Four Years On

It’s four years on since my Breast Cancer diagnosis.

Alt text: A selfie pose of a middle-aged white woman sitting in her wheelchair in a room that is made of wood paneling & floor to ceiling windows. She is wearing a white face mask, a black puffa jacket with a black faux fur hood, a blue t-shirt & a blue jumper over it. She has brown/grey shoulder-length hair with a fringe. She has a pair of round pink/brown glasses perched on top of her head.

Four years ago today (10th March) I heard the dreaded words “You have Breast Cancer.” Such a small statement to have such a huge impact on my life. I’ve just had my annual mammogram & I’m happy to say that I’m still cancer-free. This is also your reminder that I’m cancer-free because the drugs are still working. It’s got nothing to do with being positive, fighting hard or any other crap tropes that people trot out.

It’s also Mother’s Day (in the UK) which is always a difficult day. My mum died of secondary Breast Cancer & I’m reminded that the treatment was so different back in the 80’s. They didn’t even remove her lymph nodes when they removed her breast.

I’ve written before that February & March will be difficult months forever. It’s always taken up with the annual mammogram & then waiting for the results. My scanxiety was particularly high because I haven’t felt well since my last bone infusion. I’ve been so sick & nauseous that I’ve had to reduce a lot of food groups & take all my evening medication an hour after dinner with the hope that food will stay down. I also had some additional scans to deal with – abdominal & pelvic scans in case the vomiting & pain was something “else” (thankfully it wasn’t). I had some pain in the areas where I had my Breast Cancer surgery – it was a different kind of pain than I’ve had before. Plus I had pain in my armpit which really, really worried me because a small cancer was found there during my lumpectomy. After a glorious birthday month of January, I went into February & March feeling very scared.

The breast pain was really weird. It felt like someone was squeezing my nipple very hard. I know some people pay good money for this kind of thing but I can assure you, it was so unpleasant! On top of that, my armpit just ached & ached. At my mammogram, I requested to see a Breast Cancer nurse so I could let her know what other symptoms I was having. She took them seriously, especially because I’d had bouts of vomiting. Without hesitation, she booked me into the ‘One Stop Clinic’ for a week & a half later.

As you know, mammograms are tricky for me as a wheelchair user, & as time goes on, I don’t know for how much longer I’ll be able to balance precariously on my legs so I can have the scan. Thankfully this year’s mammogram passed without particular incident which was a relief because I was feeling fragile. My radiographer was really nice but U could see she was a bit phased. She immediately said that she might have to get another person to help her, but I reassured her that I’d had lots of mammograms & that I could help her. She agreed to this & we got the mammogram done with the minimum of fuss. This was in part because we kept talking & working together throughout the whole procedure. There was a lot of mutual respect there. She got some very clear scans which also makes things a whole lot easier. All in all it was a better experience than some others in previous years.

I also had a really good experience at the ‘One Stop Clinic.’ The last time I was there was in July 2023. It was when I met the new Breast surgeon that had taken over from my (wonderful!) surgeon (he has since retired). This new surgeon was very confident – telling me all about the great things he’d learnt from my surgeon. Unfortunately he was also a bit patronising towards me, which you know, never, ever goes down well with me. I asked a couple of supplementary questions during his examination & he dismissed them in a very off-handed way. He basically said that he didn’t know the answers, that it was a Saturday, couldn’t I see that the waiting room was packed, & that I needed to go back to my GP to ask (incidentally, the GP didn’t know the answers either!) Then he sent me for an ultrasound. Low & behold, the radiographer was grumpy too & what’s more, she tutted when she found that there was nothing there! I was shocked! She ought to be thankful for me that there wasn’t anything there (except this stupid ball of fluid at the incision site that won’t go away).

The point I’m trying to make here is that the poor attitude of the new surgeon had permeated through the whole clinic that day. However, the Breast Cancer nurse working alongside him gave me a knowing, sympathetic look. I felt sorry for her having to work with him all day. He was lucky that I was too pent up that day about the ultrasound to challenge him. Otherwise I would have remarked that he hadn’t taken on board the great bedside manner that my Breast surgeon had!

After that experience, I was a bit concerned about going to the ‘One Stop Clinic.’ I needn’t have worried. There was no sign of ‘Mr Dismissive.’ Instead I saw a female consultant who was very kind & respectful. She reassured me that the pain was probably post-surgery because of the nerve damage to my breast & armpit, but she still requested other checks after examining me. Then my Breast Cancer nurse that got me through all my active treatment turned up. It was so great to catch up with her. She always had such a way of reassuring me & making any kind of (usually horrendous) situation ok. With her by my side I felt like I could cope with anything.

The Breast surgeon referred me for another ultrasound. There was no sign of ‘Mrs Grumpy’ this time. Instead the radiographer was gentle & kind. She started the conversation by informing me that my mammogram was clear; in fact, my breasts hadn’t changed at all from the previous annual scan. I was delighted! Then she started the ultrasound. There was no sign of anything in my armpit. I breathed another sigh of relief. Quite soon, she saw the source of the breast pain – it was that pesky ball of post-surgery fluid (a seroma)! The radiographer offered to drain my breast but warned that it could fill up again. I’ve had it drained twice before when it was really big & it wasn’t exactly pleasant. But draining involves needles so I had to decline as I felt that I’d been through enough that day. She was very understanding – she even wrote to my GP to say that she would be happy to do the drain if I changed my mind in the future.

I left the clinic knowing that I was cancer-free for another year. I cried happy tears, drank lots of tea & ate lots of biscuits at the Maggie’s Centre. Then I went back to work in the afternoon. I’m still in pain & I’m still being sick (less now which I’m thankful about), but I’m reassured.

All of that pressure takes its toll mentally as well as physically. I was working on a big project at work which served as a very useful distraction from the scans as well as being something positive that I could put all my energy into. But after a few long days at conferences & enjoying myself at the UK Brit Awards (I work in music!) I had to take some rest.

I want to say a massive thanks to Stephane (my partner), my family, my friends & my colleagues for being by my side throughout. I’d like to urge people to go onto the streets & protest about waiting times for cancer treatment, mis-diagnosis, poor communication & success rates in treatment being woefully behind many of the UK’s peer countries. It’s an absolute disgrace & the future looks very frightening. We have the money here to fund the NHS properly. Why has the life-extending drug Enhertu not been approved for NHS use in England by NICE & NHS England? As someone who lost my mum to cancer at 16, I know how important it is to have as much time as possible to make memories & to be unconditionally loved. Please sign the petition on the http://www.breastcancernow.org website.

I watched ‘Breathtaking’ on ITV a couple of weeks ago. It brought back everything about the pandemic & what I went through as a cancer patient when I was diagnosed in March 2020. I think it’s a miracle that I’m still here; I caught ‘the other C’ three times & my surgery was delayed for four months. My lovely friend Freddie Stabb played the disabled character Ellie Bridges, the young mum who was denied treatment because of the cruel policy that placed disabled people (& other groups of people) on the DNR list. That moment came close to reflecting my experience; you know that I had a DNR placed on me during the pandemic (this is detailed in my first ever blog) & that Ellie could have been me. The other hard moment was when the character who had treatable (I think it was bowel cancer) was denied treatment because the hospital was overwhelmed with ‘the other C’ patients.

Seeing the medics, the patients & families suffering as the drama unfolded was horrific. Except it wasn’t a drama, it was f**king REAL! From what I saw at the time in the NHS back in March 2020, ‘Breathtaking’ got it spot on.

I don’t feel like looking back in detail over the past 4 years. It’s been an emotional couple of months. I’m here living in the here & now, that’s all that matters.