Post surgery

Keep up and you will be kept up…

MHB June Bird_Hope
“Hope is the thing with feathers that perches in the soul and sings the tune without words and never stops at all.”                                                                 Emily Dickinson

The last few weeks have been a huge period of introspection.  Nobody can imagine, when they are diagnosed with breast cancer, how they will cope but you hope you will find strength to deal with your new unravelling journey. As I reflect on what has happened over the last 12 months I think, whilst there are many dark days, you either venture into the trough of despond or you try to find the positive in each and every situation and cling onto hope, even when your fingernails are gripping on for dear life and you feel you may slip off the cliff edge at any moment; for me clinging onto hope is always the best option, for without hope, we have nothing at all.

In some ways the hysterectomy has gone quite well and in others, I seem to have developed a myriad of other problems which I had not anticipated, some small, some much more troublesome. I was advised the stitches would take two weeks to come out and eight weeks later they finally dissolved, I deduced from this I clearly had rhino skin. My husband kept saying, “just pull them out” but even the slightest tug felt like it was pulling internal organs through my epidermis, alien style.  The incision site near my bellybutton became somewhat infected and still remains sore. It is of course human nature to fiddle with something that has been sore for a period of time and so naturally I keep prodding it to see if it is feeling any better, it isn’t. In a similar vein, since I had my reconstruction surgery, I have little to no feeling from my bellybutton down to my bikini line. This means when I place my hand on my belly I don’t know where my bellybutton is so I like to play a game a little bit like ‘pin the tail on the donkey’, except it’s called try and find your bellybutton. Because I have absolutely no sensation of course I always miss and my finger points somewhere to the left, right or upper middle of my navel which I still find amusing!

On a more serious note, since the hysterectomy, I have joint pain which is quite debilitating.  I am currently working with a physiotherapist to try and strengthen some muscle groups and in the meantime, waiting for a CT scan.  My bladder has become hyper-sensitive – no one told me about this and I certainly didn’t sign up for it!! As a young woman I am definitely not ready for Tena Lady so instead, I am totally committed to Kegel exercises but if I do them with anymore regularity soon I will be able to hold a pencil up my chufty but in the meantime, they are not helping the bladder issue whatsoever!

My thoracic spine has become quite flattened since the mastectomy in spite of yoga so I am working hard to try and improve the range of movement in the area which will hopefully increase flexibility to my right arm.

When I embark on any exercise, I realise half way through, I have limited stretch in my abdomen. I don’t know whether this is because of the hysterectomy or whether it is due to the DIEP reconstruction. It feels as though my skin is so taught it is going to tear open. It doesn’t stop me but it is a constant reminder and I feel I need to be careful. Put it this way, Vinyasa classes are out of the question for now.  I have absolutely no idea whether I will gain any flexibility in my skin; if it will stretch in due course or if it will always feel taught.  My bionic boob is extremely sensitive and some days even my clothing touching it is enough to cause pain and discomfort.  If I find myself in a situation where I need to run (which I try hard to avoid), it feels as though my boob is going to detach like a tennis ball being catapulted at 160mph by Venus Williams’s serve only then to forcefully land back onto my body with an almighty jolt as the force of gravity makes me take two steps backwards.

On a day-to-day basis I feel as though I have been shot with a tranquilliser dart big enough to stun a horse. Fatigue is simply an understatement and on some days by 10am my body is drained as I walk around zombified. I refuse to go to sleep early in the day, clinging on for as long as possible and usually find myself catching a ‘nana nap’ just before the kids come home or before supper hoping no one has noticed.

The fatigue is generally not helped by the sleep deprivation during the night and the constant tossing and turning of the duvet, will I be hot or will I be cold – who knows! I have learned to surrender to it rather than fight it. I think if you resist the sleep it becomes stressful and a self fulfilling prophecy.  I have learnt over my weeks of increasing insomnia to surrender to the feelings and instead of willing myself to sleep, accepting rest will suffice in-between the long periods of awakeness. When my mind starts to wander as it does sometimes, I meditate to bring it back and give me a fighting chance of peacefulness. Of course sometimes it has a mind of it’s own and is totally uncontrollable and on those occasions I fall out of favour with it and give it a serious talking to.  Everything you read suggests you should come downstairs and put the kettle on but I fear I’d never get back up the stairs because I know I’d find something to do on the ‘lets tidy up’ front.

Since the hysterectomy, I have become incredibly emotional. I can be having a perfectly normal conversation about a typical part of my day and for no apparent reason burst into tears. This is so unlike me. I have needed lots of hugs which is untypical and there has been an immediacy to needing support with my emotions. My husband has been truly amazing and I would have been lost without him.  When I was contemplating the surgery I had not considered the emotional implications I would experience. In many ways I feel like the teenager who has started her periods – full of heightened emotion and struggling to express them.

It has now been 12 months since my initial diagnosis and over the last few weeks I have spent much time thinking about what has happened over this period. I don’t know whether it has been my heightened emotional state or perhaps time to finally reflect on life’s events, but I have found it difficult to come to terms with everything that has happened from the diagnosis; the surgery being cancelled; the further delay to the surgery; dad being so poorly; the unexpected breast cancer diagnosis (as I was initially diagnosed with DCIS); radiotherapy; commuting to 2 hospitals in two cities; my husband changing job; the impact the whole situation had on our family; the guilt you feel and helplessness when you are in this situation and then of course a hysterectomy. I haven’t been wallowing in self pity but more coming to terms with the enormity of what has happened for the first time. I think I have been running on auto pilot and now, my body and mind are adjusting to their new normal, mentally and physically.

I was delighted when I received a letter to say my mammogram was normal though I twitched a little as there is no testing of the bionic boob – (it isn’t breast tissue so traditional breast screening will not suffice). I really do need to, ‘let it go’ as with every new lump and bump which arises, and there are many, I wonder, ‘what if’. I am coming to terms with uncertainty.  I know it will pass as hopefully, there will be more time between the diagnosis and today and I will get used to emerging lumps and bumps in a reconstructed bionic boob which has been zapped with radiation.  At an appointment with the plastic surgeon the last week, she actually said ‘it’s so taught and so full, it looks like you have an implant’ and it does – it’s like a cantaloupe melon, shame its sister is more like an over ripe avocado…

When I saw the plastic surgeon she was clearly very pleased with her work admiring me like an exhibition at the Getty Museum, as I stood there, one nipple on, one nipple off.  I had gone open-minded – wondering whether more surgery was really what I wanted or needed right now – and yet as soon as she opened her mouth and started talking about how much better the overall look would be once she had finished sculpting, taking a little bit of fat from here there and everywhere to fat fill my left boob and shave a little off the bionic boob to minimise its overall plumpness – I was sold. Her defining line, “having a breast with no nipple it’s like having a face with no nose “. I’m not quite sure I agree to that extent but I could see where she was coming from and given my dressing table is covered with glue from the prosthetic nipple I attach on a daily basis not to mention the odd bit of cotton wool that gets stuck to both dressing table, fingers and nipple as I am doing my make up, it will be a blessing to have a more permanent solution.

A couple of weeks ago I was getting ready, I had put glue on my nipple and left it to dry for the required five minutes before applying it to my skin only to forget about it and discover it attached to my ponytail! Can you imagine going to Tesco with a nipple in your hair – OMG!  As the plastic surgeon was summing up, I was increasingly buoyed up at the prospect of nipple reconstruction surgery having gone in fairly disengaged only then to be told right at the end there is a likely two year waiting list. I got in the car, phoned my husband and cried all the way home at the prospect of this chapter not ending for another two years.

In Kundalini yoga, Yogi Bhajan says “keep up and you will be kept up”, this mantra can be applied in many ways, to remind us that the road to mastery takes perseverance; to encourage us to commit to yoga which in turn helps us to see through life’s challenges. The message I take from it now… it’s about the thoughts we think and the energy those thoughts help to create, good or bad, positive or negative. We have a choice.  It is easy to become all consumed by negative emotions, ill health, fear and uncertainty but it we keep up and try to reorientate those thoughts, find the time to be grateful, seek compassion in all we do, we will be kept up.

Thank you for taking the time to drop by…

Much love, Toots xx

Hysterectomy, Post surgery, Surgery

Joining the Hystersister Brigade…

“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!

MHB Pebble

“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.”

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