Please note: I’m not qualified to give medical advice. I’m not a medical practitioner. If you have any in-depth questions or medical concerns, please consult your GP and / or healthcare team.
Trigger warning: You may find some of the detailed descriptions of impairments & treatment side effects upsetting.
‘Explainers’ provides background information about my impairments, the type of Breast Cancer that I was diagnosed with, how all my medications interact with one another & the unique ways in which I experience treatment side effects.
I usually wouldn’t put a name to my disability because I’ve found that it can encourage people to make all sorts of assumptions about me. Every disabled person is unique, even if they have the same impairment & it’s important to remember that. However, for the purposes of giving a bit more understanding of the complexities of treatment that I face, I wavered my confidentiality.
I was born with Spina Bifida – here is an explanation of this impairment from the NHS website – Spina bifida – NHS
I’m a full-time wheelchair user & my left leg is paralysed from the knees downwards. I have reduced sensation & circulation in this leg, requiring orthotics (bespoke made footwear). As well as having severe scoliosis, my left hip is affected too. I’ve been in chronic pain for as long as I can remember. This is bone, muscular & nerve pain. I have developed arthritis over the years. Surprisingly, I’ve only had three operations – at birth so that I survived, at about 18 months on my left hip, & at 23 years old to straighten three toes on my left foot (that didn’t work, they just rolled back into the same place when the wires were taken out & then I caught a bad infection which meant that I risked amputation. Not good!) My foot is now managed by monthly Podiatry at the St Charles Centre, London UK. My Spina Bifida is monitored by Chelsea & Westminster Hospital in London, UK.
Like a lot of people with Spina Bifida, I’m plagued with bladder infections. What with the bladder and foot infections, I’ve taken a lot of antibiotics in my life!
My lungs are also compromised by Spina Bifida. Whilst my lungs are a regular size, they have a very small space to fit into because of the curvature of my spine. My lungs are monitored annually by Brompton and Harefield Hospitals in London, UK. I sleep with my pillows propped upright to clear my airways & I wake up with headaches & a metallic taste in my mouth. The release of carbon dioxide (CO2) is a crucial function of the respiratory system. When you breathe, oxygen is taken into the body, & CO2 is expelled from the body. This process occurs through the alveoli, tiny air sacs in the lungs where CO2 is absorbed into the blood & transported to other tissues, whilst oxygen is diffused into the alveoli. In cases of respiratory failure, the lungs may not effectively remove CO2, leading to an accumulation in the bloodstream, which causes headaches & confusion. That’s why I hate getting up in the morning!
At about 23 years old, I was diagnosed with Raynaud’s (which I would have had since birth) – here is an explanation of this impairment from the NHS website – Raynaud’s – NHS
Having Raynaud’s means that my feet & hands get extremely cold, sore & weak, especially in Winter. Imagine having combined circulatory issues from Spina Bifida and Raynaud’s. Yeah, it’s that good…not!
I have G.O.R.D. Here is an explanation of G.O.R.D. from the NHS website – Heartburn and acid reflux – NHS
Being honest, this is horrendous. It’s so painful & the medication takes all of the stomach acid away – meaning the good bits of immunity as well as the bad bits. It means that I’m very susceptible to stomach bugs such as Norovirus. I have to eat very bland food which has to be cooked thoroughly & not past its sell by date. All the cutlery, crockery, etc has to be very clean. Gastro issues are linked to Spina Bifida because my spine is pressing onto my stomach. There was never a huge amount of room for my stomach anyway due to the curvature of my spine.
In a way, I was relieved to be diagnosed with gastro because as a kid, I was often called a “fussy eater” & no one really understood in those days about dietary intolerances. I find soya milk & sourdough bread its helpful in my regular diet.
In March 2020, I was diagnosed with ER positive (Oestrogen Receptor) Breast Cancer, Stage 1b (that’s an early stage cancer. In my case, I had two small tumours in my right breast & one small lump in one of my lymph nodes in the right armpit removed). Here is an explanation of this type of Breast Cancer from the NHS website – Hormone receptors and breast cancer | Breast Cancer Now
As explained in one of the early blogs, I didn’t need to be treated with chemotherapy.
I had a lumpectomy – Surgery for primary breast cancer | Breast Cancer Now During the surgery, I had my Mirena Coil (my method of contraception) removed (my breast surgeon happened to be a gynae surgeon too!) – IUS (intrauterine system) | NHS inform – because of the cancer that I was diagnosed with.
Next came 5 sessions of partial radiotherapy (because the medics wanted to protect my lungs) – Radiotherapy for primary breast cancer | Breast Cancer Now | Breast Cancer Now
An early part of my treatment was to to have 6 sessions of Zelondronic acid infusions given over a 3 year period – Bisphosphonates for primary breast cancer | Breast Cancer Now This treatment was to prevent the Breast Cancer spreading to the bones & other parts of the body. It was also given to me because I had Osteopenia – Osteopenia (low bone density) – caused by my Spina Bifida. I was at great risk of Osteoporosis (see later!)
I had terrible side effects from the Zelondronic acid treatment – the pain was indescribable for me, it was like my bones were grinding against one another & it also gave me flu-like symptoms. On the last infusion, I caught Mastoiditis – Mastoiditis – NHS – & required a course of super-strength antibiotics. This experience is also detailed in an earlier blog.
It was a shame because the infusions worked well, improving both the DX of my spine & my hips. This is what a bone DX (Bone Density Scan) is – Bone density scan (DEXA scan) – NHS
My current treatment is:
Daily tablet of Letrozole – Letrozole (Femara) | Breast Cancer Now
(I had previously taken Tamoxifen – Tamoxifen | Breast Cancer Now | Breast Cancer Now whilst I was waiting for my surgery – delayed by the pandemic – because it seemed the drug with the less side effects on Spina Bifida. It’s not usually prescribed for patients that haven’t been through the menopause yet. In fact my hair started to fall out & my short term memory was affected. I also took Exemestane for a short period – Exemestane (Aromasin) | Breast Cancer Now – because the side effects of Letrozole were so bad, but Exemestane made me very depressed so I went back onto Letrozole).
All of these medications are Hormone (Endocrine) Therapy – Hormone (endocrine) therapy | Breast Cancer Now
I also have a monthly injection of Gloserelin (Zoladex) into my stomach which is a horrible & painful as it sounds – Goserelin (Zoladex) | Breast Cancer Now I’m prescribed numbing cream to help manage the pain.
Well, that’s quite a lot going on there & as you might imagine, the Breast Cancer treatment has had a huge effect on my other impairments.
Now I have Osteoporosis in my spine. The infusions could only hold this off for some time. This is what the NHS says about this condition – Osteoporosis – NHS
My joint pain is now through the roof now that the Spina Bifida, Osteoporosis & Letrozole are combined. Recommended advice is to exercise but I can only do this to a minimal extent. I have to rely on opioids to help me get through the day & night. I try not to take them but I just can’t cope with the cold & rainy days, & perversely the extreme heat, without opioids. Sometimes I’ve been through periods when I’ve had to use morphine patches for the pain. I was like a ‘space cadet’ on them & I started to stay home more than was healthy. But if I need a break from the relentless pain, then morphine is my only option.
Onto Peripheral Neuropathy or nerve pain – Peripheral neuropathy – Treatment – NHS – my nerve pain is much worse thanks to the combined efforts of Spina Bifida, Raynaud’s and Letrozole. I’ve developed Plantar fasciitis – Plantar fasciitis – NHS – so I wear special insoles in my shoes & now I’m starting to lose the feeling in my right foot, starting with my fourth toe. Standing up to transfer is tricky & I often over-balance. As well as having neuropathic pain in my feet, I’ve developed it in my hands. I’m constantly dropping things, it’s very frustrating. For nerve pain I take a small twice daily dose of Amiltriptyline. However, I’m allergic to the usual medications that the NHS doles out from the Pain Management clinics – Gabapentin, Pregabelin & I can’t take any anti-inflamatories due to my Raynaud’s.
I take Calcium supplements fortified with vitamin D to help protect my bones too.
Sometimes different pharmaceutical companies put coating on their tablets which gives patients really bad nausea & vomiting. The advice is to swap brands but that’s unrealistic now that we’re post-Brexit. The amount of brands to choose from is very small, plus the ease of ordering prescriptions in the UK seems to be another difficulty to contend with. Sometimes I have such bad nausea & vomiting, it’s so debilitating. At times, the anti-sickness medication doesn’t work for me. Obviously the coating on some of the Letrozole brands doesn’t agree with me. Combined with G.O.R.D this isn’t great at all! I take Omepraxole and Ondansetron to manage the stomach acid, & nausea & vomiting.
Onto fatigue, & now it’s not like being really, really tired! I never knew one person could get so mentally & physically tired! I don’t know what you’d call mine – double chronic fatigue? I mean, does that really exist? I’ve been exhausted for summer 2025. Because my fatigue seemed to be getting worse, I went to have extensive bloodwork at my GP surgery. All my results were very good, so there doesn’t seem to be an obvious cause. I take vitamin B12 prescribed by the GP to help boost my energy. One of the Breast Cancer nurses in my clinic put my tiredness down to the late effects of radiotherapy – I had radiotherapy 5 years ago, September 2020! I had no side effects at the time, in fact, I helped my partner paint our garden shed, lol!
And then there’s the menopause. Of course, I can’t do anything about easing the side effects because of the type of cancer that I had! My treatment is basically two types of drops for my dry eyes & recently I’ve been using the Oestrogen gel. It’s proved to be effective & safe to use. I rarely drink coffee now & tea is always decaffeinated!
But I can’t do anything about the increased joint pain, ‘brain fog’, hot flushes & flashes (to be fair, the gel has helped regulate this a bit more but not to the extent that I’d hoped), crying at adverts involving kids & pets, going through a phase of getting terrible anxiety about driving (yes, that IS a menopause ‘thing’), weight gain (boo!), & raging mood swings (to be fair, my mood swings have got better since I left permanent employment & went freelance, lol!)
My skin & hair are also very dry so now I use only natural products on them both & I’ve stopped dying / highlighting my hair (except for going pink each October). I really like how my hair has these wispy silver strands amongst the brown & the blond.
So that’s it – how all my comorbidities (such a charming world!) interact & intertwine. Yet I’m still here, keeping going, one wheel in front of the other.
I hope my honesty & openness have helped you, may be even to the point that you recognise my symptoms & can empathise with the joys of being disabled & living with a cancer diagnosis.
The Musings of Spu 