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!
Onwards & upwards. COME ON!!!!!
The Musings of Spu 