The initial elation of being clear of cancer has faded quickly.
Walberswick, Suffolk, England – bloggers own photo.
Alt Text: A photo of a small estuary on a cloudy day. There are coloured boats, boat machinery, cars, vans & dark-coloured, wooden boathouses in the background. Passengers are walking onto a wooden jetty, leaving a passenger ferry which has taken them from one side of the estuary to the other. In the foreground are long yellow & green grasses.
In the midst of all the confusion after the hysteroscopy as well as a sudden, unexpected & very upsetting family bereavement, I managed to escape to Suffolk with my husband for a long weekend. Dear friends of ours were hosting their Silver Wedding Anniversary party in a farmer’s field. It was a mini festival in the depths of Suffolk with tents, live music, a food van, a bar, a camping field & many dogs! At one point it absolutely bucketed it with torrential rain & we drove through sheet lightning to get there, but that’s part of the usual UK festival experience! We had a magical time.
To get to the festival, we had to cross a little stream with a tiny wooden bridge, lit up with fairy lights & pass a copse with tall trees. As we came off the bridge, there was a handwritten sign that said “Stay Away Fools.” This is a metaphor for my life right now!
After the biopsy result, my GP acted quickly to get me another referral to Gynaecology. I’m still in pain & having other horrible symptoms. All the hysteroscopy told me was that I don’t have cancer. That’s great. But something clearly isn’t right because I’m on buprenorphine pain patches which only partially lessen the pain.
I didn’t wait long for a hospital appointment because I was offered a cancellation date. This time around I saw a different Gynaecologist. He was in the same team of the surgeon who came to meet me pre-biopsy in the day surgery area. Unfortunately he had the same dismissive attitude as his team lead.
Medical misogyny is alive & well within this team. I’m absolutely furious about the way me, my GP & my Breast Cancer team (in the majority women) are being dismissed. And what was said to me in the consulting room isn’t something that I’m making up or exaggerating for ‘clicks’ because my husband came with me & witnessed it all.
The Gynaecologist was absolutely adamant that if I was using a certain type of cream (this detail I’d like to keep private) with a small element of estrogen in it, then I should have accepted a (mirena) coil. He went on & on about the importance of double checking with my Oncologist if I should be using this cream because I’m being treated for ER+ Breast Cancer. He said that the coil would have been less risky than this particular cream & that the decision to treat me with cream & not the coil was contradictory.
This is gaslighting. Of course it all played on my mind; that perhaps I had put myself at risk by opting for this particular cream. I explained several times how careful I had been in my research about potential harms about the cream & the careful discussion I’d had with my GP and the Breast Cancer team. My husband explained too to reinforce my message. However, this guy was of the same opinion of his lead surgeon that I should have accepted a coil to treat my Gynaecological problem.
I did eventually manage to get him off his high horse by asking about what other options were open to me. We talked through how an MRI might be useful, but how difficult that might be if it went on for more than 25 minutes (it’s very painful for me to lay on my back). I brought up the possibility of having a hysterectomy. Surprisingly, he didn’t dismiss this idea out of hand. In fact, he showed an interest in this. We talked over my lung issues & how the anaesthetist might not agree to perform surgery on me as this would be considered elective surgery (of course, medics always give me a general anaesthetic if they need to do emergency surgery). We talked over the time I could potentially spend recovering on the ward & then recovering at home.
The consultation was going better but he annoyed me once again by saying that he wasn’t convinced that a hysterectomy would take away the pain I’m in. He didn’t give me an explanation as to why this might be. If I get the painful bits removed, then why would I still be in pain?
Then he fobbed me off with a different cream to take for seven nights. He explained that this would cure a particular side effect. He ended by saying that he’d follow up sometime with a telephone review. And that was that.
I knew the cream would have absolutely no impact on the side effect. But I also knew that I had to use it because I recognise that at times, I have to ‘play the game’ of doing everything that the surgeon asks of me because it’s only when this list is exhausted, then I might get some serious treatment.
I contacted my GP & my Breast Cancer team seeking answers & reassurance. My GP, Breast Cancer nurse and Oncologist all agreed that the particular cream that the Gynaecologist was dead against, was safe for me to use, but the coil was not because of the difference in the ‘absorption rates.’ The Oncologist then wrote to my GP to confirm that this particular cream was safe & I’m going to forward the letter on to the Gynaecologist in the hope that it gets him off my case!
The Breast Cancer nurse reminded me that it was the Oncologist that was treating me for Breast Cancer, not the Gynaecologist, & to keep this at the forefront of all the discussions that I have with him. She’s absolutely right.
But of course, the Gynaecologist has put into my mind that by using this cream, I might be unwittingly causing my cancer to return & that I’ve made the wrong choice. That I’m now in danger & this is all of my own making.
I’m thinking very hard about whether I’ll continue with a cream that’s helping me with some of the awful, awful menopause side effects. I have in my head that my Gynaecologist might not agree to investigate my gynaecological issue further or do something about it if I continue with this cream.
At least I can have a bit of fun at the Gynaecologist’s expenses when I tell him that the seven-day course of treatment that he prescribed had no effect whatsoever!
“Stay Away Fools.” I have to deal with so many of them in my life. Sigh.
Peakhill Farm, Theberton, Leiston, Suffolk – bloggers own photo.
Alt Text: A small copse with tall trees at night. A lantern hangs from one of the trees, shedding some light on the these & the yellowing leaves with the grass & mud on the ground. Staked into the ground is a sign that says “Stay Away Fools” in pink capital letters. There is another sentence written in black pen underneath the slogan but this is unreadable.
This month’s blog focuses on my recent biopsy which is the most serious health condition I’ve faced since being NED – No Evidence of Disease – of cancer.
#TriggerWarning: this blog post describes medical procedures, including needles, that some might find upsetting.
Alt Text: A close-up image of a cannula stuck into the crease of an elbow with lots of medical tape to secure it & two plastic lines coming out of it.
July’s blog was all about discovering that the lining of my womb had thickened from an emergency ultrasound. I’d been sent for a scan because I’d been experiencing excruciating lower back & pelvic pain, & other distressing issues. This began happening a month after I started Tamoxifen in March 2026, & even though it’s a known an increase in womb lining can be a side effect of taking Tamoxifen, my medical team & I didn’t want to take any chances.
Because what if…?
My Hysteroscopy was scheduled for the last day in July & right before Ealing Blues Festival weekend which was a shame because I’d been looking forward to this festival. If you want to find out more about this procedure, then here’s a link to some information from the UK’s NHS – Hysteroscopy – NHS
Believe me, I’d much rather have been planning my Honeymoon & celebrating my husband’s birthday with friends than having this procedure, but I’ve learnt that you can’t take any chances with your health. I put a pause on everything, including work. I completed any short term contracts just in case, & then put my ‘Out Of Office’ on.
My Oncology team & one of the Breast Cancer nurses had arranged for me to see my Gynaecology team at Chelsea & Westminster Hospital. The GP also chased the appointment so I managed to get it within the two week ‘Cancer Pathway’ that the UK operates within. However, it wasn’t without stress because my head Oncologist thought the procedure to be unnecessary because she felt I was experiencing a normal reaction. Then she tried to put me back to the ‘Open Access’ booking – in short, this means that I contact the Breast Unit if I think anything’s wrong, rather than having fixed review appointments. To be honest, I was incensed by this. She’s my lead Oncologist & she hasn’t been in the last three reviews with me, despite my asking her to be at the March 2026 review, & she’s always, ALWAYS dismissing my other underlying health conditions which isn’t helpful to my ongoing treatment. I know she doesn’t treat that many patients, if any, with Spina Bifida, because she demonstrates some big knowledge gaps of this condition.
The Gynaecologist that I saw was lovely & completely accepted without further interrogation that I needed to have the procedure under a general anaesthetic due to my pain levels & highly sensitive nerves in my lower area. However, she did say that the usual treatment for thickening of the womb lining was to insert a coil. It was one of those rare occasions when I took my husband into the consultation – for fear of my pain as a woman being dismissed – & this was a really good move because he could explain what changes he was seeing in my pain levels. He could also back me up when we were explaining that under no circumstances should the coil be put back in. We explained that it was taken out during the lumpectomy as I’d be diagnosed with ER+ Breast Cancer.
This is a really interesting point. It came up at the consultation & again when one of the gynae consultants visited me just before the procedure. According to the gynaecologists that I spoke to, & despite my score being 8/8 Oestrogen & 8/8 Progestron, & me needing up to 10 years of treatment, they felt that the coil was safe for me. In fact, one of them went as far to claim that the dangers of the coil after Breast Cancer were often exaggerated by Oncologists who treat Breast Cancer. I was shocked that this was said to me. It was also clear that one of the gynaecologists (& yes, he was a man!) was very dismissive of me having the procedure – saying that he didn’t even expect to find any womb lining, not even anything remotely wrong, that I was unlikely to bleed (yeah, right) & went on to make several statements about Breast Cancer that were entirely wrong. In the end, I politely explained my diagnosis, the expected treatment path & that I was involved in Public Patient Involvement & Engagement at both Charing Cross & the Royal Marsden Hospitals. He responded by shutting up & making a hurried exit.
A reminder to him, & others, that I’m in a wheelchair because my legs don’t work, not my brain!
Being patronised before any kind of surgery or procedure is rude & uncalled for.
I was really perturbed by this coil solution, so my Breast Cancer nurse wrote to the Gynaecology team & the Oncology team discussed the dangers with the Gynaecology team, yet I still had to repeat that no coil was to be inserted when I entered day surgery, to the gynaecologist overseeing the procedure, the anaesthetist who came to see me before the procedure, the team who were taking me down to theatre (& still had the coil insertion on their notes) & once again when I shouted out “No coil I’m a Breast Cancer patient!” in the operating theatre before the sedation kicked in. To make it clear, the anaesthetist shouted the same after me. Result. No coil insertion!
In the UK, if you’re having any kind of surgery or procedure that involves general anaesthetic, you have to go for a pre-op assessment. I dread them. I fail the majority of the tests & even if the consultants say they’re confident in putting me ‘under’, the pre-op staff always make issues. This time I thought I was prepared though because my Lung Consultant at Brompton Hospital had sent me 2026’s Lung Function report, which I dutifully sent on to the Gynaecology team & pre-op assessment team.
Of course the pre-op team said they hadn’t received the report. It was just over a week before my procedure. I insisted that I send the Lung Function report again. It arrived in the middle of my consultation so the medic treating me read the report there & then. In fact, she said that even if it had been received beforehand, it wouldn’t have been read before my assessment. I despair, I really do.
Anyway at the pre-op I found out that I had been made an ‘inpatient’ & wasn’t allowed to go home the same day – probably due to the Lung Function report’s direction. I asked the medic doing the pre-op assessment to discuss it with the doctors to see if it could be overturned. She said that I shouldn’t worry, that she’d be back to me with an answer during the week. I emailed her the next day, explaining again why it was difficult for me to stay overnight in hospital – the access wasn’t like at home, I don’t have a PA with me who understands my care needs & that I lose my independence once I’m on the ward.
Did she respond by email or call me back? Of course she didn’t!
The day of the procedure came & my husband escorted me there. It was a later start, 12noon, so I was quite comfortable. There was confusion about whether I was coming home the same day, or the next day, with the day surgery staff so Stephane stayed in the hospital for a few hours, then he went home when a nurse told him it was an overnight stay. I discovered later that the confusion lay with the gynaecologist who said I could go home the same day & the anaesthetist who said “Absolutely not! It’s too dangerous! You have to stay the night with us” (verbatim from when she came to see me before the procedure).
I must say a little bit about the Day Surgery Unit at the hospital because it’s been newly created. It’s so fresh & clean. Each room has a toilet. Each room has lovely artwork & privacy film on the glass doors (which slide) of a flower design. But the best thing was the ceiling. When you looked up, it wasn’t fluorescent lighting, but lighting that copied daylight and some panels that had a film with a nature design. It felt so relaxing. I forgot to take a photo of it though. I mentioned how lovely the room was to the nurse & she said that patients ask all the time if it’s a private wing! Some real thought had gone into the design of the unit.
My visit from the anaesthetist was really quite interesting & useful in many ways. She was a senior. She knew her stuff. She didn’t want to give me a general anesthetic because of the Lung Function report. She explained that she’d rather give me the same sedation which I had for my cervical smear in January 2025 because it caused me no issues. My concern was that the biopsy was taking 15 or so minutes, so would that be enough to knock me out? She said that if I felt pain at any time during the procedure, then I needed to tell her. This panicked me because if I was going to feel pain, it would be excruciating for me. Feeling pain was not going to be entertained by me. But that was her decision. Even though I told her about not needing a ventilator after my lumpectomy, she said that I was older now & six years on, my lungs had got worse, so no chances were to be taken.
I respected her. But it also gave me the information for another decision that I might have to face in the future.
And also I needn’t have worried because as soon as the sedation kicked in for the procedure, I was completely out of it. As the anaesthetist said, it doesn’t take much!
I was last on the operating list – 3pm. I just chilled & read my book. However I had this nagging feeling that my veins were going to be an issue because I had to stop drinking water earlier on in the day. The anaesthetist read that I have Raynaud’s from the notes so we discussed a little bit about how we might get around this (e.g her using the thinnest needle).
And then it was time. I was wheeled a little way down the corridor by a porter that I’d met before & he was really joking around so that helped my mood. Then the doors opened to the operating theatre. The medics assembled were all celebrating an early finish to the day. Then I ruined it a bit. But as the anaesthetist told me to stop repeatedly apologising, I won’t say it was my fault.
To reassure me before she started to find a vein, she told me that another lady with Spina Bifida underwent the same procedure as me, earlier that day. That was helpful in so many ways, mostly to know that she’d also had some sedation like me.
There always seems like a cast of thousands when you get into the theatre but I’m always grateful to see everyone there.
Remember the PET Scan that I had at Charing Cross Hospital where my veins were non-existent? Well, it happened again.
To recap, medics can only inject into my left arm, or my right foot if they’re really stuck, because my left foot is affected by the Spina Bifida & some lymph nodes are missing in my right arm because of the Breast Cancer surgery.
The anaesthetist blew the first vein that she tried in the back of my hand. I felt really bad for her because it surprised her. Then she went searching & trying other places up & down my arm. I explained that there was quite a good vein in the top of my arm & that my right foot was a possibility. She was getting one assistant to squeeze my arm as tight as she could & the other assistant to stretch my skin out. Yes, it hurt! I began to panic because I had to get this procedure done & find out the results asap. My needle phobia started kicking in. The ultrasound machine was wheeled out to help find a vein (& this was how they found a vein when I had my PET scan). In desperation, I asked for gas which the anaesthetist agreed to. But the cylinders had been put away for the day so they had to get them out again (it was only a momentary wait). The mask was soon on & the sweet gas started to flow. They were still jabbing, squeezing & stretching my arm. I didn’t care. I went to sleep.
I woke up back in the Day Surgery Unit with a nurse asking me if I was staying the night. I said I’d been told to stay & that there was a bed for me on a ward. The nurse had to double-check. Then I needed the loo but of course, I was attached to a drip. Cue bedpan – which I had to shout for as I’m a lady of a certain age & I can’t hold on for a very long time! I can’t really use bedpans. I weed all over the bedclothes. So humiliating for me. The nurse was so kind about it & dutifully cleaned it all up. Then she got me something to eat – there were no sandwiches left so I had cheesy broccoli which might have been a risk under other circumstances, but it was really nice & I kept it down. After a while, I got taken to the Annie Zunz ward on the upper floor of the hospital with a little escort of porters & nurses. I was relieved to be in this ward because I know it. Everyone is always so kind – they have to be, it’s the Gynae ward!
They asked me if I’d eaten to which I replied yes so I got a cup of tea instead. Bliss. The Hospital Radio man appeared & asked if I’d like a song playing. In all my years in hospital, I’d never had a song played for me on hospital radio so I chose The Cure (I mean, who else was it going to be!) & their song “Why can’t I be you?” & the guy commended me on my choice.
I listened in to the station via my mobile phone & you could tell everyone was of a certain age on the ward as The Cranberries & Blondie got played! I got ridiculously over-emotional when I got my dedication & song played but that’s the sedation for you!
The drips were removed. Freedom! I managed to use the loo on my own. I managed to change into my pyjamas on my own. The staff were so willing to help but I said I’d be ok. I did hear mutterings of “the wheelchair” & “we didn’t know” when I arrived & during changeovers in staff, but I do like to surprise people & challenge their assumptions about what disabled people can & can’t do.
Yet the staff on Annie Zunz ward are kind to everyone. There was a lady with a learning disability next to me. Her mum was there helping too but the staff were so lovely with her. They helped her choose her favourite films on her ipad & were as gentle as they could be when the had to move her, or inject her, etc. That also made me quite emotional because I remember when my mum stayed in hospital with me & I never wanted her to go at night. The lady beside her was exactly the same when he mum finally left at 1am. We all need our mums when we’re vulnerable.
The next day I was allowed to go home after breakfast & a quick wash. The doctor didn’t have a need to see me; I just got handed a discharge letter which basically said the biopsy was clear & there wouldn’t be any follow-up treatment. The letter also had the ward number to call on it if I was experiencing heavy bleeding or other serious issues which I was appreciative of getting. I was elated! No cancer. I felt sure I was in trouble but it was the pesky Tamoxifen! I was in a lot of pain though & bleeding a lot. Of course, I wasn’t in any fit state to go to a festival with unhygienic toilets, what was I even thinking that I could still make the Blues festival on Sunday!
Stephane appeared & we left the ward. On the way out of the hospital, there were some jewellery stalls set up so I bought myself a little bracelet to cheer myself up. Then we went to Starbucks & I got some caramel waffles & a strawberry frappe. Lovely!
As soon as I got home, I fell asleep on the sofa & I remained there or in bed for the whole weekend. I worked one meeting on Monday & then I took the rest of the week off so I could recover from the pain & the bleeding.
But of course the original symptoms that I had before the biopsy remain, so on Thursday, my husband & I went back to the GP to see if there were any other options that we could explore. My GP is ace. She always listens. She’s very knowledgeable. She’s very reassuring.
The obvious option is to have a hysterectomy. Here’s some NHS information about this surgery – Hysterectomy – NHS
This is why what the anaesthetist said was important. I realised that I might not be able to have a general anaesthetic now because of my lungs, except if I need an emergency operation. Hysterectomies are mostly elective surgeries. Sedation won’t do – the surgery takes between one and three hours. The GP agreed with me but still said that she would refer me back to Gynaecology to explore with them. And my other options – to stop the Tamoxifen – but that’s highly dangerous because the cancer could reoccur so I won’t be doing that. To be on pain patches for up to the four remaining years of my treatment – that’s realistically the only option. To keep on these damn patches that wreck my head – I start feeling like I don’t want to do stuff, can’t make an effort or be motivated, it’s very disconcerting. The patches also make my fatigue & constipation worse. DAMN YOU!!!!!!!!
But hey, I’m still free of cancer, I’m alive, I’ve just got married & I’ve just started a new, wonderful, creative freelance contract which will keep me busy for the next few months!
Regular supporters of my blog will have noticed that July’s edition is a little late this month. I had to do a mini blog, which I’m calling a ‘blogette,’ because I’ve been rather busy!
Photo credit: Anjan Saha.
Alt Text: A black and white photo of a white-skinned man & woman (Stephane & I) sitting at a large, mahogany table in a Registry office. They’re both smiling & looking towards all their family & friends (not pictured in the photo). The woman is wearing a long, summer dress with embroidered flowers on it & a garland of dried flowers in her hair. The man is wearing a light-coloured linen suit & shirt. There is a small buttonhole of dried flowers on one of the suit’s lapels. They’re both wearing glasses. Behind them are vases of fresh cut flowers & a large mirror.
I’ll tell you the nice thing first – Stephane & I got married at Chelsea Old Town Hall, London (yep, move over Pierce Brosnan and Kim Cattrell – for context lots of celebs & actors etc get married here!) on Saturday 27th June 2026. It was a magical day filled with love, fun & laughter. After marrying in front of a small gathering of our family & closest friends, we travelled on to Maxilla Social Club, our local venue, for the Wedding Breakfast & then we had a big dance-off in the evening with more of our friends & colleagues, two excellent dj’s – Chris Tofu & Alan May – & my brother’s band ‘Evolution Of Fisherman’ played a legendary set.
Stephane is French so as french weddings last two days, we hosted a summer picnic on the next day, the Sunday, for more of our friends & it was the perfect way of relaxing after dancing the night away. I’m going to write a future blog dedicated to the wedding, but I want to let the beauty of it sink in first.
Now I’ve got to tell you something that isn’t so nice. It’s something that I raised in my last blog but it’s of a delicate nature. As I try to avoid speculating what it is, or what it isn’t, I won’t go into details now. But I’m waiting for a biopsy under general anaesthetic which should take place within the next two weeks. It’s something that was seen on an ultrasound & definitely needs further checking. I’ll have that biopsy done by ChelWest Hospital & any outcomes will be reported back to Oncology at Charing Cross Hospital. As always, all of my consultants spread across the hospitals have been liaising with one another, including my respiratory consultant at Royal Brompton Hospital, who has provided a recent Lung Function report to the anaesthetic department, & my wonderful GP who is absolutely ‘on it!’
I knew about the likelihood of needed a biopsy at the time of my wedding, but my GP rang me to urge me to put the biopsy out of my mind & focus on my wedding day. Which I did.
Then there’s another thing which isn’t so great. I’ve been getting really tired during the day with more headaches & a metallic taste in my mouth when I wake up. I asked for some further help from the Royal Brompton Hospital & the recent Lung Function tests revealed that I’m not releasing enough CO2 at night. In a few months’ time, I might have to go on a breathing machine (often prescribed for sleep apnoea) . That’s a whole other blog right there to describe this situation so I won’t go into details right now!
As always, my body isn’t quite the temple that it should be but nonetheless, onward.
Returning to my wedding, I wrote a piece about the family that we miss & how sometimes our imagination fills the spaces when we can’t quite express what we’re feeling. Largely it’s about my mum – her wedding anniversary (17th) is today & her birthday is on Sunday (19th) so its publication is timely. It’s not just about her though, it’s about both sets of my grandparents & my great aunts & uncles who provided the backdrop to the perfect childhood. Of course, there were tears when I read the piece, but I also repeated the piece in French, thanks to my niece Jeanne-Marie for helping me with the translation. Here we go:
“Sometimes you’re a shadow that passes across my face,
A light tap on my shoulder,
A tiny spot on the corner of my eye.
I blink. I don’t quite catch sight of you. But I feel you.
Sometimes you’re a white feather that lands gently at my feet when I step out onto the porch.
In recent years you’ve become a robin who comes to sit with me when I’m drinking tea in the garden.
I’m always so reassured by your presence.
But then you’ve never really left.
I see glimpses of you reflected in my dad, my sister, my brothers, my nieces, my nephew & baby Ralph.
The way the laughter dances in their eyes.
The things they say, how they walk.
Lately my mirror reflects back more of you than it does of me.
The tiny flecks of grey in my hair,
The liver spots on my hands.
I’ve got dozens of moles now, & endless freckles on my face.
I wonder what you’d make of me now.
I have so many, many things to tell you.
But I have this feeling that you already know about them,
Because you’re watching from another time and space.
One day, my daydreams will cease & I’ll join you in a place that time forgot.
I took part in a workshop with MacMillan Cancer earlier this week. It was all about how digital tools could help with the self-management of cancer. It got me thinking about human contact vs virtual contact.
Alt text: A black square with white text in capitals that says “You’re on mute.” Accompanying the phrase is a graphic of a microphone in white with a red line through it.
I got really annoyed this week when my face-to-face appointment in Oncology was changed to a telephone call by my Oncologist. It was changed at the very last minute & like most disabled people, I’d had to make arrangements in advance to get Personal Assistance support so I could attend.
The face-to-face was a 3-month review appointment to see how I was coping with the switch to Tamoxifen. I needed to report some issues back. One issue was sufficiently concerning enough for the GP to book an urgent pelvic ultrasound. She even took the trouble to arrange it on the evening before my face-to-face appointment.
I was in so much pain in my lower back, stomach & pelvis that I had to go to A & E on the last Bank Holiday weekend. One CT scan & 10 hours (yes, 10!) of waiting later, the scan was clear of anything untoward, including kidney or gall stones. I got discharged with advice to take an over the counter medicine to ease stomach cramps. But the pain is still here & it’s interfering with my daily tasks. It’s got to a point where it’s scaring me.
Some folks might say that I could have easily talked over the telephone with my Oncologist. However I want the Oncologist to see my face full of pain, to see how I’m not moving properly because my lower back hurts so much. I feel that’s the way to make the situation real to her. I need to talk with her about the complex underlying issues that could be causing the pain & how Tamoxifen might be attributing to it. I respect my Oncologist & she treats me well, but she tends to underplay the complexity of the situation with her phrase “well we treat many people with underlying health conditions” which can make me feel like she’s dismissing my concerns.
The other thing about the face-to-face appointment was that the team had timed it really carefully so as not to interfere with a very special event in my life that’s happening at the end of June (more about that in next month’s blog). Now that it’s been rescheduled to a telephone call, it’s just two days before the special event which was really bad timing in terms of getting last-minute tasks done & managing my emotions. The team knew about my special event. I even suggested organising the face-to-face appointment after the special event, but the team wanted to see me in person, in June.
I turned the situation around for myself. I got my face-to-face appointment reinstated & the telephone review cancelled. I rang the MacMillan Cancer Navigator line & I spoke with one of the nurses there who was very sympathetic to my situation. She listened carefully to the details of my recent trip to A & E. She made a note of the fact that the GP had ordered me an urgent pelvic ultrasound & had put me on buprenorphine patches to help control the pain (this is a very low dose & hopefully a temporary measure). To cut a long story short, the nurse connected me with the Oncology department & one of the staff there asked permission of my Oncologist to reinstate the face-to-face appointment.
As I mentioned in the introduction, I’d taken part in an online workshop organised by MacMillan Cancer about using digital tools in the self-management of cancer. It was really interesting. To a certain extent, I already use digital tools. I use the NHS app &other hospital apps like Imperial NHS’ ‘Patients Know Best’ etc, (except that the hospital apps don’t always ‘talk to’ the NHS app which isn’t helpful!) These apps are useful for managing appointments & ordering repeat prescriptions, etc.
I often use charity websites like Breast Cancer Now & its online forums to check the general symptoms of cancer & the side effects of medication. However, what I can never check is anything more complex than the basics. The information & the knowledge about other underlying health conditions & how they might affect cancer treatments just isn’t there. I’m concerned about typing a question into A.I. because I know that much of A.I. is written by white males. Therefore the data that it holds isn’t useful or relevant for someone with any kind of diversity, including disability.
Digital apps & websites are only useful if you can use them. In general, they aren’t designed with diversity in mind. The formats are inaccessible – where’s the scope for large text, audio files, Plain English, Easy Read, captions & BSL? Yet producing information in accessible formats is stated as a reasonable adjustment in the UK’s Equality Act. Accessible formats aren’t just a ‘nice to have.’
The lack of data beyond the more general aspects of cancer & the lack of attention to accessible formats all leads back to why disabled people are so underrepresented in cancer.
If a new app is created, I put forward to MacMillan Cancer that any app shouldn’t be launched until all the inclusive parts of the app are fully functioning. So many times the accessible features are an add-on later. The designers of the technology only respond reactively rather than being proactive about digital access & building in the access features from the beginning. It’s so frustrating.
We’ll see what the ultrasound & the face-to-face appointment brings. I’ll put a caveat here that I feel sure that my symptoms are nothing untoward, but because I live with a cancer diagnosis, every new symptom needs to be investigated.
I got the opportunity to volunteer once again at Breast Cancer Now’s ‘The Show 2026.’ It’s a fashion show like no other with all of the models either living with, or beyond, Breast Cancer.
Photo credit: Breast Cancer Now.
Alt Text: Four diverse people, wearing pink & white t-shirts with ‘Breast Cancer Now’ printed upon them, sit behind two tables joined together. The table is covered in a blue cloth & there are lists of names printed onto paper, & pens on the table. Behind them are grand oil paintings in gold frames, a mirror with a gilded frame, statues & a row of bench seating in dark wood. Everyone is smiling in the photo.
Breast Cancer Now’s ‘The Show’ is such a wonderful, hopeful, uplifting, life-affirming, beautiful event that I can’t resist coming back year to volunteer. Some of you might remember that I was a model in their 2023 show & it was the first time that they’d ever had a wheelchair user in it. I was so grateful for the opportunity – I’ve always wanted to be a model – & ever since taking part, I’ve ‘given back’ by volunteering on the show’s registration desk alongside my partner Stephane. We’ve also volunteered to work on the registration desk for their ‘Pink Ribbon Ball.’
There’s not many other roles that I can do as I don’t have enough strength to run around doing physical stuff, but after running many of my own events, & Stephane with his club promoting experience, we definitely know how to run a guest list! And the Breast Cancer Now staff look forward to seeing us every year, which is so lovely. We feel very loved by this charity.
So what’s the secret of running an efficient guest list? One – have plenty of people doing it (as you can see, we were a team of four plus three volunteers managing the queues & a Breast Cancer Now staff member there to greet any influencers or donors), backed up by people outside managing the queues. Two – make sure you have a pen to tick people off if you’re using paper sheets. Three – & this one I borrowed from Stephane – if you print out lots of guest lists stapled together, then you can open several sheets of paper at once on different letters of the alphabet, then you can find people much quicker. Four – call for people to come to your desk because many guests can’t see that there are several people taking names. Five – ask people to find themselves on the list if you have trouble hearing people say their names. And lastly – don’t panic, you’re in a team, working together.
The registration desk is always busy at ‘The Show.’ I love seeing all the guests come in – they’re so excited about seeing their family member or friend taking part. There’s also lots of lovely kids! The models from last year’s show are invited back to watch it, so it’s always good to reconnect with them. And the models from 2023 pop up from time to time across the years so it means after the event, we can have a really good catch-up! The team gets to work straight away, ticking off their names, as we know that they want to get in quickly to get a good seat. Guests usually arrive ‘en masse’ so the first 20 minutes we’re hectic. With around 10 minutes to go until the event starts, that’s when it gets much quieter.
At 3pm, some of the team went up to watch ‘The Show’ as they’d never seen it. Stephane and I waited behind to make sure that we helped any late-comers. We gave it 20 minutes to see if anyone else arrived & then we headed up to watch too. However, like last year, Stephane got word from the security that there were still people arriving, so he had to go downstairs a couple more times to check them in. Next year we’ve said that we’ll stay on the registration desk the whole time!
I also met with one of the designers, Deby from ‘We Are Curves.’ She had a very special outfit to give me which she made for me. It’s gorgeous!
Stephane & I also like meeting all of the volunteers. They’re always very friendly & welcoming. Many of them have had a cancer experience themselves & some were past Show models. We have a room to ourselves which is like ‘Mission Control.’ There’s branded t-shirts & little ‘bum’ bags for us to wear in case guests want to donate. The teas, coffees & water flow & there’s always plenty of chocolate & crisps to keep us all going. We all gather in this room before the event starts & it’s a nice way of settling into the day. There’s always someone to talk to. The photography & film crews use this room too so there’s lots of interesting camera equipment & laptops. It’s a hive of positive activity.
All the volunteers get a briefing about a couple of hours before ‘The Show’ starts. Then we do a ‘site visit’ which is essentially a ‘walk & talk’ through the venue. It was the first time that Mansion House had been used so it was great getting to know its layout. By 2pm we’re all in our various positions, poised for the doors opening to the public at 2.30pm.
‘The Show’ was amazing! I loved Mansion House lit up in pink, it looked beautiful. And it goes without saying that the models were on fire! They own that runway! The venue’s atmosphere was electric – everyone was clapping & dancing the whole way through. I love seeing & hearing the reaction of family & friends when the models come out. And there are always lots of tears because it is very, very emotional. I shed a tear or two, thinking about how much ‘The Show’ means to me, & thinking of Mary & Kam who were in 2023’s event with me, but now they’ve passed. I thought about my sister, my brother & Stephane in floods of tears at the evening show, watching me. And my friends who came to the afternoon’s show & how were blown away by it.
Part of ‘The Show’ is always dedicated to explaining what Breast Cancer patients face & how Breast Cancer Now is there to support people going through this devastating illness. Breast Cancer Now’s current strategy focuses on metastatic (or secondary) cancer; not only to support research to find a cure, but also to help people understand the signs of any spread. For clarity, metastatic cancer is when the cancer has spread to other parts of the body & / or organs. This is incurable. Breast Cancer can return in 25% of people who were originally diagnosed with Breast Cancer. Sometimes it can recur within 5 years, or 10 years, but also 20 or 30 years later (for example, I had ER positive breast cancer and this is the one most likely to reoccur decades on. Again, no one knows (yet!) why this happens).
But as quickly as ‘The Show’ started, it was time for presented Lisa Snowdon to bring the event to the room. But the energy in the room remained as the models were reunited with their friends and family. There were many selfie poses happening! I take the opportunity to catch up with old friends and colleagues – I always go straight to Rebekah Roy who is the stylist on ‘The Show.’ She’s such a star!
Photo credit: Suzanne Bull
Alt Text: A large event space which has stone white pillars & a gilded ceiling. There is a white catwalk, running through the middle of the hall. Each side of the runway are transparent, plastic chairs. There are several large tv screens that are showing information about ‘The Show.’ At the far end of the runway, there is a crowd of people, dressed in their best clothes, talking. This area is lit up in the branded pink to match the ‘step & repeat’ walls.
The last photo is of Stephane & I, taken at the afternoon tea party which happens after the first show (the models get to strut the runway once more in the evening). Thank you to Alainah & Anna at Breast Cancer Now for looking after us both! See you next year!
Photo credit: Suzanne Bull
Alt Text: a white-skinned man & woman in front of a wall that’s lit up in pink, white & purple. Text on the wall in pink says ‘The Show,’ Breast Cancer Now and Asda Tickled Pink. The carpet is pink with a pink, purple & white geometric design. Both people are wearing glasses & branded pink t-shirts which have a white square on the front of them. The text written in pink within the white square says ‘Breast Cancer Now.’ The woman is sitting in a manual wheelchair & the man is crouching beside her. The woman carries a taupe-coloured bag with a pink, leopard print strap draped across her front.
A change in cancer treatment during March brought some surprises, some of them welcome, but some of them not.
Alt text: A box containing a pre-filled syringe, two large plasters in their wrapping & a very small tube of cream lay on top of a brown, faux fur bedspread. There is a large, red cross drawn across the image.
Towards the end of March I had a review with the Oncology team at Charing Cross Hospital (West London, UK). I hadn’t seen the team for about 2.5 years so I was looking forward to catching up with my oncologist. I’d planned ahead, asking the Breast Cancer nurses if I could see my named consultant which was agreed. However, despite my best efforts, this didn’t happen, apart from a brief ‘hello!’ when she stuck her head around the door of the consulting room to ask her team member a question unrelated to my case.
My oncologist is great & I’m happy to be under her care, but I do wish I could speak with her directly. I did call ahead to request a consultation with her which I know was received by the Breast Cancer nurses & acted upon, but again, I saw one of her registrars.
I wanted to speak with my oncologist directly because she would benefit in her understanding of how the cancer treatment is affecting my disability. I think it’s important information for medics, researchers and disabled people with Spina Bifida to have to hand. They could use the information to provide kinder treatments, if appropriate. But my oncologist plays the side effects down (her favourite saying is “well we treat people with all sorts of underlying conditions.”) When I have told her what I’m grappling with, she panics & starts hyperventilating about how I can’t give up the drug (yeah, an oncologist who panics!) I don’t want to give up the drug, I just want some acknowledgement of how hard it is to experience these side effects & how it could be useful to report them somewhere official. Anyhow, it was nice to see her, briefly.
My review appointment was with one of her team (always lovely, kind people) & as always, a Breast Cancer nurse was present. This time Stephane (my partner) came into the consultation room too. It was so great having him there as he could validate that I was being truthful about the emotional and physical strain of the side effects.
At this review appointment I was expecting that my Zoladex injections would stop which the registrar confirmed. I’d come to the end of the course (5 years of being injected into the stomach every month is grim!) & because I reached the age of 55. (I didn’t know this but a friend of mine told me that at 55 years old, women stop receiving contraception). My GP hadn’t ordered me any more injections after March & I’d called the MacMillan Nurses Navigator line (a free service you can contact whilst you’re in treatment) before my review to find out if this treatment line was stopping & they confirmed it too). Then I asked about what side effects I might experience after stopping Zoladex. My Navigator nurse said none because there aren’t any side effects. My GP said that I shouldn’t have any side effects either. But I did have actual side effects from Zoladex when I was taking it. Each time I had the injection, I’d feel absolutely exhausted & experienced ‘meno-brain’ until the next day. The Navigator nurse didn’t know how to respond to the side effects that I was reporting in except to say that it was ‘unusual.’ And that proves my point about my Spina Bifida body having different reactions to treatments than other non disabled patients. Surely that’s to be noted?
Happily, the registrar present at my review confirmed that the injections would stop. I asked her about side effects after stopping. She & the Breast Cancer nurse looked very confused & said that there wouldn’t be any. I detailed my side effects whilst on the treatment to them both. All they could say was that it was ‘unusual’ (that word again!) & that these effects would stop altogether because I wouldn’t be on the drug going forwards.
I’m writing this blog at the time when I should have been receiving my monthly injection. I honestly can’t tell if my body is craving the injection or not. I think it’s too early to tell. But I do feel hungry all the time…
Then to my surprise, the registrar said that she’d been reviewing my bone density scans & seen how very thin my bones had become & how bad the Oesteoporosis was in my lower spine. As a result, a decision had been made in the MDT (Multi Disciplinary Team) that it was the right time to swap me from Letrozole to Tamoxifen. I was surprised, but at the same time, I know the cancer treatment & recovery paths aren’t linear. I did panic a little but the registrar listened carefully to the side effects that I’d been experiencing on Letrozole – bad nausea & vomiting, headaches, hot flashes & flushes, dry eyes, brain fog, chronic fatigue, anxiety, horribly painful joint & muscle pain – well the list goes on. Stephane validated that it was just as bad as I was saying & how upset he’d become seeing me trying to cope & missing out on aspects of my social life because I was so tired. The registrar & the Breast Cancer nurse expressed sympathy & how sorry they were that the treatment was so very tough. I appreciated their kindness in the moment, it was comforting to me.
I expressed my fears about switching to Tamoxifen. I’d taken it in 2020, during the 4 months between diagnosis to surgery. In that time I’d experienced crushing bone pain in my sternum, collar bone & ribs, my hair started to fall out & my short term memory was obliterated. More frightful than that, another lump grew next to the lump that I already had in my breast! Was it going to even work as successfully as Letrozole?
I was expecting to swap to Tamoxifen in March 2028 & be on it for the two remaining years of my treatment. I was concerned that swapping earlier might leave me vulnerable to a recurrence. The registrar gave me a lot of reassurance that it was the right time to stop because of my thinning bones, that I was post-menopausal now so it was the right time to swap. She also reminded me that Tamoxifen was an aromatase inhibitor drug too, so I was kind of swapping ‘like-for-like.’ The Breast Cancer nurse nodded away in the corner. I pressed my point again but the medics pushed back, saying it really was the right time to stop. I asked if I could delay taking Tamoxifen for 3 months because I wanted to look good for a special event that I’m attending in June (imaging myself looking really ugly with bad skin, hair & nails whilst everyone else was the picture of health on the special day. The register said firmly that there was a month’s supply of the drug at the hospital pharmacy for me & that she wanted me to stop taking Letrozole that very night. That was me told!
There was a brief discussion about me taking Alendronic Acid once again to protect my bones. I explained that I wasn’t keen on doing that because I caught Mastoiditis (an infection in the bone behind the ear, a rare side effect of these bone infusions) on the last Zometa infusion (you have this through a drip, it’s the liquid form of Alendronic Acid). I reiterated that in general I have bad problems with my teeth & jaw. Even as I’m writing this, I’m experiencing terrible pain from a new bridge that’s been put in to replace a lower tooth. It’s toothache, but I actually haven’t got a tooth there! The dentist x-rays didn’t show anything untoward, no infection, nothing! My jaw is killing me, especially in the area of the false tooth. Again, pain relief doesn’t help. All I can do is put a little spot of arnica salve cream on my chin to ease the pain! My dentist is as confused as I am about it all! It just says on my dental records ‘a-typical facial pain.’
Back to the review appointment – the registrar booked me in for a treatment review in 3 months’ time (June) & the Breast Cancer nurse gave me a leaflet about Tamoxifen. I didn’t really have a chance to tell the registrar that my body takes ages to get used to a new drug, so doing the review in 6 months might have made more sense. Then Stephane & I went to celebrate at Maggie’s Centre on the hospital site.
Once home, I dutifully replaced my Letrozole for Tamoxifen in my dossett box & took the unused Letrozole back to my local pharmacy for disposal. I took my first Tamoxifen tablet that evening – it tasted incredibly bitter & it was much larger in size than the other drug. Then I waited.
Nothing happened for the first 5 days & then boom, horrible, horrible side effects! I had a terrible migraine that wouldn’t shift for 4 days. None of my migraine medication worked. I had to slather a ‘4Head’ pain-relieving stick across my forehead (other brands are available!) & rub white tiger balm into my temples. I had to lie still & cover my eyes because my light sensitivity was so bad. At the same time, the sickness hit & I couldn’t keep any food down. I thew up my anti-sickness tablets. I drank copious amounts of cold water to keep hydrated. And I was so incredibly hot all of the time. It was the Easter holidays & I’d taken some time off to help Stephane decorate our hallway. I couldn’t do any of that & I could eat my Easter egg either! I was raging!
Then after 4 days the migraine subsided & I stopped being sick. I get fewer headaches. My nausea & sickness aren’t so frequent, but I keep eating too much. I’m finding out why they say weight gain is one of the side effects of Tamoxifen. My hot flashes & flushes seem to have eased a little. I seem to have more energy (but that might be because the mornings and evenings are much lighter). My joint & muscle pain seems to have eased, but then the weather has been warmer – warm weather is much kinder on my bones.
I hope this new trajectory continues but that’s why I’ve given this month’s blog the title that I have. In theory, I should be celebrating because I’ve done well so far on the treatment & I’ve been able to go onto a new drug that will also be kinder to my bones. However, when I was in the midst of the worst side effects during the easy stages of taking it, it felt like I was going backwards in my treatment. How could it feel like progress with my head stuck firmly in the toilet?
However, ranting aside, I’m still here (for which I’m truly, truly grateful for), the treatment might be finished in 9 years’ time instead of 10 & I’m looking forward to seeing my brother in his folk band, Evolution Of Fisherman tonight at St. Pancras Old Church, Kings Cross, central London.
Today, 10th March, marks 6 years since I heard the words, “I’m sorry you have Breast Cancer.” My head did a 360 turn & then my life became ‘Before B.C. & After B.C.’ So what’s happening now?
Alt Text: A large group of diverse people, posing for a photograph in a lecture hall.
Six years on & the world is still in great turmoil. When I was being diagnosed in Charing Cross Hospital during the morning of the 10th March, we were at the start of a worldwide pandemic spreading fear & panic across the world. Today we’re at the edge of war which is escalating by the day. That’s pretty scary for any cancer patient, or anyone in receipt of regular, life-saving treatment. Any unplanned interruption or break in treatment cycle is terrifying for the patient, their families & friends.
I can’t let my mind go to the places that it went to when I was diagnosed & then my operation was cancelled three days later. I’m not going to think about war potentially interrupting my treatment. Instead I’m going to think about the here & now.
In a couple of weeks time I’m catching up with my oncologist at Charing Cross Hospital, London. I haven’t seen her for just over two years (I haven’t needed to), but depending on how I’m doing, I may have reached the end of one of my treatments. I’ve got to the target age of 55 & I’ve had the total number of treatments required. This is the first big treatment change I’ve had since finishing radiotherapy in September 2020. It’s quite a milestone. You know that I have a needle phobia? (I’ve mentioned it in most of my blogs, lol!) Since March 2021, I’ve been on a monthly injection of Gossamer (brand name Zoladex) which shuts down my ovaries, so the cancer can’t feed off my Oestrogen. It’s brutal. The injection is in fact a pellet that gets injected into your tummy & it slowly dissolves in the lining of your stomach. When the GP presses the syringe, it clicks really loudly & it never fails to make me jump! I use numbing cream on the site which I put on an hour before the injection. That really helps control the pain & my nerves.
I’ve always had awful side effects with this injection although most people don’t get any at all. After the injection is given, my body temperature soars, my brain turns to mush & I’m sleepy for the rest of the day. If I’m lucky I won’t get a bruise from the injection but I always bleed after it because my stomach is squashed up when I’m sitting in my wheelchair. I’ve got neat little red pin pricks all over the left side of my stomach (I don’t have them on my right because of my body shape – that’s too complicated to explain!) I wonder if these pin pricks will ever disappear?
I’ve asked what side effects there could be when I come off Zoladex. All the medics I’ve spoken to so far seem a bit non-plussed by my question because apparently this drug has no side effects. So I guess like everything else on this cancer journey, I’ll just have to find out for myself. I do wish there was research on the side effects of ER positive cancer treatments on people with Breast Cancer.
And talking of cancer research, this brings me on to what I’ve been doing for the last year & a half.
Alt Text: A middle-aged woman, sitting in an electric wheelchair, is at a table with two young, diverse students in a room. They are deep in discussion. There are notebooks, pens, papers, cups, glasses & water bottles strewn across the table. The background is blurred but there is an area for preparing food & drinks. The surfaces are all stainless steel.
About 18 months ago I bumped into a neighbour at my local Maggie’s Centre who was there supporting her sister. We got talking & knowing my activism background, she told me about how I could get involved with some Imperial College / Imperial NHS Trust programmes for cancer patients. I contacted the Lead Nurse for Imperial CRUK, Kelly Gleeson, explaining who I was & my lived experience, & I got a really positive response back. I went to a meeting & that was the start of my involvement with PPIE – Patient Public Involvement and Engagement – with Imperial.
Since then, I’ve co-produced an EDI (Equality Diversity Inclusion) measurement tool with other patients & one of the professors that makes sure that researchers are including a diversity of patients in their work, worked with an artist who is designing peaceful environments for hospital rooms, co-designed an exercise programme with an O.T. & other patients for people who have mobility impairments, I’ve attended a London hospitals trust conference as a Patient Advocate where new treatments & research were discussed & I’ve been in a film about the importance of early detection in cancer (& why diverse people are likely to miss out on that early crucial stage of screening & testing).
It was during the filming that I met the Head of PPIE at the Royal Marsden Foundation NHS Trust, Markella Boudioni. Because the hospital hasn’t identified any disabled cancer patients being treated there, she asked me to join their PPIE programme too. So far, I’ve done some training to prepare me for the role which has been really helpful, I’ve joined the Equality, Diversity & Inclusion Patient & Public Contributors (EDI PPC) Group & taken part in an inaugural meeting of patients & the PPIE to identify what’s most urgently needed in support for diverse patients.
However, my most favourite task is to work with the student researchers at the ‘Science Communication Workshops.’ It’s always so interesting. Their projects bring light & hope into the world when it’s easy to become so despondent. And ultimately, their research will save lives, perhaps not in my lifetime, but in the future. The students are fiercely bright & eager to learn. The patients are more than happy to support them. We all learn a lot about cancer this way, & we all want to contribute to this bigger picture. More & better treatments are being developed, alongside treatments which are kinder to cancer patients. Early detection & testing becomes better & more reliable. Treatments can be personalised even more than they are now.
During the ‘Science Communication Workshops,’ the students have to read their ‘lay summaries’ (a 300 word summary of their project & what they’re trying to achieve) to the patient advocates. Then we have to tell them if we’ve understood them. Patients are always part of the boards who decide on what gets funded & also patient involvement is a much bigger part of the research process than ever before, so giving this support is really important.
Last month, Kelly asked me to write an article about my experience working with MSc students (Masters) & I’ve included links to a couple of places where it appeared.
For the past few months, I’ve been submitting my ideas to the UK Government’s National Cancer Plan from the perspective of being disabled and then getting diagnosed with cancer via MacMillan Cancer, Breast Cancer Now and the Department of Health & Social Care. To my surprise I received an invitation from Number 10 Downing Street to join the Minister of Health and Social Care, Wes Streeting, for a presentation on the new National Cancer Plan, ahead of World Cancer Day.
Alt text: a headshot of a white-skinned disabled woman sitting in her wheelchair in front of a black door. She is wearing a long, black puffa jacket, a gold slide in her hair & pink / brown round glasses. She is smiling. Behind her, the black door is open & a small group of diverse people are milling around. It’s night time.
For the past 18 months I’ve been heavily involved with Imperial College and Imperial NHS Trust as I’ve joined their EDI (Equity, Diversity & Inclusion) & PPE (Public & Patient Involvement) programmes. And two weeks ago I was invited to join the Royal Marsden’s PPIE (Public and Patient Involvement & Engagement) group because they don’t have anyone who identifies as disabled to support their activity. I’m going to write a future blog dedicated to the topic of PPIE at a later date, but first, I wanted to talk about how I contributed to the National Cancer Plan.
Here’s what the UK Government’s Department of Health & Social Care say about the new plan:
Three in four cancer patients will survive long term under radical new cancer plan
75% of patients diagnosed from 2035 will be cancer-free or living well after five years, following record investment in the NHS
NHS to meet all cancer waiting time standards by 2029, with hundreds of thousands more patients treated within 62 days
Major expansion of robot-assisted surgery and faster diagnostics to slash delays
Patients will receive faster diagnosis, quicker treatment, and the support to live well with cancer under the government’s landmark National Cancer Plan, unveiled today.
For the first time, the NHS will commit to ensuring three in four people diagnosed with cancer from 2035 onwards are cancer-free or living well after five years.
This represents the fastest rate of improvement in cancer outcomes this century and will translate to 320,000 more lives saved over the lifetime of the plan.
The NHS has not met its central cancer performance target - that 85% of patients start treatment within 62 days of referral - since 2014. Survival rates are below Romania and Poland for some cancer types.
Under this plan, that will change – by March 2029, the NHS will meet all three cancer waiting time standards, meaning hundreds of thousands more patients will receive timely treatment. This demonstrates the real change being delivered by the government’s record investment as we rebuild the NHS.
60% of patients currently survive for 5 years or more and around 2.4m people are currently living after a cancer diagnosis.
The plan sets out sweeping reforms to how cancer is diagnosed and treated:
Faster diagnostics: A £2.3 billion investment will deliver 9.5 million additional tests by 2029 -investing in more scanners, digital technology and automated testing. Where possible, Community Diagnostic Centres will operate 12 hours a day, seven days a week, bringing testing closer to where people live.
Robot-assisted surgery: From hip replacements to heart surgery and cancer operations, the number of robot-assisted procedures will increase from 70,000 to half a million by 2035, reducing complications and freeing up hospital beds.
Treatment at specialist centres: More patients with rarer cancers will have their care reviewed and treated at specialist cancer centres, where they can benefit from the expertise of the best cancer doctors. These centres bring together surgeons, oncologists, specialist nurses and radiologists to agree the best treatment plan for each case.
Genomic testing: Every patient who could benefit will be offered a test that analyses the DNA of their cancer. This helps doctors understand exactly the type of cancer someone has and choose treatments most likely to work for them.
Waiting lists: New technology is being developed to give patients better access to tests for cancer by offering them the earliest available appointment from a range of NHS organisations in their local area.
The government has also announced a new AI pilot to help detect hard-to-reach lung cancers sooner with fewer invasive tests as well as a new employer partnership to support England’s 830,000 working-age cancer patients to remain in employment during and after treatment.
While more people survive cancer than ever before, progress has slowed over the last decade, and England remains behind other comparable countries including Australia and Denmark. For some cancers, such as brain cancer, survival rates in England trail behind countries like Croatia and Romania.
The cancer plan comes as the government continues to make strides on cancer waiting lists, diagnosing or ruling out cancer on time for 213,000 extra cases since July last year.
One hundred and seventy community diagnostic centres are now open – with over 100 of them available at evenings and weekends – bringing checks, scans and tests closer to where people live and at times that work around them. The government is also taking tough action on the causes of cancer: introducing a generational ban on smoking and a ban on junk food ads before 9pm.
I know it’s quite a lengthy piece to digest, but I want to make sure that everyone who lands on this page gets the chance to read the press release in full.
I must admit, I got really excited when the consultation for the National Cancer Plan was announced. I saw it as my opportunity to talk about my experiences as a disabled person living with a cancer diagnosis & what needs to change in screening, detection, treatment & survival support for disabled people to have an equitable experience in cancer care. I gave my feedback at a conference organised by MacMillan Cancer & the Department of Health & Social Care, as well as submitting detailed, written notes after the event. I submitted notes directly to the Department of Health & Social Care, as well as completing public surveys hosted by Breast Cancer Now and MacMillan Cancer.
You never know where your perspective, your hopes, dreams, fears and ideas will take you. On this occasion, they took me to the heart of the UK Government – to a reception hosted by the Minister for Health and Social Welfare, Wes Streeting, at Number 10 Downing Street. (Downing Street is wheelchair accessible. There are temporary ramps to enter through Number 10, then there is a passenger lift to take you to the first floor. There’s one final lift for wheelchair users – it’s very posh, it turns the carpeted steps into a platform lift with the aid of a small key & takes you to the reception rooms. Yes, you miss out on climbing the staircase where all the UK Prime Ministers’ portraits are, but you can go out on the landing to view this area).
I have been to 10 Downing Street before. It was for the launch of the Edinburgh Fringe Festival. In my capacity as a senior leader within music, live events and access for disabled people, I’ve attended meetings, receptions & events in the House of Lords & the House of Commons. I also hosted an event in the Atlee Suite, Portcullis House. However, this time it felt even more special because I was invited because I’d shared my personal lived experience. It felt like my perspective had been taken on board amongst the thousands of responses.
Let me share some statistics with you which galvanized me to work on the National Cancer Plan. (This from a conference for medics that I was invited to last year. I attended as a PPI patient):
Pre-existing comorbidity rates were higher in the cancer population (13%) compared to their peers; and those with more comorbidities were likely to have an extended referral interval.
Pain, multiple symptoms and less typical symptoms were all associated with longer treatment referral.
There was increased primary care attendance history in the 2 years prior to diagnosis – even when peer-matched.
People with severe & enduring (the presenter’s words, not my own) mental illness had the most clinical contact, but they were diagnosed at a later stage. (I enquired as to their definition of mental illness & the presenter said it included people with anxiety and/or depression).
Minister Wes Streeting made a compelling speech. I’m not saying anything that’s not in the public domain by sharing that he lives with a cancer diagnosis himself. He was diagnosed with Stage 1 kidney cancer a few years back. He talked about his fears as a kidney cancer patient & also the experiences of his close friends & constituents, some of whom didn’t receive the timely diagnosis, treatment & kindness that we all should expect.
At the end of his speech, we had the opportunity to speak with the Minister on a 1-2-1 basis. As you can imagine, I was one of the first in the queue! It wouldn’t be right for me to repeat our conversation word for word, but we did talk about this myth that disabled people can’t possibly get cancer or any other general health condition if they’re already disabled, access to health information in different formats, inaccessible mammograms & radiotherapy tables, & what cancer treatment might do to bodies and/or the health of people with underlying conditions. Currently there is no clinical trial data or research data on disabled people who have been / are being treated for cancer. He then directed me to his team & we had a really positive conversation about how to change attitudes on cancer care & disabled people, & how to ensure equity of experience for disabled cancer patients. I didn’t shy away from the more difficult parts of my experience – like the time my surgery was cancelled because it was March 2020 & the times that I was devalued in conversations like “are you sure you want to go ahead with cancer treatment?” & “if we take you into hospital in March 2020 & you caught the other ‘c’, then you’re not likely to survive – oh & you wouldn’t be offered a ventilator either, (i.e. implying that the ventilator would go to someone younger & healthier than me). There were a lot of shocked faces but for me, that’s all the more reason I need to speak out. And in that moment with the Minister, I felt ‘heard.’
When World Cancer Day arrived a few days later, I shared some photos of my partner & I outside Number 10 (you’re not allowed to take photographs inside the building) on social media & I shared different pieces on the National Cancer Plan as well as the statistics that had been previously shared with me. I’m sure World Cancer Day was triggering for a lot of people, their families & friends – me included. I made sure that I didn’t share anything more personal on this day.
But the real work on the National Cancer Plan starts now. We’ve all got to hold the UK Government’s feet to the fire on targets, & we’ve got to get the hospitals & other healthcare settings to abide by the plan. We’ve got to get improved care and survival rates for those most marginalised – by poverty, deprivation, diversity including disability & learning disability, age & the area where they live.
A bit longer down the line, I’ll return to the National Cancer Plan because I haven’t had the chance to review the final edition through the eyes of the disabled perspective. I wanted to give it time to sink in.
Finally, I want to remember Graham Findlay who passed in the early hours of World Cancer Day. Graham got in touch with me because he was a disabled person who was also living with a cancer diagnosis. Like me & many of my guest bloggers, he wanted to improve the cancer experience for other disabled people. We’d planned to work together on a collaborative blog, but this wasn’t to be. I’m sad that we never got to meet in person & I’ll miss our email exchanges. He was a kind, generous & funny man. I’m sending love to his family, friends & colleagues.
My annual mammogram seems to come around quicker with each year that passes, but there’s always something different to report! Let’s see how I got on this January.
Alt Text: A photo of a residential street taken from the ground floor front window. Outside there is a light blanket of snow on the pavement & on the street as it continues to snow. In the foreground through the window, there is a terracotta pot, resting on a sill. There are two cyclamen plants, not in great shape, in the pot. The flowers are pink or red. They have green leaves with white veins. Looking beyond the flowerpot, there is a concrete wheelchair ramp with black handrails leading to the pavement. Cars are parked on both sides of the street. There is a traditional black London lamppost. The houses opposite are red-brick Victorian houses with sash windows & small balconies.
I braved the early January weather to go to hospital for my mammogram. It was a few days after my birthday. It was freezing outside & also in the scan room. This is never great when you’re about go topless & put your breasts on two very cold scanning plates! But here we are, those in charge still not entirely thinking about the comfort of people going through mammograms!
I had a very supportive radiographer who was doing my scan, but I could see her face drop a little when she realised that I was her patient. This nearly always happens & I’m very used to it. I have to take a deep breath & get into ‘battle mode.’ This means remaining as calm as possible. I also attempt to get the radiographer not to panic: I remind her that it’s easy if she follows my direction & that I’ve been having mammograms for many years. My attempts don’t always work & the procedure really tests my patience, but I try to give it a fair go!
This year there was something new offered – a chair for me to sit on. It went up & down, a bit like an office chair. It might have been permanently in the room but it could have been put there for me. Someone spotted that I was a wheelchair user from my notes. I had asked for a wheelchair accessible mammogram at 2025’s scan. I’m not entirely sure if this is how accessible mammograms have been set up, but I was very wary of this chair. The radiographer insisted that I should use it because it would be ‘better for both of us.’ It’s because the chair was able to go up and down. But I declined because I was worried about the chair giving me enough support for my back & even if it went down low, would it still be able to accommodate my left hip which protrudes & makes left-side scanning a little trickier (& sometimes painful)? After a bit of gentle to & fro, I suggested that we should try me with standing again, as time was ticking (not that there were any other patients in the waiting room with me). I was trying to hurry the start of the process because I was getting really nervous!
The mammogram went ahead in the usual way – I stood on one leg & positioned myself just about long enough for the image to be taken. The radiographer was pleased at the effort that I was making & at the same time surprised that this was even working at all. As usual, I became breathless when the plates had to push hard against my protruding sternum. One of the left side scans had to be repeated because the radiographer couldn’t get a good enough image. But we persevered & bingo, the scan was completed in about 10 minutes. About halfway through the radiographer started to rush – running back from taking the image, to re-position me for the next scan. I had to ask her for a mini-break to take in some water. She was kind & supportive, apologising for the room’s freezing temperature.
Quite a lot of you will know the drill by now, but I have to wait 15 days for my result. Scanxiety is riding high & I’m trying to keep myself occupied. It’s particularly bad at the moment because I’ve been experiencing extreme fatigue & stomach upset which could be ‘something & nothing’ (as British people say). I start to shake when the postman arrives.
A few days after the scan, a notification popped into my NHS app (a medical app for UK patients which gives us our appointment dates, letters & test results. We can also order our prescriptions through it). On closer inspection, there were some results. I opened it up & it said that there was a notification for a mammogram, but the accompanying text said “able to view from 5th February 2026.” I hate these messages. What’s the point of alerting you that the scan is in, but the patient isn’t able to view it yet? It just makes the whole scanxiety thing a whole lot worse!
I don’t have any outcome to give you. I’m hoping I get the all-clear again. It’s been six years since my diagnosis. I’m still in treatment for potentially another 10 years so it has been quite difficult watching most of my peers who are now reaching five years since diagnosis, & able to come off their medication. I try not to think about the 6.5 years ahead of me & how much more mobility I might have lost by then, or how confusion will further reign in my brain. But I’ve got to try to tolerate the treatment as best I can.
I see my oncologist in March so I’ll catch up with her then. She’s also ordered another Bone DX (bone scan) for me in February. It’ll tell the same old story of osteoporosis setting into my bones, & why my lower back hurt. I need some dental work, but I can’t take it yet because I have extensive dental work to be done. I’m also rather afraid as this medication can wreck your teeth & jawbone. However, I’m hoping that my Zoladex injections can finish in March 2026 as I would have done the regular course of monthly injections. But as always, you’re forced to live in the moment when you live with a cancer diagnosis.
Remembering my lovely neighbour who passed from secondary breast cancer last week. May she rest in peace for eternity.
Alt Text: A white-skinned couple in front of a Christmas tree covered in little coloured lights & Christmas decorations. Behind the tree is a wooden Advent House with numbered doors that can open & close. The house is painted red, copper & green. The numbers & stencilled images on the doors are painted white. The woman sits in a manual wheelchair, wearing a blue dress, a necklace with a purple ribbon that acts like a chain & a cross with beads of purple. She is wearing black/blue glasses, silver hooped earrings and a nose piercing with a diamond looking stud. She is smiling. The man is wearing a black jumper with a picture of Chevy Chase in the lead character of Clark Griswold. Text in red capitals says ‘Merry Kiss My Ass.’
Blog:
Well who would have thought it – I’ve reached my 60th blog! I started writing the blog in December 2020 & this is another milestone that I’ve reached.
I promised to update you about the tests & scans on my eye (which I first wrote about in my previous blog). First of all I want to say that my eye is fine, thank goodness! Moorfields is the best eye hospital in London, potentially the world, & they treated me with respect. Here’s what happened at my appointment with them.
When we arrived at the hospital, working out how to get to my department was pretty easy because it has coloured lines on the floor & large text signs to follow. The staff were all very aware & came out of their reception are, bringing their checking sheets with them so that visually impaired people didn’t have to struggle at the reception desk. That was a really lovely touch & I’ve not seen that in other hospitals. There were a lot of patients & staff, but the area was calm & the staff kept everyone informed about waiting times. I honestly don’t think that I waited more than two hours – & that was only because I wanted to see my results straight away with a consultant present.
The first room that I went into, the medic just took some basic details. Then she checked my eye pressure (& this time I did let her put the device on each of my eyes very quickly. For me, it wasn’t painful at all. Then I read the wall chart (with my glasses on, I mean…!) & finally she put some eye drops into each eye. People say they’re painful at times, but my eyes weren’t sore at all. I admitted to the medic that I was very concerned about the outcome today, so she advised me to say to the radiographer that I wanted to wait to see the consultant.
Then I went for the scans & tests which were like the tests I had Western Eye Hospital, except this time I wasn’t rushed & I had eye drops in my eye to create the contrast needed. I repeated to the radiographer that I was too scared to wait two weeks for my results & that I wanted to see a consultant. She was fine about it & said I’d only have to wait 30 mins to an hour longer. I could see that she was puzzled about what I’d said about having a cancer scare so I asked her outright if she could see any cancer. She said that the consultant would confirm that (I knew deep down that would be her answer, but I always try & ask the radiographers all the same).
The scans & tests were inaccessible as usual so there I was, wobbling away in a time-limited standing position on one leg, just like each mammogram that I have! Having said that, the radiographer was kind, helpful & patient.
I went back to sit out in the crowded waiting room but it was still calm.
An hour passed. Both medics that I’d already seen kept checking that I was ok. Then a very friendly lady came out & introduced herself as the consultant, & then she ushered me into her room. She had a student there as well. She started off by asking me why I had mentioned eye cancer (remember Western Eye hospital’s referral letter only contained 3 Latin words but no information to say that I’d had Breast Cancer & that I was a wheelchair user!) I explained my circumstances & she said, “Now it makes sense!” in a big exaltation. She went on to confirm that it wasn’t cancer on the back of my eye at all. In fact, not only that it wasn’t cancer, it was never likely to develop into a melanoma. It was just a simple mark. I burst into tears of relief. I asked her about the yellow pigmentation & the raised part of the mark. She confirmed that they were never there, turning the scan image towards me to show me that the mark was completely flat. So Moorfields were right all that time ago when they said I didn’t need to be seen by an eye cancer doctor! She apologised for the treatment that I’d had. She said that there was no way that this was even a suspicion of cancer & that she was genuinely baffled that Western Eye hospital hadn’t immediately picked this up as non-cancerous. She apologised for all the distress caused to me. Then she said a couple of important things: directed towards the student – “Learn from this because this is no way you should ever be treating a patient in this way.” Then she said that she was concerned that my mental health had been damaged by this situation, so she wanted to see me in six months’ time to re-do all the scans & tests. This was to double reassure me that there was no cancer & that I should be confident in the results. I was still crying when I left her room.
I quickly updated Stephane in the corridor as we got ready to leave. Then the consultant & both of the other medics came out again to check on me one final time, and the consultant touched my arm as if to say, “You’ll be ok now.”
I’d waited so long for this appointment. I’d worried myself sick that my cancer had come back. I’d got up very early in the morning & travelled across town at daybreak to get to Moorfields. It was unnecessary in so many ways.
I got some rest on the same afternoon but I had to wake up & prepare the injection site for my cancer injection. My GP was treating me in the early evening. I cried all over again when I was explaining everything about that morning to her. She asked if I would write a complaint to Western Eye hospital. I said Moorfields would probably do some sort of internal investigation, but that I’d write a complaint as well.
Actually I’m not going to make a complaint. I’ve written so many complaints over the years to the NHS. I haven’t got the energy to do it at the moment. If I do decide to do something, I’ll just send PALS at Western Eye hospital this blog, & my previous blog.
I’m bringing on Christmas as soon as Friday the 12th. Yes, after Friday, I’m taking a month off work. Not because I’m particularly financially stable or anything, but because if I can’t take a month off as a freelancer at a time of my choosing, then why am I freelancing! 2025 has been a very big year & I need to relax to let everything slowly sink in.
Christmas time can be a very mixed month when cancer is around. In the past few years I’ve opted to stay home & enjoy the main event in my little flat with Stephane. Sometimes I get poorly over this period & that’s not nice. If friends & family want to see me, then I ask them to come to me instead. Rushing here, there & everywhere isn’t conducive to me having a good Christmas, NYE & a good birthday.
I advise taking Christmas at a slow pace. Let someone else take on the cooking, the planning of the board games, the planning of the tv-watching, working out how many chairs you need around the table (& do you need a bigger table?) & worrying about where’s everyone going to sleep. I bet you’ve done so many years of this, so this time it’s time to put yourself first at Christmas. You won’t regret it!
Finally, I’d just like to thank all my readers & supporters for commenting on my blogs, sharing them & sending me love. I appreciate you all very much. I hope you have a wonderful Christmas & here’s to a peaceful 2026.
The Musings of Spu 