Hysterectomy, Post surgery, Surgery

Joining the Hystersister Brigade…

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“We cannot tell what may happen to us in the strange medley of life. But we can decide what happens in us – how we take it, what we do with it – and that is what really counts in the end.”  Joseph Newton

The next part of my journey has been having a prophylactic hysterectomy, that is choosing to have a hysterectomy in the hope it may help to prevent the recurrence of breast cancer and incidence of ovarian cancer which mum was diagnosed with at 53, stage IV.  Removing my uterus will also help to eliminate the heightened risk of uterine cancer associated with taking Tamoxifen for the recommended ten years – the joys of being a breast cancer patient!

There has been some discussion between the oncoplast, gynaecologist and myself as to whether to have my ovaries and fallopian tubes removed or a full hysterectomy and finally we opted for the latter. From the decision being made in September it has taken six months for my surgery to take place which has given my body some time to heal and prepare and more importantly enjoy something like being normal – doing exercise walking freely enjoying what it feels like to do yoga again; feeling the intensity of a Chataranga Dandasana and knowing how far I have come not only in my core strength but also all the worry I had about my mastectomy and whether I would ever be able to do yoga fully and get back to the place I love most – my mat.  I had wondered if I would ever have enough strength in my right arm to hold upper body poses and whilst my strength is definitely compromised, it limits me but does not stop me.

At only 45 I have not been too sure what to expect from the hysterectomy. The first gynaecologist I met thought it would be like a baptism of fire, spontaneously going into menopause as I emerged from theatre in a hot sweat in the recovery room. She promised a depressive state, heightened mood swings, loss of cognitive function, loss of libido and facial hair!!  –  I can see why women aren’t queuing up for this.

On the run-up to the operation, I did wonder on a number of occasions what on earth I was doing – I could live with my ovaries a little bit longer and see how things go, but at the back of my mind, I couldn’t help worry every time I ovulated if I was surrendering an opportunity to put an end to the uncertainty and instead, double dicing with an unpredictable future. And so on the 28th of February I packed my bags once again for L’otel Hospital and booked into a beautiful, not so private suite.

MHB Gynae packing
My hospital bag packed with pyjamas, toiletries, BIG supportive knickers to minimise any swelling, something to read and a re-chargable battery…I forgot to pack sanitary towels and ended up at the mercy of the hospital who supplied something akin to a Terry towelling nappy!

I started taking pre-load the night before – this helps to recover from the anaesthetic and having taken it before my breast surgery I was keen to make sure I had it again. This time I was armed with the knowledge I could also add orange or blackcurrant juice to improve the flavour rather than the repulsive citric lemon taste which was barely palatable. Packed full of calories, preload is used as part of an enhanced recovery programme for people undergoing some surgical procedures. All I can say is it definitely seem to help my post-op recovery – I was more alert more quickly on both occasions compared to other anaesthetics I have had previously.  If you are having surgery – you may want to ask for it – it may help you feel better the day after.  I was also given the mandatory hospital gown in size ‘marquee’, it wrapped around two and a half times; a cardboard coffin to wee in (which was progress, usually, ladies are expected to wee in a small plastic bottle with a one inch circumference – my aim is simply not that good!); a net hat which I immediately put my finger through and a glorious pair of below knee embolic stockings.  I looked ravishing in my new attire.

On the morning I saw what seemed to be most of the staff who were on duty in hospital. There was a possibility I would need an abdominal incision but I was hoping to avoid this.  Everything was going, ovaries, tubes, uterus and cervix – I did ask the surgeon if there was any possibility of a little nip and tuck whilst he was down there and he assured me he would see what he could do!

Anaesthetically, there were several options available to me, The consultant suggested I opt for a general anaesthetic and a spinal which would benefit me if I needed an abdominal incision and if I had a laparoscopic surgery would help me to feel better sooner. I had a spinal when I had my first baby and was rushed to theatre for an emergency Caesarian section – the difference this time was the baby hadn’t been bearing down on my cervix for the last 24 hours essentially numbing the area and, whilst then I was oblivious, this time I was totally compos mentis so the reality of the needle was very real.

When the consultant drew out the needle, I could only imagine there had been some kind of error and this was the anaesthetic needle used in pre-operative cases for large mammals who have escaped from the zoo. It was at this point he asked when I last ate which had been around 6 o’clock the night before it was now 10am.  He looked up at me and said ‘that’s a relief, the lady before you got up at two in the morning to have her last meal!’ I’m so glad he mentioned this before they put the needle in my back because I laughed out loud, I mean let’s face it what a commitment to food to actually get up four hours before the final fasting time – that is simply pure dedication.

It was at this point, relaxed, he said ‘hold still’ and applied local anaesthetic into my back. I had a lumbar puncture a few years ago and it felt very similar, a ‘pushing and pulling’ sensation inside, uncomfortable but over pretty quickly. I asked for a sick bucket just in case I threw up but didn’t and actually the whole process was over faster than I could say ‘I need to lie down now because my legs are turning to jelly!’ And that is of course what happens, slowly you start to lose every bit of sensation from the waist down and the anaesthetic team rush to get you horizontal and start to complete the process for the GA and before I knew it I was waking up in recovery.  I was told the surgery had taken a little longer than expected as part of my omentum had became entangled with surgical mesh from my last operation giving the surgeon a crystal maze like structure to extricate.

A few hours after the op, I was keen to get up but staff had a very different idea. I don’t like ringing the bell, but asked each time I had my observations done and was told categorically, no, I had to stay in bed a little longer. Not to be out done, I contemplated how I was going to negotiate climbing out of the bed and over the bed rail with a catheter in situ given I didn’t have the upper body strength to release the bed rail from my current horizontal position.

After a little shuffling around and carefully lifting the catheter bag off its stand, I was raring to go and finally slipped my way to the very end of the bed. There was a narrow gap where the bed rail ended and the end of the bed so I wriggled my hips out like a slinky, letting out a groan as I snagged my catheter bag in the process on the bed rail on the other side. And there, the path to freedom. I headed towards to door and gently closed it so I wasn’t found out and slowly started walking up and down my room – my motivation was two fold – first and foremost, I had stopped taking Tamoxifen and could only start taking it when I was back to normal levels of activity due to the increased DVT /PE risk. Secondly, as sexy as the knee high embolic stockings are, I’d rather stick to Agent Provocateur for my lingerie and was keen to toss the green knee highs in the bin.

Evening came and I knew my family would be visiting. My hubby came first and we spent some time together alone – it was just what we needed in the moment, an opportunity to talk about everything that has happened, laugh and cry together before our kids, my brother and dad arrived. The kids were double excited to see me and me them, their gift, a warm hot water bottle – pure bliss and the best pain relief. They’d had the thrill of coming with their uncle too who adores them!

Dad arriving was incredibly emotional. When I was in hospital with breast cancer, dad was also in hospital, unable to visit and then became gravely ill. For him to be there today, to hold my hand at the side of the bed, to tell me he loves me, to say everything will be ok, meant the world. A few months ago, I honestly thought he wouldn’t be here to support me through this next phase and I’m so blessed that he has been able to. He put his arms around me and hugged me and remembered when he was is hospital how he was too weak to lift his arms up to embrace and we cried together and how far we had both come.

Everyone left. I felt overcome with fatigue and emotion. I was already in bed, prepared for the hourly interruptions throughout the night, already negotiating with Staff as to when the catheter would be removed though I knew the answer. I settled down, intoxicated on the love of my family and the after effects of the anaesthetic and drifted off to sleep.

I was soon home and given very similar instructions to those following my last operation, though it felt somewhat easier as I had the use of my arm having not also endured a mastectomy at the same time – thank goodness. What I was not prepared for, a few days post op was referred pain around my mastectomy site as a result of inflammation of the scar tissue which left me unable to lie down on my right side or if the kids cuddled me, I winced. Even clothes and bedsheets against my skin causing pain, I felt as though I had taken a massive retrograde step. It brought home the piggy back nature of the two surgeries and as the surgeons predicted, the inevitable slower recovery of this procedure as a result.

One of the entry sites in the abdomen became infected and my belly was swollen – it still is very swollen despite my ‘big panty woman’ knickers trying to restrict the swelling.  Some days I wake up and by mid-morning, I could quite cheerfully go back to bed but I don’t I want to get into that kind of routine so I dust myself down slap on a bit of lippy and crack on. I can’t lie though, rarely a day goes by where I make it through without having a sleep – an overwhelming sense of fatigue wipes me out and I have to surrender; if I don’t, bed beckons very early evening and I miss the kids chattering and the end of the day pleasantries.

The reality of hysterectomy has thankfully been less dramatic than the gynaecologist had predicted.  Yes the hot flushes have come on with a vengeance as my oestrogen has flatlined.  I generally feel as though I am in the middle of the desert, scrambling around for a glass of water and a breath of fresh air, opening the doors and windows and insisting we sleep with only a sheet on – and still I am hot.  I have found some days to be emotional for no apparent reason; feelings I would normally be able to reconcile are more difficult to rationalise and tears flow.  I am struggling somewhat with pain which I hope will level off soon.  I believe this is my body adapting to the very low levels of oestrogen and as I am unable to take HRT or herbal supplements (like many other women who have ER+/PR+ breast cancer), I need to ride the rain shower.  At least for now, I have not suffered with some of the extreme menopausal symptoms some women go through and for that, I am eternally grateful.  I continue to be back and forth to hospital and within the next few days have a mammogram though only for my left boob as my bionic boob cannot be screened and also a DEXA (dual energy X-ray absorptiometry) scan to assess my osteoporosis risk.  I have to wait four weeks for the results of the mammogram which feels interminable.

Some women who are invited for mammogram as part of national breast screening programmes fail to attend their appointment as they are unsure of what happens during the procedure or may have concerns about the result.  On a personal level, since my diagnosis, I discovered I should have been invited to screening nearly 10 years ago but I was missed, nothing may have changed for me and I can’t think of what ifs, but if you have the chance, don’t regret it…here is a video showing what happens during a mammogram.

Exercise helps me for my emotional and physical well-being and whilst I am not yet on my mat, I am there in spirit! (My oncologist also said exercise, 20 minutes per day, 5 days per week was of equivalent benefit to the Tamoxifen I’m taking of which I have 3460 days remaining on the medication so I am very motivated by exercise). I did try a plank but felt I was better settling in savasana for now! I am walking each day which is in itself a blessing especially at the start of spring as the birds nest and blossom comes in. Meditation helps to ground me, particularly whilst I am unable to do yoga but that day will come. Praying restores my faith.  And for now, whilst I feel like a bag of spanners inside, I’m hoping a new creation will emerge, a little stronger again with a few bits and pieces less to worry about.

Thank you for taking the time to check in – love Toots xx

 

Cancer related drugs, Hysterectomy, Post surgery

Have you had a tummy tuck dear? No, I’ve had breast cancer!

MHB Blog Feb
“We’re like a gardener with a hose and our attention is water – we can water flowers or we can water weeds.” Josh Radnor

 

Its been a busy couple of months since the jingling of Christmas bells.  The children went back to school and I went back to work.  I felt like I was learning to juggle again; I simply was not prepared for the fatigue that followed.  I hadn’t experienced these levels of tiredness for some time and struggled to get through the day.  I’m not sure whether it was the mental stimulation; the travelling or simply trying to fit so much into the day, and given my husband works around 85 hours per week he’s generally not around to help so it felt quite solitary at times.  Some days, I’d come home, sit on the sofa and have no energy to do anything, let alone play taxi to the endless journeys taking place after school but of course, you do and before you know it, you’ve knocked up a three course meal – (thank God for Jamie Oliver’s 15 minute meal ideas or the children would have become malnourished!) and knocked up another two hours driving in the car ferrying the kids from one activity to another.

I’d like to say I slept but due to the unrelenting hot flushes, my sleep has been somewhat disturbed too.  So, even in the depths of winter, we are still sleeping with our summer duvet on – actually, Mark sleeps with the duvet on and a blanket for good measure and I have a sheet but even that is too hot! Even my skin is too hot and I repeatedly wish I could peel it off and opt for something cooler.  I have a flannel on ice which I pull on my forehead when I overheat which cools me down quickly and have invested in a pretty folding theatre fan for the daytime but I need one in every handbag as I never have it with me when I need it!

Dad has continued to improve, he’s now sending us meals home which doesn’t feel right at all but there’s a strange comfort in knowing there’s a food parcel on its way home now and again.  Every day is a blessing and we don’t take any of them for granted.  He went to see his cardiac consultant today who was delighted at his turnaround and put it down to his sheer determination.  I am incredibly proud to be his daughter.

Since my diagnosis, I have spent more time at hospital appointments than my previous 45 years put together.  I hoped since my surgery they would lessen but that hasn’t been the case and barely a week goes by without some me delving into some healthcare provision or other.  On Friday I saw my oncologist to discuss whether to stay on Tamoxifen after hysterectomy or whether to change to an aromatase inhibitor.  After much discussion, he has decided to keep me on Tamoxifen as I am tolerating it well.  I continue to read evidence to understand his decision making and I know this is something I will come back to later.

After seven months since the dreaded rash, I finally saw an immunologist to try and determine the underlying cause.  Her initial thoughts;  it was in response to the contrast dye used in the CT scan.  I now have to wait – a little longer – and go back to be tested under clinical conditions where they will inject me with contrast dye and basically see what happens…watch this space!

I met with my gynaecologist again to discuss my forthcoming hysterectomy.  During the consultation, my second, I felt we were not quite on the same page, our conversation at odds with the procedure to be carried out.  I asked how the procedure would be carried out given the amount of surgical mesh holding my tummy together.  The consultant asked to examine me so I hopped up on the bed in a semi athletic fashion, my abdomen still creaks a little after the DIEP surgery and it was then, the consultant said, ‘Ah yes, I can see you’ve had a tummy tuck’ to which I replied, ‘no, I’ve not had a tummy tuck, I’ve had breast cancer’.  There were a couple of other things, one being a general insistence that the surgical menopause would be over within six months – my response was, surely if women knew this, they would be reaching up into their own vaginas to self evacuate, alleviating years of hot flushes, hormone irregularities and mood swings!

I came home and phoned my breast care nurse who was amazing.  She in turn liaised with my oncoplast and my care was immediately transferred to a gynaecological oncologist.

It is easy to get mad but I chose to stay calm.  My surgery was cancelled as I had changed consultants and it felt as though I was going through a repeat of the summer all over again.  Although I had been referred, progress wasn’t as quick as I would have liked and so I spent a huge amount of time on the phone trying to expedite appointments and ultimately secure a surgery date.  I learned to make friends with your consultants secretary – they are your greatest ally.  It took up a huge amount of time, I tried to stay positive and focus on the task in hand – getting a surgery date.

On a snowy day, I drove two hours to meet my consultant.  He immediately instilled confidence in me telling me exactly how the procedure would be done, hopefully a laparoscopically assisted vaginal hysterectomy with bilateral salpingo-oophorectomy but there is a possibility it will be done abdominally.  If so, he hopes to use the existing scar and very worst case, I’ll have a new scar but I’m not even thinking about that as a possibility – I’ll cross that bridge if it happens.

4th February was World Cancer Day.  There were lots of people on social media sharing their cancer stories and pictures of their cancers scars so I decided to share one of mine.  There is a beautiful photo on line of Tahira Kashyap Khurrana who shared a stunning photo of her breast cancer scar.  Here is a picture of my abdominal scar – it is healing well which I put down to my Bridget Jones knickers!  I’ll be gutted if the consultant has to go in through the scar but it will be a small incision compared to what has gone before.

MHB Abdominal scar Feb 2019

So now, we have been blessed with a few days away with the kids before my op which has been way better than any prescription.

Thank you for checking in – I’ll try not to wait so long next time.

Tootsie xx

 

 

Post surgery, Radiotherapy

Losing my hair, gaining a nipple and meeting George Clooney – what joy!

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“Sometimes the best thing you can do is not think, not wonder, not imagine, not obsess. Just breathe and have faith that everything will work out for the best.”

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It has been a couple of months since I last wrote.  Life has been somewhat hectic.  Dad has been in and out of hospital and at one point, we didn’t think he was coming home.  Our world, once again, shattered as we watched dad deteriorate, was impossible to bear.  Unable to mobilise, hallucinating and scared, we sat with him every hour.  Margaret, a family friend, asked the hospital Chaplain to visit, my heart sank but I was simultaneously overwhelmed at the same time.  We prayed together and I was grateful for her thoughtfulness.  There were discussions with the consultants and it was agreed the best place for dad was at home.  Systems were quickly put in place for dad to be discharged.

Miraculously and from nowhere, dad got his mojo back and at the day after he was discharged decided to go back to work – his second home.  Of course, this is where he needed to be.  Dad, a social butterfly now immediately surrounded by well-wishers, friends and colleagues, a huge swell of love, tangible around him and us.  The song we had repeatedly played in hospital for dad at his request, frequently crossing my mind, ‘One day at a time sweet Jesus‘, which is now a mantra on bad days.  Dad keeps getting up in the morning, like Groundhog Day, determined to ensure there is as much life left in his days as possible and to ‘prove the doctors wrong’.  We are grateful for every moment we have been given, every day is a blessing.  So for now, we celebrate every tiny victory and with dad’s sheer determination, we hope there will be many more.  Dad, you are a legend and we are so proud of you.

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Amidst the endless journeys to hospital to see dad, I have been negotiating my ongoing treatment.  I am not sure I have had time to think about what has happened by way of my own diagnosis and surgery if I am honest, it’s all a but of a blur mashed into life’s adventure.  Where do I begin…I’m sure there’s a song there somewhere!

Tamoxifen and hair loss

A few weeks after I started taking Tamoxifen, I started to lose significant amounts of hair.  I was in the shower one morning, Mark had taken the children to school early so I was on my own.  I noticed as a I applied the shampoo, clumps of hair were coming out, not the odd strand as normal.  I tried to wash my hair double quick but despite my best efforts, the hair loss was phenomenal.  I wept, totally distraught.  I knew this could be a side effect, in fact I had bought I Biotin shampoo to help strengthen my hair but nothing prepared me for this.  Over the next two weeks, I dreaded washing my hair and finally made an appointment to see my GP.  She referred me to our community pharmacist, Debbie – a marvellous, open minded practitioner who combines conventional medicine with natural alternatives.

She suggested I immediately stop using the Biotin shampoo saying any change at this stage in combination with the Tamoxifen is a change too many and recommended I go back to using my ordinary shampoo and conditioner which I did immediately.  She examined me and looked at where the hair loss originated from.  For me, it was either side of my temples, where it had been when I was pregnant, and a general ‘pony tail thinning’ as she called it.  Debbie felt this was due to a hormone imbalance and possibly due to low iron levels too.

She suggested (not prescribed) three items which I went on to buy:

  • Lamberts Florisene for Women
    (other brands are available but not in the same concentration)
  • Great Lakes Collagen Hydrolysate – in the green tin (I thought it was fish food when it arrived – probably tastes a little bit like fish food too if I’m honest!)
  • Bitters and Ginger to aid digestion as I’ve not been able to eat too much – be warned though, it tastes pretty vile, definitely worse than the fish food above!

 

Debbie also advised me about the amount of oestrogen in water and the food we eat.  Of course if you are taking Tamoxifen and undergoing further radical surgery to prevent oestrogen production, you may want to think more carefully about what you are eating/drinking and where it comes from.  Of course, you may not give one about whether you are drinking oestrogen by the bucket load – don’t shoot the messenger!

I started to take my new combination of medication.  The Florisene was most tricky as it cannot be taken at the same time as other meds or before food but I managed it.  The Collagen Hydrolysate is fine in a hot drink and after three or four drinks, you can’t really taste the difference.  I am on my second tub now.  My least favourite and palatable, is the Bitters and Ginger, it does work though is truly horrid!

After three weeks, I started to see  new growth around my temples and it is now about 2cm long in places.  My hair is considerably thinner than it was though only my hairdresser and I notice.  The hair loss has stopped and for that I am truly grateful and of course the fact I was blessed not needing chemotherapy and the devastating effects of losing all your hair.   So, thank you Debbie for your advice, it came at the perfect time.

The uplifting moment of being given a nipple! 

For those of you who may have a mastectomy or breast reconstruction, the days of having a nipple may be long gone.  When I woke up from my surgery, I was initially so delighted to find I had a bionic boob, I couldn’t care less about a nipple.  As the weeks went on and I physically started to recover, there were times when I was wearing particular clothes when it was obvious (to me), that I was ‘nipple-less’.  With my nipple reconstruction now a distant prospect due the damage of the radiotherapy, I was delighted when my plastic surgeon referred me to the prosthetics department.

Having no idea what to expect, we were greeted by two staff (who shall, remain nameless as they shamelessly broke all the rules and let us take numerous photographs so I could share them with you!), we will call them Ada and Rose.

We sat in a small waiting area, a little bit like a dentist.  Once again, I had to undress – I am so used to getting my boobs out these days, I am quite blasé about it now.  To be honest, they have been seen by so many people, they don’t even feel like they belong to or are part of me anymore, rather something I have been given for safekeeping.

Rose would be overseeing my prosthetics and promptly set about mixing colours.  It was totally fascinating and I could not believe all this effort was being put into my nipple production.  If this goes into a nipple, God knows, how much effort goes into making a leg!

Next up, my left nipple was ‘cast’ in a green plaster mould and from this the colours would be used, layer upon layer to build a realistic nipple prosthesis for me.  When the prosthesis was ready three weeks later, Rose wasn’t happy with the colour and re-mixed the colours for a better match.  It is a very sophisticated process.

 

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All of this provided much light relief at a time we were otherwise feeling at the depths of despair.  When I went to collect my nipples (I know it sounds ridiculous!), I cried.  I don’t think I realised the psychological impact of not having one and suddenly I had a choice – what a blessing.  So now, every morning, I don my make up, sweep my hair up into a bun and before I get dressed, stick my nipple on.   How lucky am I!!

The joys of a gastroscopy and a colonoscopy (on the same day – what a bummer!)

Since 2016, I have been having problems with recurring oesophageal candidiasis and seriously upset tummy which have led to a number of tests already.  Before my mastectomy, it flared up and my GP suggested it was time for another visit to the gastroenterologist but was happy for me to wait until after I recovered from my breast surgery.  The inference, to rule out inflammatory bowel disease; Crohns  and Colitis

I discussed with the gastroenterologist the prospect of having a colonoscopy given my recent scar tissue and surgical mesh holding my abdomen in place but she was certain that given the ‘superficial nature of the scar’ it would be a pain free procedure.  I was less than convinced, so much so, I phoned her secretary later in the day and asked her to speak to my plastic surgeon.  I received a call back to say everything would be fine.

Two days of trill, four litres of ghastly laxatives and several loo rolls later, I arrived -ready!  I was greeted by a doctor who I prayed was not going to be my doctor – tall, dark, swarthy, reminisce of George minus Amal.  He left me yet another theatre gown and a pair of Bermuda shorts with secret access at back akin to something you’d find in Ann Summers but far, far less flattering and certainly not in my size.  You can imagine my surprise when the knock on the door came signalling it was time to go and there, as I opened it, stood in my Bermuda shorts, backdraft rattling through my behind, was my George Clooney lookalike.  I was so pleased I’d done my make-up though why I was bothered – he certainly wasn’t looking at my face!

Joking aside, the gastroscopy was seamless.  The colonoscopy was excruciating and had to be stopped before it could be completed.  George – the consultant – said it was too soon for this type of procedure to be carried out given the extent of the surgery performed.  So my advice to you my friends, if you have had abdominal surgery, especially if it is recent, do question your consultant and make sure this procedure if the right one for you.

What is next on my amazing journey to health 

There have been quite a few twists and turns during the last eight months and as we knock on the door of 2019, I know there may be more to come.  The dreaded colonoscopy has been re-booked but performed differently so I should feel nothing; returning to work, albeit briefly before my hysterectomy when I will be thrown into surgical menopause, longing for HRT and making do with extra helpings of isoflavones in every meal – may the force be with everyone around me and can I take this opportunity to apologise now if I become demonised or an emotional wreck; the possibility of nipple reconstruction in the spring and the decision I am still waiting for – whether I need a left mastectomy.

Most importantly of course is my ever-loving family and friends who have been and continue to be tremendous – this whole adventure would have been so much more difficult without you; and of course Dad, stay well and stay positive – we’re not just behind you 100%, we’re thinking of you all the time, sending you positive energy and praying for you.  It’s not over till the fat lady sings, and she’s not singing!  I love you xx

Thank you for sharing my story so far.

Happy New Year, I hope it is peaceful, prosperous and healthy and if it isn’t, I hope you find strength to muddle your way through.

Much love

Tootsie xx

 

Cancer related drugs, Post surgery, Radiotherapy

An oncologist, radiologist and a gynaecologist all in three days…does life get anymore exciting!

MHB Stagg
Photo courtesy of Ali

“Family is the most important thing in the world”

Princess Diana 

It has been a few weeks since I put fingers to keyboard – I shall explain.  My wonderful dad was admitted to hospital nearly seven weeks ago with heart failure.  Five weeks ago, we held so much hope when we were told he was being transferred to a specialist heart centre, one of the best in the county, and would undergo immediate surgery.  It was enough to send the whole family into disarray.  Dad was and continues to be his usual calm, steadfast self holding us all together with his joy and laughter.

During the initial few days in the new hospital, we were told many investigations were required.  A few days turned in to a week and then two and then three.  Dad became increasingly poorly.  Then came the devastating blow that surgery was no longer an option.  My heart shattered into a million pieces.  

And so, here we are, trying to be strong, not knowing what each day will bring but facing each day with a smile and a box of tissues.  Every day dad tells us ‘I love you from the bottom of my soul’ and I know how blessed we all are to have each other.  Even in his poorly state, he has been knitting blankets for Syrian refugees; being Agony Uncle to the staff and patients on the ward; always putting the needs of others before this own.  

We pray to God for a miracle, to lay his hands on dad and cure him, for he has been so selfless in his life and helped so many people with out knowing the joy and light he brings – we all still need him!

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The Oncologist

Amidst visiting dad in hospital, I’ve been cracking on with my own cancer diagnosis and at the beginning of October, my appointment with the oncologist fell due.  The last few weeks had been helpful in terms of my recovery but I knew seeing the oncologist would mark a new phase of my journey setting out adjuvant therapy and the next ten years of my life.

My consultation was seamless.  The consultant was very quietly spoken, we had to really tune in to hear what he was saying.  I was very keen to understand risk associated with recurrence and he was able to reassure me considerably.  I had hoped, given I need to have a hysterectomy, to avoid Tamoxifen and other endocrine therapy but his advice was clear, it is still necessary, for ten years.  I struggled to get my head around this.  My radiotherapy would begin in three weeks or so and I could expect a phone call within ten days for my initial mark up.

I left hospital, Tamoxifen in hand, wondering how it would impact on my life, knowing I have no other reasonable choice.  I can’t lie, for the first couple of weeks taking the Tamoxifen I was like a spoiled child saying things like, ‘only 120 more packs to go’ or ‘only 3645 more tablets to take’.  I’m over myself now!

The Radiologist

As we drove home, I got a phone call from the Cancer Centre inviting me to go for a mark up the following day with a view to starting my treatment the following week, which was much sooner than I had expected.  Obviously I said yes.

I went the following day and was grateful Clare was able to come with me at such short notice.  I was given a gown which would become mine for the next four weeks, cluttering the kitchen table.  My initial response to the radiographer was akin to Goldie Hawn in Private Benjamin, ‘Is green the only colour these come in?’  It was huge and drowned my now size 8 frame – still, we giggled and went into the radiotherapy room, camera poised so I could take some photos for my blog.

I am not sure the radiographer had been asked too many times if taking photos were allowed and of course when they tentatively said yes, Clare immediately set to, moving chairs, climbing on patient steps and the like, whilst the radiographers positioned me, in an attempt to get the best shot.  This is why I am smiling in each of the pictures because she was making me laugh!

I acquired my first tattoo – actually three of them.  You can see in the pictures below a tiny black dot which I have circled in red; this is in the centre of my chest, between my boobs.  I have two others on each side which assist the radiographers when lining up the radiotherapy machine each day.

My radiotherapy took place for 15 days over four weeks excluding weekends.  Some days, I would be seen on time and others there would be quite a bit of waiting around. Immediately after my first treatment, I noticed a difference in the pliability of flesh and after 2-3 sessions, the place where my new nipple would be had risen and so was out of line with my existing nipple.  When chatting with other patients, this was definitely a breast reconstruction issue so if you have had breast surgery without reconstruction, this should not be a problem.

My breast care nurse advised me to go home after each session, strip off and sit in front of a fan and so I did, even if it was a few hours after my treatment (as the radiotherapy continues working and is cumulative in its effect).  The fan definitely cooled the area down but my breast remained hot even with the fan on and the rest of my body in a state of shiver.

I religiously applied Aveeno, twice per day and aromatherapy oils (as mentioned  in my previous blog).  I have had some side effects, the odd blister; redness; heat; painful ribs due to inflammation from the radiotherapy; a tighter, firmer boob; I have also felt very tired on some days but factor in I have spent six hours a day most days travelling between hospitals in two different cities having radiotherapy and seeing dad and then coming home and trying to be mum to the kids and a wife if I have the energy!  I’m not complaining, it’s just the way things are right now and I’d travel to the ends of the earth to see dad every day when he needs me so much, regardless of what’s going on.

When I finished radiotherapy, the radiographer said things (as in the side effects) are likely to get worse over the next 2-3 weeks.  I honestly took it with a pinch of salt and by day three post rads, my skin felt like I had chronic sunburn with more blisters emerging.  This too will pass and very soon it will be behind me.  Overall, the radiotherapy has been far less invasive and with less side effects than I thought.

There has been an unexpected pleasure of radiotherapy and one I will treasure.  Every day you go to the Cancer Centre and it is a drain on many levels, both emotionally and physically.  When you arrive, cancer is all around you, in every nook and cranny.  The Centre totally enlivens you, it is an opportunity to bring people together, everyone, with their own story to tell, the staff are amazing, particularly Hayley who guided me when I had a bad day.

Nikki, Mike, Flo, Raj, John, hoping to get better, all hoping we will all get better.  Everyday we meet and exchange pleasantries but by the end of our treatment, saying goodbye to these people is difficult, I feel like they have been part of my journey and I feel sad having to say farewell.

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The Gynaecologist

So amidst the furore of oncologists and radiologists, I went to see my gynaecologist; a beautiful lady who reminded me of my grandma with the Indian lilt to her accent.  The purpose of my appointment was to understand the benefits of a hysterectomy for women in my position or whether an oophrectomy would be a safe and suitable alternative by mitigating my breast and ovarian cancer risk.

We talked at length about the options and particularly about my main concern – a prolapse – I don’t want to be faced with a leaky bladder!  She assured me that so long as I came out of theatre clenching, I’d fine.  She said her advice to all women is to perform pelvic floor exercises every time you put the kettle on and to clench until the kettle boils, problem is, we’ve got a bloody big kettle, it takes an age to boil!!

What we came to was whilst the oophretomy will protect my breast and ovarian cancer risk, if the uterus is left intact, there is a heightened risk of uterine cancer for women who take Tamoxifen.  Given my prescription is extensive (now 3605 days and counting), do I really want to take the risk given they are in the area and can whip it out.  My main concern is my abdominal scar is healing nicely and I want to avoid at all costs an abdominal hysterectomy but we hope the procedure will be either laparoscopically or vaginally and all being well, it will be carried out in January.

Next Up

There are lots of appointments coming up, the breast care nurse to discuss my future management and care; the oncologist to assess how my treatment is going and how I am responding to Tamoxifen (I could write a whole blog about that one!); the Cancer Centre to manage my discharge from radiotherapy; the very long awaited prosthetic nipple appointment which is on Wednesday 7th – I will tweet about it!; the gastroenterologist to check out my abdomen, and so it goes on.  I wonder sometimes what did I do before I had cancer.

I found out on Friday one of my very good friends has been diagnosed with breast cancer too so I will do everything I can to support her – you are not alone; there will be good days and bad days and we will face them all equally.  I count my blessings every day, the fact I have access to such wonderful services; the amazing friends who have selflessly given up their time to take me to appointments; insisting on driving when I could have easily driven; taking time off work; going to hospital when hospital is their phobia; just always being there.  Not forgetting family, who are the most important thing in the world and without them, for me, there would be nothing.  The last few weeks have been particularly difficult for us all and without the support of dad’s brother’s and their wives we would have been lost so thank you all.

Hopefully, it won’t be quite so long until I write again.

Much love,

Tootsie xx

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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.

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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.