My name is Amanda and I am married with one daughter, aged 29, and a husband who sadly lost both his Mum aged 53, and his aunt (diagnosed at 34, died aged 44) to breast cancer. I have 5 sisters, 3 of us have had cancer of varying types under the age of 50 years. My lovely mum recently passed away from pancreatic cancer. I work full time as an Advanced Nurse Practitioner in General Practice.
This is my 'Storm in a D Cup' Story -(actually felt more like a hurricane in a double HH !)
Like everyone else (until illness affects you), I thought I was invincible. On March 9th 2012, aged 47, I found out I was not!!
It turned out that the slightly firm area on my right breast I noticed on turning over in bed, was in fact a 2.5cm breast tumour. My GP could not feel anything but because I had noticed a CHANGE in my breast, she sent me along to breast clinic. Despite my knowledge that breast cancers do not always present as lumps, I was still convinced I was wasting everyone's time so I didn't bother telling my daughter (birthday and exam week) nor my husband (didn't want to worry him unless something to worry about). So I found myself in clinic, lying in a dark ultrasound room being given the awful diagnosis... 'you have breast cancer' completely alone. My world fell apart!
At that point there was no family history of breast cancer, I have never smoked, I drink very little alcohol, I was not using any hormonal contraception or HRT, I actually used one of the online breast cancer risk calculators and my risk was less than 5%, so 95% of NOT developing it. Whilst there are some known factors which can increase your risk, breast cancer is indiscriminate it can (and does) affect ANYONE, male/female/fat/thin/family history/no family history/smoker/non smoker etc. My only known increased risk was being overweight.
My consultant was unable to offer me a date for surgery until 31 days later... I wanted the cancer OUT! He also gave me several differing treatment options which sent my already addled head into meltdown. How could I choose the right one? I am no cancer specialist, what if I pick the 'wrong one'? I could die, this is CANCER! I wanted someone to tell me what to do!
Many 3am not sleeping/house- roaming/sobbing nights later, I tried to put my 'nurse head' back on and think, what would I advise my patients... find the best consultant for a second opinion, so I googled breast consultants at The Christie and happened upon Lester Barr founder of Prevent Breast Cancer at the Nightingale Genesis Breast Cancer Centre.
At 8am I was on the phone and booked a one-off private appointment with Mr Barr at The Spire Hospital that evening. What happened next was unexpected but completely changed my attitude towards having breast cancer...
As a nurse and also a friend/relative of cancer sufferers (my sister died from leukaemia aged 9 years) and another sister currently having treatment for Non-Hodgkin's Lymphoma,/friend with secondary breast cancer) I commonly witnessed the negative stories, the patients with poor outcomes or whose treatments had been unsuccessful as all the people doing well and fine tend to stay away from their GP Surgery so my perspective was very skewed. I have also diagnosed too many breast cancers, some at a very advanced stage at the point of diagnosis. Many is the time I longed to 'switch off my nursing knowledge and past experiences' and just 'be a patient like everyone else'.
So sitting in a hospital waiting room, waiting for Lester Barr, (who was running late), feeling the most wretched, distressed and despondent a nurse with breast cancer can be, finally his door opened and a lovely woman with blonde hair came out of his room, smiling, laughing and joking and looking the picture of health and happiness and strode off up the corridor...……. that lady was, to you and me, Coronation Street actress Sally Webster/Seddon/Metcalfe, otherwise known as Sally Dynevor, our very own Prevent Breast Cancer Patron. Like many of you Manchester Corrie fans, I had watched life replicating art in her storyline about developing breast cancer in 2009 and had followed her recent personal experience of a breast cancer diagnosis in the press.
At that precise moment... right there, seeing Sally gave me hope! She looked amazing and so well and so happy and full of life at a time when I thought I could never smile or laugh again. She was a powerful visible vibrant presence that demonstrated people absolutely can and do recover from breast cancer and that life does go on and you CAN emerge the other side still with a joyful life ahead of you.
Sally will be completely oblivious to this this brief but impactful moment, we have never met or spoken, I actually contemplated writing to her to tell her what a positive role model in breast cancer recovery she was, but thought she might think I was a strange crazy fan so didn't. My heartfelt thanks to her - she will never know what she unwittingly did that day to give me hope about positive outcomes and life AFTER breast cancer. Thank you Sally!
So that cinched it, if Lester Barr was good enough for Sally Webster (Dynevor) then he was good enough for me (all my treatment was NHS).
Mr Barr was exactly on my wave length 'keep it simple'. My gigantic boobs were an issue, I initially wanted mastectomy, but risks of delay of chemo if complications meant I agreed to wide local excision and sentinel node biopsy.
Treatments did not go swimmingly through no one's fault, incomplete excision margins, 'negative nodes on ultrasound and MRI turned out to be 1 positive node on biopsy. Mastectomy and axillary clearance now needed, breast reduction of contralateral side required as no prosthesis would be big enough to match the missing boob).
I decided to crack on with chemotherapy first, FEC-T, then planned for 'big surgery of bilateral mastectomy (my choice to remove healthy breast) axillary node clearance and immediate reconstruction with implants followed by radiotherapy later. I will skip over the next 5 months of chemo, suffice to say, NOT my finest hour!
So 2nd surgery = HUGE and going into it in very poor shape having only completed my gruelling chemo a few weeks before, only case on the list, terrified but Mr Barr so lovely and kind, I felt in safe hands.
All went well until 2 weeks post op, awful pain and infections, wounds burst open, back into hospital, week of IV antibiotics, then 3rd surgery for removal of implants, wash out and stich back up. As I was being trolleyed down to theatre my histology had come back, further 5 positive lymph nodes, - as much as I was trying to remain hopeful at this point, there seemed to be NO end to the negativity and bad news! I sobbed myself into anaesthesia!
Wounds healed, no boobs, 3 weeks radiotherapy a doddle in comparison to everything that had gone on before.
I had a phased return to work after 11 months of treatment and back to full time 6 months after my return.
Now here I am, 7 years on, still on Tamoxifen with a view to switching to letrozole on my 55th birthday. I still have no boobs. After years of being overweight, I have lost too much weight to create a pair from my belly fat (oh the irony!) and my abdominal blood vessels are not good enough to support the surgery anyway. I could use my back/shoulder muscles but I value my arms too much, - I would rather play tennis than have a set of boobs and I also do not wish to be a patient again unless I absolutely have to. Individual choice - no right or wrongs.
So silver linings...
I am still here :) I appreciate LIFE and TIME so much more!
I have watched my daughter , Harriet, graduate as a Doctor, get engaged, buy a house and puppy and I have just bought my Mother of The Bride outfit for her wedding in 8 weeks time :)
I am 7 stone slimmer and fitter than I have ever been in my entire life.
I strongly feel the very LEAST I can do after all the care, surgery, drugs, radiotherapy treatments I have received is to get myself into the best physical and mental condition I can. Maintaining normal body weight and taking regular exercise has been proven to reduce the risk of breast cancer recurrence and I am doing my utmost to help myself!
I owe everything to the generous and selfless fund raisers who raised money for breast cancer research years ago meaning my treatment today has been more successful than my mother in law's in the 1980s. I raised money for Cancer Research UK by running a 5K (no fit state to even walk it at the time I signed up!) for all the women yet to be diagnosed who deserve the very best evidence- based treatments in the future.
'Breast Cancer Care' were invaluable in terms of information, booklets, phone line support, and the all important 'Look Good Feel Better' day during chemo, and 'Moving Forward' day in my recovery period. I support their charity via a subscription to their lottery and selling their raffle tickets.
Along the way I have experienced the best (and worst) of nursing care and like to think this has enhanced the care I give to MY patients.
Small, kind things MATTER!
Special mention to some exemplary people who made a really awful time that little bit better for me by their kindness and empathy.
·Mr Crotch-Harvey Radiologist who delivered my diagnosis, the worst possible news, in the kindest most sensitive way possible.
·Mr Barr who 'spoke my language' and whose quiet confidence made me feel safe in his care.
·Evelyn Poynter, Breast Care Nurse, one of the most exemplary and special nurses I have met in my 35 years of nursing. Her ability to 'always say exactly the right thing at the right time' and 'going the extra mile, ringing me way later than when she should have finished work one evening because my CT scan result had popped into her inbox showing the 'bony 'lump was not a cancer recurrence and she 'didn't want me to have any more sleepless nights than necessary' - chokes me to type this! What an absolute star!!
· Dr Consultant Radiologist when confronted with a weeping distraught nurse asked 'what can I do to make you feel better'. He asked, I told him, he did it! Compassion at it's best!
·Michele Jennings, colleague and friend extraordinaire, who heard I received very little sick pay, was the main wage earner and that my husband was made redundant during my treatment. She found 18 like-minded people who each paid £10 per week to fund Harriet's first year of Medical School Fees - again, unable to type through tears... :)
Lastly but certainly not least, my wonderful family, friends and work colleagues who cared for me physically, mentally, emotionally and financially, and who remain my fantastic support network. Words will never be enough!
Above all, I have managed to maintain my happy optimistic personality, and the ability to laugh in the face of adversity, however this is sometimes not possible for all cancer sufferers. It is important to acknowledge that the psychological and emotional effects of having cancer are equally as important as the physical effects and due care and treatment should be sought early and given to those where needed/required.
I feel incredibly privileged to be in a position to help with Breast Fest, and be one of the Boobees helping to raise awareness and funding in the Manchester area.
I want to help to raise money to PREDICT AND PREVENT breast cancer in the first instance. It is not good enough just to have to deal with it once diagnosed! I do not want my Harriet, or anyone else's loved ones, experiencing breast cancer if they don't have to.
Identifying individual risks, reducing those risks where possible and targeting a screening and testing pathway specifically for Harriet and all young women according to their individual risks is paramount in PREVENTION. Educating women of all ages to be breast aware, report breast changes promptly, adopt healthy lifestyles, attend their scheduled mammograms but also not to be worried about returning. Just because you have been 'checked out once' doesn't mean you should not report further changes or concerns.
Let's get the word out fellow Boobees and make the women of Manchester the most breast aware women in the country!