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

 

 

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