5. Starting Treatment

Miles 1 and 2
Undulating with some steep uphill sections.
It is a great relief to get underway.

The first two visits to the hospital for the first 28 day cycle of treatment are referred to as days 1 and 8. The next two will be days 15 and 22. Mine are mainly on Wednesdays.
The lovely team at the Montefiore Hospital really looked after me and calmed my nerves. Much of the time is spent sitting around but there is plenty of coffee and a great lunch. I started with the pre-meds then an hour later I was given my drugs with two injections to the subcutaneous fat in my stomach, one jab on each side. After that I waited three hours to see if there would be an allergic reaction. The time passes quickly enough but I took a puzzle book in case.
The main drugs come with a goodie bag of supporting meds.

I’m on my second week now and so I can start to see the patterns of ups and downs.

On the treatment day and the day after I can’t help but notice the dexamethasone. On “dex days” there is no need to sleep overnight or slow down during the day, I’m full of energy.

Thursdays and Fridays are hiccups days. On both Thursday nights I’ve still been going when falling asleep, which wouldn’t be so bad but for the rib pains. Generally the pains, which are mainly in my lower back, are a bit better on these days and I don’t need the paracetamol.

On the Fridays, I have come up in a rash around the neck, much worse the first week than the second. That dies down by Monday.

The first weekend I was exhausted, I just wanted to lie down and do nothing on Sunday. But I have to remember, it’s not me, it’s the drugs. The closest thing I can compare it to is that holiday feeling – no not that nice relaxed one. When your flight has been delayed, you haven’t slept and you are staggering around an airport at 4am with jet lag. That one!

It’s too soon to report much in the way of improvement but I am able to walk a bit more quickly and it’s only a few weeks back that I couldn’t take my weight on my left leg.

All set for day 15 and to go through it all again.