In August 2021 I was told, by an oncologist, that there really wasn’t much else they could do for my aggressive Pituitary brain tumour.

That was the first we’d ever heard. The woman was flippant about it as we sat there aghast ‘well, you can’t keep having surgery’ she says. As if, I’d been the one begging for it the last four times.

‘So how long do I have?’ I ask.

‘It’s not really something anyone can ever say for sure’, she replies, ‘so you just need to think about how long it’s taken to grow to a rate that it takes over your quality of life before’.

Right, so about 18 months at a push then?

‘What about radiotherapy again?’ I asked

‘No, you had the maximum last time. It’ll make you blind (my tumour sits literally next to my optic chiasm). Before you go, could you have some bloods done, so we can check your prolactin’.

Wow! Either she’s having a worse day than I am now or she’s got a serious chip on her shoulder.

But, off we went with our tails between our legs and sat numb on the drive back home to Swindon.

We knew the fkr was aggressive (the tumour, not the oncologist), we knew they hadn’t yet managed to get it under control, but we always had hope. The surgeon’s and consultants had never said there was a limit to what they could do?

I told family, friends and started making sure all my stuff was in order. Will, LPA, bank accounts.

I felt sad, but in time I accepted that all it meant was my time on earth would come to an end before the ‘average life expectancy’.

I’d had a good life since I met my partner and started my own business. I had a daughter who I obviously love dearly, and who was settling admirably into adult life.

I’d built a fantastic business that gave me an enormous purpose and so, it certainly wasn’t all bad.

But I didn’t want to see HER again! That’s for sure.

I sent an email to my Endocrinologist asking not to see that particular oncologist again. I accept bad news has to be delivered, but I didn’t feel her delivery worked for me. This is a hidden wonderful thing with the NHS, you can choose your point of contact. My endocrinologist acknowledged my request with kindness and understanding.

The endocrinology team at Bristol kept an eye on my bloods and MRI results and they often met with others (neurosurgeons and oncologists) to get input from them too.

Old tissue samples were sent around the world for testing. One even went to Sweden I believe, to see if I might benefit from some treatment that I forget the name of.

One treatment plan that was on the table was ‘radical surgery’, which would make me lose my sight in one eye. They’d also need to cut off one of my arteries, so I underwent a balloon occlusion test to see if my other three arteries would kick in if one was damaged. It did!

We got on with our lives and the only reminder (I’d learnt to live with and accept the chronic symptoms) that wasn’t right was when I went to Bristol for my monthly blood tests and regular MRIs, so they could keep a close eye on things.

We even decided to move house. We sold our three properties and upped sticks to a lovely three bed detached in a much quieter area than we’d been living in before.

February 13th, 2024

February 13th, 2024 was our moving day. It was wonderful. Everything went really smoothly.

Once the delivery chaps had left we were able to find our feet a little.

The previous owners had kindly left keys a plenty and also some post had been delivered that day for me. Well done, Royal Mail!

I knew straight away who it was from though. A distinctive feel to the brown envelope with a window that shows the tea stained coloured paper. It was from the Bristol Royal Infirmary.

Here we go, I thought.

Extract from the letter: ‘POST CLINIC RESULTS. Ms Gladwyn’s latest MRI has shown an increase in the soft tissue pituitary mass and so I am expected to see an increase in her blood prolactin levels.’

I think I had to wait a few weeks for the appointment to come around, which was hell as you imagine all sorts of things, right? I’d been bobbing along quite nicely. In fact, it’s easy to forget I am ill as the symptoms have been with me for so long (fatigue, lack of stress control, etc) that I don’t know any different anymore.

I guess we’re going to prepare for surgery. I even bought some ERROR 404 eye patches!

14:30, 8th July 2024

My new oncologist – lovely Dr Tim Spencer – came onto the call and, well, long story short, they wanted to ask my opinion on trying chemotherapy, specifically Temozolomide?

The possible side effects were mentioned, along with the advice that while Temozolomide is a well-established treatment for brain tumours, it’s only now been established as a possible treatment for Pituitary brain tumours.

They were open and honest. They said it may not make any difference whatsoever to my tumour, but that they’d monitor me with monthly bloods. My tumour breaks all white paper guidelines because it’s a little ****.

‘Oh go on then, why not’. If anything, it’ll be useful for future research, right?

Extract from clinical letter: ‘Today we discussed the role of Temozolomide. I explained that Temozolomide is a well-established treatment for aggressive brain tumours, but is also now established as a treatment option for pituitary adenomas. It tends to offer a good chance of tumour control with the potential of shrinking the tumour as a best case scenario. We know that functioning tumours such as prolactinomas tend to respond better than nonfunctioning pituitary tumours.’

21st October 2024

I managed the chemo for six months. It was gruelling. By my prolactin levels were dropping, an MRI scan in October 2024 showed a reduction in the size of the tumour. The sickness, constipation, migraines and having to be in bed virtually all day, every day, was surely worth it?

Extract from clinical letter: ‘I spoke to Catherine Gladwyn over video again today. I was pleased to inform her that the MRI performed earlier this month has shown a reduction in size of the tumour which is in keeping with a response to temozolomide. Her prolactin levels have fallen overall since she started treatment.’

20th January 2024

We had another call with the Oncologist in January, just before I was due to start my seventh round.

They suggested it was time to stop the chemo.I didn’t take it well initially, I couldn’t understand why?

They explained, that it was no longer making a massive impact on the tumour, like it did at the start of the chemo treatment. And, I had to admit defeat because my quality of life was really quite bad.

I could work maybe 2 hours a week, for 2 weeks a month.

The chemo has changed me enormously. It’s given me a higher level of fatigue and I don’t get out of bed much before 10 most days, then back in it about 8pm. I also now get regular migraines – possibly coincidence – but they weren’t something I ever had pre-chemo.

But listen to this… something weird happened.

September 2025

In September 2025 the Multi-Disciplinary team met (they do every month – it’s a meeting between all sectors who manage my care – endocrinologists, neurosurgeon, oncologist. I like to imagine they just meet every month to talk about me, but apparently there are other patients in their care – rude!). Anyway, they reviewed my most recent MRI scan, from June 2025 – six months after stopping the chemo, and it showed a reduction in the tumour again. A REDUCTION!

Extract from clinical letter: ‘Since stopping Temozolomide earlier this year, she has had an MRI scan on 07/06/2025. This was reviewed at the Pituitary MDT: There is no increase in the right cavernous sinus tumour compared to January 2025 and there is less tumour seen in comparison to previous scans in 2024. The opinion from MDT was to consider re-irradiation and otherwise ongoing monitoring.’

It was now 3.2mm away from my optic chiasm, giving them a – wait for it – 0.2mm clearance.

This meant, radiotherapy was back on the cards!

It’s been ten years since I last had radiotherapy and it gave me 5 years respite. I’ve been told it won’t be as effective this time, but if it gives me even a little more respite, then that’s great, right? I have longer on earth to, well, uh, sleep I guess.

8th October 2025

So, on 8th October 2025 I went to the BRI (Bristol’s brilliant Royal Infirmary) and had a mask made ready to start gamma knife radiotherapy on 10th November.

We will need to travel to Bristol every day for 30 days. I’ve estimated that each trip, including the treatment, and any understandable delays, will mean 4-5 hours out of every day, so I’m paying for my partner to take the six weeks off work.

I’ve bought some noise reduction headphones because I am really quite sensitive to noise anyway, but when I am fatigued or stressed, I am worse. Which those of you who followed my last neurosurgery journey will recall doesn’t end well for people! #SqueekyShoedAssassin.

Oh and guess what? One of the side effects of the radiotherapy is fatigue! Fkrs could’ve thought of something new, couldn’t they. I’m so over the fatigue.

10th November 2025 to 19th December 2025

To be continued…