Sarah’s journey follows her from diagnosis, through treatment in a way only she can. It comes straight from the heart, containing valuable and little-known insights, tackling treatment and symptom taboo with a sprinkling of self-deprecating humour. Sarah titles her journey ‘My boobs, a marker pen and a wonderful lady named Orla.’
#1 Rowing on through diagnosis
So, it’s September 2017 and I’m in Dublin at a rowing championship, three weeks after being diagnosed with Breast cancer. I didn’t decide until two days before that I would compete as I was understandably having a bit of a crisis.
I had grown a small tumour and I had not found it. It had been detected at the routine screening. Worst case scenario it was only twelve months old as it was not detected at the previous routine checks, well that has to be good news. I considered naming it, but nothing that can be repeated here.
Orla, my breast care nurse at Charing Cross Hospital, called me seconds before I entered a Dublin hostelry on a pre-race day pub crawl and just seeing the hospital number come up on the phone was enough to raise my heart rate to blockbuster levels.
Orla was great, she got me laughing and explained everything in terms I could understand about my imminent surgery. Then I had a few drinks, followed by a few more. I let my hair down for the first time since D-Day (Diagnosis Day). I achieved a little bit of escapism for a few hours. And then a headache.
I raced, won, celebrated and drank some more. On departing the race venue, I told all my fellow competitors to watch this space: I would be back for next year’s competition. The kind words and hugs on departure were overwhelming, I do hate it when people make me cry.
On meeting with the consultant (what a legend!) and Orla, the next few weeks were explained to me. The surgeon quickly got a handle on me and was direct and straightforward with no fluffiness, this is me and I respond best to this direct approach.
Orla sat back and watched me, listened to my replies. On finishing, Orla and I went into the next room where she asked if I understood the process and she got me some of the relevant booklets that covered every aspect of surgery, recovery, support and so forth. She was fab and I had a large bag of information. Everything was (sort of) ok until she asked how I really was. Then everything was not ok, that was it, the flood gates opened, and I cried long and hard with her. She was very comforting and didn’t once comment on the mascara that had made it’s way around my face. She was with me at nearly all my appointments and called me almost every Friday to touch base. She always had me laughing and she had a calm and reassuring demeanour at all times.
#2 The tumour twins and the complimentary breast lift
The next time I saw the consultant, Mr Ragheed Al-Mufti he drew what would be my boobs on my notes with a sharpie marker pen and explained what he would be doing during the surgery. Ok, the examinations were a trifle embarrassing, but I was a bit past caring after last year’s probing. He told me he would be “technically” giving me a breast lift as he removed the tumour. I WAS MORTIFIED as I didn’t think I needed a breast lift. He said when he had finished, I would have the assets of a 21-year-old! Is this really a good look at 52?
I had a few more scans and it was determined that I was to go to plan B and have the nipple removed as I had in fact grown two small tumours right behind it and they would be a challenge to remove (Hell, I have twins, another name to think of).
#3 Surgery day, the budding physicist and the sculptor
Surgery day came around and I was dropped off by my daughter who then went on to school as usual. Good for her I say, resilient and grounded. She was studying for her A Level Mocks in Physics. I had wondered why she wanted to come and watch me have the radioactive injection and why she was asking so many questions to the needle wielding gent in the dodgy overalls and visor.
Mr Al-Mufti came in to the room I had been sat in with Orla and explained what would happen in the next few hours. He asked me to remove the gown to my waist (by this time I just take my clothes off from the waist up as a matter of course, no one needed to see my legs) and then proceeded to draw all over my right boob with his black sharpie pen.
Plan A was back on the table and it matched his first artwork, he said he would endeavour to save the nipple. Other surgery may be required if the “cells shaved off the back of the nipple” came back containing cancer cells (oh Yuk… the mere thought of this made me want to heave and still does).
Concerning as it was, he wanted a “before” photo, so I was naked waist up, standing against a white wall covered on one side with a lot of marker pen, three other people in the room along with Orla and a camera. I asked if he had done art when he was at school to which the answer was yes, he also said he had done sculpture too… what a result!
I was advised that the next process was to have my lymph nodes removed from my right arm pit, again with the same surgeon as they have found a few of these despicable cancer cells there too. Orla walked me through this but on my request didn’t ask how I was as I didn’t want to fall apart in front of her again. She had been rostered to a nearby ward and popped in just after the surgery as she “liked to keep tabs on her ladies”, she came and sat with me for about twenty minutes, and we laughed loads.
#4 Chemotherapy: nasty word
So, recovery from both operations have gone well and we are now well on the way to Christmas and the New Year so I can write off 2017 as just a pants year… Wrong!
Just before Christmas I was told I was to have Chemotherapy. Now as I thought everything was just fine and dandy, this wasn’t a conversation I was expecting to have, it just never occurred to me, I had always regarded myself as Immortal. I was handed an EIGHT PAGE document of possible side effects, the oncologist explained each one to me but I wasn’t listening and the mascara was making its way around my face again.
Orla had scraped me up off the floor by this stage, had her arm around my shoulders and still didn’t ask how I was, she is learning well! More likely she could see how I was, so had no need to ask the question.
I was given Christmas and New Year and treatment would start on the 5th January… so I drank a bottle of wine on New Year’s Eve. Please don’t be under the impression that I have a drink problem, I stopped any alcohol consumption thereafter as I didn’t think my body needed anything else to filter out along with the ‘bleach’ I was about to be injected with.
Chemotherapy, nasty word. Implies lots of other nasty things. To be honest, for me, it was nowhere near the horror story I had in my mind. Yes, I got tired, had headaches and felt a bit nauseous each time but I resolved this by eating. It worked for me; cream doughnuts, cakes and biscuits with every mug of tea. I ate every mouthful with a clear conscience, not caring if I gained weight as this during Chemo was considered to be a good thing as it meant I wasn’t losing weight and reacting against the drugs.
I didn’t need to take the anti-nausea tablets provided, one less thing for my body to filter. The only nausea coming from “just one more wafer-thin mint” I’m not even going to talk about the damned injections into my ever-expanding doughnut filled abdomen for five days after each session… argh, me and needles will never be a happy partnership! It’s not as if you can surprise yourself when you are having to do your own injection!
Yes, I have ended up with a short haircut, the cold cap did work for me with about 45% hair loss, but I cut it short to take the weight out of it. Yes, I lost hair everywhere else (yes everywhere else!) and I didn’t have to shave my legs or armpits for 6 months, all the “peach fuzz” was gone from my face. Without all the effort of product application, my skin was great, and I am through the menopause *Runs around room punching the air and cheering loudly*
My eyebrows and eye lashes fell out causing me to look remarkably blank. As it is fashionable to draw eyebrows on these days, I tried…. Oh how I tried….one looked great but damned if I could get the other to resemble the first effort. I gave up on that and remained blank for a few more months.
#5 Radiotherapy, rowing, winning
Next was the radiotherapy. Each appointment lasted only about 5 minutes and 19 seconds long (five minutes to get undressed and dressed, 19 seconds of treatment, to be fair it was probably longer than that with the positioning in the machine) every day for three weeks and normally around 12:30 in the middle of the day. On completion I had a nice 12inch square of sun tan over my right boob whilst the rest of me was sickly pale as I had been advised to stay out of the sun. This was a bit hard this year as the weather was screaming hot. So, I am back at work full time, I raced at the 2018 rowing Championships and I won. OK, I had a heap more appointments than listed above, little steps on the way during a long, unplanned walk. I was guided through the entire process by some very special people, and it has been a pleasure to have met them.
I’ve learned loads of things like freezing pineapple juice in ice cube trays and sucking on them as an enzyme they contain helps to stop the inside of your mouth getting sore; chewing/sucking sweets whilst the cold cap cools which kept my mind occupied so I didn’t focus on the cold; painting your finger and toes nails to prevent flaking (there are some groovy colours out there!)
And I learnt how to deal with my reactions, emotions, feelings and the responses of family, friends and colleagues. When I felt angry, I thrashed it out in the gym and when I didn’t feel angry…. well I thrashed it out in the gym and ate cake afterwards.
#6 Recovery, confidence and fitness: Courage does not always roar
Recovery from the surgeries, I believe has been made easier by my physical fitness/healthy lifestyle and maybe more by my mental determination to not let this affect me or my life going forward. Of course, it has knocked my confidence, but this creeps back daily as does my fitness. Needless to say, my Managers have been incredibly supportive and that of the organisation I work for, we also have a cancer support group that I now help with whenever I can.
I am back in full training, I’ve joined a new rowing club and have started racing longer distances. Hell! I may even run a marathon! (That was a joke, that will never EVER happen. I hate running and much prefer sports where I can sit down).
Imminently I will be having the last bit of Surgery to “balance” me up. I look a bit daft at the moment, my right boob is nice and pert and the left can almost be tucked into my belt. Hurrah for Marks and Spencer’s sports bras.
My life’s priorities have changed, and I even got a tattoo! (Additional to the radiotherapy ones where I asked for a dragon but got three blue dots instead).
The single most difficult thing through this was the first time I combed out my hair. I knew it was going to fall out to some extent, but nothing prepared me for the shock when it happened. It has grown back with no issue, but I still sport the short haircut.
I visited a few hair dressers to ask about “chemo hair” but sadly they knew nothing that would help. It might be worth noting that after my internet research I found that Trevor Sorbie has many salons and some if not all the staff in his shops are trained to deal with chemo patients. The lady who dealt with me early on was everything I needed in personality, understanding, knowledge and skill. I am now a regular there and love each visit.
I feel redesigned, reinvented and reinvigorated and revisiting my immortal standing in life. Sadly, I have had to start shaving my legs again but that’s a good thing isn’t it? I look forward to seeing Orla again next week as she has been such a rock in my unforeseen voyage, she is truly an asset to the NHS as are all the other staff I met in this unit. The whole experience has been what I perceive to be an “inconvenience” in my life, but it is the new normal for me and it’s made me stronger and more resilient.
For me it’s PMA all the way. POSITIVE MENTAL ATTITUDE.
And the tattoo? Simply: Courage does not always roar (in Latin as it looks artier!).
#7 My lifetime membership
In October I had some more surgery, this time to balance me up. Once again, I had a chest full of marker pen! There was about 1 ½ inch disparity in the height of my nipples but Mr Al-Mufti, the perfectionist that he is, has lifted my left side to match the new right side. He even said that I was pointing off to the right slightly from the original surgery (I hadn’t noticed this) so he corrected that too. The results are incredible and Orla continues to make me laugh.
I feel truly amazing and I am venturing away from Marks and Spencer’s sports Bras into something a bit more Victoria’s Secret! Hell, I might even buy some new Knickers to match!
I have signed up to a clinical trial, this won’t assist me in anything but will hopefully help others in the future, at least in my current position I can do something positive going forward. I continue to train in the gym and on the river and my confidence continues to bounce back, I endeavour to improve on
the healthy eating plan I have in place but continue to enjoy cream cakes, sweets and crisps with a clear conscience.
I cannot thank Mr Al-Mufti and Orla enough, also the extended medical staff and the NHS, their expertise has made this journey much easier for me to deal with, this in turn has made it easier on my family, especially my daughter.
I am part of a club, one that I never considered about joining and whilst there’s been no annual subscription fees to pay, there has been some great friendships made, some open and candid conversations had, and it didn’t matter if we broke down or not. You never know the private battles people have going on, they may seem like they’ve risen on the “wrong side of the bed” but there may be a bigger issue that they are dealing with.
Controversial as it may sound, this diagnosis has been one of the most positive things to have happened in my life as it has changed my mindset from “yes, I really must go there one day” or “I will do that soon” to embracing each day as it happens. I will do the things I have put on hold and just go for it!
Bring on the World Masters Rowing Championships in Hungary next year… I feel Epic!