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.
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.