Welcome to Newsletter No. 13

Sorry it’s been so long!

We have been rather busy our end. Unfortunately, I (Alex) was diagnosed with grade two breast cancer on 1st May 2024. Fortunately, the tumour was found when it was very small. So small, in fact, that I could not feel it, nor, for that matter, did I have any other symptoms.

On the 9th April 2024, I was called for a routine mammogram. Less than a week later, I was called back, having received a letter that something unusual was found on the scan. I was promptly given a second mammogram, an ultrasound, and a biopsy was taken. The results revealed a 14mm carcinoma ER (oestrogen receptive) tumour.

I received a lumpectomy on the 14th of June. Fortunately, the biopsy taken from the lumpectomy showed no evidence of spread to the lymph nodes. A 13mm carcinoma was excised. On the 5th August I returned to the Royal Marsden, where Charlotte had received all of her radiotherapy. Miles went with me. I was told that I would need a course of five radiotherapy sessions. Exactly four months after the first mammogram took place, I was told that I must take medication for the next five years to lower my oestrogen levels; oestrogen stimulates some breast cancers to grow.

On the 28th August, I had my first radiotherapy session. Ironically, it was in the same machine that Charlotte was treated in. It was incredibly tough being back there. It reminded me of just how stoic and brave Charlotte was. She endured thirty-two days of radiotherapy treatment, compared to my five.

I was fortunate that my cancer was caught early. If you are called for a mammogram, then please go. These are provided free by the NHS from ages 50 – 71. You will be called every three years. I won’t be raising funds for this cancer as, fortunately, it is incredibly well funded. I will. however, raise awareness of the importance of attending mammogram appointments.

I have lost Charlotte to cancer but I still have Miles. I owe it to him to be here for as long as possible. I know both of my children would never have forgiven me for not attending the appointments, especially when they are free.

Latest news from Kings College, London:

The day after my lumpectomy Miles and I were on the 6.45am train to King’s College Hospital, London, to present at their 2024 Conference, Landmarks In Neurosurgery. It was an absolute honour to attend. We spoke about Glioblastoma and the impact it has on families. We were able to share Charlotte’s story to a wide number of student neurosurgeons and eminent professionals.

We recently gave the team at King’s College Hospital £45,000 to enable them to buy a piece of equipment. The piece of equipment, developed by Oxford Nanopore Technologies (ONT), is an instrument to rapidly sequence DNA. The instrument can determine the sequence of the DNA and the modified chemical groups attached to the DNA bases. Currently two separate machines are used to do this, the DNA sequencer and EPIC arrays to look at modified DNA bases, this data is used to classify tumours. With ONT, the team at Charlotte’s Lab have the chance to rapidly classify tumours, certainly within 24 hours and possibly within hours. The machine will also provide sequence data and depending on the quality of this data we may be able to use this as well. The ONT instrument therefore holds promise, in rapidly diagnosing a patient’s tumour and possibly improving surgical outcomes by reducing the risk of irreversible brain damage. Though it is still at a very early stage, the first datasets being generated are looking promising.

Fundraising: We’ve done it!

We have so far raised just north of £300,000.00, since our launch in September 2016. Thank you so much to all who donate and spread Charlotte’s message. We have had many people raising funds this year which is so incredibly appreciated, especially when considering the current financial climate.

This year’s Team Charlotte challenge saw us walk from Lions Ward, Kings College Hospital, London, to Hove in 24 hours. We started at Lions Ward as this is where Charlotte had her spinal biopsy on the 8th of August 2013. There, we were joined by members of the Charlotte’s Lab team. The challenge raised over £3500. Again, a huge thank you to all who donated and shared on social media.

Our upcoming events include Miles and I hoping to complete our first 10k running races in November. We will be competing in the Brighton 10K, one of the oldest races in the South East. Though I very much enjoy my running, I have never attempted anything that long! I will certainly be doing a lot of training beforehand. Hopefully the weather is kind to us! We will share details of how to donate on our social media channels nearer the time.

Appearances in media:

We have been very fortunate to have been interviewed by BBC SouthEast and Radio 5 Live. Miles and I were featured on Radio 5’s Drive Time segment, where there is an ongoing push to raise brain cancer awareness among the general public. We completed a lengthy interview which was transmitted all over the UK. It was a great success and we were able to discuss Charlotte and our experiences at length.

In print media, I have completed an interview with Prima Magazine, which should be out by the end of the year. Sorry for not being more precise in regard to a date – I have not yet been given one.

There will be more interviews to follow.

Twitter

Twitter is our preferred social media platform and, as such, is updated most frequently. Please see this link for the Charlotte’s BAG account: https://twitter.com/alexeades1

*****THE VERY BORING BIT…

Data Protection rules mean that we have to ask you to opt in to receiving this newsletter – so if you would like to continue receiving it by email, and haven’t already opted in, please can you send a quick email to info@charlottesbag.com saying ‘newsletter please’ in the subject matter and then we can add you to the new, General Data Protection Register-compliant list. (If you’ve already done it – thank you, and no need to do it again!)

With very best wishes and all our thanks
Alex, Miles

The Charlotte’s BAG team

www.charlottesbag.com
www.youtube.com/charlotteeades

Brighton Argus Charity of the Year 2017
Alex Eades: ITV Lorraine Inspirational Woman of the Year 2017
Alex Eades: The Sun Fabulous Female 2018
Alex Eades: BBC Radio Surrey and Sussex Fundraiser of the Year 2018
Alex Eades: Brighton Power 100 (87th) 2018
Alex Eades: British Citizen Award July 2019
Nala (Charlotte’s cat) Outstanding Rescue Cat – Cats Protection August 2019
Alex Eades: Brighton Power 100 (45th) 2019
Alex Eades: Points of Light Award March 2020
Alex Eades: Coronation Champion April 2023

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