#Scanxiety

“My consultant who helps me to manage my disability said that at first, it would be hard whenever I had a new pain, but in time, I’d get to understand again whether the source was my disability or whether it needed investigating for cancer recurrence.  I guess I’m not far enough into my years of living with a cancer diagnosis yet for the nuances to become apparent.”

Alt Text: An image on a black background.  Embroidered flowers in white, peach, pink, yellow & orange are arranged to form the shape resembling a heartbeat on a hospital monitor.  Small pink ribbons to symbolise Breast Cancer Awareness, pink dots and pink stars surround the flowers.  Embroidered along the heartbeat shape in white capital letters are the words ‘Healing is not linear.’

#Scanxiety

You’d think that the ideas for my September and October blogs would have come easily to me.  Early September marked one year since I finished radiotherapy.  October is ‘Breast Cancer Awareness Month’ & I could have written about all the wonderful ways in which ‘Breast Cancer Now’ & ‘Maggie’s’ continue to support me. 

The charity that I founded, ‘Attitude is Everything’, celebrated its 21st Anniversary in Central London which was a beautiful event.  I’ve started to attend more ‘in person’ meetings & celebrations.  I’ve made another film with Grayson’s Art Club to prepare for the Series 2 exhibition to open in early December, in Bristol. I continue with my artwork, I’ve started a ‘Writing for Wellbeing’ class & last week, I returned to the pool.  With a gym referral from the GP, I’ve started ‘swim aerobics’ which has really helped with relieving pain & clearing my mind.  I’ve been to a few more gigs, which is my favourite thing to do, & I’ve been seeing more of my friends. 

Yet I’ve struggled to put words on paper for quite a few weeks.

I’m suffering from ‘Scanxiety’.  I first learnt the term ‘Scanxiety’ from my new cancer connections on Twitter.  It’s definitely a ‘thing.’

Since I had an infusion to protect my bones in mid-July, I’ve felt increasingly unwell.  The trouble is, I don’t know whether these are side effects from new medication, pain caused by my impairment, or something ‘more serious’, namely, Secondary Breast Cancer.

I try to be well-read & informed as I can be on Breast Cancer, including Secondary symptoms.  I try to be as rational as I can about living with a cancer diagnosis.  My predictor score is very low when it comes to ‘distant cancer’ appearing (‘distant’ means incurable) & I was diagnosed at an early stage.  But I’m under no illusions.  Cancer was found in one of my lymph nodes, my Lumpectomy was delayed for 4 months because of the pandemic & from March to July 2020, my original tumour shrunk but another one grew by the side of it.  Now I’m on a 10-year treatment plan instead of 5.  I have monthly Zoladex injections because the oncologist feels that recurrent breast cancer could be quite a high possibility for me.

The symptoms that I have, well they could be absolutely nothing to worry about, not linked in any way at all to cancer, but they could equally be serious signs & I just want to know what’s going on.  I took the decision to act as soon as I could.  I had to put any guilt out of my mind that I might be overreacting or that I might be time-wasting.  I choose to prioritise my mental wellbeing because it was the ‘not knowing’ that was actually wrecking my head. 

It’s a good job that I’m used to fighting for my life & that I know my way around the NHS.  The Breast Cancer Nurse & Oncology Teams at the hospital appeared completely overwhelmed & didn’t seem interested in reviewing me in clinic or on the telephone. In fact, I would go as far as to say that they were dismissive.  It was ‘Maggie’s’ who urged me to book appointments with my GP and my lung consultant.

I can see why the hospital team weren’t overly concerned because my notes detail that I had a low-risk primary cancer, but their reaction left me feeling that I was bothering them for no reason & I’d never been made to feel like this before.  I’m sure most of the public now see the evidence that newly diagnosed patients & only the most serious cases are being prioritised. This is because the NHS isn’t respected or appropriately funded to enable it to deal with both the impact of the pandemic & life-threatening illnesses, like cancer, which never go away.  But where does that leave people like me?

However, both my GP & my Lung Consultant at Brompton Hospital took my concerns very seriously.  Between them, they organised chest x-rays, a brain MRI, bloods & ultrasounds.  I’m very relieved that absolutely everything so far has come back cancer-free. But I still have to undergo an ultrasound and an endoscopy, with a referral to a gastroenterologist.  One of the charming symptoms is that I’m vomiting nearly every day which is, frankly, soul-destroying.  And the other revolting symptoms haven’t gone away either, so I still need to find out what’s causing them.  The GP and my Lung Consultant have now reported back to my Oncologist, but she still thinks that ‘something else’ other than cancer & side effects from medication is causing me to feel unwell.  Fair enough, I’m not going to dispute this as long as the tests & scans are coming back clear of cancer, & obviously I respect her expertise on the medication, but it doesn’t mean that I’m not suffering.  Plus, I’m not your ‘average’ human being!  I react in all sorts of bizarre ways to medication!

The hardest thing for me to work out now, is what pain & symptoms are caused by my impairment, & what could possibly be ‘something else.’  I thought I knew my body really well; I did know my body very well previously.  But now my confidence is shattered because the breast lump was picked up by a routine mammogram.  I didn’t even feel the lump, it only became obvious to me once the nurse placed my hand where it was.  I couldn’t believe how I’d missed it!  Evidently, I’d stopped checking my breasts; I was ‘too busy.’  Now, I get my boyfriend to check them because I don’t trust my own judgement. 

My body feels completely different now.  I have more paralysis on the right side of my upper body due to the cancer surgery & as a result, my right side, previously my strongest side, is much weaker.  I have new, acute pain down my right side & it’s different to the constant nerve pain caused by sciatica going down the left-hand side of my frame (which I’ve always had because of my impairment).  Now I have sharp pain on top of chronic, neuropathic pain, which is debilitating.  I find driving, getting out of bed in the morning and other simple, everyday tasks more challenging, & this is affecting my independence.  I don’t like this at all. 

My Consultant at Chelsea and Westminster Hospital who helps me to manage my disability gave me some good advice at the beginning of treatment.  He said that at first, it would be hard whenever I had a new pain, but in time, I’d get to understand again whether the source was my disability or whether it needed investigating for cancer recurrence.  I guess I’m not far enough into my years of living with a cancer diagnosis yet for the nuances to become apparent.

But it’s frustrating when I can’t answer my GP or other health professionals when they ask; “Have you had problems with your neck before?” (My answer, “I have, but it doesn’t feel like muscular tension, it’s been going on for longer than it usually does & this bit here feels lumpy.  Can you feel a lump there?”) “Why do you think the pain in your ribs is different this time?” (My answer, “Because it’s very localised to one area & it’s a really sharp pain, does that make sense Dr…Can you see anything there?”)

Inevitably, my ‘PMA’ (‘Positive Mental Attitude’) has dipped. 

I don’t think I ever appreciated that this cancer ‘thing’ would be ongoing.  It’s dawning on me that it’ll be a spectre that’s lurking around for the rest of my life.  The trick now is not to let it dominate my every day. 

This is a work in progress.