In April 2021, when I was told that I had de novo (straight to Stage 4) metastatic breast cancer, this rocked our world as a family and changed our lives forever.
We were in shock, we were in disbelief, we were angry, bitter, and frustrated.
We wanted to turn the clock back, but whilst this was all happening in those first few days and weeks, turning the clock back was not an option.
Not having had a primary diagnosis, I felt cheated, this wasn’t how breast cancer was supposed to work, right?
I should have been told ‘Yes, it’s breast cancer.’
I should have had a clear CT.
I should have had a mastectomy.
I should have had chemotherapy.
Possibly, I should have had radiotherapy.
I should have had a recovery period and gone back to work.
I should have been thankful that ‘it was caught early.’
BUT ……I had none of those things, and instead was told :
Your cancer has already metastasised.
Your cancer is already in your lungs, lymph nodes and sternum.
Your prognosis won’t be any better if you have a mastectomy.
Your cancer is incurable.
Your treatment is now palliative.
A whirlwind of emotions ensued, my headspace was fighting with dark thoughts and questions.
Insomnia allowed me to take on Google as my new BFF, except it wasn’t a friend.
Google told me without treatment, I had 12 months to live, Google told me with treatment, my life expectancy was 24-36 months. Google told me about horrific side effects, failed treatment lines and woefully out of date statistics.
During those restless, sleepless nights and exhausted days, my life seemed to constantly flash before me.
I’d have to give up my tough and demanding job and the salary that came with it.
I wouldn’t live long enough to benefit from my state pension, after paying into the system, all of my working life (funny now, looking back at the things that made me angry at the time).
I wouldn’t get to see my grandsons have their first days in school, I’d have to start making lists for my husband, because how on Earth would he manage when I’m not here?
My head was a mess and all this, whilst starting a treatment that was trying to save my life but made me feel like I was dying at the same time.
So, what about mental health support in all this chaos?
I am sure that some of us have positive experiences and I can’t say that mine was completely negative, but the timing wasn’t great.
On the day of my de novo diagnosis, I was referred to our local health board psychologist; a friendly, professional lady, experienced in medical trauma and cancer diagnosis.
But it was too soon.
I was allowed three sessions, along with my husband. We were still in and out of lockdown in Wales and these appointments were via Zoom, where I tried to make sure that the dining room behind me looked homely and calm, I tried to make sure I’d showered and put on some mascara, and I tried to make sure that I didn’t cry.
Counselling was supposed to be beneficial; it was supposed to make me feel better.
I went through the motions, I tried to be grateful, it wasn’t working.
It was too soon.
At a time when you feel in limbo, struggling to acknowledge, struggling to accept.
At a time when you want answers, at a time when you’re not ready for answers, at a time when there are no answers, at a time when there will never be any answers.
Mental health after any diagnosis is a dark, lonely, isolating place, shutting yourself away, head full of thoughts of imminent death, trying to be strong, carrying on for your family and friends, trying to protect them.
Grieving for the life you’ve lost, your career, your health, your future, your security.
Grieving for the person that you used to be.
Where did she go?
For anyone who has experienced the challenges and emotions of any mental health issues post diagnosis, gradually, through necessity, we find ourselves again.
We begin to be strong, because being strong is the only option we have.
We find our support in different ways.
For me, the support was on my phone, not in psychologists, not in reflexologists, not in aromatherapists.
The support on my social media pages (that eventually replaced Google) was handed out by the bucket load, by incredibly brave, honest, selfless, passionate, knowledgeable women and men, all of whom had been touched by cancer, most of whom had been touched by metastatic breast cancer, people that I didn’t know, names that became faces, faces that became familiar, faces that became friends.
That’s where the advice, the support, the true to life experiences, the love comes from.
That’s where the like-minded souls, help us to cope with treatments and side effects, teach us about self-advocacy, and encourage us to live whilst dying.
That’s where the strength and drive to keep going, comes from.
From those who understand, those who have been through the same, those who are going through the same.
Find your cancer crew.
Get with those who get it!
