On Monday I went into Central London to have my first Lidocaine pain relief infusion. When they gave me the appointment a few months ago I knew getting to the hospital for 8.30am was going to be tricky but in reality it was bloody hard work. I had to get up before 6am and cut short my TPN feed otherwise it would have meant taking the rucksack into London 😬 In the mornings my joints are stiff, swollen and painful (a side effect of Bowel disease is joint problems- I know, totally random but totally true!) so it takes me quite a bit of time to get up and get going.
There was no way we would drive into Central London so it meant getting a train in rush hour and making two changes on the underground. That wasn't too bad as I managed to get a seat and was actually offered one by a really cute guy on the Victoria line. I know I'm married but there's nothing wrong with window shopping! And I'm pretty sure that given the fact I had no make-up on, an NHS walking stick and hadn't washed my hair he just saw a rough looking disabled lady. It's a long time since anyone's given me the eye!!
Anyway, I'm digressing, as I always do! It was just a short walk from Russel Square tube station to the hospital in Queens Square (round the corner to the famous Great Ormond Street hospital) Waiting for the lift was another lady around my age with the same walking stick and mentally I bet that we were headed to the same clinic. Actually we ended up in beds next to each other!
I wasn't sure what to expect the clinic to be like and has no idea how or where they would give me the infusion. As I sat in the waiting area more people arrived for their appointments, all normal looking apart from their walking stick and tell-tale look of pain etched into their faces. I was called through by an Irish nurse and weighed, I guess so that they knew how much medication to put in the infusion. For some reason I always immediately trust Irish nurses- I have never met a bad one and personally have found them to be very caring. I have always found Phillipine nurses to be fabulous. Perhaps they receive different training over there but they are very thorough, competent and extremely hard working. I think that in this country nursing is not seen to be a great career choice or given the respect it deserves. I know that now it is a degree course but I think nursing is less to do with the ability to pass exams and more to do with having a kind heart, empathy and respect for other people. Perhaps if the pay reflected the job then more people would consider it as a career and also attract more men too. Party political broadcast over! Back to infusion day.
After being weighed the doctor came and introduced herself and said she was going to put a needle into my hand through which the infusion would drop through. I laughed. "There's no way you'll get a cannula in my hand" I told her. But she scoffed and told me she was very good at getting them in on the first attempt. Who was right? Me of course. She tried one hand, and then the other before telling me to take off my socks because she needed to try my feet! I was just relieved that I had shaved my legs the day before otherwise she wouldn't have been able to see the veins for the hair!
After a few attempts...
...we had lift off. Or rather she actually managed to get the needle into a vein. During one attempt she must have totally missed the vein and as she continued to poke the needle about in my foot I cried out in pain. Do you know what she told me? She told me to suck it up!!!!! Suck it up? I've had more needles in my foot than you've had hot dinners my love so don't be telling me to suck it up! I should have written that last sentence in caps lock as in my head I was shouting at her at the time and even now writing about it I find myself feeling cross.
But finally, an hour after I arrived the infusion began. I expected it to be a bag of fluids, a bit like a drip but infact it was this small syringe of medication that was pumped ever so slowly into my vein.
The idea behind it is that it numbs the pain receptors in my spinal cord (I think) and I was shocked to find out that it's the same medication that you get given to numb your mouth when you go to the dentist.
I wasn't sure how I would feel when the infusion got going. Would I notice it going in? Would I feel funny? Would I hallucinate? Would it knock me out? All of these questions and more we're going through my mind? It may surprise you to find out that I don't actually do a great deal of research about things like this. If a doctor says that it's the right thing to have then I trust that judgement. I might look on the NHS website or another proper site but I don't like to go on forums or Facebook pages. In the past I've found that mostly it's negative stuff on there because it's people that have time on their hands and a reason to moan that post because those that are well or happy with life are out there living it!! A bit like myself- if I had a 'normal' life where I wasn't ill, worked and went out drinking with friends, on holidays and generally doing what everybody else gets t do then I would have nothing to blog about and no time to do it.
But in actual fact I felt nothing. They could have been putting water in as far as I was concerned. I had brought stuff with me to pass the 2 hours it took to empty the tiny syringe and managed to catch up on emails, send a few cards, write out the kids party invites and even catch up on some magazine reading.
And find time to have a coffee and a chat with the lady in the next bed. My friend arrived to escort me home. If you don't have someone to take you home then they won't give you the infusion. I guess it's to protect them incase you ended up injuring yourself or even dying on the way home but in all honesty it's a bit of a pain. It meant that my friend had to travel into London from Hertfordshire on the train to escort me on the return journey that I had made that morning. And luckily for me she has agreed to do the same when I have my next one in July.
The nurse said that I might find that my pain is worse over the coming week but then the effects of the infusion should kick in. I'm not looking forward to the first bit and to be honest I'm not going to hold my breath over the second. I don't know whether I've become tolerant to the effects of opiate medicines like morphine and oxynorm because in order to get any relief from them I have to take mega doses of them. Recently someone I know with terminal cancer has been prescribed oramorph (liquid morphine) and I take a dose 10 times bigger than they've been told to take! No wonder this stuff is knocking years off my lifespan!! But what I'm getting at is that I don't seem to get much effect or relief from medication so I doubt that this infusion is going to have magical, wonderous effects. I know it's not designed to take the pain away, just to take the edge off it, but I doubt that even that will happen. Maybe I should believe and just the effect of doing that will make it work. Like the placebo effect.
When we left the clinic it was such a lovely day that instead of heading home straight away my friend and I ended up sitting in a cafe in Russell Square gardens having coffees and icecream. It was a great opportunity for us to just chill out and catch up with what's been happening in our lives without the kids there interrupting us every 5 minutes. We both share a love of the amazing buildings in London and the art of people watching so we had time to indulge in both of those that afternoon.
When we got back to my house I was exhausted. The vibrations from the train had sent my pouch into spasm so I was in absolute agony for most of the journey home. Trying to cope with a spasm episode, especially in public where I have to resist the urge to cry out or scream for fear of frightening small children, is hard work. I feel like I've been to a spinning class or run 10k by the end of it. I think pain is tiring anyway but when your insides are twitching and contracting and flipping about it's hard to walk so every step feels like a marathon and climbing the stairs is like climbing Mount Everest.
Strangely my bowel also feels like it's trebled in weight so it's like I'm carrying about a lead pipe in my belly but one that's moving about like a slinky. That's the best way to describe how my insides feel I think. A lead slinky.
So with a lead slinky is in my belly to be honest all I want to do is sleep. I'm very lucky to have friends that take no offence to me falling asleep on them, in their house, in the car, in Costa, anywhere so when I say to my friend "thanks for coming all the way into London to escort me home but all I want to do now is go to bed" she says "good, because I've got shopping to do". I know that if I had wanted her to stay she would have. I'm going to miss my friends very, very much when I move.
NB x
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