Today, 10th March 2023, marks 3 years since I was diagnosed with Breast Cancer. So how the devil am I? #TriggerWarning – this blog ain’t for the faint-hearted because it talks frankly about living with the long-term side effects of cancer treatment on my body.
Photo credit: Anjan Saha.
Alt Text: A middle-aged white woman with brown / blond flecked with grey, cut into a bob. She is wearing round pink/brown glasses, a thick, black padded outdoor coat with zips & lined with black faux fur, & a black faux fur scarf. She has a small, diamante nose piercing & a small, diamonte ear cartilage piercing. She is looking away from the camera, smiling. She is in a cafe.
The 10th March rolls around once more. The familiar scanxiety sets in – here we go again, another ‘shite’ February & March. Except today is different because I’m relaxing at the end of a very long work week, chilling on top of my bed, typing away, & not as sore as I expected to be. My Zoladex injection got rearranged for Monday lunchtime because my GP thinks he’s coming down with the lurgy.
I know already that my mammogram is clear (omg YES!!!) I had it on the 8th February. I had expected to wait two weeks for the results but there is a great system in place in West London called ‘Patients Know Best’ where you get stuff like appointments, results, letters, etc. digitally. The outcomes letter was uploaded by the 10h February. I read it about 5 times over, closing the app and re-downloading the letter, & then worrying all night after reading it that perhaps a mistake had been made. All part of the mind-bending, ‘gift that keeps on giving’ cancer experience!
My annual mammogram was physically very difficult this time around. I had a very supportive radiographer but the issue is that my legs can hardly carry me now, I can’t bend into the mammogram plates so easily & my arms can’t really stretch around the machine as they did before. In reality, I can only stand on one leg to transfer anyway, but even this is becoming difficult. So with my buckling legs, painful spine & shaking arms, my radiographer & I muddled through, got the scan done quickly (the radiographer always had to run quickly around to the booth to take the image & return to release me before my leg collapses underneath me anyway) & we got some clear images (a miracle!) But I’m scared about how long I can continue having mammograms that aren’t accessible to me as a wheelchair user.
COME ON NHS, all you need to do is make the machines go lower so people can sit down to have a mammogram and machines that can scan you whilst you’re propped up in bed.
I believe that I was more nervous about my scans due to the scare that I had back in July 2022. At the ultrasound, the mass that I was feeling turned out to be a small ball of fluid near my lumpectomy scar. However in February, my brain was tricking me into thinking “what if they made a mistake?” I wish it didn’t do that. I tried all the usual CBT (Cognitive Behavioural Therapy) tricks but nope, there I was down the road of distrust. When that happens, I have to take a step back from life & wait for the anxiety to pass.
So here I am. NED (No Evidence of Disease) for the 3rd year & of course I’m feeling so relieved & happy; excited for the future & full of creative ideas. I’ve certainly got a busy time coming up with both my jobs, with a new climate change programme to lead on which I can’t wait to start. I’m thankful of having the opportunity to learn new skills at the latter end of my career. Both jobs also have milestone events to celebrate in the next month or so – & you all know how much I love a good party!
My campaign to get disabled people recognised within breast cancer prevention and breast cancer treatment has slowly been gathering pace. I’m nervous & excited about taking part in Breast Cancer Now’s The Show on 20th April as a volunteer model. I’ve been to see the space (Illuminate at the Science Museum) to check out the access – it’s perfect for me & the room has a great view across London from the end of the fashion runway. Soon I’ll be testing hair & make-up products, & trying on clothes with the stylist! And I’ve met so many lovely volunteers taking part (shout out to The Show volunteers & crew!)
I’ve even booked a 5-day UK-break in the Lake District for the end of April!
However there are lots of unexpected things happening which I wish I’d been told about & not had to try & work out for myself. Having said this, how many oncologists know how cancer treatment might affect my impairment, & how many Spina Bifida (yes, I’ve had to ‘out myself’ now with my condition because otherwise what I’m saying wouldn’t make sense) consultants understand all the different ways of cancer treatment?
So what am I going through? I’ll try to be brief, lol:
- Sudden & drastic loss of mobility (I’m finding it hard to do one-leg standing transfers, driving with one leg in an automatic car for distances, etc)
- Neuropathy (I can’t bend my fingers first thing in the morning which makes getting out of bed interesting, I’m endlessly dropping stuff that I’ve just picked up)
- Relentless pain (on top of already having chronic pain for years)
- Other deeply unpleasant side effects (even I’m not going to go there, you’ll have to google those!)
This could be down to:
- The side effects of cancer treatment (Letrozole can cause awful, awful muscle & joint pain)
- The medically-induced menopause that I’m in (I already have osteoporosis & nearly all the other joyous things that come with the menopause like flushing, brain fog, etc.)
- Other more worrying signs of recurrence (I get freaked out if I start to write them, do forgive me)
- “Tethering” (many people with my impairment get this as they age as tissues get caught in the spinal cord, which means it can’t move freely within the spinal canal)
It’s so frustrating that breast cancer patients, or any cancer patient, can’t just get a full MRI scan & CT scan annually. Instead, I have to go through this frustrating time of getting just the part that’s hurting the most, x-rayed at any one time (occasionally they’ll let you have two parts x-rayed) because that’s all the NHS will allow my GP to order. So this time around when I said that the pain was in my thigh (& long bone pain like a thigh one, is of the ‘flagged warnings’ of potential metastasis i.e. spread), I could only get my hip & knee x-rayed. Thankfully they were clear of any disease. But my thigh still hurts.
I notice how much mobility I’ve lost every day, but it’s especially prevalent when I’m going yoga & in the gym. I never knew how much oestrogen is needed to keep your joints flexible!
Some of you may question how I can put myself through the agony of gym & yoga. Simple. To reduce cancer recurrence & to keep my old, creaky bones moving for as long as I can. And yoga really has improved my breathing. I give thanks to god that at least THAT hasn’t worsened!
I also had to battle with another GP at my practice who suggested that I should get my mental health checked out. This really annoyed me because without meaning to, the GP was being dismissive. I spoke to my friends at our Expressive Art group (big hello to them all) & they were very supportive. It seems that it’s all too common these days for that to be deemed an acceptable response.
GP’s & other Healthcare Professionals – when a patient comes to you describing unexplained pain & you see them more than once, please don’t refer to their mental health BECAUSE THE PAIN IS REAL & HURTING THEIR BONES & THEIR ORGANS, IT’S NOT IMAGINED IN OUR HEADS. I’m sure that there’s a lot of us out there that recognise being treated this way & feel that we’re being ignored.
Of course, that’s not to say that I don’t have mental health issues after going through Breast Cancer surgery & radiotherapy during a pandemic, & getting COVID-19 twice. But I can promise you that the pain is in my leg, not in my head! And I know where to seek help & what to do if I feel that my mental health taking a tumble!
I’ve said before that I don’t look too far into the future & worry about what my mobility will be like in years to come. It’s pointless speculation that will freeze my brain to the point that I won’t be able to mentally function. I’m best just putting one wheel in front of the other & seeing what the next day brings. “Tomorrow is another day!” is what a former colleague of mine said & my sister agrees that she lives her life by this simple phrase too.
Don’t get me started on what I can’t eat or drink anymore – in fact, that can have its own blog!
In the spirit of trying to move my life forward, I’m in the midst of sorting all this out. I’m lucky to have some very wise & learned people in my life, & one of them suggested this route – getting my GP to bring my oncologist & my disability consultant together on a conference call so they could at least understand what symptoms are being exacerbated & why, how / if they can treat them, & at best, find some sort of compromised resolution to reduce the impact on my quality of life. The GP has agreed to this & an email is on its way to them. I hope it also prompts them to do a full body MRI scan as I’d totally qualify for one with my symptoms! The Spina Bifida unit is quite helpful in getting a full body MRI scan & x-rays of multiple areas of the body all done in two appointments.
Now I’m not blaming any of the people that treat me for not knowing any of the answers. It just reinforces my point that not many (enough?) people with Spina Bifida are being diagnosed with breast cancer & their symptoms are repeatedly put down to “oh that’s just (aging) with your impairment / this is being caused by your impairment. Sadly I know too many disabled people who have gone to their GP with the most obvious symptoms of cancer, even saying themselves that they suspected cancer, only to be dismissed. That didn’t end well for some of them.
And cancer patients can be often ‘gaslighted’ – “Oh, if only they’d gone sooner to get themselves checked”, or “it’s their lifestyle”, etc.
Some of you might now be annoyed with me; feeling that I’m being self-indulgent, that I’m selfish, that I’m ungrateful because I’m complaining – after all I’m alive. I get that. But living with a cancer diagnosis & with an existing impairment comes with a price. I’m doing what I set out to achieve with this blog – to be open & transparent, & to tell it like it is.
I’ve always aimed to live a care-free & happy life – everyone deserves that. And being disabled, having a long-term health condition, &/or living with a cancer diagnosis makes no difference to wanting a life well-lived.
I can guarantee that there is someone out there who is in exactly the same, or very similar situation as me, & thinking “who is out there that I can call upon? Who is out there that ‘gets’ what I’m going through?”
I’m searching for those people to connect with. Our voices need to be heard. In the meantime, I’m going to carry on living, well.
7 thoughts on “3 Years On.”
Hi Suzanne, congratulations on 3 years clear and thanks, as usual, for sharing.
Your last but one paragraph is so true! There will be people out there asking the same questions and very often thinking they are a lone voice so well done on articulating what has been and is going on for you to inspire others.
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Thank you so much Geoff
My second year anniversary comes up in April.
Thank you for sharing all of this – it helps to read the experiences of others.
It helped me a great deal to blog through all my first anniversaries.
“It’s so frustrating that breast cancer patients, or any cancer patient, can’t just get a full MRI scan & CT scan annually.”
Omg,so much this.
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All my best wishes to you for your first anniversary. I’m glad that my blog is helping you. Your comment definitely persuades me to keep sharing my experiences. And I’m glad you agree with me about the full MRI’s & CT scans needing to be done annually
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Yeah, absolutely! I’m in Australia and I had a bilateral mastectomy, and my cancer specialists have said that yearly scans just aren’t part of recommended practice. Having said that,they are prepared to send me for one at 2.5 years. And I did have a CT Brain at around 12 months because my GP and I weren’t sure I hadn’t had a stroke – no stroke, ‘just’ chemotherapy deficits, therefore speech therapy. Ugh… so much therapy.
Absolutely keep sharing – my wellness team were fantastic, but I had also worked in the medical emergency services sector for 13 years, and been an advocate for other people in the past, so I feel like I was really well placed to advocate for myself and to ask questions.Also, my companion advocate is also a medical professional.
Having said that, although the wellness team were great and I don’t feel like I was misinformed,I was one of the rarer people that had massive side effects and significant long term deficits.
I also don’t think they address all the *other* stuff that is part of the experience. Like how it might impact on other conditions, how to prepare your household and life for recovery, and how to navigate convalescence and return to work with new invisible dynamic disability.
I think these are the sorts of things we learn about through the shared experience of others.
So much in here! First of all, forgive me, I’m not proud to admit it, but I had not even thought about how hard it might be for a person in a wheel chair to have a mammogram. It’s so not right that the machines don’t go lower. How is this acceptable in 2023? Kudos to you for shedding more light on what it’s like to face a cancer diagnosis, treatment, and survivorship as a disabled person by being transparent and telling it like it is. And this: “being disabled, having a long-term health condition, &/or living with a cancer diagnosis makes no difference to wanting a life well-lived.” Amen. Thank you for this excellent piece.
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Thank you Nancy for your kind comment, it means so much to me because I’ve been reading your blogs for a while & finding them very helpful.