Infused With Acid

#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.