Last time I wrote I had just said yes to the new drug, Lemtrada, that was about a year ago. I fully intended to blog every day during my infusion week and share my experiences. But with one thing and another it never happened. It was an eventful week all told and my brain couldn't cope with having to form coherent sentences on top of everything else. This year I will!
So I'm now only about 2 months away for going in for my second round of the treatment. Its reached that point where I have to start thinking about it again and planning ahead. I'm already having to start turning down meetings at work for the end of October and into early November. Then I feel like I have to explain why, especially to people I know less well in case they think I'm just being difficult.
This happened again this week, and the conversation that followed was similar to one I've had many times, but got me thinking this time. Most people ask the same question, is it working/when will you know if its working. Its a hard question to answer because really it's more a case of how do you know if it hasn't worked. The aim of the treatment is just to stop the disease activity, to hold me where I am now for as long as possible. But because MS isn't active all the time, its relapsing and remitting, how do you know if the drug is working or your MS just hasn't flared. Its a bit of a waiting game, and I guess at least for a good while I'll be pretty much like I was before, waiting for the next relapse and getting on with life while I'm waiting. There's no level of certainty, no test they can do and definitively say 'yes Michelle this treatment has been successful and your MS has been halted', no way of knowing what the next year, month or week will bring. Not in the way they can with many diseases. The only measure of success is being relapse free, but no one can say how long that will last. Living from one MRI to the next to see if there's any new activity and looking out for any small changes that might indicate something is going on. But still no real peace of mind. The longer it lasts the more promising it looks, but like everything the effect will only last so long, its a treatment not a cure.
I do wonder if some people think its some kind of miracle cure and that I'm suddenly going to start to get better and one day I'll wander in without the sticks and take up running. When they hear Chemo, they hear cure. It's a degenerative neurological condition, its not going to get better, it's only ever going to get worse, at the moment there is no cure. If I'm really lucky I'll get to stay how I am now for as long as possible, that's my big hope for the future. This really is as good as it gets for me. And that's a really hard thing to get your head around on some days. My brain still thinks I'm the same person I was 15 years ago and constantly writes cheques my body can't cash. The interest rate on the debt is huge some days!!
It's been a rocky year, broadly I'm about the same now as I was this time last year, but I tire more easily these days. I'm hoping this might be to do with the fact my body is working so hard to repopulate my shiny new, well behaved, white blood cells and so might ease in time.
This year I have to have the treatment as an inpatient, so a minimum of 4 days and possibly longer in the local hospital. I've stropped, sulked, protested, argued but the lady isn't for turning, so I'll have to suck it up. My steroid sensitive diabetes makes it too much of a risk on the day unit. But I'll still moan, a LOT!! I'll shortly begin the pre-treatment blood tests, x-rays and scans to ensure I don't have any nasty infectious diseases like HIV, Hepatitis or TB. Pleased to report I had none of these last year so I don't foresee a problem this year either. Then I'll start the 'diet', so have about 4 weeks to eat my body weight in pate first to make up for the 4 months of not being able to eat it. Or KFC, fresh cream cakes, prepacked salads, cooked meats, and generally eating out in many establishments. OK so I can live without the salad as any one who knows me well will attest to! I probably have another rough few months ahead, but it will soon pass. I think I'm more anxious this year than I was last time however. It's starting to keep me awake at night already. Just want to get it over with now.
On the upside, being out of actions for weeks in peak Christmas prep season is a great excuse for starting planning now!! And no-one can judge me.....
