04. SuperSue…
This is my perception and experience of my mum’s journey with breast cancer. I am not a Healthcare professional.
My mum found a very small lump on her chest. Some people might have ignored it, thought nothing of it or left it for a while. My mum, who has had a very healthy life and doesn’t ever want to cause a fuss made a choice to be proactive and got it checked out immediately with the GP. I believe that this single, and timely decision, laid out her journey over the coming year.
“The fact that she checked herself, the fact that she spoke up and saw her GP straight away, I believe, is one of the most important factors in the outcome of her journey”.
She had initial scans and a biopsy. These two initial checks confirmed that she did indeed have breast cancer. They also biopsied her sentinel node (lymph node near your armpit) to check the risk of metastases - has is spread anywhere else in the body? For some reason they were struggling to get a good enough sample and mum had to go through a Fine Needle Aspiration on a couple of different occasions. The wait for the node biopsy was hard and felt like a lifetime. It was so important to get this right as it would support the medical team in determining the stage of my mum’s cancer. Knowing the stage is a factor in determining your treatment options and some might say you also get an idea of prognosis… what are we really facing here.
We eventually had all the facts:
- Triple Negative Breast Cancer (where the cancer cells don't have estrogen or progesterone receptors, or HER2 protein)
- Grade 4 (grading refers to how different the cells look compared to ‘normal’. 1 is close to normal and 4 is most abnormal - showing its level of aggressiveness)
- Tumor size 1 (2cm)
- Nodes 0 (there were no signs of cancerous cells in the lymph nodes)
- No distant metastases
We were looking at Stage 1 - we were looking at early breast cancer. This, along with how fit and healthy my mum is, opened up treatment options and surgery despite her being 76 years old.
“I work in pharmaceuticals, I used to work in breast cancer. I felt informed, connected and in a position to fight alongside my mum to ensure she got the best of what she was eligible for and had a smooth experience”.
Now armed with the details I could start talking to colleagues and oncologists I knew. I had not worked in breast cancer for a number of years and I had never worked in triple negative - all I knew was that in the past there had been no targeted treatments…. but maybe something had changed. Everyone was so helpful, informative and immensely kind. I needed to know that all the options were on the table for mum.
This quest for knowledge was my thing. I was very careful about how I talked to my mum about this. I did not want to overwhelm her, make her feel like I was making a fuss but I also needed to be honest and have her consent to have these conversations. She understood and knew this was one of my ways of showing her how much I love her. I took on a similar role when dad was unwell and I wanted to do the same for her.
I remember mum telling me once about how dad and her visited a doctor, back in the 70’s before my mum underwent novel and major surgery to help with conceiving a baby. The doctor asked if they had any questions and my dad said “are you any good at your job - would you do this to your wife”? He asked it with such love and was prepared to walk away if he didn’t feel my mum was going to be safe. My mum was the most important thing in his whole world - he talked about this in the last few days of his life.
“I guess I was now playing the protector role, wanting to make sure she had all she needed. Let’s face it, it’s what you do for the people you love most… you fight”.
After many frantic and fast discussions (I didn’t want to delay my mum’s surgery if we didn’t need to!) I felt assured and confident with the treatment plan laid out for mum. I committed to be with her every step of the way. For now, that was surgery in 1 week. I live a 2 - 3 hour drive from mum and have 2 young kids so my commitment of support could not have been possible without my incredible husband, my wonderful in-laws and the most understanding and supportive company in the world.
It was an early morning start in March for the surgery. I dropped mum off, made sure she was checked-in and taken through. It was then a waiting game…. I got the call to say she was in recovery and all was well. I stayed with mum for a few days to support her and then left in her the very capable hands of her amazing local network. Mum has the best friends and neighbours - all so kind, supportive and reliable. I guess this says something about how good of a friend and neighbour my mum has been over the years too.
A short while later we had a follow up appointment with the surgeon and breast care nurse (who was an angel - what a woman). The surgeon was amazed by my mums recovery and how she was coping with everything. I had to remind him that my mum was no ordinary 76 year old, she was a Hayes. My dad was SuperTed and it’s about time we started calling her SuperSue!
It was at this appointment mum was told she was to be referred to an oncologist to talk about chemotherapy. Although we had talked about this on numerous occasions this news hit mum quite hard. Mum had been doing so well at staying in the moment and not jumping ahead. Her breast care nurse had been amazing at just talking about the next step and not overwhelming her. From my own personal experience, and now supporting both parents through cancer, I believe that in most medical appointments people struggle to take on, understand and remember all that is being said to them. My top tips would be:
- think about what questions you want to ask before the appointment - write them down
- take your time in the appointment, go through all your questions and do not feel rushed
- write notes, or have some-one with you to do that for you, in the appointment so you can look back over them in your own time
- do not be afraid to ask someone to slow down and explain things again or in a different way to make sure you understand
Mum had clung to one comment from her first appointment “chemotherapy may or may not be needed”. She remember it as “chemotherapy - not - needed”.
I came back up with mum for her first oncology appointment. This was at the hospital where dad had received his radiotherapy. Neither of us had been back since. We checked into the waiting room and within a few minutes mum became very upset. She was embarrassed and apologised for crying in public. I told her never apologise and never feel judged for being authentic - it takes strength to be real. I had assumed her upset was due to fear - now sat face to face with many people living their own journey with cancer. Some looked well, some looked very unwell… was my mum scared of her future? I was wrong, she wasn’t bothered by the cancer - she was overwhelmed with emotions of dad. Their love was one of those you read about in books or is portrayed in a movie…. not an obvious in your face ‘soppy’ love but a deep rooted connection of love and trust built over decades of hard work, compromise and forgiving each other. They were soul mates and now in a difficult and challenging moment of her own, her thoughts were still with dad.
The appointment went well. The oncologist laid out a treatment plan and explained some key numbers specific to my mums diagnosis and type and cancer. Essentially chemotherapy was preventative, a choice, and we would not know if mum would benefit from it or not.
Saying yes to chemotherapy meant she would have systemic treatment to remove any micro-metastases (if they existed) and reduce/remove the risk or metastases - a new secondary cancer growing. But, she would have months of treatment, appointments, potentially unpleasant side effects and a recovery period.
Saying no to chemotherapy, for my mum, meant getting on with her life now at 76 - living what was left to the fullest and not ‘wasting’ her time in hospital. But, at the risk her cancer could have spread and if it had it won’t then be stage 1 and early - it would be different and she’d end up back in hospital, having treatment but with a very different prognosis.
Mum, having hardly taken any medication in her life was not convinced. The one thing she knew was that she was having her trip to America to go see her sister no matter what. She agreed with her oncologist to delay chemotherapy, to be booked in to start in May - after her holiday and she’d take this time to decide what she was going to do.
Was she or wasn’t she going to have treatment? The thinking and anxiety seemed to go on for an eternity. But it had to be mum’s decision. This was not for me, or my sister, to sway her - only she could decide.
