Name: Tassia Haines

Age: 29

Region: South Wales

Diagnosis: March 2016 diagnosed with primary BC, Stage 3, Grade 3, HER2-& ER+, BRCA-.January 2020diagnosed with MBC, Stage 4, Grade 3, same sample switches between HER2+&HER2-, Although I do not respond well to trastuzumab. ER+.

Age at Diagnosis: 24 Primary & 28 Secondary

Despite having previously “got over” primary Breast cancer at the age of 24, and having had the pleasure of being chopped up (Mastectomy), poisoned (chemo), and burned alive (radiotherapy), the insidious killer slowly spent the last 3 years developing inside and manifested itself into inconceivable hip, rib and back pain.

I was unaware of the red flag symptoms of metastatic breast cancer and that there was a 33% chance of me developing (and dying) from this disease… Regrettably, from the assessments I had within a month, it was clear the doctors were also uneducated on this surprisingly common beast. I was ignored, sent away, and made to feel like a hypochondriac.

When I was crying in pain, couldn’t sleep, and hardly walk, they told me to “carry on as normal”. Eventually, the lack of sleep, nausea, and excruciating pain lead me to collapse on the roadside and left me unable to walk.

I worked as an outdoor activity instructor and was incredibly active, it was a miracle I never broke my neck or back whilst jumping down zip wires. If my doctor had been aware of the obvious symptoms, I would not have had to spend 8 months trying to walk again and could have achieved some much-needed quality of life.

Finally, on January 30th 2020 we received the devastating diagnosis of incurable secondary breast cancer. The cells had been growing slowly over the last three years, making their way from the spine and spreading up as far as my skull, behind my left eye, and all the way down to my right femur bone. I was fairly depressed, my reality became trying to navigate myself through the pain, severe disability, and death…

Death was the easiest to accept out of the three, during this sadistic endurement. This was not the cancer ‘fight’ I was lead to believe-no matter how hard I tried, I lost my identity, became a second-class citizen overnight and worst of all, I lost my ‘spark’.

When a friend and activist Carolyn Gammon died last year, I decided to step into the world of activism and become my own advocate and have not looked back since. I learned about my disease and took control, I changed the medical team and health board, got involved with METUPUK, and started to be able to do the things I love again.

I am currently living in that ‘golden period’ where I might not be able to do exactly what I want, but my new treatment has allowed me to snatch a piece of life back with a fairly stable status. The ‘triangle’ is still there but is faded from the summer glow, but death is never far from my thoughts-it hangs around in the back of your mind during the good times, forever wondering if this will be your last.

Metastatic Breast Cancer is not pink, fluffy, and fun. It stalks, grinds then takes. I have lost 17 friends in a year, they deserved better, we all do…

Why you wanted to be involved with the MetUpUK campaign: There is not enough being done to understand and treat the biggest killer of women under 50 in the UK. MetUpUK is the only advocacy group for MBC that runs purely by unpaid volunteers and the group works tirelessly to empower patients into being their own advocates. It is a realistic group, which parks toxic positivity and focuses on the real matters at hand-Diagnosis, patient care, and clinical trials. my thoughts-it hangs around in the back of your mind during the good times, forever wondering if this will be your last. Metastatic Breast Cancer is not pink, fluffy, and fun. It stalks, grinds then takes. I have lost 17 friends in a year, they deserved better, we all do……

Twitter: @TassiaHaines
Instagram: @TassiaHaines
Blog/website: pinkisnotmycolour.weebly.com
Tiktok: @malbec1991        

Spread the message