#TriggerWarning: This blog contains details about medical procedures & emotions before, & after cancer scan results.

Alt Text: A pen & ink painting of shapes that resemble waves at sea.  The waves are outlined in black & filled in pink.  There are random spaces that have been left white to represent glimmers of hope.

In early July, I had my first proper scare.  I found a new lump in my breast. 

Actually, my partner found the lump because he helps me to check each month.  I’ve lost all confidence in my ability to judge what’s different in my body after my Breast Cancer was picked up in a routine mammogram.

We both checked a few times over the course of two weeks.  The lump stayed.  It was definitely a lump.  It was near to the operation site.  I knew I had to act fast.  No matter the fear (cancer is all about not wanting the test results but wanting the test results at the same time), I knew that I had to get the lump checked out ASAP.

Although my GP Practice is very supportive, I didn’t bother to go through them first. I was going to the hospital chemo unit for my bone infusion in mid-July.  I decided that to save time, I’d pop along to the Breast Cancer Unit after I’d had my blood and COVID tests.  At bloods, I happened to bump into my Breast Cancer nurse & I told her about the lump.  She urged me to ring the nurses’ line so they could book me an appointment.  And of course, as always, she reassured me, explaining that lumps can appear for all sorts of reasons.  But she also stressed that I mustn’t delay in getting it checked. 

Despite her advice to ring, I went around to the Breast Unit anyway & to be honest, I was in a bit of a blur.  I thought that a nurse might be able to check it there & then & I’d have an answer.  The receptionist was very kind but said no, I actually needed to be seen by a surgeon.  Of course I did.  I felt a bit silly thinking that a nurse could give me a diagnosis there & then & after a ‘feel.’  The receptionist took my number so that a nurse could call me back.  I went round to the Maggie’s Centre for a cup of tea & a chat.  One of the kind staff there said that I shouldn’t delay getting it checked & that I’d done the right thing to speak up.

Two days later, I had my bone infusion as planned.  Later that day, one of the Breast Cancer nurses rang me & was again, very supportive & reassuring, but after listening to what I’d found, she said that I needed to see a surgeon.  She said that my one had left, but I’d still be in good hands.  Within two minutes of our phone call ending, I had an appointment for a week later.  I was amazed at the speed in which I was to be seen.  But I was very, very frightened.

Whilst waiting for the appointment, I saw my GP for my monthly Zoladex injection.  He said I’d done exactly the right thing in ringing the Breast Cancer Services.  He was also reassuring, saying that I’d had several tests over the past year & he felt confident that I’d be ok, but that I still needed to be checked (there’s a theme here).

And then the guilt came.  It’s true that I’d had lot of tests & scans over the past year.  All, thankfully, showed NED (No Evidence of Disease).  Most of the side effects that I’m experiencing are due to my body getting used to the medication but confusingly, they also look like the signs of secondary (or metastatic) Breast Cancer.  I still can’t tell the difference between what’s my ‘usual’ chronic pain from my existing impairment, or what are new symptoms.  My GP has always erred on the side of caution; always agreeing to further scans & checks.  This is because a small amount of cancer was found in one lymph node, plus I had waited an additional four months for my lumpectomy because of the pandemic.  The original breast lump had shrunk whilst I was on tamoxifen, but another small one had grown by its side.

I felt guilty because I didn’t want to waste anyone’s time, or NHS resources.  But then I realised that no one minds, they just want to help you & they aren’t judging you.  And my GP also said that it was important for me to have clarity for my own mental health.  I felt really ‘heard’ when he said that.  He recognises that my mental health has taken a real knocking since diagnosis.

Many people who live with a cancer diagnosis speak of #Scanxiety – I’ve previously covered this in my blog.  Yet I couldn’t let my mental health spiral again.  I’d been happier in the last few months & feeling quite good about my life.  So, I focused very hard on convincing myself of two things – that the lump would be absolutely nothing & that there was no point catastrophising until I knew exactly what it was.  Impossible as it sounds, I did largely manage to push negative feelings away, but it took a huge amount of mental energy. 

As I’ve written in previous blogs, the cancer treatment is having a drastic effect upon my mobility, & I couldn’t bear to think that I was going through so much treatment & then for it not to work.  I was frightened about potentially having more powerful treatment & that chemo would most certainly drastically affect my long-term quality of life – I already have very poor circulation, I have osteoporosis, I’m at risk of blood clots & my lungs are restricted.  I remember what my sister had said about chemo – that she wasn’t disabled at all until she had it, & if I could avoid it because there might be only a 6% difference to the predicted outcome, then I should. My sister now has COPD (Chronic Obstructive Pulmonary Disorder), has injections to ease the chronic pain in her bones & is currently receiving treatment for a blood clot.

The day of the appointment came & it was at a different hospital to the one that I usually attend for cancer check-ups with oncology.  Apparently, a few services & departments had been moved around post-COVID in order for the Hospital Trust to cope with the demand of new cancer patients, alongside those needing treatment but caught up in the ‘backlog’ caused by COVID.  My Trust now has a “Cancer First Stop” department – I guess it’s like a triage system.  I was nervous.  I find new medical teams very daunting. 

To cut a very long story short, I’m absolutely ok.

First, I saw a new Breast surgeon & she gave me a thorough physical examination.  She explained that I had a lot of scar tissue, & even though she couldn’t feel anything that alarmed her, she still needed to send me for further tests that day.  She also marked up the area that she wanted the radiographer to check.  That freaked me out a bit because it reminded me of my pre-surgery.  Then she sent me off to the Breast Imaging Department but with lots of words of reassurance which I found comforting.  I’d had mammograms in this department before, so that made me feel a little easier, but my heart was beating very fast & I was furiously blinking away tears. 

When I got to the Imaging Department, a kind colleague of my NHS support person, Margaret, arrived to help, & we went into the ultrasound together.  As I’d only had a mammogram in February & it was clear of disease then, the mammogram part could be skipped.  The radiography team were really supportive.  After two minutes in ultrasound, they had located the lump & they were able to tell me what was going on – they were able to clearly see the cause of the lump – a small amount of fluid.  A completely normal occurrence two years post-surgery.  It made total sense to me that fluid was still left.  I had my breast drained twice after surgery (remember “Alien Boob!” LOL!) 

Then the team checked my armpit as this was very sore, but again, thank God, everything was clear.  I didn’t need a biopsy (& that meant no needle, hurrah!)

I must have said “thank you” a million times over – at least, that’s all my partner was able to hear me saying in the examination room.  I think a lot of the relief came from the fact that it was actually “something” that we had both felt, & not like the other tests & scans where there wasn’t “anything” found.  This might sound a bit strange, but it made me feel like I wasn’t wasting the NHS’ time. 

Then I jumped into a taxi & went straight home.  I cheered in the cab & the driver asked me if I was celebrating something.  “Good news!” I replied without going into detail.  For a few hours afterwards, I couldn’t get over the fact that it was going to be ok.  I was astounded & very, very relieved.

I hadn’t told anyone except my sister & one other close friend what I was going through.  Again, to manage my mental health, & remembering how hard it can be to manage other people’s emotions & reactions, I decided that it wasn’t worth worrying people.  So, I did a few post-result texts to family & close friends, along the lines of, “well, I’ve had a bit of a scare, but I didn’t want to worry you unnecessarily, so I didn’t say anything, & that was right thing to do because I’m absolutely fine.”  I think there was shock because my social media shows me doing stuff & getting on with life, but that’s exactly how I want it to be.

But the next few days I crashed.  I don’t know what I was expecting, really.  I thought I’d be deliriously happy without a care in the world.  I thought I’d be organising a party.  But I just felt really flat & empty.  Like an anti-climax.  I put it down to being mentally exhausted.

But ‘The Scare’ is over & it’s business as usual.

P.S. Remember, anything that doesn’t feel right, a lump or something else, & you feel uneasy, don’t let fear or inertia prevent you from getting checked out.  Please, please, always go.  Don’t dismiss your pain or malaise – or let anyone else dismiss it – including medical professionals.  Be persistent.  Get someone else to advocate for you if you need to.

My partner said several times over that he felt bad about finding the lump & potentially throwing my life into turmoil once again.  I assured him that he’d done absolutely the right thing because he could have saved my life, or he could be giving me a better chance of longer survival through early detection.

#TriggerWarning for those with needle phobias.

With my lifestyle, you’d be forgiven for thinking the obvious from the blog title, but I’m referring to a wholly different type of acid & not a pleasurable experience!

Me photographed at 6 West, Charing Cross Hospital, London, 6th July 2022.

Alt Text: A white woman sits in a large red, faux-leather hospital chair.  She has long brown/blond hair & she wears red/brown glasses, a white surgical mask & a black t-shirt that says ‘Rebellious Hope’ in gold capital letters across it.  Her left hand & forearm rest on a white pillow.  In the back of her left hand is a cannula which is connected to a plastic drip wire.  On her right wrist is a white hospital tag.

Let me start by saying right here & now that I’ve been in & around the music industry for a long time, but I’ve never taken any illegal drugs.  Having to take medication in pill form from such a young age means that psychologically, it’s genuinely inconceivable for me to believe that I could have a magical, transforming experience by popping a pill; whenever I take pills, it’s always because something really bad has happened to me.

It turns out that the regular medication that I take (Letrozole (orally) & Zoladex (monthly injection into my stomach) – both are used to treat certain types of breast cancer such as hormone-receptor-positive breast cancer) might be really good at preventing cancer recurrence, but they’re absolutely s**t for my existing impairment.  Oh joy!  I already have osteoporosis due to being disabled & being a wheelchair user for over 25 years (I think it’s 25 years, I forget because becoming a wheelchair user was a gradual, ethereal process over a couple of years & not one that I regret in the slightest).  Now I’m on a treatment of an infusion of Alendronic Acid (a Bisphosphonate) to protect my bones from decaying as much as possible.  I have this every six months & it takes 15 minutes to go in, including the saline wash afterwards, but the infusion creates two weeks of havoc afterwards & some of the side effects don’t disappear until it’s time for the next one.  Even deeper joy!

At first, I took Alendronic Acid in tablet form.  This involved timing the tablet carefully before food every week & then having to sit up straight for at least 30 minutes afterwards to let the medication ‘do its thing.’  Unfortunately, the tablet form wasn’t really strong enough to protect me, so about 18 months after my surgery (which took place in July 2020), I started on the infusions.  At the moment, I’m currently booked for this treatment until November 2023, but cancer being the unpredictable beast that it is, who knows for sure!

Before having an infusion, I had to have a dental check up because this treatment can cause serious damage to jawbone & teeth; it’s called osteonecrosis of the jaw but thankfully this is a rare side effect.  I passed my dental check-up but with a warning from my dentist to keep up the 6-monthly visits to her which I have done ever since.

I’ve had three infusions now.  At the first one, one of the seniors, Paul, in the Chemo Unit told me about all the possible side effects.  He also talked me through how he was going to deal with my needle phobia.  I was banking on being able to put Emla (numbing cream) on the back of my hand, but Paul told me how the infusion had to be given through a little tube that would be inserted into my vein, & the numbing cream would restrict the opening of the vein.  I felt sick because the worst part of my phobia is when I have to have needles inserted into the back of my hand.  And my veins tend to be hard to find due to their deepness – I have Raynaud’s Syndrome. 

He went off to prepare everything.

By the time he called me to come forward for my infusion, I was shaking.  But two simple, but effective, ‘tricks’ changed the situation for me & made me feel less apprehensive.  The first was that a lovely lady called Margaret (I think I’ve spoken about her before in my blog) was accompanying me.  She’s a hospital staff member, responsible for making sure that patients with learning disabilities are safe & comfortable, but she was assigned to me because of my needle phobia.  She’s absolutely fantastic because we have a good laugh & a catch up whenever we see each other, & this is a very good distraction technique from the procedures.  She was the last person I spoke to in the Operating Theatre before I went under the GA (general anaesthetic) & it was extremely comforting.  Everyone needs a ‘Margaret’ by their side in hospital.

The second trick was that Paul immersed my hand in warm water for about 10 – 15 minutes to open up my veins.  Why had no one thought to do this before?!!!  It was a game-changer for me.  He was very gentle & I honestly wasn’t aware of when the cannula & its little tube went in.  The Alendronic Acid doesn’t really feel of anything as it goes in.  Perhaps for the first one I felt a bit of a sensation, but I’ve just had a third infusion & I didn’t feel anything except for a bit of discomfort in the back of my hand.  The saline wash is a bit cold, but on the third time, I didn’t feel any coldness.

I was honestly expecting a lot of stinging & I remember asking Paul several times if the infusion would hurt.  This fear is borne out of having many intravenous antibiotics due to feet infections & kidney problems.  One horrendous time about 20 years ago when my veins weren’t taking a drip anymore, a nurse decided to inject me at speed into my forearm with antibiotics instead.  It burnt inside my veins so much but my howling was met with “hurry on up back to London where you can be treated there!” (I had been taken as an emergency from a major music festival site in the south-west of England to a main regional hospital where I stayed for a week with no clothes or money, so the patients had a whip round to help me out!)  Charming.  I love a positive bedside manner!

My needle phobia started when I was a toddler.  I remember being in hospital (Tadworth) when I was about three; I was sitting on a nurse’s lap & she was feeding me.  Another nurse came along & she asked me to stick out my thumb, which I duly did, only for her to shove a huge needle into it.  It really hurt & I bawled my eyes out because I was so shocked.  And it bled as well, which was horrible as I was eating at the time.  I really hope that no one does that to kids these days.

Anyhow, back to the here & now.  After the first infusion I went home & became slowly sleepier over the course of the afternoon & evening.  Paul had warned me to expect flu-like symptoms, but nothing prepared me for the searing pain in my bones, joints & muscles which woke me up the following morning.  My teeth hurt (even my false one!), my jaw ached (I have existing a-typical facial pain), all the areas where I’d had surgery over the years & all the sites where I’d had vaccines & other injections were throbbing.  And I was slurring my words.  Desperately trying to keep calm in an online work meeting that afternoon, I had to confess that I hadn’t had a couple of gins at lunchtime, but this was a side effect of some new treatment that I was having.  Now I take two weeks off when I have the infusion.  It’s impossible to work through the side effects. 

The bone pain in my forearms & lower calves was horrendous.  I believe that I can tolerate a lot of pain because of the chronic, long-term pain that my impairment causes, but god, this pain was like someone had taken hold of my forearm & was trying to snap it in two.  Feeling sharp pain in my shins & foot in my left leg was a revelation because I’m paralysed here & I don’t normally feel much of anything.  With this level of pain, it’s hard for me to understand exactly how this treatment is meant to be protecting my bones because it honestly feels like the Alendronic Acid is breaking them down, bone by bone.

I probably should be taking a short-term dose of morphine for this level of pain, but anything from tramadol, to pregabalin, to gabapentin, to buprenorphine patches just really stresses both my mind & body out, so I just regularly top up with some strong codeine & I also use a small regular dose of amitriptyline for neuropathic pain for two weeks.  It isn’t great I know, but you have to find what works for you personally & try not to let others belittle your pain if you aren’t taking anything stronger.  And if you need something stronger after these infusions, I encourage you to ask for it because I don’t believe anyone should suffer in indescribable pain.

On my second treatment, I asked one of the nurses if the side effects would improve as my body became used to the infusions.  She said “no” & looked at me with kind eyes.  I’ve just got to suck it up, then.

I know that exercise is a terrible cliché that medics often use to beat people over the head with, & exercise is hard to do when you’re disabled (don’t @ me with your Paralympians, they’re elite athletes!) but regular exercise really does help me.  More than ever before, my bones feel so stiff & heavy.  I think I’ve mentioned in previous blogs that I’m having issues with my right ankle & at times, I can barely stand to transfer, but after each infusion, I have issues bending my thumbs & fingers & I struggle to fully grip things; I have severe pain whenever I flex my wrists & elbows.  But I’ve found that swimming really opens up my body.  I really look forward to my weekly swim now.  I struggle to do yoga just after the infusion, but in a week or two, I’m usually back to my regular class.  I think that gym-work is tough, so I normally give that a longer pause before returning to a regular routine.  I have a little set of 1kg weights at home, but I don’t use them for a month or so post-Alendronic Acid.

Post-third Alendronic Acid infusion & today, post-Zoladex injection, I’m trying to stay cool in the 30 degrees centigrade of West London.  I’m well out of the sun & typing away at my laptop in the coolest past of the flat, the lounge.  Extremes of very cold & very hot weather are equally hard to deal with during treatment, so I just do a little bit of this & a little bit of that, until I feel like I can do more.

Just putting one wheel in front of the other & slowly moving forward, that’s the best way to do it.

P.S. Paul from Chemo Unit, if you’re reading this, I’m missing you, I hope it’s all going well in your new department!

Me pictured with Margaret from Imperial Hospitals Trust, at my third Alendronic Acid infusion, 6 West, Charing Cross Hospital, London.

Alt Text: Two white woman wearing surgical masks sit in a hospital bay.  One of the women is hooked up to a drip via a cannula in the back of her left hand.

Part of returning to life ‘After B.C.’ (Breast Cancer) is going on holiday outside of the UK.

Alt Text: A selfie of a white man & woman, taken at an intersection of the road with a statue in the background (it’s Bastille, Paris).  The man is wearing a grey, flat cap, tortoise-shell rimmed glasses, a blue denim jacket & a blue/grey t-shirt.  He is smiling.  The woman has long, curly brown/blond hair & she is wearing brown/pink rimmed, round glasses, a white mask & a metallic pink rain jacket. 

Going on holiday can be a major undertaking as a wheelchair user, especially overseas, but I wondered how complicated it would be post-COVID (i.e., extra checks for vaccinations, etc.), post-Brexit (my partner is French & has E.U. Settled Status) & post-surgery/radiotherapy.  But after two years of watching how countries were slowly opening their borders & getting used to my new diagnosis, I decided that the best way to find out was to actually go on a holiday outside of the UK.

I started with the easy option.  All of my partner’s family live in, or around, Paris & we’ve frequently travelled by Eurostar.  As we’d been separated from them for a couple of years, we were excited to be able to see them.

It was too early into diagnosis for me to comfortably fly anywhere.  I’ve got many personal stories of being left stranded on planes, nearly missing planes because assistance arrived late, my wheelchair being broken or lost, & inappropriate questioning &/or comments about my impairment by airport staff &/or cabin crew.  And all of this happened way before COVID-19 temporarily shut down the air industry.  I couldn’t face being manhandled by staff from wheelchair to aisle transfer chair to plane seat, & vice versa, because of the pain levels that I’m currently experiencing due to medication.

In contrast, I love travelling by train & if I can choose this option over flying, I will every time.  Plus, it’s more environmentally friendly.  Of course, the train isn’t without its problems, such as luggage blocking the wheelchair space, the accessible toilet being out of order, or being left on the train or missing the train because ramp assistance hasn’t been provided.  But I’ve always had a great experience on Eurostar, including as a frequent lone traveller.

I always book in person at St Pancras station (London) rather than over the telephone or online because I prefer the face-to-face communication when I’m trying to explain my access requirements.  Booking was easy & not much of the booking assistance process had changed in the past years when I hadn’t been able to travel to Paris.  The agent showed us on his phone how to download the NHS COVID-Pass App which was the only unfamiliar thing that we had to do.  Even my partner’s E.U. Settled Status was straightforward when booking.  The only minor blip came when I got an email to say that my train had been cancelled & new tickets had been issued to via online booking which had been set up for me.  After faffing around with that for a while, I saw that our tickets were exactly the same as before – a relief because I can’t travel without being allocated the designated wheelchair space.

Travel out to Paris was hectic, but it did go smoothly, considering the situation we had found ourselves in.  When we arrived at St Pancras, I’d never seen so many people queuing to get through security; the queue was so long that it was coming out of the station.  Luckily, travellers needing assistance can queue-jump but when we reached the assistance area, there were more people than I’d ever seen waiting for support.  It turned out that we’d booked to travel on the same day as the 30^th Anniversary of Disneyland Paris opening.  And here was I, thinking I was clever for booking a holiday during school term-time!  However, there were many Eurostar personnel on hand to help, so we managed to get through all checks very quickly.  The only long wait was to board the train; our train was delayed as it was taking longer to on-board all the families for the Disneyland train.  Yet our Eurostar staff member stayed with us on the platform until the train doors opened & we were handed over to the train staff.  Being abandoned for hours without assistance at airports & train stations was a big reason for me to stop travelling on my own. 

The delay in getting on the train was the first time on the journey that I started to get fatigued.  Due to my impairment, I move around frequently in my wheelchair, but now because of the Breast Cancer surgery & the side effects of treatment, I find sitting for extended periods without stretching out my arms & legs, really painful.  When it came to pushing myself up the ramp, I couldn’t do it; I needed extensive help but once onto the train & into the wheelchair space, I could stretch my legs out & have a sleep.

The trains have been modified since I last travelled & they’re more like UK trains now – a bit less luxurious – I have to be honest – but actually I had more space to move around & the route to the accessible toilet was much clearer.  It seemed to me as if there were a couple more wheelchair spaces (always in the Business Class) per train, but I couldn’t be entirely sure.

I was also relieved that we still got a meal on the train (& very often the meal is very nice).  The Eurostar train staff are always really helpful & check that you’re ok – I do appreciate this.  I can’t travel alone in standard carriages on UK trains because I haven’t got any means by which to get to the restaurant carriage.  I even if I could get there, that wouldn’t be an option for me now; currently I don’t appear to have the strength or dexterity to negotiate tight spaces & I often drop things that I’m carrying because the nerves in my hands are messed up.  That loss of grip in my hands & my balance being even poorer ‘After B.C.’, made going to the loo almost impossible.  I don’t really know how I didn’t fall to the floor when I was transferring, or even off the toilet itself mid-wee (lol!).  I was sweating when I came out of the loo due to all the energy that I’d used up just to do this simple task! 

Post-cancer diagnosis, I have stronger anti-sickness tablets & these were a game-changer for me during the journey.  Usually, I have to face the direction that I’m travelling in (& even then, it’s no guarantee that I won’t be sick!) but for the first time, I was completely fine travelling backwards.

Once we reached our destination, Gare du Nord, Paris, the staff were already there with the ramp on the platform (as they should be on every journey, anywhere in the world!) & a staff member, recognising that I was tired, helpfully pushed me to the taxi rank (a little fast & a little close to the platform edge for my liking, but he was determined to whizz me through the crowds, lol).  At Gare du Nord, disabled people go to the front of the taxi queue, but it’s always chaos as the taxis come in & staff literally hustle you into one.  It really is like that, being hustled!  You’re swept along with staff, taxi drivers & confused passengers with a lot of raised voices & wild arm gestures.  I’d so missed this!

My partner & I had started speaking in French as soon as the train crossed the border.  Although I have a degree in languages & my conversational French isn’t too bad, I was worried about how much my menopausal brain would screw up & I’d be coming out with some random, nonsensical words.  There were instances of this across our stay, mainly in the evenings as I experience a lot of fatigue then, but on the whole, I surprised myself at how much I could remember.

Like my partner, I’m a creature of habit.  After thinking carefully about whether I now needed a bigger accessible ‘wet room’ (a bathroom without a step to the shower, without a bath) because of my reduced mobility, but we decided to book again with our favourite budget chain hotel in the 11^th area of Paris.  The accessible room & shower are probably too small for people who use larger wheelchairs & who may need a hoist, but I’m happy to report that the facilities were still manageable for me.  And it’s a home from home – most of the hotel staff were still there from our previous visits & we were incredibly happy to see each other again.

We spent five days in Paris.  It was the perfect amount – enough for us to see all the family & have some time by ourselves too.  I was anxious about how tired I would get each day, especially in the evenings as most nights, I’m lucky if I stay awake until 9pm.  I knew we’d be occupied all day & then I’d have to get ready to go out to eat in the evening, without much, if any, rest in between.  And understandably I didn’t want to miss out on anything or have to stay back in the hotel room.  I only had one “OMG I CAN’T DO THIS, I’M SO F****** TIRED!” one evening, but after a little rest, I was able to muster the strength to eat late at a nearby restaurant.  One morning I overslept, so my partner brought some breakfast back to our room, so I didn’t have to rush to get ready.  I found that exploring places & being out of my usual routine kept me energised – I mean, who doesn’t find Paris fascinating!  And of course, it was so lovely to spend quality time with family once again, & to meet my partner’s great-niece for the very first time (an adorable moment!)

Of course, Paris has its challenges because it’s an old city.  It’s also being refurbished & cleaned in preparation for the Olympics & Paralympics 2024 so there is a level of disruption.  There’s never been many wheelchair-accessible toilets (I’m hoping that this changes during the course of the refurbishment!) & I tend to plan sightseeing around where I know there is a toilet that I can use; they can be found at most of the large tourist attractions, art galleries & museums.  But if you like to go to places off the beaten track & fully adopt the Parisian café culture like I do, then finding suitable toilets is trickier, & the only option is to limit your fluid intake.  This really isn’t a great thing to do.

I got ‘caught short’ once at Parc de Bercy in the 12^th.  It’s pretty modern around there & has undergone a redevelopment similar to Granary Square (Kings Cross, London) but the lift to the cinema which houses the accessible toilets was broken so we had to wander around for a while in search of an appropriate toilet.  Out of the corner of my eye, I spotted a wheelchair symbol through the open doorway of a modern Japanese restaurant, so we stopped there for a drink & to use the facilities.  However, I guess some aspects of inaccessibility are universal because the accessible toilet was narrow & baby highchairs were being stored in there!

Public transport can be tricky in Paris – I’ve used the buses (there are wheelchair spaces on board), the taxis (but often my style of wheelchair is tricky to fit into the average Parisien taxi) & the RER (this is the mainline overground train system & the ramp access is managed by the train driver – so much more efficient) but mostly my partner & walk.  Paris has grand, wide pavements that don’t get too crowded & if you walk into central Paris by the river Seine, passing Notre Dame Cathedral, it’s so beautiful.

In case of any detailed explanations that I may have needed to give, or any emergencies, I’d practiced saying “I had breast cancer, radiotherapy, no I didn’t need chemo” etc in French but apart from the tiredness & having to scrutinise the menus for any food allergies, e.g., mushrooms (anyone else having that issue? My sister couldn’t keep down mushrooms either whilst in treatment!), thankfully I didn’t need any of those phrases.

I cried on the morning of our return.  I’d missed all the family & the beautiful city so much.  Anxieties started to creep back into my mind: “What if this is the last time that I visit Paris?”  Always so much to process & so many irrational thoughts to dispel.

The UK Customs guy at Eurostar Paris made it worse for me by barking: “Where do you live?” I so wanted to say “Paris, thank God!” but instead I replied: “London” to which he then asked why I’d been there.  “On holiday!” I replied even grumpier than ever.  In fact, I almost said: “So are you going to deny me a bloody holiday as well after all this Brexit shambles?”  He pursed his lips & let me through, thankfully, as I was already over-tired & in increasing levels of pain.  Note: My French partner got no questions whatsoever from either French or British customs – he was really worried about this.  We were also able to stay together at all times during all the security checks, despite having passports issued by different countries which was a huge relief to us both because I need a lot of help from my partner.

But my holiday ‘After B.C.’ had passed successfully, so now I know that I can holiday outside of the UK.  TICK!

A rare moment where my personal & professional gig-going life comes together in one blog!

Alt Text: A selfie of a white woman with long brown/blond hair, wearing red/brown rimmed glasses & a black puffa jacket with a fake fur hood.  She is outside a music venue.  Above her head is the venue’s sign which says: ‘The Mission 22^nd April.’

Let’s face it, I’ve been to a special hell & back in the past two years.  I’d like to think that I was pretty resilient, but I’ve been tested mentally & physically to the max, especially around monthly treatment times.  That’s why I’m not too harsh on myself when I get ‘off’ days, you know, those days when you have to stay home & rest.  Sometimes being disabled has felt that I’ve been clinging onto life, a bit like I was scrabbling around in the dirt with my hands, trying to get a grip so that I could pull myself up.  But once I’d had the cancer diagnosis, it got way harder – now it feels like I’m at the cliff face with my legs dangling as I struggle to put one foot in front of the other.  Legs dangling, hands scrabbling, not fun.

But now I’m having less difficult days.  Slowly but surely, I’m doing more which is quite positive.  However, something happened last month when I had to really challenge myself to see if still had my adventurous streak.

I’ve always been quite a daring person.  I like to surprise people.  I love doing the opposite of what others think I should do & I love proving them wrong.  I think quite a lot of disabled people are like me in that respect because the majority of us are sick of the public’s poor perception of us.  But what’s increasingly evident is that my adventurous streak always wanes when I have bouts of severe poor health.  This is because they’ve coincided with a change in mobility levels.

The aging process speeds up when you have an impairment.  I frequently joke that I was the only kid at school who ran the 100 meters slower each year until I was so useless at PE, that I swapped this lesson for extra music & art lessons.  I didn’t walk until I was about 4 – great timing as I was just about to start at the local primary school.  I first started using a wheelchair when I was about 25/26.  I don’t exactly remember because it was a slow transition & actually quite a relief because my feet were all busted up & I was in so much pain that I was blacking out.  But of course, being a wheelchair user isn’t easy because of all the physical obstacles (I mean, what d***head invented stairs?) & people’s negative feelings about being in a wheelchair. 

But when I first started using a wheelchair, one of my disabled neighbours lent me one of her lightweight wheelchairs to use & I found this so easy to push (unlike the heavy, ill-fitting chair that had been issued by the Wheelchair Service).  I’d also saved up & bought my first electric wheelchair.  I realised that I could have my independence once again.  The wheelchair epitomises freedom & don’t let non-disabled people tell you otherwise.  When I first went out alone in my electric wheelchair, shopping for clothes on Kensington High Street, my jaws ached when I got home.  This was because I hadn’t smiled that much in a very long time!

Anyhow, I digress, back to the challenging moment. 

I’m currently finding it hard to manage my increased pain levels.  My bones were rubbish in the first place & now they’re being further obliterated by the cancer treatment.  I have my alendronic acid infusion every 6 months, but this is like torture!  Seriously, it’s like my bones are actually breaking apart the next day, along with delightful side effects such as slurring my words, my teeth killing me & having flu-like symptoms.  This lasts a full two weeks.  So what with my creaky & painful bones, I’m struggling to use my right leg & foot at the moment, which is a serious barrier.  My right leg actually works (my left leg is paralysed from the knee down) & I rely on it for all my ‘stand & transfer’ manoeuvres (a transfer is when you’re moving from bed to wheelchair, from wheelchair to sofa, etc.).  It’s a complete nightmare & I have no idea how long this leg thing will last…forever…?

I had a run of gigs at Shepherds Bush Empire in one week.  I was looking forward to this because gig-going is my favourite thing to do.  In fact, I love it so much that it’s actually my job – honestly!  22 years ago, I founded a charity called ‘Attitude is Everything’ which connects disabled people with the music & live events industries to improve access together.  It does sound like a made-up job, doesn’t it?  I can assure you that it isn’t, I set it up because I didn’t want disabled people to struggle when they’re trying to enjoy music like I did in the olden days.

Shepherds Bush Empire is my nearest wheelchair accessible venue & it’s one that I can easily walk to & back from, well let’s say roll to & from, very easily in my electric chair.  Once I’m there, the security show me round to a side door & then I’m in.  Bingo!

At the end of my little run of gigs was The Mission weekender.  They’re always storming gigs & it’s a chance to break out the teenage Goth in me – I love, love, love Wayne Hussey & The Mission.  I always see them with my best friend from school.  Unfortunately, he wasn’t well for the first night, so I made the decision to go to the gig alone.  I weighed up the pros & cons for a little bit.  In reality, I didn’t have any cons because I’d made the journey to Shepherds Bush Empire & back home again after seeing the Mystery Jets gig on the Tuesday night with another friend.  I didn’t get too tired during this gig; I could physically cope inside the venue.  There were many other pros too; my trusty old chair could still do its top speed (you have to believe the thrill & power I get when hurtling down the pavement, thrusting the joystick & seeing the people scatter before me), The Mission fans are kind & friendly; many of them have been following the band for years so I knew I’d recognise a few faces.  The security at Shepherds Bush Empire are supportive & welcoming.  The only doubt in my mind was about my leg not working & how tired I might get during the gig.

But it felt right to strike out for freedom.  What I’d enjoyed about my walk back from the Mystery Jets was being alone at night, having that space to myself, breathing in the night air, the emptying of my mind.

Because I’m disabled, these moments of being alone are rare because I spend a lot of time with people who assist me (they’re lovely, I’m not moaning about this) & I live with my boyfriend (he’s lovely, we have a great laugh living together).  But everyone needs ‘me’ time.  As a child & teenager, I spent long periods amusing myself & as an adult, I still need  regular ‘time out’ from others. 

Going to see The Mission on my own would give me the chance to prove to myself that I could still rock up at a gig, enjoy my own company, possibly have some friendly banter with strangers, & then roll back home.

I’ve had many nights staggering home or taking in London at night from the back of a cab, feeling absolutely free, feeling like the Queen of this city, feeling like it belonged to me, following the Thames to get home, criss-crossing over the bridges.

So, I charged up my chair, got my Goth gear on, gave myself a big hairdo & off I went to The Mission gig. 

Once I got to the venue, I was greeted by many beautiful human beings dressed in black, all of my age & older, & very, very visibly excited to see the band.  I recognised a few faces from the Killing Joke gig which was a week or so before.  In fact, I was wearing my Killing Joke t-shirt from that same gig.  I exchanged some friendly words with a lady who I’d spotted giving out fliers there, & now she was at The Mission giving out fliers.  She also very helpfully told me that there were still tickets left for Gary Numan, so I saw him at Wembley just after The Mission, too!  Killing Joke, Gary Numan, The Mission – yeah right, so I’m THAT old but are you all still punking it up nearly every night like me?

I quickly checked with the box office to see if it was alright ‘health & safety-wise’ to be alone at the gig in my wheelchair.  “If you’re happy, then we’re happy, & we’ll help in any way we can,” was the reply from the lady at the box office which was mightily reassuring.  Then I found the security guard who let me in.  Once inside & one sharp handbrake turn to the left, I was in the viewing area.  The accessible toilet, the bar & the merch stall were all nearby – what more does a girl need?  Naturally, I went straight to the merch stall for my first lot of banter for the night – all about previous Mission gigs, new t-shirt designs, merch in general, etc.

The gig was amazing.  There was another disabled couple on the viewing platform who were absolutely lovely & someone else offered to get me a drink.  Others around asked me if I was ok.  A couple of security guys were keeping a close eye, but they weren’t at all intrusive (one of them had the ‘Radar Key’ which opens accessible toilets but I carry my own & when questioned by security, I pull out the Radar Key with the desire to shout, “ah-ha, Sir, but I have my own,” as if we’re in some kind of crazy duel.  Or I’ve got “I’ve got the key, I’ve got the secret…” running around in my brain – only ravers of a certain age will get this!)  The couple on the viewing platform absolutely went for it when the band came on & so did I.  I was singing my heart out; their energy & adrenaline gave me energy too.  It also meant that I was able to stop other people from clambering in front of me & over me – they couldn’t get anywhere near me because I was dancing in my big, fat, sturdy chair.  To get near me would have resulted in a clonk from one of my flailing arms or crashing into my beast of a chair & coming off worse.  Ha!  What a top night I was having!

Then all too soon it was over & I found myself on the pavement in the night air.  I hung around for a bit, still dazzled by the lights & music, breathing in the scene before me of deliriously happy Mission followers.  But knowing that I was going to experience it all over again tomorrow (with my best friend), the crowd was thinning out & my leg was starting to hurt now that I wasn’t distracted by the gig, I started to make my way home.

So, I’d got over that hurdle.  Going to local gigs on my own once again.  Thank God, I’m starting to really live, I owe that to myself if nothing else.

Alt text: A selfie of a white woman with long brown/blond hair.  She’s wearing red/brown rimmed glasses, a white mask with a black & white sequinned mask on top if it, a necklace of a small back wooden cross, a black t-shirt with a red & orange flame on it & a black velvet hoodie.  She is inside the venue which has red painted walls.

Alt text: A selfie of a white woman with long brown/blond hair, wearing red/brown rimmed glasses, large silver hoop earrings & a black puffa jacket.  Behind her are trees & a couple of low-rise tower blocks, with building cranes with red & white lights, reaching up into the sky.  This is one of her journeys’ home from Shepherds Bush Empire.

I’ve come to the conclusion that I’m not going to enjoy February & March like I used to.  Here I mark two years on from diagnosis & reflect on celebrating International Women’s Day as a disabled woman.

Alt text: A white lady with brown-blond long hair, dressed in a black puffa jacket with a fake fur hood, sitting in a wheelchair outside in the garden.  She has a pair of black-rimmed glasses perched on the top of her head. She is holding a mug of tea & she is smiling.

I’ve been absent from blog-writing in the month of March.  It’s fair to say that I’m probably not going to enjoy both February & March for the rest of my days.  Thursday 10^th March marked two years since I was diagnosed with ER+ Stage 1 breast cancer.  If that wasn’t mind-bending enough, February is the month of my annual mammogram (I received the all-clear, thank God) & I have my annual review of my lungs by Brompton Hospital (they’re working very well & don’t appear affected by the partial radiotherapy treatment or two bouts of COVID-19).  Mega #Scanxiety.  In March I had my telephone review with my Oncologist & I also met my new consultant who supports me to manage my existing impairment.  That’s quite a lot of nervousness to manage & new information to process.

Don’t get me wrong, things could be a lot, lot worse, but now the cancer treatment is taking a heavy toll on my already-weakened joints & bones.  Of course, I’m not going to give up the hormone therapies, but it’s not the treatment that one would choose to give to somebody with damaged bones, & who was already on the cusp of osteoporosis before cancer appeared.  I’d be lying if I said that I wasn’t daunted by what my mobility levels will be like in 10 years’ time when all this treatment finishes.  And true to form, I’ve internalised most of it & just pretended that it isn’t happening.  When I have tried to describe what I’m going through, members of support groups & my medic teams are all equally non-plussed about how to help me in the long-term because they haven’t come across many disabled people in my situation. 

The main issue at the moment is that my right leg, ankle & foot isn’t working properly & I’m in excruciating pain.  This is a disaster.  I rely on my right leg to transfer, to drive & to balance.  ‘Plantar fasciitis’ (google it, kids!) has been suggested.  A sharp increase in neuropathic pain is coupled with an increase in the nerve pain relief & a reduction in anti-depressants (yes, my mental health took a dip at Christmas).  Other regular pain relief doesn’t touch the sides.  I’ve been on morphine patches in the past for chronic pain caused by my disability & I don’t want to resort to patches again as I feel that they changed my personality for the worse.  These days I swim much more & do what yoga that I can – & this does bring some relief.

This is tough.  If I find any answers or even words of wisdom, you’ll find them written in my future blogs!  The only thing for sure, is that I need to continue my quest in finding disabled people who then receive a cancer diagnosis.  I mean, how the f*** are you coping?!

Within this tumultuous month is always International Women’s Day (Tuesday 8^th March).  Along with many other women across the globe, I celebrated it, just like I celebrate International Disabled People’s Day (3^rd December).  These days of celebration & reflection carry extra meaning now I’m a disabled woman living with a breast cancer diagnosis.

Of course, my gender, sexuality & sensuousness continue to be unrecognised because I’m disabled.

Here are two golden nuggets that demonstrate the general population’s ignorance:

I’ve gone into detail about this in a previous blog, but whilst discussing surgeries, one consultant (not one that I ever met or was involved in my care) suggested over the telephone that I just have a mastectomy instead of a straightforward lumpectomy (standard for my diagnosis / prognosis) because it would be “easier for me to cope with.”  I found this very demeaning because this medic didn’t recognise that I’m as vain as the next person, nor did they respect my needs or desires; they didn’t consider that I might be in any sort of relationship, or the emotional impact of potentially looking more disabled than I already am.  And it’s always the ultimate “does (he or they) she take sugar?” moment when someone makes a decision for you that doesn’t involve you in the process. 

In my twenties, I had a GP that was reluctant to refer me to a gynaecologist to discuss different contraception options because I was “obviously sexually inactive.”  This GP was so very, very wrong in their assumptions.  I persevered & once I did get referred to a consultant, they helped me to resolve many gynaecological issues that I had been suffering with in silence.  More importantly, they never made me feel less of the woman that I was.

Society is fond of putting people into little boxes & labelling them.  But like the sections in record shops that attempt to categorise music by genres, it’s complicated.  I’ve spoken to a lot of disabled women who also have other ‘protected characteristics’ & we all agree it’s a case of “which box do I tick today?”  But all of tick several boxes, me included.  Alongside ‘disabled’ & ‘woman’, I tick the boxes of ‘punk’, ‘goth’, ‘from a single family’, ‘working class’, ‘Essex’, but often it feels that I can’t be in several boxes at once.

Around about 2017 / 2018, the industry in which I work very kindly started to recognise me as an achieving woman in the sector.  I was thrilled about this & very appreciative of the award & accolades that I was given.  I’d been speaking on disability issues for years & this is the strongest part of me; I take such enormous pride in identifying myself as a Disabled Person.  Yet I’d never been asked to speak on women’s issues nor received any awards for a being a woman.  Then I found myself in a bizarre situation at one event where I was nominated for one such Woman’s Award, but the ceremony was being held in an inaccessible venue, so I couldn’t get in to receive it.  It’s like overnight, my disability & my access requirements had been forgotten.  That’s why I feel that I can’t be in several boxes at once.

The impact of society not recognising that I’m both disabled & a woman comes full circle.  If it’s felt that disabled woman aren’t going to be affected by common women’s health issues, then those services will never be offered to, or be accessible for, disabled women.  And if medics don’t treat disabled women for a number of common women’s issues, then they won’t have the knowledge of how to design an effective treatment plan for women who have a number of complex & underlying impairments.

And that, folks, is where I currently find myself.

Alt text: A white woman, dressed in black & wearing black-rimmed glasses, sitting in a wheelchair, is outside a hospital entrance.  There are several people walking in the background.  Above the entrance hang several, large heart-shaped garlands, made out of dried flowers in rainbow colours that symbolise the NHS (UK’s National Health Service).

What’s it like having a mammogram when you’re a wheelchair user? Not easy! Warning: some of the frank descriptions within this blog may cause embarrassment or be upsetting.

Alt text: Two lemons on a metal cooling stand.  One lemon is positioned straight ahead whilst the other is positioned side on.  

Two weeks ago, I went for my annual mammogram.  I’ve had many mammograms because I’ve been a patient at my local Breast Cancer Family History Clinic for years.  But since my breast cancer diagnosis, mammogram results carry far more weight.  Every cancer patient knows that they’re only as good as their last scan. 

I got the results of my scan mid-week & thankfully there’s no evidence of cancer.  This is my second all-clear since my surgery & radiotherapy so it looks like the treatment is working.

It’s difficult for me to have a mammogram because I’m disabled.  Over time, I’ve worked out a way of being scanned which involves short bursts of propping myself up on my feet.  However, this time around I was worried because I’m experiencing lots of sharp pain in my feet & ankles (probably increased neuropathic pain from the medication that I’m on, but I’m still going through the process with my consultant to determine this).  I’m experiencing excruciating pain on the bottom of my right foot, and yep, you’ve guessed it, this is the leg that isn’t affected by my impairment.  It’s the leg that I rely on to do all my transfers safely and to drive with.  I thought that the surgery & radiotherapy would seriously affect my right arm (it hasn’t) but who knew that it would affect my right leg?!  You can’t make this s**t up.  My faithful right leg didn’t let me down though & the mammogram passed without too much incident.

I can’t stay in my wheelchair to have my mammogram.  Although the technology of the scanner has improved over the years because the plates can go lower, this still isn’t low enough for me.  Therefore, I have to make some very precarious manoeuvres in order to get the scan done.

I bet most people wouldn’t even guess that disabled people often don’t get access to routine scans & tests that affect the general population. Sometimes it’s because GP’s & other medics have this weird notion that we won’t need them because somehow our existing disability makes us immune to cancer or other diseases.  Or it’s because the way that the test or scan is given is inaccessible & we’re not offered any alternative ways to have the test or scan.

I’ve experienced being blocked for routine tests before & it’s exhausting trying to push back against these attitudes.  It both scares & angers me that I could be denied routine tests & scans that are readily available for the non-disabled public without question.

Sadly, I also think that disabled people & their families can have a lack of awareness that common diseases can affect them too, or that they feel that they don’t have the power to challenge the ‘status quo.’

At one early mammogram, I nearly didn’t get past reception because as soon as the receptionist saw me wheeling in, she boldly exclaimed “You shouldn’t have been given an appointment today, we do people like you on Mondays because you take so long!”  People like me indeed.  I was as rude to her as she was to me.  I told her that I’d had mammograms in the past & that I’d worked out a way of safely having them which works for both me & the radiologist.  I rounded off my diatribe by informing her that I take up no more extra time than the average person because the radiologists were used to scanning me.  At that point, the radiologist rescued me before a full-on row broke out.  But joking apart, it’s these kinds of attitudes that can put the most resilient of disabled people off, let alone the humiliation of being spoken to in such an inappropriate way in front of others in a packed waiting room.

On the whole, radiologists are supportive.  Most of them have a mini freak-out when I enter the room in my chair, & I think that’s a normal human reaction.  I’ve found that if I tell them that I’ve had a lot of mammograms & I’m very used to what happens, it puts them at ease.  However, on rare occasions, I come across radiologists that don’t like the situation at all; I guess it might be because they think that I’m challenging their authority, or they might be trying to get through their patient list as quickly as possible – who knows the reasons why.  However, the radiologists that don’t listen to me are usually the ones that hurt me.  It’s silly really; it makes more work for them because the scan takes longer – I have to take more rest time during position changes to settle my pain.

I don’t like it when there are two staff members in the room.  I find that it makes communication more difficult because then I’ve got two people to reassure.  There’s also more of a likelihood that they’re going to talk over me which I find hard to manage. 

Whilst with a difficult mammogram the radiologist might put it down to a “one-off” experience & be able to move on quickly, in contrast, I’m left struggling with how I’m going to manage my emotions over what’s just happened & how I’m going to mentally prepare myself for the next scan. 

‘Same old’, as they say.

I didn’t know how hard having a mammogram was going to be until I first came face-to-face with the scanner & I had to do improvise on the spot.  But then like many disabled people, I’m used to improvising.

The method of being scanned that I’ve perfected goes something like this:

I lever myself out of my wheelchair & position one boob as best I can on the metal plate (& why is the plate always freezing cold!)  Then I put one arm around the side of the machine to hold on, & the other arm around the other side of it, but lower down so that my shoulder isn’t in the way of the plate.  The final positioning is bending my legs & balancing precariously with them apart, hoping that they don’t start to spasm, or even worse, give way beneath me & leave me dangling by one of my boobs!  I can barely hold this position, so I tell the radiologist to run round to her booth as quickly as she can to take the image.  After the image is taken, she comes running back to release me, & I collapse back into my chair, breathing heavily.  I drink lots of water in between. 

These crazy manoeuvres are repeated at least 3 times more times.  Quite frankly, I’m amazed that I’ve never been left hanging by one breast!

Two of the positions are particularly hard for me.  My sternum protrudes because of my scoliosis so scans on the right side (yep, the side where I had surgery!) literally leaves me gasping for breath.  The radiologist has to be quite skilled in knowing how far she can push the plate against my sternum in order to get a good image.  The other one difficult position is on the left where I have a bit of rib sticking out due to my displaced hip.  Often this part of the rib gets caught underneath the plate if I position myself incorrectly. 

My shoulders getting in the way is a real pain.  Some radiologists deal with this by pushing my shoulder down.  Unfortunately, by taking this approach, rather than letting me gently lower my shoulder into position, I can’t adjust my feet quickly enough & I find myself going off-balance.  It’s worse if it happens on the right-hand side because the metal plates pinch my right boob very hard.  This is very painful as I’m still sore here two years on from surgery.  It’s so frustrating when I know that it doesn’t have to be this hard to scan me, & it doesn’t necessarily have to hurt me, either.

I can understand that upon reading this, you might think that this is quite an ordeal to go through.  Well, yes, it is, but it’s so necessary.  Over a decade ago, an annual mammogram detected non-malignant cysts & two years ago, the annual mammogram detected a small cancerous lump.

I hope one day that the machines will be flexible enough to cope with a multitude of body shapes.  And there’ll be alternative & more comfortable ways of scanning disabled people.

Meanwhile, I hope that my right leg, or my ‘transfer’ leg as I call it, stays strong enough over the next 10 years to cope with keeping me in position for the mammogram, even if the entire process is a bit wobbly!

So, what advice would I give other disabled people about having a mammogram?  I wouldn’t recommend throwing yourself in at the deep end & dealing with the situation on the spot like I did.  I’d encourage you to talk it all through with a breast cancer nurse, a consultant & the radiologist so you can work out with them how you’re going to be scanned or if there are alternative ways in which you can get your breasts checked.  And if you’re ever blocked from getting a routine test or scan, ask for a different medic on the team to be assigned to your case (I know that isn’t easy) or get a 2^nd opinion.  If you feel strong enough, or if you’re foolhardy like me, then share what’s happening to you on social media, or in the cancer charities’ online forums.  People are generous with responding with their own experiences & with helpful advice.

Whatever happens, you have a right to these routine tests & scans, so please don’t give up.

Hello 2022 – it must be time for the 64 Million Artists’ Daily Challenge (again!)

Alt text: a piece of corrugated cardboard roughly cut into a square.  There are 4 images drawn in black felt tip pen connected by directional arrows – a DAB Radio, a vinyl album, a turntable and two gig tickets.

Last January, I signed up for a series of daily creative challenges with an arts organisation called 64 Million Artists – www.64millionartists.com I found them on Twitter & I haven’t looked back since. #TheJanuaryChallenge is a unique set of daily creative actions, designed to be easy & to be created from what you have ‘to hand.’  This year, there are 3 themes:

• We Are Human
• We Are Culture
• We Are Connected

You can either choose one theme to follow throughout the month, or you can choose the ‘Wildcard’ option like I did – then you get a different theme every day.  Each Friday, the three themes combine into one challenge.  The challenge ideas are set by different creative individuals around the UK & anyone can apply beforehand to set a challenge.  You’re invited to share your work using the hashtags #64MillionArtists & #TheJanuaryChallenge & also tagging @64M_Artists (Twitter)

2021’s January Challenge was quite an effort for me because I was just embarking upon my creative journey.  Additionally, I was still recovering from my cancer surgery & radiotherapy, but I also caught COVID on 10^th January, so I spent 10 days holed up in my bedroom, creating the daily challenges from what I had around me.  I believe that I triumphed with replicating the Himalayan Mountain range from my bedclothes & pillows, LOL!

In late December 2021, my phased return to work finished, so during weekdays, I’m fitting my daily challenges into my lunch hour. 

Similar to last January, I can’t do much in my birthday month because I’m in semi-isolation, as are most of my Capricorn friends.  We’re saving our birthday meet-ups for warmer times, so #TheJanuaryChallenge is a great way of making the time go faster & jump-starting my brain in 2022.

I also need to occupy my mind because I have a couple of preventative cancer treatments this month.  Alongside my regular monthly zoladex injection, I have my 6-monthly infusion to protect my bones in the Chemo Unit at Charing Cross Hospital, London.  There are more needles that I care to have during this month (I’m needle-phobic).  This is only my second infusion so I’m anxious about what to expect.  The side effects were horrendous for the first one – the infusion caused severe pain in my bones & gave me flu-like symptoms.  I’m being kind to myself this time around & I’ve taken a week off work to practice self-care.

As I’m now on the 17^th day of #TheJanuaryChallenge (time flies!), I’m sharing a mini-selection of what I’ve created – & why – in a random order:

Photo 1

Alt text: a selection of different sized & coloured badges laid out on a faux fur bedcover.

Theme – We Are Culture – Day 4 ‘Lost & Found’ – this was all about what you collect.  I collect badges.  The photo shows just a very small sample, selected at random from a much large collection.  They’re from charities & causes that I support, to bands I like, to slogans that ring true to me.

Photo 2

Alt text: a miniature green succulent plant in a white pot & a miniature white toy pony with a purple mane & tail are placed in front of an acrylic painting – a desert scene with mountains in the background & the sun high in the sky – in colours of pastels, oranges & browns.

Theme – We Are Human – Day 8 ‘Land Art’ – I chose objects from my room that lay 3m around me.  Luckily my boyfriend’s unfinished painting gave a backdrop to my fantasy desert land!

Photo 3

Alt text: a montage of 4 photos – top LH is a cut out recipe from ‘Elle’ magazine (a French edition); top RH is the accompanying photo for the recipe of little cakes decorated with chocolate icing & each has a single yellow ball on top; bottom LH is a photo of a poem written on a blackboard about creating a recipe for 2022 “A touch of positivity, plenty of good friends, an abundance of laughter, don’t skimp on the music!!!” & bottom RH is a recipe for Strawberry Whipped Cream Meringues printed out from the internet.

Combining the challenges of Days 5 & 6 here; the theme of We Are Culture – ‘Vision Board for 2022’ which was written on my kitchen blackboard, then followed by the theme of We Are Connected – ‘Kitchen Stories;’ when I shared my favourite recipe for meringues (a recipe which was made for me by one of my closest friends) with my boyfriend who, in turn, shared his favourite childhood recipe with me.  It was cut out from a French edition of ‘Elle’ magazine from many years ago – Barquettes de Marron.  He would cry if the yellow icing ball was missing from the top of the little cake.

Photo 4 (& cover photo)

Alt text: The image is also the cover photo for this blog – a piece of corrugated cardboard roughly cut into a square.  There are four images drawn in black felt tip pen connected by directional arrows – a DAB Radio, a vinyl album, a turntable and two gig tickets.

Theme – We Are Connected – Day 3 ‘Connected’ – this is what connected means to me; how the radio connects me to artists that I grow to love through their music & eventually I see them play live.

Photo 5

Alt text: a montage of two photos – top: a blue hyacinth in full flower stands on a white metal table, outside in the garden; bottom: white lined paper with a haiku (Japanese-style short poem) written in blue biro – “The hyacinth stands tall, Apollo’s love enduring, Heartbreak for Zephr.”

Theme – We Are Human – Day 16 ‘Flowers’ – “Hyacinth Haiku.”  The challenge was to describe flowers & what meaning they have to us.  I looked up the meaning of Hyacinth & discovered a story in Greek mythology of the love-triangle involving Apollo, Hyacinth & Zephr.  I created a poem about their struggle & loss.

Photo 6

Alt text: an abstract drawing of different swirly shapes connecting up. Made with different metallic inks.

Theme – We Are Culture Day 12 – ‘Abstract Drawing’ – The challenge was to draw / paint wherever our mind took us on the page.  I created the twists & turns & shiny bits from my mind…I drew the original shapes with my eyes closed & then filled in the shapes with metallic inks.

Photo 7

Alt text: a head shot self-portrait of a lady with long hair, looking down & smiling, wearing a jumper & a necklace.

This was the 1^st challenge in #TheJanuaryChallenge – ‘The One Line Self-Portrait’ – a self-portrait in one line created with a thin brush & in metallic copper ink.

Photo 8

Alt text: an A3 pad with words & letters in different sizes, fonts, colours & shapes, cut out from birthday cards & stuck onto the page.  The words tell the following story – “All hail the wonderful queen, who had the nicest birthday, ate two birthday meals, stuffed lots of cakes, wore five new outfits.  She celebrated for one month, woo hoo!  Then she needed a holiday!”

Theme – We Are Human – Day 13 – ‘Word Recycling’ – I collected words from my birthday cards & wrote a story about a queen who had a riotous birthday.  I think this is my favourite one & 64 Million Artists were very kind & featured it in their Instagram round-up of the day.

Photo 9

Alt text: a montage of two photos – top: my garden at dusk with white fairy lights around the garden, a white metallic table & chairs, & a brick shed in the foreground, green foliage against the brick walls in the background; bottom: a written piece in blue biro on A5 lined paper, words as follows – “My garden, tranquil, talks around the firepit, fairy lights sprinkle magic, end of work gin, amongst the passionfruit and fuchsia.”

Theme – We Are Culture – Day 2 “Why I Love…” – For me, it’s “Why I Love My Garden”.  My garden is the most important space that I have in my life, especially when the sun goes down.

“I still can’t believe that something as great as this came out of such a bad situation.  In March 2020, I was diagnosed with breast cancer, by February 2021 I’d had COVID-19 twice, but by December 2021, I was exhibiting a piece of art that I’d created in Bristol Museum and Art Gallery.  It’s the stuff of dreams and definitely one of my life-defining moments.”

Alt text: A photo taken in an art gallery.  A white lady with blue-rimmed glasses, long blond-brown hair, a black mask & a black-pink blouse, peers into a Perspex box that stands on a white plinth.  Inside the box are 7 different sized & coloured bottles & jars.  Each of them is labelled with the name of a family member & a pretend smell. 

The evening of Wednesday 1^st December 2021 will forever be one of my life-defining moments.  I was a guest of Grayson & Philippa Perry, attending the Private View for series 2 of ‘Grayson’s Art Club’ at Bristol Museum & Art Gallery.  Some months before, I had submitted my work to their Channel 4 show & to my astonishment, I was one of the 100+ artists selected to exhibit their work.  There were 17,000 submissions.  In an earlier blog, I described what it was like to be chosen & to appear in the 1st episode of series 2.  This blog describes what happened in the weeks leading up to the exhibition, what it was like for me to see my work for the first time in the gallery, & then my feelings about the whole concept of ‘Grayson’s Art Club.’

My conceptual art piece is called ‘The Smells of My Family.’  I made it because I couldn’t see my family during lockdown (me, my sister & my dad are all in the ‘Clinically Extremely Vulnerable’ Group).  It was painful to be separated from them when my life was in such turmoil, especially at Christmas when my sister & I also celebrate our birthdays.  I asked my family members what their favourite smells were and then I pretended to ‘bottle’ them up in different coloured & sized vessels.  Each bottle or jar was labelled with their family name and their favourite smell.  The joking point of the piece was that I had completely lost my smell after contracting COVID-19 for a second time.

I submitted ‘The Smells of My Family’ to ‘Grayson’s Art Club’ along with a little film explaining what it was & why I had made it.  In March 2021 I appeared on the programme & Grayson chose my piece.

I was too sick to work because I was so mentally & physically debilitated during treatment, but I was in lockdown with dark thoughts about cancer, fuelling my anxiety. I chose to do Art Therapy with my local ‘Maggie’s Centre’ online to help me process what was happening to me.  Or maybe art chose me because once I started, I couldn’t stop making it.  It burst out of me.  It must have been there all along, latent, waiting like a gene to be let out of the bottle (really, no pun intended!)

In January 2021, I signed up for ‘64 Million Artists’ #TheJanuaryChallenge & I was making a piece of artwork or writing creatively every day.  I liked it so much that I signed up for #TheWeeklyChallenge & now I’m creating pieces every week.

Immediately after the programme that I was in went out, I packed up my bottles & jars in tissue paper & placed them into a little wicker basket.  I was really worried about them getting broken as I have different people coming into the flat to assist me with everyday tasks.  To keep them safe, I got help to put the basket on the highest shelf in the living room.  It stayed there until I got a call a few months later to say that my artwork was being picked up – & would I be available for filming again?  My main thought at that point was relief that my kitchen had been finished by the council (I’d received a Disabled Facilities Grant to re-do the access as it was falling apart).  The kitchen would definitely be a suitable room to film in!

At the same time, I was filling in forms & outlining to the curator how my work was to be displayed (another ‘first’ for me) so I & others could access it (I’m a wheelchair user), but it still didn’t feel real that I was exhibiting.

Early one Autumn morning, a film crew arrived to film ‘The Smells of My Family’ being collected.  Together, we shot some film of me re-enacting wrapping up the bottles & jars in tissue paper & placing them into the wicker basket.  To accompany the visuals, we filmed some dialogue of me describing how I felt about being part of the exhibition.  Two guys arrived in a white van to drive the piece to Bristol.  My partner, Stephane, filmed the van driving away from my flat & me waving enthusiastically.  Everyone who came to the flat that morning was really nice, supportive & encouraging which is a characteristic of all the people working on this show. 

About a month later, I was invited by email to the private view.  I rushed to book wheelchair spaces on trains & an accessible room in a Bristol hotel.  Luckily, I found a hotel near to Bristol Temple Meads Station which suited my requirements & was also a 5-minute push from the station – important as I had to get an early train back to London the next morning for a hospital appointment (the story of my life, huh?!).  As booking confirmations popped into my email, the reality of the exhibition was dawning on me.

But I felt like an imposter, truth be told.  Stephane is the artist out of the two of us – he’s fine art trained & paints most days.  I’m just mucking around with stuff; capturing & then documenting the quirky ideas that float around in my brain.  I’m not an artist & I was worried about how my work would stand up against the other artists in the exhibition.  However, when I spoke to the Director of Swan Films about my fears, he simply replied; “Now Suzanne, everyone’s an artist.” 

The day of the exhibition came.  To distract from my nerves, I made a journal of the adventure.  I shot some short films & took some photos with my phone & posted them up on my social media accounts.  Stephane and I had a really nice late afternoon walk from the station to the hotel.  The area reminded me of Berlin because it was characterised by cyclists & walkers & shared spaces separated by walkways & mini bridges.  Living in London, I forget what it’s like to live in a city where everything is quite contained & Bristol isn’t an urban mass of sprawling junctions (although the one-way traffic system in central Bristol completely baffles me every time I visit!)   

Then all at once I was standing inside the grand hall of the Bristol Museum & Art Gallery, waiting for the speeches to start.  I found myself unable to talk.  I had all these plans to make a film about my artwork whilst standing next to it – it was all scripted out.  I was going to seek out the other artists to discuss their pieces with them.  All this went out of the window.  I was like a rabbit in headlights, staring wide-eyed & mesmerised by the expanse of space inside the museum.  If I hadn’t been sitting down in my wheelchair, my legs would have folded underneath me, pulling me to the ground.

The canapes & drinks were flowing like a proper private view.  But I stood shyly in the corner, hiding behind Stephane, giving off the vibe ‘please nobody talk to me!’ LOL!

I glanced into the entrance of the Museum Shop & I realised that there was a catalogue to accompany the exhibition.  That’s a really lovely thing to produce because alongside the artwork, it’s a permanent reminder for everyone that took part.  I got a catalogue for my dad as well as myself (my dad likes having souvenirs, he absolutely insisted that he bought DVDs for the family of my MBE Service, ha!)

There were some poignant speeches made before the exhibition opened, including from Grayson and the Mayor of Bristol.  It was slightly surreal listening to them as usually I’m the one making them (I’m the Founder of a charity) or I’m listening to speeches at events that are associated with work.  I’d never imagined myself listening to speeches about an exhibition that I was part of.  Again though, I hung around at the back, being low key, trying to stop my hands from shaking by wheeling a little up & down (my equivalent of pacing!)  This was in contrast to Stephane who went as near to the front as he could & took photos.

Shortly after the speeches we met Grayson.  He was adorable.  That’s all I need & want to say.  Some moments stay private, except to say that I hope he found the present that I made for him & Philippa.  I feel pretty sure I put in on the correct table at the back that had lots of presents & cards marked ‘Grayson.’  The present-making hadn’t gone quite as I had planned it, but it was one of my installations in a jar on the topic of what would be the smell of COVID.  This idea was borne out of a conversation that had taken place between Grayson & I earlier on in the year…scotch eggs perhaps…😉 That’s the smell that will remind everyone of COVID. 

My artwork was in the section called ‘Family, Food & Nature’ & as I was queuing up (completely bypassing the fact that the Banksy was next to me), I noticed my piece through the doorway & it took my breath away.  The bottles & jars in my installation usually sit in my cupboards, or on my dressing table, or on the windowsill in my kitchen.  Now they were encased within a Perspex case, on top of a white plinth.  It was completely surreal.  They glinted underneath the lights; the colours refracted & reflected, drawing me in. 

Once into the space, I went straight to my piece & pressed my face against the glass.  And then I pulled back, saying loudly “Oh wow!” & a few tears came.  It was quite noisy so I’m not sure that anyone noticed but a few people came over to congratulate me & to tell me how my piece had impacted on them which I was totally unprepared for, but very touched that they’d shared memories of their own families with me.

Shortly after I met Philippa & she was also adorable.  Again, I don’t want to say much more but we had a long conversation about my work & why I made it, & she made me feel very at ease, so I started to relax a little more. 

And so to the art piece itself, ‘The Smells of My Family.’  Me – nagging everyone to get their favourite smells to me so I had enough time to make the work (nothing new there, I’m always hassling them about something we (they!) should do!).  My sister Louise & I laughing about the smell she chose for her son Samuel “because all teenage boys smell of Lynx” (other brands are available!)  My brother Pieter’s love for all things football & his everlasting support for Sunderland with all its highs & lows – “A Victory After a Sunderland AFC Win (rare smell).”  Each smell gives a little glimpse of my family member, their sense of fun & their sense of what’s important to them, now captured in a national exhibition that records a unique period of time in world history.

I want to say a few words about the other artists and artworks.  I’d had a bit of banter with Harry Rose & Stevyn Colgan on the ‘Grayson’s Art Club’ Facebook page, but I was too shy to say hello on the night which was silly of me really.  However, I did meet Sweet & Maurizio D’Apollonio who made ‘Dinner Date’, Wendy Allen & her ‘muse’ for her drawing ‘Daily Bread’ & Anneka Rice.

There are so many great & clever artworks in the show that all reveal aspects of human life, but my favourite piece is the one that stood out from the beginning of series 2 for me – ‘Joke Alphabet’ by Chloe Hunchen-Garner & Tom Hunchen.  Together with her dad Tom, a legendary joke-teller, Chloe made a collection of all his jokes & together they picked out their favourites.  Then they sent a ‘joke-making pack’ to all of their family & friends.  They asked them to make artwork about the jokes, which were sent back to Chloe & Tom.  Tom sadly passed in November 2020, but the family now have a permanent memoir which is unique to him.  I found this incredibly poignant because I come from a family of jokers.

I must say some words about Becky Tyler; she uses an eye-tracker on her computer to paint because she is disabled; effectively she paints with just her eyes.  The follow up programme about series 2 on Channel 4, which aired on 10^th December, featured Becky teaching Grayson to use the eye-tracker to paint.  Becky epitomises true creativity as a disabled artists for me because she uses a different technique to capture her subjects.  This is completely tailored to her as an artist.  She wouldn’t paint that in that way if she wasn’t disabled. 

When you review both series of ‘Grayson’s Art Club’, it featured a lot of disabled people & this has done so much to change the public perception of what we can achieve as well as showcasing our talent & setting out our ambitions to the rest of the world.

It also features the human stories of others who were living a different, marginalised life even before the pandemic, & now some of those people have become more marginalised than they ever were before.  Grayson seems to be one of the few enabling these personal stories to be publicly told.  I’m thinking of Alex Robinson & his parents, & Emma Major from series 1, & Matthew Willis & his parents from series 2.  Like me, their routines & relationships with others were interrupted.  Everything familiar to us & that made us feel safe, was ripped away.  That’s why the only solution to keeping us safe was to tell us to stay at home, is unbelievably cruel.   

If it does nothing else, I hope ‘Grayson’s Art Club’ makes the public wake up to what’s really happening to some members in our society & what’s more, galvanises people into action to change the inequalities of life in the UK.

Grayson and Philippa Perry were so open & friendly with everyone on the night.  They made the evening all about the artists.  They’re generous & kind.  My favourite bit in all the episodes was when they used to stop for lunch & eat side by side on the sofa in their studio, discussing the topics of the day.  They’re every bit as gentle in person as what’s captured through the telly box.

My last accolade that I want to give is actually to my old dad, who, when asked about his favourite smell, just said it was ‘The Smell of Life.’  He’s seen & experienced so much upheaval in his life too, so when I read his text, I found it very emotional that he still found life wonderful.  We’re on a level together here.  I’m so into this sentiment of ‘The Smell of Life.’  I absolutely love life.  I’ve come so close to losing my life several times over, from when I was a kid & being born with an impairment, to recent months where I had cancer & COVID-19.  I learnt to live every day like it’s my last.  Whatever has happened in my life, I’ve loved it.  I love my family & I love my friends.  I love my colleagues.  I love live music.  In fact, I love everything.  I’m so, so happy to still be here & so chuffed to be a member of ‘Grayson’s Art Club.’  I can’t believe my luck.

Merry Christmas Everyone!

Photos from the Private View:

Stephane – my partner, without whom I wouldn’t have been able to go to Bristol as well as doing a lot of things in life.

Alt text: A white man in a blue suit & grey jumper, with tortoise shell glasses, stands in front of a statue in a museum.

Me with Grayson Perry at the Private View.

Alt text: A white man dressed in pink corduroy dungarees & jacket, with curly blond hair, is smiling, & standing next to a white woman with blond-brown long hair, blue glasses, a black mask, & a black & pink blouse.  She is carrying a pink bag, sitting in a wheelchair & she is smiling.

Me with Philippa Perry at the Private View.

Alt text: The same white woman from the previous picture who sits in a wheelchair, is sitting next to a white woman with white & black hair in a short bob-style, wearing grey, round glasses & a grey dress, & red lipstick, is kneeling beside her.  They are both smiling.

An image of the description board at the exhibition of ‘The Smells of My Family.’

Alt text: Black text on a white background that reads: ‘Suzanne Bull MBE.  The Smells of My Family.  “I was shielding during the pandemic and unable to see my family.  As well as being Disabled, I was diagnosed with breast cancer when the UK shut down.  I asked my family members what their favourite smell was.  I pretended to ‘bottle up’ each smell for a permanent reminder of them whilst we were apart.  Making art is a huge part of my life and I’m glad something great came out of a bad situation.  Mixed media: glass jars, paper, fabric.  Courtesy of the artist.”

‘The Smells of My Family’ in the exhibition catalogue.

Alt text: A double-page spread of a conceptual art piece with different sized & coloured bottles & jars, labelled with family names & pretend smells.  There is a description of the piece & the name of the artist.

Me in front of the iconic Grayson’s Art Club sign.

Alt text: A white woman sitting in a wheelchair from previous images is in front of a large blue sign that is shaped like a cloud.  She is pointing up at a sign.  The sign says ‘Grayson’s Art Club’ in red & yellow.

A few of us in our ‘Writing for Wellbeing’ class turned 50 this year, so we each decided to write how we felt about it.  As I’ve only got a couple of months left before I officially become ‘over 50’, I thought I’d blog about it, alongside a photo of myself dressed up in my best Glam Rock gear (best not to ask!) It’s a very tongue-in-cheek, light-hearted view about becoming 50.  I might not end up doing any of what I say that I’ll do in my 50’s (except the nude sunbathing, I’m so doing that!)

Alt text: A coloured photo of a white woman with long blond hair that’s styled in a 80’s-frizz. She’s sitting in a purple wheelchair, in her front room.  She’s leaning forward in her chair with her arms outstretched & her eyes closed.  She’s wearing a lot of thick make up including long false, black eyelashes & dark blue/ grey eyeshadow.  She’s wearing a white headband with ‘Henge’ written across it in black capitals, & a purple cape, a black long-sleeved jumper, a silver top, blue/purple leggings with a night-skyscape printed on them & white furry boots. 

I’m delighted to have made it to 50.  Who knew that would actually happen? As a disabled baby, I was given 3 days to live, so I figure that any extra day that I get to have is a bonus.  To reach 50 was always my goal & then I felt that I could take it easy for the rest of my days.  But then at 49 I got diagnosed with breast cancer, then my surgery was cancelled due to the pandemic, & so those two events combined threw a big spanner in the works.  I honestly thought someone was having a laugh when the consultant confirmed that I had cancer.  I thought that because I’d survived so long with my disability, that I was ‘home & dry’, never imaging that a life-threatening disease would come along to test me.

But here I am, at 50 & 10 months. 

I don’t want to (over) ‘achieve’ anymore.  I just want to ‘be’; suspended in space & time, in the moment.  50 is great.  50 is a powerful milestone.  50 means that I don’t have to put up with your s*** anymore.  50 means that I can do & say whatever the hell I like.  50 means being menopausal & boy are the hormones raging through me, pushed along by the ‘Zoladex’ shots.  50 means that I’ve never felt it more important to be a feminist than I do right now.  50 means that I’m going to shout even louder than I’ve ever done before (yes, that is possible for a loud mouth like me!)  50 means a whole lot of rich life experience behind me & a whole lot of adventures to come.

50 means that I have saved enough money to have a posh kitchen.  I’ve waited all my life for a grown-up kitchen (well, I’ve waited since November 2017).  I’ve ‘come of age’ with my kitchen & its double oven & extendable mix-tap.  I shall want nothing more in materialistic things.

50 means that I can have a SAGA Holiday & relax in a Warner Hotel (other brand holidays & hotels are available).  I envied my grandparents & my great aunts & uncles because they always looked like they had so much fun at these places – singing, dancing & sending up life with their friends.  I want to aspire to being on endless holidays.

I can still go partying & laugh along with all the young people who exclaim “But you can’t be 50, I would never have guessed!”

“Thank you,” I reply modestly, secretly thinking “Yep, I still got it.”

In a few years’ time perhaps I can retire.  I can spend my days dancing to the radio.  I’ll sunbathe nude in the garden just to piss off my millionaire neighbours when they are ‘corporate entertaining.’  I won’t have to do a stroke of work. 

So, if you want me, I’ll be in the garden drinking gin, regaling everyone with my tales of misadventure, thrills & bellyaches whilst working on the edges of the music industry.  I’ll leave you to work out what I’ve embellished & what parts I’ve left out, because what goes on tour, stays on tour… 

“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.