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I was working as a palliative care nurse when I found out I had secondary breast cancer

Rachel, a married mum of three, was diagnosed with secondary (metastatic) breast cancer in 2018. She tells us about her experience of living with the disease and the impact it has on her life.

Rachel, a married mum of three, was diagnosed with secondary (metastatic) breast cancer in 2018. She tells us about her experience of living with the disease and the impact it has on her life.

I was working my dream job before diagnosis

I qualified as a nurse back in 1993 and, up until this year, was working as a palliative care specialist nurse in the community. Since my student nurse days, this had been my dream role.

Back in October 2018, age 46, I eventually had an MRI scan of my left shoulder after being treated for terrible nerve pain in my left collarbone for nine months. This nerve pain had initially been treated as a strain or injury. My husband and I were called into the GP surgery to discuss the results. The MRI showed nothing in my collarbone area but, by chance, the scan picked up a suspicious area just above the breastbone.  

At that point, mine and my husband’s world just evaporated; we sat holding our breath, feeling like we had just been hit by a truck.

From that moment, there were endless scans and tests to find out what had caused this potential cancer. Within a few weeks (which felt like a few months), I was diagnosed with a small HER2 positive lump in my left breast. This lump had been busy spreading to my bones.

This wasn’t what I’d planned

I was diagnosed with primary and secondary breast cancer in one fell swoop. I never had the chance to absorb having primary breast cancer, let alone secondary breast cancer. As the monopoly game goes, I felt I had been told to ‘go straight to jail and do not pass go’ in one consultation. 

I was very much aware of secondary cancer, signs, symptoms and areas where certain cancers tend to spread to because of my current role as a palliative care nurse. But, other than a consistent pain and fatigue (And what full-time working mother doesn’t feel fatigued?), I had no clue I was going to receive such a life changing and paralysing diagnosis - this wasn’t what I had planned.

There are people who can and do help

I was used to giving care and support to people who were facing uncertainties, worries and anxieties. I thought and believed I gave this support to the best of my ability, but I was suddenly on the other side of the fence and doubting myself.

How could anyone possibly give the support needed when facing what I was now facing without ever experiencing the hurt, anguish, fear, uncertainty first hand?

Happily, I can say to some extent I was wrong - there are people who can and do help. I have a fantastic secondary breast care nurse and team who are on the end of a phone and listen to and deal with my concerns, questions and tears. I have a great team in the chemotherapy clinic and have complete trust and faith in the expertise of my oncologist. 

Unfortunately, COVID-19 has played a major role in challenging and changing the kind of support available.

My husband always came to my cancer treatments and my consultations with my oncologist. He’s like my buffer and takes in information that I sometimes don’t. Since the pandemic began, I have my treatments on my own and my oncology consultations are via telephone. He has expressed that he feels ‘left out’ and not ‘as connected’ with what’s going on. And, at times I find it a challenge and a strain being the sole communicator, having to feed the information back.

But hopefully this will soon change with face-to-face meetings of my secondary breast cancer support group and the distraction of going out and seeing my friends.

I don’t take life for granted

I don’t ever think anyone can understand the physical and emotional pain and the inner strength that you must find within yourself to ‘carry on’ until you’ve faced such life-changing circumstances.

I used to think people who don’t have to face daily challenges of secondary breast cancer were ‘lucky’, and on bad days I still do. But I also accept I am on a different path to other people.

I think and believe I am walking this path with my eyes open wider, seeing and feeling so much more around me than those people who take life for granted. Consequently, I am more grateful for what I have and what I can do, rather than taking life, things and people for granted.

Maybe if I was still working as a palliative care specialist nurse I would be better in my role because of my experience; I could give more empathy and understanding to patients.

I think I also deal with things differently because of my health background and being in the know but, sadly, this also works as a negative for me. I now find it far too difficult and painful to continue in my role as a nurse. Life is now about my husband and my children and trying to make memories and moments.

 

We are sharing the voices of women with secondary breast cancer as part of our Unsurvivors campaign, which highlights that 11,500 people still die from breast cancer every year in the UK. We’re demanding urgent change so that everyone with secondary breast cancer can live well for as long as possible. Until we're seen. Until we're heard.

If you have any questions or concerns about secondary breast cancer, you can call our Helpline on 0808 800 6000.

 

To find out more about the signs and symptoms of secondary breast cancer, visit our information pages.

Secondary breast cancer

 

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