Having recently been asked to support my local breast cancer group with a conversation around menopause; I was quite literally inspired by the women I met, their experiences and the impact that not only breast cancer, but menopause was having on their lives.
Again, this just felt like another untapped area within my wider work that I needed to understand, research, and put out there.
Coincidentally, the beautiful lady who helps me with my marketing knew of the perfect person for me to speak to and it so happened she was willing and able to meet me in London the very next week.
So…over a couple of drinks and a completely open and honest conversation, with me asking some very deep questions, I am absolutely humbled and delighted, in equal measure, to be able to share this very personal story with you.
It is being shared, as always, in order to educate and support others and for us all to realise that you never really know what is happening in someone else’s world; even when they are cycling to chemo in bright glittery pink shoes!
19 May 2020
The day that Sharon will never forget.
As a physiotherapist working in London for the NHS during the Covid19 pandemic, Sharon, as with many of her colleagues, was deployed from her physiotherapy role, to an intensive care unit. She was moving and lifting patients with physical and respiratory illnesses. She lifted a patient to lean on her chest and she felt it – there was a lump.
Sharon was used to finding breast cysts and having them drained and really didn’t feel any cause for concern.
Sharon was 39 when she walked into the hospital for her mammogram on the lump. This was followed, as she expected, by an ultrasound, which led into a guided biopsy. At this point she questioned the consultant, as a biopsy wasn’t usually necessary and was told that it wasn’t a cyst and there was ‘something’ there. The lump was clipped and Sharon described her immediate gut feeling. She knew.
She left the hospital, got back on her bike to cycle home in floods and floods of tears, whilst attempting to phone her friend and tell her what she knew was happening.
Sharon explained this day, 19 May 2020, in such intrinsic detail. From the dress she was wearing, to the lady who stopped her on her bike to ask if she was okay, and to her friend who was struggling to understand what she was saying through the tears, but knew to run to meet her with a bottle of gin!
19 May 2020 – the day her life and she changed forever.
A week later it was confirmed.
Grade 4, stage 2, triple negative breast cancer.
23 weeks of chemo (twice weekly for 4 cycles).
Weekly for 12 cycles, but she only got to 11, as the chemo was literally killing her.
The lumpectomy was timed just before Christmas 2020.
Christmas 2020 – Sharon spent it solo, recovering from a lumpectomy and chemo, and with Covid. There really aren’t any words to describe this Christmas for Sharon (or not ones I can type!)
Please note – glittery pink shoes, 1950’s styled colourful dresses and bright red lipstick helped Sharon ignite some colour and attention in the hospital on the deeply dark days of treatment.
February 2021 brought 5 days of radiotherapy.
That’s it.
The final radiotherapy treatment takes place and Sharon describes walking out of the hospital, getting on her bike and riding home.
What’s next? A once a year oncologist appointment and yearly mammograms.
Q. What did Sharon feel?
A. LOST and ALONE.
Q. What is Sharon left with?
A. The stark reminder of her cancer every single day she looks in the mirror.
Why? Because she looks completely different.
Her hair was straight and brown and now it is curly and grey.
Physically – one breast is slightly smaller than the other and with a blue tinge in the top corner, a nice reminder of the surgery! She also deals with chemo induced peripheral neuropathy which affects walking.
Mentally – the words “there is no evidence of disease” and the feeling that she was supposed to be grateful for this outcome.
Oh yes…and an induced menopause.
In summary, Sharon went from diagnosis, chemotherapy, lumpectomy, covid and radiotherapy in the space of approximately 7 months. All with no family support, as they lived in Northern Ireland, and all whilst living through a pandemic. She finally saw her mum in June 2021, over a year from her initial appointment. Please take a moment to consider this impact on a human being.
Sharon has chosen to find an empowerment from her lived experience. She wants to talk about it, she wants to support others and she describes it as ‘holding up a mirror to life’.
Sharon’s saviour following treatment has been cancer support groups.
Some of Sharon’s friends have been truly amazing with support, but she went on to describe how others had ghosted her. They couldn’t deal with what she was going through, they didn’t know what to say and therefore they removed themselves from her life.
I asked Sharon if any medical professional had ever really asked her “How are you?”
“No really, how are YOU?”
I knew the answer before she told me, as I had heard it before. “No”.
Yes, the oncologist asks about treatment and side effects etc, but no one really asks about the human. This appears to be a common trait and one that could be improved upon. No one even tells you what support is available in your local area.
Then comes menopause…
I asked Sharon at what point menopause was mentioned and in what detail?
Sharon explained that the word ‘menopause’ was used when she was diagnosed and in the following context:
“Do you want fertility treatment, as you may go through menopause following your cancer treatment?”
Sharon had never felt the need for children and therefore the answer to this question was a simple one.
Menopause was not mentioned to Sharon again.
After 4 cycles of chemotherapy her periods stopped. She was 40 years old.
During Christmas 2021 (just after the lumpectomy) the menopausal symptoms started, coming in the form of hot flushes and horrendous joint stiffness.
Sharon contacted her GP and raised the issue of these menopausal symptoms. She was told there was nothing they could do and, “well it would have happened anyway.”
Sharon chose not to accept this response and demanded she was referred to a menopause clinic.
Sharon explained her 45 minute phone consultation with the menopause specialist, as the first time throughout all of her treatment that somebody actually listened (apart from one call with an oncologist).
The menopause specialist took her time to really explain menopause to Sharon and even though her breast cancer was not oestrogen fed, she didn’t prescribe HRT. She prescribed a supplement to help with her joint pain and a low dose of antidepressants to help with the hot flushes. Yes, these have helped, but the symptoms still persist.
Sharon also experiences other menopausal symptoms such as, anxiety, sleep deprivation, night sweats (the much-needed fan on all night).
She understands that weight bearing exercise will help support her and she also knows that red wine might trigger the hot flushes and night sweats… (she is working on that one!)
Sharon explained that her friends are not menopausal and, as much as you wouldn’t look at her or talk to her and think she lacks confidence; she does when it comes to dating.
Sharon’s low self confidence isn’t new, but she used the phrases “who would want me?”, “old and shrivelled up” and “who wants to hear about cancer and menopause on a first date?”
To flip this into a positive, I obviously told her that she was an absolute prime candidate for First Dates Hotel (which I adore), and I was going to apply for her if she didn’t!
Sharon is 42 and is a simply wonderful human being. I have only met her once and chatted for 3 hours straight.
My deeper questions:
Q. Do you live in fear of cancer returning?
A. Constantly.
Q. If you could have changed one thing (apart from the diagnosis) what would it have been?
A. I would have found my tribe. The support groups I am now part of, following treatment, are like my extended family and I urge anyone in a similar situation to find their own tribe.
In summary
I am not pretending to have a wealth of knowledge in this area, but from the individuals I have spoken to and the information I have gained; there appears to be a vast gap between sign off from treatment to menopause support.
We need to fill the gap.
We need an educational piece of what to expect after cancer and a link to support. Whilst there isn’t one; Sharon’s advice is “Be your own advocate, because no one else will be.”
Sharon found herself extremely fortunate to work for the NHS and to have adequate sick pay. Sharon would not have been able to return to her previous job of a full time physiotherapist, but has been fully supported by her employer to switch job roles. If this had not been the case; Sharon would have found herself out of employment.
I asked Sharon if the fact she had to switch jobs during the pandemic and have a patient leant up against her chest was her saving grace? She explained that even though she found the lump this way, she was someone who was signed up to Coppafeel, which sends a monthly reminder to check your breasts and we both recommend you sign up now!
55,000 women a year get breast cancer.
10,000 are under the age of 50 and out of that 10,000; 2,300 are under 40 and will potentially have a premature menopause.
Supportive Links:
https://breastcancernow.org/information-support/support-you/younger-women-together-0
https://www.facebook.com/shaftesburybreastcancerawareness/ (Dorset based)
They also run the Moving Forward Course regularly.
https://breastcancernow.org/information-support/support-you/moving-forward-online-course
