May

My Story ….

I have chosen for my identity to remain private because in 2021 at the height of COVID restrictions, schools closed to most and vulnerable people being told not to leave the house, I embarked on 22 weeks of chemotherapy.  I had 2 children aged 8 and 9 who were stuck in the house witnessing the horrific,daily effects of my treatment.  Eventually, school allowed them in during the day as vulnerable children but they had to strip in the porch, shower and clothes were washed immediately.  The impact on them was huge- they couldn’t escape it by going to friends’ houses or grandparents’ houses.  They literally had no time away from it.  My son needed counselling such was the impact and he is terrified ‘it’ will come back and it will happen all over again.

So, when I got my secondary diagnosis I was determined they would not be put through that again.  I haven’t told them ‘it’ is back.  They don’t need to know just yet- let them have their childhood.  Every time a treatment fails (and so far three have) I ask my team ‘is it time ?’ They know I mean is it time to tell my beautiful, brave children.  To date they’ve answered with one voice- Not yet!

So they don’t know and they don’t need to worry- yet.  They know I have a bad back - who doesn’t at 48?  They know I take lots of tablets - for my bad back.

They live their lives happily, freely, not in fear of mummy dying.  This is how I want them to live.

I received my primary diagnosis during COVID – October 2020; although I knew earlier but they wanted to do lots of scans before they confirmed a primary diagnosis.

I had been to my GP 8 times with breast pain in the 2 years prior, to be told I was too young for it to be breast cancer.  I wasn’t too young, and it was breast cancer. 

I had a mastectomy during the second lock down – November 2020.  They discovered that my tumour was 135mm, instead of the 34mm that showed up on the breast MRI – nothing showed on the mammogram or ultrasound!  Invasive ductal carcinoma and in 8 out of 15 lymph nodes.  “We are going to throw the book at this,” said my breast surgeon and so they did.  22 weeks of chemotherapy – the dreaded red devil and paclitaxel.  15 days of radiotherapy to my chest wall and clavicle nodes.  All done by July 2021 and “Off you go!  Ring the bell!”

Fast forward to January 2022 – chronic back ache.  GP told me effects of radiotherapy.  February 2022 – chronic backache.  GP prescribed some medication.  March, April, May – pain intensified.  June 2022 lung CT (a few nodules found during primary diagnosis – not cancer but needed an eye keeping.  July 2022  - I phoned my breast care nurse about the pain and the fact I hadn’t had my results of the CT.  August 2022 – phone call from breast surgeon: “You haven’t had any problems with your back, have you?”  Are you Sh£$ing me!!!!  Something seen on CT on my spine.  Spine MRI ordered.  Off I went to North Wales on holiday with my beautiful family only to receive a phone call from BCN to say we have booked an appointment for you at Christie’s on Wednesday.  Erm…I am on holiday it will have to wait.  “It can’t wait”.  Why???????  “You have secondary breast cancer in your spine.  You need a full body MRI and to start treatment.”  WTF!!!!!!!  I was sat on a wall in North Wales on my own when this news was delivered.

I had no knowledge of the signs and symptoms of secondary breast cancer.  If I had known, I would have fought harder, sooner.  I should have walked away from my primary treatment with some knowledge.  This is why I am joining the campaign.  So that everyone has the right information at the right time and given with compassion.

I am living well with secondary breast cancer and hope to for many more years.  I work full time, despite side effects.  I go places, eat out and am very busy making memories for my children who at the time of my secondary diagnosis were 9 and 10.  They do not know about my secondary diagnosis, and I will keep it that way for as long as I can.  I feel supported medically by my team and have found my tribe on Facebook groups like Make seconds count.  Having this diagnosis has opened my life up to new people like me, who get me, who understand.  I love them all!  It took me time to find my tribe and this is why I am supporting Make Seconds Count.

So if you are newly diagnosed or supporting someone who is…there is hope!  You can live with this incurable; treatable disease and you can do it your way!  Love and strength.