Saturday 17 November 2012

Big A - round two

This week I underwent my second course of Alemtuzumab.
This is my experience of it.

Day one
Fear and dread were to two overriding emotions which gripped me as I walked through the ward doors. I had worked myself up into a bit of a state truth be told. And the fear was all related to the canula of all things. I didn't want it in me and I didn't want my veins to get sore like they did last year.
The dread was because I knew the treatment was not going to be pleasant and I didn't want to feel awful.
Now before you accuse me of being ungrateful, I know I am very lucky to be getting this treatment and I am fully aware that I am one of the lucky ones - but it doesn't stop that feeling of self-pity creeping in and moments of darkness starting to crawl around my head.
But there I was, and it was time to get cracking.
There was a bit of a delay in the actual treatment starting and I managed to eat a whole family size bag of wine gums before the dreaded canula had even been inserted. Something which I regretted as soon as the steroid was hooked up because the filthy metallic taste came back and haunted me for the rest of the day.
Needless to say, along with the metallic taste came the increase in appetite and I managed to forage my way through various chocolates / biscuits / crisps and anything else I could lay my hands on.
After an hour, came the actual drug and as I lay there for the next four hours I managed to eat more in between napping and getting my blood pressure, temperature and heartbeat checked every thirty minutes.
Overall, the first day hadn't been a bad experience. That was until another MS patient getting his second dose of the Big A suddenly and without warning began having a terrible reaction to the drug.
He seemed to be in an incredible amount of pain and was crying and moaning. The nurses all rallied around and afterwards I found out his temperature had rocketed. He was moved to a different ward and I didn't see him again. But it was very upsetting to see someone in such a state and it panicked me that I would also react in a similar way.
That night, I began feeling quite nauseous and started getting 'scorched cheeks' but anti-sickness tablets and anti-histimins sorted me out. It was not an easy night's sleep though.

Day two 
Again the scorched cheeks plagued me on waking as did my increase of appetite but the treatment got under way pretty soon after waking and I managed to nap my way through it. I felt very tired.
The reaction of the man the day before was still on my mind and I found out that he was doing ok and would be continuing the treatment but he would be getting it over eight hours rather than four. I felt very relieved for him.
The treatment itself went pretty much as expected.
It was later that I started to feel pretty awful. I had terrible nausea. The first anti-sickness tablet didn't help and I was given a second which although took the edge off didn't actually get rid of the feeling. I have to say I felt pretty dreadful at this point.
I had a very disturbed night's sleep and the re-emergence of some past MS symptoms came back to haunt me - the worse being vertigo. It woke me in the night as I turned my head in my sleep and my brain felt like it was rolling around and around in my skull. It passed off but every time I moved my head too quickly, the feeling would come back.
During the night, after one of the observation checks by the nurse, I went to spend a penny and through my half closed sleep eyes looked at myself in the mirror as I washed my hands. I was amazed to see that my nose and chin had developed a strange hue of red. In the morning, my cheeks had also succumbed to the colour. Thankfully an anti-histimin came to my rescue.

Day three
The last day of the treatment couldn't come fast enough for me. I had suddenly found myself enveloped in a cloud of self-pity and it took all my energy not to cry at the slightest thing.
My scorched cheeks continued to glow as the anti-histimins wore off and as well as the vertigo symptoms I was also finding it hard to focus my eyes.
All of these past-symptoms were to be expected, I was reassured. It was very common for this to happen and it should wear off in a couple of days.
The treatment began early. But this time there was no continuous scoffing of sweets - the nausea was too bad. Again another anti-sickness tablet was administered which took the edge off.
Then suddenly as a young nurse who I had not met before came to take my obs, I suddenly broke down into tears. The poor girl didn't know what to do - which I was grateful for because everyone knows if you are too sympathetic to someone in tears, you can be trapped talking to them for hours about every woe. I apologised, said I was tired and managed to stop the crying. I was angry and annoyed at myself. I didn't know where this was coming from. The feeling of general unfairness and self-pity had started to take me over.
Thankfully, as soon as the treatment was done, I was unhooked and allowed to go home. It was all quite sudden really.
Home though didn't make the scorched cheeks or the nausea disappear and it was only the packets of drugs I was given that managed to make a difference.

Day one after the treatment
Two words described my general mood - anger and resentment. All the old feelings about MS came to bite me again. I felt so bloody angry at the world and I felt so bloody awful due to the treatment.
I didn't remember feeling as bad as this last year, but my husband says I was.
I felt weak, I felt awful, I felt like I had been through the mill. My cheeks continued to blaze and I felt so lethargic. The nausea was there on and off and again I couldn't stop crying.
It wasn't a good day. In fact I would go as far as to say it was one of my worst. Ever.

Day two after the treatment 
And now we are here on day two after the treatment. The vertigo is still there as is the poor eye focus. The scorched cheeks are ever present and I now feel like I am walking under water - everything is moving slowly.
My patience is still at snapping point and I still feel rubbish. But at least I am starting to feel like there is a light at the end of the tunnel now.
I realise the anger I have been feeling is partly because I want someone to acknowledge that I am having a shit time. I want someone to acknowledge that yes it is that bad actually. I want someone to acknowledge  that this is ball-aching for me.
But then maybe I should stop putting on a front when people ask me how I am doing and instead of telling them that yep, I'm doing great, I should for once be honest and tell them the boring truth that MS is a killer to try and get your head around.
I know I am lucky in many ways but right now I am struggling. Really struggling.

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