Scan, rock n roll detoxing and shining stars

My steroid detox adventure continues in earnest.... it remains nothing short of awful. I was awake after 3am this morning, with joint pains that were like someone sticking knitting needles into me. It was so bad I had to get up and walk round the house. I was crying with the pain of it and came very close to calling a doctor.

But then I realised...... what could a doctor do? Give me more drugs? No, that’s not the answer for me. 

I know some people live their whole life either dulled down or perked up by prescription medications. I don’t judge anyone else’s decisions, but I want to live as close to my ‘normal’ functioning as possible. I definitely don’t want to be dulled, but I don’t want fake highs either. 

I accept I’m likely to have to take anti seizure medication for the rest of my life. Fair enough. I’m on a low dose currently and will worry about that once I get the other sorted. 

The steroids, however, have got to go. They’re too strong and I’ve been on them too long. I’m currently in a very slow titration programme, with small reductions every 2 weeks. If I stick with it at the current rate then it’ll be September before I’m off them completely. I’m willing to give it my very best shot, but it is turning out to be very very tough going. 

I kept going last night without calling anyone because I had a scan today. Like every cancer patient, scan days are nerve wracking days anyway. I might tell you I’m taking it in my stride and my attitude will seem totally upbeat. It’s not necessarily how I’m feeling inside. That’s always been part of the reason for this blog..... it’s where I admit the truth. As well as to my poor husband and sister; both of whom get daily ‘blogs’ and then deliver hugs, wisdom and support as needed. After my scan today I got to enjoy lunch with hubby and my son. It’s times like that when I’m reminded why it’s so important to keep going through the rough bits. Family. 

Thankfully I had a wonderful nurse at my scan today. One who completely empathised with my fear of getting a cannula in, and the dye being cold etc. She took time, was extremely efficient, whilst constantly reassuring me. Another ‘born nurse’...... I’ve got to know a few during this journey so far. Thanks to her, I got through the scan calmly and was able to walk away relatively unscarred from the experience. Now I intend to try and completely forget about it until I’m deemed worthy of contact with to explain results. I’ve been told it might not even be read for 2 weeks.... nothing like dragging it out. 

But guess what?? Another challenge complete. Another scan under my belt. I can’t see any reason to believe anything has changed since the last one, and I just hope someone does the right thing and takes the time to let me know quickly. 

As ever, I will keep up my end of the bargain. I won’t let my Support Team down. I’ll keep my positive attitude when it’s possible, but I’ll also allow myself the odd teary times. I’ll keep working hard and determinedly push through the rough bits. 

I’ll stay on the rollercoaster, with hubby beside me in the front row. Sister right behind. Rest of the car filled with an eclectic mix of lifelong friends, colleagues, nurses...... friends!  Xx