The cancer backlog is here and it's killing us. When Covid hit, people living with secondary cancer were downgraded and the pandemic took priority. As a result of our treatment being paused, people died and they continue to die.
But the truth is, we’ve been being downgraded from the moment our cancer became secondary since long before Covid but the lack of urgency in which we’re currently being treated with is horrifying! I LOVE our NHS. I walk through the hospital to my appointments now and I just feel the urge to HUG some of the staff as they walk by. How can they possibly keep up with this?
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The hundreds of thousands of people living with cancer who delayed going to their GP during lockdown are now being diagnosed on a scale that is unmanageable and for someone living with incurable breast cancer, I’m terrified of what that might mean for me and my family if my next scan isn’t okay.
Last September, I went along with a group of incredible ladies to take part in a campaign for the charity: Make2ndsCount . (They’re one of the very few charities who are funding medical research into secondary breast cancer - Praise be!) Out of 22 of us who took part, three of us have died. From living and breathing parents, daughters, friends and wives, to gone. More are currently seriously ill.
The tightrope that we live on is unbearable. We’ve been told we won’t grow old but we’re still not able to properly live because the system keeps putting us second best. The fear is crippling at times and when you pair that with not being able to get scans or results or plans or treatment or surgery, then it’s too much!
Vicki Keating took part in the campaign too and delays in her treatment have now resulted in over 30 tumours in her brain with more throughout her body. She has two young children and she lost her own dad to cancer earlier this year. It is nothing short of tragic.
As someone who has been told my breast cancer is incurable, I spend a lot of time within the cancer community, particularly on Instagram. We make friends with people there who, through the worst type of circumstances, are brought together; We feel the lows and we celebrate the highs for each other. We find joy and light and HOPE. We endure the darkness and desperation and fear. Sometimes it’s too much, sometimes we wade through pleading with ourselves to be okay…. and without ever even meeting, we forge incredibly beautiful friendships.
We’re all living for the positive news and for more options and for hope by the bucketload. But it’s so difficult to feel anything more than a statistic.
I spoke to a couple of my favourite Instagram wonder women who are currently in limbo waiting for a plan for their care after their secondary cancer showed progression.
Nicky Newman (@ nicknacklou ) is now into her 10th week since progression & still has no solid plan for treatment. She told me that she is struggling mentally with the lack of urgency and support to get what she needs:
“This is the first time in 4 years of living with cancer that I don’t have a plan, I don’t know what will happen to me, my life is literally being decided on by several different people and I feel very out of control.”
She said that even her amazing team are frustrated with the lack of communication they’re receiving from other departments. Nicky hasn’t spoken to her oncologist for 10 weeks which is INSANE! And she believes not having a solid contact for so long is the reason miscommunications have occurred, ultimately leading to delays and incorrect biopsies being taken.
Is it any wonder cancer patients are seriously suffering with massive anxiety and mental health deterioration ON TOP of everything else that is happening to us? We shouldn’t have to fight for our care as well as for our lives.
I asked Nicky what she would like to see in place which would help make life any easier;
“A consistent point of contact. Urgency at the point of progressions. One to one meetings when concerns arise (requests for scans etc for new symptoms.) The flexibility to be able to use other trusts when needing urgent investigative tests.”
After asking the same question on Instagram, people replied in their masses telling me how delays and lack of urgency is affecting them.
Gem Duff wants more specialist nurses equipped and skilled to support secondary patients. (YES PLEASE!)
She says that we need to have up-to-date info/statistics on those living with cancer. “We should have standard timescales and pathways for scans and for results as it can be so hit and miss.
Essentially, we just need someone to give a s*** and recognise that we are living for longer and our quality-of-life matters, which includes feeling like we matter and that we’re not being written off at diagnosis.”
I added some Q&A’s to my stories over on Instagram last week and while the findings were completely expected, the scale of it is nothing short of devastating. Message after message painted a picture of people who are not coping with their diagnosis and while so a lot of us do receive really good care, there is a large portion of cancer patients who are being neglected.
It can’t go on.
We want to see more designated secondary nurses and support.
Massively reduced waiting times for scans, results and plans - and PLEASE give people their results over the phone rather than booking them in for an appointment to discuss. That wait is agony and most people I speak to would 100% prefer to hear it over the phone.
More funding into research and treatments of secondaries
We’d like to see some of the terminology used by some staff updated and with compassion.
We need to have tailored care and conversations instead of feeling like a tick box.
Gem and Nicky are only a couple of people I’ve spoken to; I tried and tried to find statistics of people living with stage IV cancer in the UK and I could not find a thing. I won’t lie, this blew my mind and broke my heart - it’s kind of just confirmation that we’re treated second best.
But here’s where we have to initiate change. Right now it feels that there is little to no chance of this government helping and so that means we must fight on! It shouldn’t feel so unrealistic to ask for simple things; A scan (to include head) when we feel something is wrong, or at least 3 monthly scans. Care with the same consultant so that a patient/doctor connection exists. It’s very hard to feel like someone is fighting your corner if you never get to see the same person.
I think it’s important to also highlight to oncology staff that there can be simple changes made; the terminology which is used at times is far from okay. On the day of my diagnosis, I was asked if I wanted help writing my will!!! When I challenged other decisions made on my behalf and told them I just needed hope, they told me they had to manage my expectations. Can you imagine the power those words have over someone who is terrified and vulnerable, someone who has a three year old light of her life at home?
We’re not only fighting for our own lives, or our own experiences, we’re fighting for our kids and our parents, partners and friends and for their future too. I remember leaving the room on the day of my second diagnosis and feeling like I didn’t have single ounce of hope in the world and no-one was willing to give me any. I truly feel like I have PTSD from that initial appointment.
To be torn down at the first hurdle is not something I would wish on anyone. Our mental health is BEGGING for quicker results, more personalised care, dedicated secondary care. It shouldn’t be this hard on top of everything else.
How do we do it?
I don’t know yet but can we work on it together please? First off though, scrap medical tuition fees. What the hell? We’re crying out for Doctors yet the fees they’re charged are INSANE! How many doctors could we have if it didn’t cost the earth to become one?
Let’s rally for the secondary generation who want to LIVE!!
Demand scans have a one week turnaround, tops.
Have our concerns taken seriously rather than sometimes having us feel like irrational maniacs. (Sometimes we are irrational maniacs to be fair) but it’s SO HARD! This shouldn’t feel so unrealistic in one of the wealthiest countries on the planet.
Finally, pretty please can some there be more empathy and kindness throughout the process - yes people have been doing this job for a long time and they’re used to it, but we’re not. We’re dealing with a fear we would not wish upon anyone. Thank youuu.
I’m speaking at an NHS conference for oncology staff next month (poopin ma pants) but I’ll be flying the flag for secondaries and hopefully highlighting what might not already be obvious to some.
If there’s anything particular you’d like discussing, get in touch! (find me on Instagram here )
In the words of the late, great Nelson Mandela:
“It always seems impossible until it is done”
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