked at Mark in disbelief.  “Please God, I will get good news and this will be the end of it” I said.  My surgeon was confident the surgery would be the final part of my breast cancer journey.  We walked down the long, brightly lit corridor and I saw my consultant sat at her desk looking at my mammogram.  I turned to Mark and said, “It’s bad news”.  He was dismissive but I knew in my heart there was no reason for her to be looking at my mammogram if she was delivering good news. She was going to show me something and that only meant one thing and it wasn’t good.

And so it was.  The pathologist found a small amount of invasive cancer.  I saw it on the path report – malignant.  It was a sobering moment and unexpected.  I cried.  I became the child again to my mum in this suitcase of cancer baggage, my mind working overtime at what this now meant, for me, for my children, for all the plans Mark and I had made together.  

My surgeons have collectively told me on numerous occasions, to my frustration, that because I had DCIS everything was going to be ok.  I did feel they were being condescending but I liked them and overlooked it knowing my emotions were probably playing a part in how I was feeling.  Please, I am an intelligent woman – don’t dumb me down! In this moment, their approach was making me very angry.

The consultant asked why I was so upset and I had to say it was in part because if my surgery had been carried out in line with the cancer waiting targets, I should have been operated on by 30th May – who knows whether that would have made a difference.

I quickly pulled myself together knowing that anger and frustration would not help, I needed to have a therapeutic relationship with my clinical team after all.  Now, I need to focus on what is next, not revisit the past and what could have been.  In reality, we will never know and it will not help heal me by building up bitterness and resentment.

What does it all mean?  Well, I want to list out some positives in this situation because I think in spite of my diagnosis, I have many blessings to count and I would like to share them with you:

  1. To the consultant oncoplast and her team for removing all of the DCIS and what we believe is all of the cancer
  2. To the plastic surgeon and her team for creating my bionic boob and giving my other boob a ‘boob lift!’
  3. To the pathologists for finding the small amount of cancerous cells in the first place which as a lay person seems like finding a needle in a haystack – thank you
  4. I have Stage 1 primary breast cancer not Stage 2, 3 or 4 so someone was watching over me there
  5. I do need radiotherapy but have escaped the need for chemotherapy
  6. The breast cancer is oestrogen-receptor positive so will hopefully respond well to hormonal treatment

There was some news which will delay my recovery somewhat.  I have thought about it over the last few days and I feel the same today as I felt on the day I was given the diagnosis.  I’m disappointed, it isn’t the news I had hoped for but it is part of my journey, part of the rocky road of life.

The key factor is the malignant cells were close to the remaining breast tissue.  In other words: the margins were not clear.  So for this reason, I will be having radiotherapy.  I am meeting my oncologist at the end of September to discuss a treatment plan.  I am also starting tamoxifen to reduce the risk of the cancer returning in my bionic boob and the contralateral breast.

Given my strong family history and the fact that mum was a BRCA2 carrier, (though I am not a BRCA2 carrier), I have now been referred to a gynaecologist with a view to having a prophylactic hysterectomy and salpingo-oophorectomy.  Whilst I appreciate I need to have the radiotherapy first, I really want to get on with things and I am very keen to have the surgery before Christmas if at all possible – that said, given how long it took to have my first operation, I am not sure that will happen.

Lastly, the oncoplast has written to the genetics team once again for further clarification about the risk of breast cancer to the contralateral breast now there is a diagnosis of breast cancer.  She feels in light of the diagnosis, there may be a need to undergo a left total mastectomy, i.e. the side which has just undergone a mastopexy.

Well my friends, you may be wondering what on earth there is to be positive about but there is.  If I have to have a left mastectomy now, it will almost certainly be skin sparing and nipple sparing…there is a slight issue over where on earth they are going to get the fat from to fill the bugger so more cakes and biscuits could be on the menu!  Currently, my options are an inner thigh or TUG reconstruction or I could consider implants.

If I am fortunate enough to have this surgery soon, I will have two bionic boobs and hopefully, no further problems.  There is also a possibility that if I have my uterus and ovaries removed and the second mastectomy, I may not need to have tamoxifen.  This may seem like a poor swap but at the end of the day, I need to take tamoxifen for 5, possibly 10, years so it is preferable to me as it will reduce the overall side effects I would have to go through.

Having this radical surgery now will hopefully drastically reduce my risk of cancer returning and who wouldn’t want to increase their time here; doing stuff that really matters; spending time with family and friends; walking and talking; making memories rather than filling that old tattered suitcase of cancer baggage that I’ve been carrying around with me for far too long.

Thank you for your love and continued support – Tootsie xxx

 

 

 

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My blessed surgical week and my first week at home…

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Before I start, I want to say goodbye to Auntie Joan who passed away on Wednesday morning after a torrid relationship with dementia.  She always had the capacity to make us laugh and that is how I will always remember her.  I wondered what quote she would want me to write in her memory and I thought she would smile at this…

“I am ready to meet my Maker.
Whether my Maker is prepared for the great ordeal of meeting me is another matter.”

Sir Winston Churchill 

To Auntie Joan – thank you.  I will never forget your infamous poem about the Italian on holiday and if I think about it too long, it makes me laugh out loud and in my current condition, makes my stitches bulge!
Rest in Peace, God Bless.  xx


 

For me, the surgical journey began the day before my operation.  I had been asked to arrive on the ward around 7pm.  We had dinner at home which felt significant and left for hospital.  I was assigned a huge ensuite room which would be mine for the duration of my stay; the children were delighted with the ‘garden view’ – though this rather grandiose description was a typical one bedded NHS magnolia room with a view.

All was well until Mark and the children had to leave and it was at that point, when I could see the fear rising in the children ‘s eyes and the tears starting to well, I realised how difficult it was going to be.  We clung on to one another in a desperate attempt to elongate the moment but the time had come.  The children stood at the door as I kissed Mark, as though for the last time and they left.  My shoulders shuddered, my body already ached for them.  I looked out into the garden and to my surprise caught sight of them going down the stairs, they saw me too; my heart a little lighter.  Three more flights of stairs and at each one of them we waved until the last when we finally waved goodbye.  My spirits had lifted a little in the grace of the unexpected moment.  My named nurse came in and offered me a hot chocolate, digestive biscuit and so started the investigations that would become so  frequent over the next 24 hours they felt like breathing.

There was no need to set an alarm – I woke up at 5.20am.  I didn’t feel afraid or anxious in the slightest.  I was ready.  The next three hours were busy with numerous clinicians visiting; junior doctors arriving in groups; the consultant oncoplast concerned with removing every trace of cancerous cells; the consultant anaesthetist who discussed pain management.  His visit was lengthy; he breezed in smelling of expensive aftershave advising me that for most women with an average pain threshold, the breast surgery was 4/10 on the pain score and the abdominal surgery was 10/10.  Until this moment, I hadn’t’t even considered the abdominal surgery so I must confess, this was a a bit of a shocker!  He carried on talking whilst I focused mentally on the 10/10 pain score and then I re-tuned in to what he was saying….’the chance of pressure sores during surgery because you will be in one position so long and the possibility of going bald on the back of your head’.  It was like a Paul McKenna moment, suddenly,  I was wide awake and fully tuned in, ‘could you repeat the last part about being bald please’.  ‘Don’t worry he said, the hair tends to grow back pretty quickly.’  Well – it wouldn’t be growing back quickly enough in my mind…all I could think about was a bald patch of short spiky hair amidst the bountiful masses of brunette.  This was a living nightmare!

The plastic surgeon was my last visitor.  She breezed in with her beautiful Middle Eastern accent, full of confidence, as though I was having cosmetic surgery today by choice rather than as a necessity.  ‘Darling, you will look better than you did before, I promise’.  It’s very sweet of her to say so but to be honest, given the choice, I’d much rather not have to go through this in the first place.  Give me slightly saggy boobs and a tummy that is rounded any day because this is not a cosmetic procedure and nothing will make up for the emotional and psychological baggage that has got me here today nor what is to come.

She grasped hold of my tummy and yanked it down in a single unflattering motion, marking my skin as she went.  My belly button would be several inches higher than its current position and my cleavage would be relocated somewhere much closer to my chin.

I text my family, waiting and then the porter came, it was time to go.  I sent a final text – ”it’s time,” and I walked up to theatre remembering when I used to work there and how vulnerable patients were at this point in their journey – today it was me.

Theatre looked familiar but more sophisticated.  There were a lot of staff; eight clinicians and too many nursing staff to count, all there to help me – how lucky am I!  It wasn’t long before I was drifting off into the land of slumber and nine hours later, I emerged with two new boobs, an abdominal scar measuring 19 inches across and the first words out of my mouth – “Am I bald?!!”

Having been laid out like Jesus on the Cross for nine hours, the next thing I did was start a little yoga and roll my shoulders gently forwards and backwards to increase the blood flow and to stimulate recovery.  My faith, yoga and meditation are my healing triangle.

 

Here I am arriving back on the ward and then on the right, giddy with excitement as Mark FaceTimed my brother who was looking after the children, it was wonderful that we were all able to be in the room together even though we were miles apart.  After my husband left and there was a moment of calm from the constant interruptions from staff. I phoned the hospital where dad was an inpatient to tell him I was okay. The nurses called him to the nursing station, got him a chair and I told him how it had gone, he wept, it was all too much.

During the first 24 hours, I was monitored every 30 minutes so there was not much time for sleep.  I’d been prepared by the nurse before I arrived in hospital and the staff were very considerate, so at nighttime, the blood pressure cuff was left on my arm so the wire was seamlessly attached to as to minimise the disruption and the lights were left on as low as possible.  Monitoring moves from every 30 minutes in the first 24 hours to every hour, they every 2 hours, every 4 hours et cetera.  The room is also kept extremely warm to stimulate the blood flow to the new breast tissue so I kept a cold flannel on my forehead which helped me to sleep and keep me cool.  As hard as it is, you need to try and rest in between staff visits.

 

On the left, I’m wearing beautiful Flowtrons with five attractive velcro panels from ankle to knee – even Cara Delevingne would struggle to make the intermittent pneumatic compression stockings attractive but I did my best with the added bonus of a venflon in my foot – deep joy!  Add to the picture, pressure sores on the soles of my feet from the long surgical procedure and you get a very glamorous picture (and they’re not even the main event!).  The plastic thing in the front of the picture is a Bair Hugger – this is a lightweight electric blanket for want of a better description and is designed to keep you hot.  I could not wait for my consultant to give the green light for this to be removed which was the morning after surgery.

Moving swiftly to Saturday and a nurse very kindly located what I can only describe as glass slippers to alleviate the pressure sores, alternatively known as silicone heel protectors.  The pain of the bed sores was worse than the operative pain until I was given these amazing slippers which enabled me to sleep again.  In the photo on the right, the are being held in place by a tubi-grip on top of TED stockings.

On day two, I asked the nursing staff if I could have a shower and was told ‘certainly not’ in no uncertain terms, so I spoke to my consultant and managed to persuade her.   It was a bit tricky with drains and pain infusers attached but worth it.

 

Have drains will travel…now I’d been given permission to shower there was no stopping me and furthermore, why sit in my pyjamas when I could get dressed?  On the left, setting off for a stroll around the ward which was a useful reminder of how lucky I was.  In the middle – removing the drains which was uneventful unlike removing the pain infuser which snapped inside of me and meant I couldn’t leave hospital on day three as planned but worse, I had to go back to theatre – hey ho.  The picture on the right is me doing an adapted Vriksasana or Tree Pose to accommodate my limited ability following surgery.  The Physio team in hospital have all be genuinely surprised at how much flexibility I’ve had, from straightening my back after the operation, to shoulder mobility and have put this down to yoga.

MHB Jens friends

A blessed gift available from Jen’s Friends – via Facebook and Twitter @rainbows67 for a minimum donation of £3.50.  This pillow has been fabulous for travelling around particularly when in the car under the seatbelt to alleviate the pressure on my bionic boob.

36 hours at home before going back to theatre and having the pain infuser removed left me feeling very tired.  Negotiating the stairs, walking greater distances and sitting down on chairs that were way lower than the ones in hospital were exhausting but sleeping in my own bed – was like a dream.  Ben surprised me with the flowers on my bedside table and Gracie treated me to new pyjamas too so I felt very spoiled.

Five days post op, showing became a family affair – we moved a chair into the cubicle as my back was too painful to be stood up for too long.  Here I am getting some help washing my hair…

I must confess, these are not my most glamorous photos!

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Overwhelmed by gifts galore including cooked dinners and cakes a bounty which I wasn’t able to show because we ate them!  Thank you, thank you, thank you – it has meant so much, more than you will ever know.


My week at home has been blessed with people visiting and so many more people wanting to visit.  I am tired though now, and by the end of week two, feel as though everything is catching up with me somewhat.  The rash that led to the cancellation of my op reappeared on Wednesday.  My GP did suggest I should take some painkillers; I am taking no pain killers at the moment as my pain is bearable.   I don’t intend to be a martyr to it and if I need something will take it but for now, I am taking turmeric for inflammation, phosphorus and a post surgical preparation made by Helios in Tunbridge Wells.

I had my dressings taken off yesterday and the reality of the scars are left behind.  I was fine in clinic but when I got home I got undressed to reflect on my own and looked in the mirror.  Only a few weeks before there had been smooth skin that my hand would easily slide over, a body I was familiar with; freckles that had appeared from sun damage on holidays I could remember; stretch marks from the extraordinarily wide girth I adopted when I was pregnant; slightly droopy boobs appropriate of a woman my age who proudly breast fed both of her children.  As I caught sight in the the mirror, it did not look like me anymore.  My abdomen with a jaws like gash across the middle and now another cut in my groin where the second, unsuccessful, procedure to remove the pain infuser had taken place.  My breasts, now feel like they have been strategically placed on my chest rather than an integral part of me.  They are more like Chelsea Buns than breast.  There are a number of cuts all over my boobs and the sensation of fullness is overwhelming, my clothes rub on my skin as though chaffing, they are sore even to the slightest touch.

IMG_9349.jpg

But then I give myself a stern talking to and I look down and I have a cleavage, something mum didn’t have from being 37 years old.  My boobs are odd sizes and I think I’ll need some more surgery but I have choices, more than many women have.  The scars will lessen, they are simply angry right now but they will fade.  I’m up and about and walking a couple of miles a day after only two weeks and I honestly didn’t think I’d be doing that so whoopee!  This jigsaw of a body will tell a story, a chapter in my life.

It may not be linear progress, some days may be more painful, more difficult, more of a struggle.  Other days, I will walk farther, do more yoga, make more strides to getting better but each day is part of this journey towards completion and I will continue to take one step at a time and I know everyone is behind me and for that, I am truly blessed.

Thank you for everything  xx

I am not ready to post pictures of my new boobs on line for the sake of the children as much as anything – I’m not sure how they’d feel if their teenage friends saw their mum posing on line! Maybe that will change but for now, anyone who is genuinely going through this who would like to see bionic boobs or foobs as they are often called, please get in touch.  

 

 

 

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It’s the final countdown…

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“You never know how strong you are until being
strong is the only choice you have”

Bob Marley

Tuesday

The last few weeks have been frenetic as we have been to-ing and fro-ing to hospital with dad.  Just as we thought things were improving, he was admitted again yesterday.  It’s a good job I have a Master’s Degree in Positivity and believe me, I’m putting it all to use right now.

What has been overwhelming is the swell of love from family and friends.  Everyday without exception, I am blessed with messages asking how the day is going and if there is anything that can be done whether that is shopping for Bridget Jones style knickers (thank you Clare – I will look ravishing!); the numerous cake drop offs;  the lighting of candles – (there is a warm glow around our area there are so many candles lit) and the heartfelt prayers.

Yesterday I started the Hibiscrub body wash routine – quite delightful – it is basically like washing with hospital grade anti-bacterial hand sanitiser – all over and in all the nooks and crannies – I will leave the rest to the imagination but needless to say, it’s not pleasant.  I did wonder whether it was absolutely necessary to wash my balayaged hair that Jaki spends so long over and then Mark suggested it was probably better to strip out some of the colour than to risk any infection.

I finally got around to packing my bag.  As someone who is known for being organised, I am surprised it has taken so long to put everything into a bag or rather, lots of little bags into two bigger bags.  I figured that when I am in hospital I will find it easier to handle smaller bags and so everything has been packed into associated small bags – toiletries; things to do; snacks; IT et cetera.

I had in my mind what the last few days at home would be like – peaceful; time for myself; a bikram yoga session in the morning and then a relaxing yin yoga session in the afternoon; a glowing facial and hot stone massage followed by a long soak in the bath.  It’s been absolutely nothing like that.  I’ve gone from one task to another ticking random items off my to do list.  Now my list is clear, I feel a sense of satisfaction and even fit a serene yoga session in this morning, perhaps my last for some time.

The last couple of days the children have been away, I couldn’t wait for them to return, I missed them so much.  Every ounce of me needed to be close to them.  Everyone arrived together, the children and Mark and not long afterwards, my brother to wish me good luck.  We are so close – he has always been the stereotypical big brother.  He held me in his arms but this time, there was nothing he could do to protect me from what was about to happen.

We took the children to bed.  Ben couldn’t talk about it other than say ‘it’s going to be our last tuck in mummy’.  I swallowed hard trying not to let the tears well up in my eyes.  Gracie’s been particularly tactile which I’ve lapped up.  I tucked her in and asked if she were ok not convinced at all by her answer, it wasn’t long before she was in my room, stood before me with tears running down her face.  Of course, I know how they both feel, I have been the child in this scenario, frightened and lost for words, wondering what is happening and scared to cause any upset.  I’ve told them both, let’s cry together, it is ok.  We’ll get through this.

Wednesday

I woke up this morning; Mark greeted me, ‘morning Gorgeous’.  I asked him if he would still think I would be gorgeous after my surgery to which he replied ‘Gorgeous is you, not a part of you’ which made me all the more teary.

So why am I feeling sad?  I’d rather dad were not in hospital, that’s certainly not helping and today when we both realised he wasn’t coming home, we both cried on the phone together.  I was so grateful that yesterday when I visited him we’d decided to go for a coffee together and have a chat rather than stay on the hospital ward.  I would have given anything today for my dad to hold me in his arms and I know he would too.

On a deeply personal level, there’s a sense of attachment, you’ve been through a lot with your body; growing up – one boob is bigger than the other – I used to wonder, ‘is this normal?’ Having big boobs growing up when everyone else had teeny tiny ones, when as a teenager you just want to be like everyone else! The passionate affairs when you realise, actually, it doesn’t matter whether one is bigger than the other or whether they’re big or small! The love of a good man when you know in your heart you’ll never bare your breasts to another.  Breast feeding the children and when Ben used to inappropriately place his hand down my top for comfort when he was upset (thankfully, he did grow out of that pretty quickly!).

I have worn my old bras with pride these last few days and weeks, changing them by the hour so I can make sure they all get a last turn out before they are cast aside.  I can’t quite face removing them from my underwear drawer in case there is a chance they still fit, though the surgeon has already said there is a very slim chance of me emerging from the operation the same size – hope springs eternal.

With dad in hospital today, we had no option but to take the children with us for my sentinel node biopsy and so this afternoon, off we traipsed.  I must confess, I was a little nervous especially after the core assisted biopsy which was dreadfully painful.  The kids, have been intrigued about this as the side effects include blue eyes and blue skin…two hours after the radioactive injection I’m please to report no blueness yet.

For anyone who is a little squeamish – please don’t read this paragraph.  For anyone having a Sentinel Node Biopsy and you’re worried about the pain – here’s what happens…

So for me, this was classified as SNB preparation, the SNB will be done tomorrow in theatre.  Today I was being injected with radioactive dye to allow the oncoplast tomorrow to identify the sentinel node.  I had to undress to the waist and covered myself with a gown which was quickly removed, to be honest I saw no point in covering myself in the first place!  The radiographer then discussed the procedure – for me, the SNB will not be analysed in theatre though in some hospitals that does happen.  A needle containing radioactive fluid is then injected into the area around the nipple.  For anyone who has had the core assisted biopsy, it feels like the anaesthetic injection you have before the biopsy.  You can feel the injection and you can feel the fluid going in but it is over pretty quickly.  It smarts but it’s done very quickly.  I was in the room for ten minutes, it felt like three.  I cried when the staff went out, I think it was the realisation that this was the start of it all.

Now I am home, a brief reprise before I am admitted tonight at 7.00pm.  I am as ready as I can be.  The last few weeks have been truly blessed, I’ve spent time with my wonderful family and friends and had the chance to make memories but now, it’s time to crack on – I’m ready.

And to everyone who has supported me and mine over the last few weeks, thank
you.

Much love xx

 

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A girl’s first love is her Daddy

MHB Toots and Dad

Cheerfulness is the best promoter of health and is as
friendly to the mind as to the body

Joseph Addison

It has crossed my mind on a couple of occasions since my operation was cancelled whether there was a grand plan I was unaware of and during the course of this week, I feel it has all come to light.

My wonderful dad had knee surgery five weeks ago and had been recovering slowly but steadily.  Last week, things took a turn for the worst when he developed an infection on the operated site with a possibility of sepsis.  What then followed was dad’s heart rate beating near double the normal rate and the medication that had been prescribed not working.

We spent pretty much every day last week at the doctors and then by Friday he was taken to hospital.  On Saturday he was admitted.

When I picked dad up in the morning, he was very emotional, his voice trembling, clearly worried.  He held me in his arms and told me that he wanted me and my brother to look after one another – I knew what he was inferring.  I did my best to hold back the emotion in my voice to protect him of anymore upset, I tried to be strong, it was hard.  Dad is the pillar of our family, he’s the one that always tells us that everything will be ok, but now he wasn’t able to provide any reassurance, it felt unfamiliar.

I spent the day with him in hospital, just the two of us – it reminds me of the Will Smith song…

“Hold doors, pull out chairs, easy on the swears
You’re living proof that  dreams do come true
I love you and I’m hear for you
Just the two of us, we can make it if we try
Just the two of us you and I”

The song embodies the way dad has brought us up.  The table has now turned with us looking after him, though if I’m honest, he’s still doing most of the looking after.

There were many blessings to count on Saturday

  1. a consultant cardiologist happened to be on call and saw dad personally
  2. the endless cups of tea the staff made us on the ward
  3. the charming orthopaedic registrar who gave dad his undivided attention
  4. the consultant orthopaedic surgeon who came to give his opinion

But it was so much more than that, the blessings came from spending time with dad, the easy conversation, putting dad’s mind at rest.  At one point dad insisted he wanted to do his physiotherapy exercises and stood up.  In an attempt to lighten the moment, I got up and practiced by barre exercises from long ago – first position, second position, the odd pirouette, dad, finally was laughing.  I think there were a few wry smiles from other patients and staff but I wasn’t bothered, my only concern was dad and making him smile.  He always used to tease me that I was more like a baby elephant in my tutu than the prima ballerina I aspired to, of course, he was right – nothing much has changed!

After eight hours and many tests, it was agreed that dad could go home much to his delight.  However, a couple of days later, the medication he was given failed to work and so today after consulting with his GP, it was agreed he would be admitted to hospital for further investigation.

I look at dad and the fragility of life, all those things we say we’ll keep for best or we’ll put on our bucket list; we can all be reckless with our time.  I know I spend way too much time that I can’t account for and not investing enough time in activities that would bring real joy and happiness.  Our health really is the most vital gift we have and we should invest in it daily, I’m not about to lecture, we all know what we need to do.

So here we are and once again, I can see how important it is to be positive and how at this time, we need dad to muster up every ounce of positivity.  Whilst his physical body is ageing, his mind is young and the people around him have kept him young – Maria, Claire, Lottie and Sue who he adores and are like his family – they help to give him purpose and zest for life.  Hopefully the fact he is father figure to so many will continue to provide focus for him.  We have been blessed with a big family and that is so important to dad and the relationships he has with his siblings are steadfast.  Of course for us, we will be there, showering him with love because that is a gift given to us from mum and dad that we can return in bucket loads.

For me right now, dad, I need you more than ever.  It’s a little over two weeks till my surgery and I pray, maybe selfishly, that you are better so I don’t need to worry about you so much.  ♥  I love you daddy, get well soon ♥  All my love Toots xx

 

 

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The wider good

MHB The wider good blog

It’s been a rollercoaster of a week, another one! If I allow myself to think about it too long, it would be easy to dwell on the fact that now I would be a week post op and on my way to recovery. Instead, it been a week of long hard conversations with NHS organisations up and down the country trying to establish whether DCIS is treated under the cancer pathway or not and what the risks are in waiting for my treatment aside from the fact that I am not medically fit at the moment to proceed with the operation.

I spent Friday 6th and much of the following week making calls trying to expedite my surgery as the hospital initially advised me my surgery would be delayed until the end of August and possibly the beginning of September. Of course, no one is quite as concerned for your welfare as you are.

It takes me back to being pregnant with Ben, I was 13 weeks pregnant before I realised. I’d been breastfeeding Gracie at the time and was blissfully unaware, putting my tiredness down to running around after Gracie who was seven months old at the time and having returned from a driving holiday in France and Italy. I found out a few days before my mum was diagnosed with another cancer, this one would be terminal and resulted in the next six months of my pregnancy being spent every day bar none, in hospital visiting my mum is was very difficult for us all but looking back, it must have been most difficult for my mum. Her resolve and strength was astounding as was her resilience. Nonetheless, it was frightening for us all and all I wanted was for herto meet this growing baby who in spite of everything, was thriving inside of me.

My obstetrician wanted me to have a Caesarean section as I had a section with Gracie and so was deemed too high a risk. Having spent all this time in hospital caring for mum, the last thing I wanted was a clinical birth and instead I wanted a home birth. I was fortunate enough to meet a midwife who believed in me and the over medicalisation of the guidance I had been given. I remember as I was told in the morning that my mum may only have a week to live seeing the consultant obstetrician in the afternoon who talked to me as though I was reckless, she was insistent, I was putting my life at risk and the baby if I went ahead with anything other than a caesarean. There was some truth in what she said, if my uterus ruptured, it would be catastrophic but the likelihood of that happening, (and I’d spent several months researching this at the highest level), were very slim. Sometimes, you just have to speak out and in this case, to pardon the pun, push back a little. My mum didn’t get to meet Ben, she passed away three weeks before he was born. We always say they met in Heaven. I went on to successfully deliver Ben at home in what was a fabulous home birth looked after by Lesley Price and her team. Later I went on to advocate the woman’s right to choose and I’m sure mum was powering and steering some of those decisions from above.

I felt then as I do now that it’s so important to ensure that we all have a voice and that is why I felt so passionate about being a champion of sorts. I am fortunate, I know who to call, what to say how to press for a better service and even though I think I know, it has been emotionally draining and wearisome this week to be constantly passed from pillar to post. At the end on the day though, it’s not about me, it’s about us and in those moments of self pity, it helps to remember how we can make difference to other people by channeling our efforts to the wider good. There are so many others, the elderly, those alone or with mental health issues who simply take at face value all they are told and do not question it. We need to assert our rights as patients and ensure we gain access to the best treatment at all times for all people.

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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