Post surgery

Keep up and you will be kept up…

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“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

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