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