I emailed the neuro oncology nurse yesterday to let him know the problems JD is having (basically I sent him a slightly amended version of my previous blog post. See, blogging has its uses).
He rang me about an hour later to discuss it with me. He explained once more that it is all pretty normal but when I told him JD has morning headaches, he said that it was probably because the steroid dose is now too low. JD is on track to reduce her steroids little by little but the nurse-man said it is likely that JD still has swelling in her head and so reducing the steroids might actually not be a good idea right now. He said it might be the reason why she has gotten worse in the past few weeks instead of better.
And so the dose has been put back up again. Not to where it was at the very start but back to where it was a few weeks ago, before she started to get slower and more forgetful.
Hopefully this will make some difference. Either way, he made an appointment for JD to see him in clinic in 2 weeks time. Goodo. He kept saying that I need support too. Bu what with? My inability to accept JD is not able to keep to her promises, no matter how well she means (I’ll do the ironing today, I’ll order my own medication from the GP today etc.). I just need to be more patient and not get angry so that JD does not feel she is letting me down. It is hard enough or her without me being angry or upset.
A few days ago, I found a Low Grade Glioma support group on the internet and I just wrote a very long email about how I feel. The support has been really nice and helpful. I know I am not alone out there. I know JD’s symptoms are normal, I know I should be more patient. But it is still nice to have someone tell me they understand it is not that easy and hat they know how I feel.
Oh well, onwards & upwards (hopefully).