Monica retweeted
I can’t read the full article as it’s behind a paywall, but I knew the beautiful Fionnuala through our local support group for women living with metastatic breast cancer.
@NICEComms refusal to fund #Enhertu for women with HER2-low metastatic breast cancer has been devastating.
Fionnuala is heartbreakingly one of the women who needed this life extending treatment and has now died before her time.
When Enhertu first came out, my oncologist told me it would be my next line of treatment. We were so excited about this “wonder drug”.
Then NICE decided it wasn’t “cost-effective”.
In 2022, NICE changed its severity modifier, effectively downgrading metastatic breast cancer despite it being incurable, with median survival of just 3–5 years from diagnosis. In doing so they removed funding towards it.
Yet MBC is the leading cause of death in women under 60.
NICE has since received additional Government funding. Yet we are still being told they are negotiating with manufacturers over price.
How many more years of negotiations?
While NICE “talks” women are dying.
Scotland has approved Enhertu and so many countries around the world are moving forward. Yet women in England, Wales and Northern Ireland are being left behind.
Fionnuala deserved more time.
So do thousands of women living with metastatic breast cancer.
How many more women have to die before NICE decides our lives are worth the cost? @YvetteCooperMP @andyburnham #Stage4NeedsMore #BreastCancer
My wife died at 32, denied a cancer drug given across Europe thetimes.com/uk/healthcare/a…
Monica retweeted
For Westminster, delay means another parliamentary session. For a dying person, it is often all the time they have left.
MPs must finish what they started, and back choice on the 11 September.
Monica retweeted
It’s your monthly reminder to #FeeItOnTheFirst (•)(•)
#BreastCancer #KnowYourNormal #CheckYourBoobs #CheckYourPecs @Make2ndsCount
Monica retweeted
I was Charlotte.
I was born in Brighton on 18 February 1997.
I loved handbags and fashion. I was looking forward to having a career. I was looking forward to getting married and having children. I was looking forward to growing old and enjoying a long and happy retirement.
But none of that ever happened.
That's why I write about myself in the past.
I left this Earth in 2016, when I was just 19
My mother is now raising awareness of brain tumours
Every day, she shares my journey and tells my story, so that people can understand what this cruel disease can do.
She also set up a charity in my name, helping to fund vital brain tumour research.
I wasn't a celebrity.
I was simply Charlotte.
A daughter, sister, granddaughter, niece and a friend.
A young woman who had hopes, dreams and a future that should have been mine.
Please RT & help my mother & brother keep my story alive.
charlottesbag.org/
If you would like to support a small, self-funding charity where 100% of your donation goes directly to brain tumour research, please consider popping a pound into Charlotte's Bag.
Monica retweeted
Charlotte's Brain tumour journey
Diagnosis to death: 951 days
Age 1918.2.97 - 24.2.16
19 August 2013
Having had her diagnosis of Anaplastic astrocytoma Grade 3 on 16th August 2013 this was the first of many appointments that followed.
We arrived at The Marsden for our 1.00 pm appointment.
I knew nothing about chemotherapy or radiotherapy, but I had a feeling we were going to learn about them very quickly.
I will always remember the ward we were standing in. It was quiet and almost empty. Over the next two and a half years, I would walk past this room time and time again. I had no idea then how familiar it would become.
Our consultant came in and stood beside one of the beds, with a clinical nurse nearby. I remember his body language clearly, one hand resting on his chin, his other arm folded across his chest.
I asked about radiotherapy.
He told us there definitely wouldn't be any. The area involved the brain and spine was too extensive, so the only option would be chemotherapy.
We would start with the standard chemotherapy regime. I would later learn that, in order to be offered some of the newer treatments, the tumour generally had to show progression first.
We went through to the day-care ward, where Charlotte had a cannula fitted. It was the first of many that would follow.
Our consultant decided to start her on PCV chemotherapy Procarbazine, Lomustine and Vincristine. Each cycle would last six weeks. The Vincristine would be administered through the cannula, while the other drugs were taken in tablet form.
We left The Marsden carrying an enormous amount of medication, a folder full of telephone numbers, endless instructions about storing the chemotherapy and a medical glossary explaining all the cancer terminology we were suddenly expected to understand.
There were also strict instructions about handling the chemotherapy and disposing of the medication boxes and other materials safely.
It felt overwhelming.
Our world was now to be governed by cancer.
That evening, when we arrived home, there was a letter from The Marsden confirming Charlotte's diagnosis.
It also said that the prognosis was poor.
We had only known for a few days that Charlotte had a brain tumour. Now we were being told that the outlook was poor.
I don't think any of us could truly comprehend what those words meant.
We were sixteen-year-old Charlotte's family.
We were supposed to be worrying about school, exam results, friends and her future.
Instead, our lives were already being measured in chemotherapy cycles, hospital appointments, medication and prognosis.
And this was only the beginning.
Please RT with thanks
charlottesbag.org/donate/
Monica retweeted
From Miles:
Having spent 82 hours this month walking, 'tired' might be slightly underselling it. Our walk from Eastbourne and back was 220 miles in total.
We somehow managed to add another 20 miles on top of the planned 200 getting to and from the Downs and our accommodation, taking us well over 400,000 steps and more than 8000 metres of ascent and 8000 metres of descent.
It was a really tough challenge, and it was mentally demanding. Knowing that every evening we had to get up and do another day of around 18 miles in the heat was not always an easy thought.
Whenever things got really tough, we reminded ourselves that we had chosen to do this walk. Charlotte didn't get a choice when she was diagnosed with cancer. That thought helped put our blisters, sore knees, and aching feet into perspective. As did Charlotte's strength and stoicism in facing the gravest of diagnoses.
I want to say a huge personal and heartfelt thank you to everyone who has supported us. Your kind words have meant so much they genuinely gave us encouragement and strength when we needed it. Thank you to all who have donated and shared. We are incredibly grateful for your generosity and kindness. Your donations to the charity we founded in Charlotte's name will make a real difference.
£4,417 raised so far!
Every single penny will go directly to Charlotte's Lab to support vital brain tumour research.
All the costs associated with our 200 mile challenge including accommodation, meals and everything else along the way has been personally funded by us. This means 100% of your donations can go towards the research that matters so much to us.
There's still time to donate if you would like to support Charlotte's legacy and help us raise awareness of brain tumours.
Please RT with thanks.
gofundme.com/f/every-mile-fo…
charlottesbag.org/donate/
Monica retweeted
A passionate, heartfelt plea from the incredible Archie Goodburn.
Why are cancer patients having to constantly beg for access to life extending treatments, clinical trials and the best possible care? And why are young people with rare cancers still facing so many barriers to the research and treatment options they desperately need?
No one should should have to spend their time fighting the system instead of fighting their cancer.
Please watch and listen to Archie, his voice deserves to be heard.
@andyburnham @YvetteCooperMP @NICEComms @NHSEngland @BBCBreakfast
#Cancer
'Give us a chance to fight for our lives'
Commonwealth Games swimmer Archie Goodburn, who was diagnosed with brain cancer when he was 22, made an emotional appeal on #BBCBreakfast for more funding despite the passing of the Rare Cancers Bill aimed at improving research and trials
bbc.co.uk/sport/articles/cx2…
Monica retweeted
Calling for Urgent NHS Access to Enhertu for Patients With Metastatic Breast Cancer - Sophie Blake (@sophieRblake)
oncodaily.com/voices/sophie-…
Monica retweeted
Our open letter to the new health secretary @YvetteCooperMP of which I’m proud to be one of the signatories.
Enhertu will likely be one of my next lines of treatment. When you’re living with metastatic breast cancer, you don’t get endless options. Every treatment matters. Every extra month matters.
We’ve already lost far too many incredible women who may have had more precious time with the people they loved if this treatment had been available.
I want more time with my daughter 💗
Please, @YvetteCooperMP do the right thing. And @andyburnham please help bring an end to this cruel postcode lottery.
Please read the letter and add your name to the petition to support making Enhertu available on the NHS. Thank you 🫶🏼
#EnhertuNow #MetastaticBreastCancer
breastcancernow.org/get-invo…
Monica retweeted
No one looking at this photo would know what so many of these women are carrying behind the scenes.
We don’t look like the stereotypical image people often have of someone living with stage 4 cancer, which that can be so misleading.
Nearly all of these women are living with stage 4 breast cancer or have had a primary breast cancer diagnosis. We are mums, daughters, sisters and friends. We campaign, we make memories and we want to keep living.
We’re in the worst club that no one ever wants to join, but through the hardest times we’ve found support, solidarity and love.
But behind these smiles are the very real fears of living with cancer and the uncertainty and of what the future holds.
And for those of us living with HER2 low metastatic breast cancer, being denied access to the life extending treatment #Enhertu makes that reality even more cruel.
Yesterday we stood together with @BreastCancerNow and @METUPUKorg to demand change from @NICEComms @DaiichiSankyoUK @ASTRAZENECAUK and @NHSEngland
We don’t want to spend our precious time campaigning for access to treatments, we want to spend it living.
Please support us by signing and sharing the petition for #EnhertuNow 💗 @andyburnham @YvetteCooperMP
action.breastcancernow.org/s…
Monica retweeted
People like my courageous friend Elise shouldn’t have to spend their remaining time fearing a painful, cruel and prolonged death. Terminally ill adults deserve the comfort of knowing they will have dignity, autonomy and choice at the end of life
Monica retweeted
#BookReview - The Last Marriage of Dot Brightmore by Laura Pearson
A gorgeous, poignant read about second chances, in which the gentle joys of life are reinforced. Simply superb!
@LauraPAuthor
@BoldwoodBooks
#TheLastMarriageOfDotBrightmore
More here: shortbookandscribes.uk/revie…
Monica retweeted
Tomorrow, Parliament will hold a general debate on secondary breast cancer.
Unfortunately I won’t be able to attend due to current side effects from my treatment, but I’ll be watching and supporting from home.
This isn’t a vote on a new law, but it is a chance for MPs to speak up for the 61,000 people living with incurable secondary breast cancer in the UK and press the Government on the issues we face.
Secondary/Metastatic breast cancer kills around 11,500 women every year in the UK, that’s 31 women every day.
It remains the biggest cancer killer of women under 50 and one of the biggest killers of women under 60.
We need to be counted.
We need to be heard. We need timely access to the treatments that could give us more time and a better quality of life, including drugs such as Enhertu.
Please watch and share #Enhertu #EnhertuNow #MetastaticBreastCancer @jamesmurray_ldn @BreastCancerNow @METUPUKorg @Make2ndsCount
WAITING
1,000 women. 2 years of waiting. Too many lives lost.
We are the Brighton & Hove Secondary Sisters
Many of us living with HER2-low secondary breast cancer are being denied access to Enhertu, a treatment that could give us more time, more life.
We've already lost too many friends and fellow campaigners while waiting for this decision.
April 2026 update: @nicecomms has now increased the funding threshold.
The money is there.
So now the responsibility sits with @DaiichiSankyoUK and @AstraZeneca
Please re submit the deal to NICE immediately.
Every delay means more lives cut short.
This postcode lottery is costing time that we simply do not have
Please share this video and tag the drug companies and contact your MP.
Monica retweeted
Replying to @christianorguk @LoisMcLatch
Monica retweeted
.@TonyMarra_1 has been campaigning for compassion, dignity and choice for terminally ill, mentally competent adults at the end of life. His sister and my friend Paola Marra, who had stage 4 bowel cancer, was forced to travel to Dignitas to die alone because of our cruel and outdated laws. No terminally ill person should have to leave their home, family and country for the choice of a peaceful death. It is inhumane that dying adults still do not have this choice.
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Monica retweeted
Heartbreaking for many, please sign #Enhertu
Nearly 43,000 signatures for our #Enhertu petition! Please keep sharing and please sign if you haven’t already. Thank you!
action.breastcancernow.org/s…
@jamesmurray_ldn @BreastCancerNow @METUPUKorg @Make2ndsCount #MoreTimeToLive
Monica retweeted
Jenny wants choice.
She has terminal cancer that has spread to her bones. She knows what pain could lie ahead.
The assisted dying bill gives dying people hope.
Hope that they won’t have to suffer. Hope that they can say goodbye to their loved ones on their own terms.
MPs must bring this bill back.
Monica retweeted
Exactly what she said ⬇️ This is a beyond ludicrous situation. To have the drug to give someone more time & to flat out refuse to give it 🤬
Please sign and share the #Enhertu petition, and help give those of us living with Stage 4 metastatic breast cancer more time to live. Thank you!
action.breastcancernow.org/s…
Monica retweeted
Please @wesstreeting help get #Enhertu approved.
Women in England, Wales and NI are dying prematurely because they are denied this life extending drug
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