Dr H came this morning as expected, but didn't broach the subject of triamcinolone and a change in steroid medication. We discussed the immediate aspects of my treatment and the fact that I'd had a very bad night last night, and then he asked if I had any questions. Well yes, I did. The big question hanging over me was about trying triamcinolone as we'd discussed earlier in the week before he'd gone away. As I said yesterday, I had thought Dr H had got some measure of where I'm up to with my asthma in terms of physical and emotional stamina, that he'd understood, and maybe he has, but something had changed by this morning. Perhaps it was his time away doing whatever he's been doing for the rest of the week; or perhaps he applied professional emotional detachment (not always a good thing, in my opinion); or perhaps he's just a man being a man who doesn't want/like to 'do' emotions. Maybe it was something else. Whatever it was, though, was harder and less approachable. Less forthcoming. Almost less understanding.
I realise now that I'd slipped up and had allowed myself to let a smidgen of hope squeeze through the cracks. Maybe it was helped along by the positive vibes I had got from J, and having been introduced to someone for whom triamcinolone has been beneficial. I think I'd told myself that that introduction wouldn't have happened if it wasn't at least likely that I'd be allowed to try it, and that J saying, 'He's game if I am,' was almost confirmation that it was practically decided that I'd be given this opportunity.
I am a fool.
I had been led to believe that J and Dr H would be having a conversation about it all, and then would follow a conversation in which I was included too. Perhaps the first of these conversations happened, but I'm not convinced.
This morning, when I asked Dr H about triamcinolone, he basically said no. Now it's not quite as straightforward as that, and I know he's not dismissing everything I said to him on Monday, but I feel almost bereft. The reasoning behind this retraction is that there is no direct equivalent of dose between prednisolone (my current steroid) and triamcinolone, which makes the transition complicated. Dr H knows what dose of triamcinolone he gives to patients on a much lower maintenance dose of prednisolone, e.g. 15-20mg, but not for the dose that I take - 50-60mg. He said that they'd have to give me so much that he's not sure it's feasible/possible. I understand that. I can appreciate that. The logical part of my mind can see where he's coming from, but the emotional part is screaming that surely this must have crossed his mind before and if so why mention it in the first place and plant those first seeds of hope?! It is unfair of him to have done that! I'm cross! I'm fuming!
But I said before that the no is not a straightforward no. It appears to be a no for triamcinolone, which is shattering, but he said that they might yet try a different oral steroid, beclomethasone. I think I mentioned it briefly in my previous post. It's used a lot in asthma in its inhaled form, but not so much as tablets. In fact I can find nothing about its use in tablet form in the treatment of asthma when hunting on Google. Neither have I heard the same anecdotal evidence for its efficacy in asthma (as tablets, not inhaler) when prednisolone has failed as I did for triamcinolone. This isn't to say that it won't work or doesn't have the same chance of working as triamcinolone, but that it doesn't seem as likely to me because the evidence isn't as forthcoming.
Perhaps my upset over the apparent no to triamcinolone is out of proportion given that beclomethasone is being presented as an alternative, but the lack of evidence or anecdotes of helpfulness does bother me. I know there were never any guarantees that triamcinolone would work for me, but it sounded possible. Beclomethasone feels much more like a stab in the dark, with a vague chance that changing the steroid drug might help but with no/little past experience on which to base any solid hope. Given the option I will try it, because after all I have absolutely nothing else to try, but I don't have anywhere near the same level of hopefulness for a positive result. I was such a fool to allow myself to begin hoping for triamcinolone and the possibility of the positivity that seemed to be being presented to me. I should know better by now than to allow myself to begin hoping when it comes to 'new' asthma treatments for me.
I emailed J this afternoon. I told him what Dr H had said and how the triamcinolone has been retracted as a possibility. I told him of my upset and confusion. I told him I need his help so I can understand what the hell is happening with these apparent opportunities to try to get some life back. I heard nothing back. One of the ward nurses said J had popped up to say goodbye before he went home but he'd seen I was asleep and hadn't wanted to disturb me. On one level I appreciate that, but on another I'm cross because I thought it would have been apparent from my email that I very much needed to discuss the steroids and all the questions I raised.
Now it's the weekend and neither J nor Dr H will be in. It is also a bank holiday weekend so I suspect neither of them will be in until Tuesday. That's a long time to wait for answers that have potential to impact on my life so enormously. Maybe you don't see it that way. Maybe Dr H doesn't understand it as much as I thought he did. But for me it feels like the difference between life and none life. I want to live, but not like this. This is not living.