A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Saturday, 28 May 2016

Steroids

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!

I'm broken.

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.

8 comments:

vivinfrance said...

I'm so sorry you feel your hopes have been dashed, Maybe Dr H had had a bad week which led to his supposed lack of feeling. Look at it this way: he will rest during the break, and may come back full of ideas.

It's difficult to be patient when you are A patient, that I know well from personal experience, but I pray that they can sort something out between them to make your life better. Love, ViV xox

Sara said...

I'm so sorry to hear that this may not be an option for you, especially since you've struggled so long and have more than paid your dues (so to speak) to receive respite.

I discovered your blog about a week ago and have slowly been working my way through your posts. I'm only to some point in 2009, but I've really enjoyed your writing style and stories. I have asthma, as well, though mine is much less severe than yours. I am amazed at what you've accomplished. You have such a resilience, but just because you have it, doesn't mean you should have to rely on it as much as you do. I will be keeping you in my thoughts.

Sue said...

Hi Becky. I've been checking in on your blog since I was doing the same OU module as you. I have just read your 3 posts this week. You are most definitely NOT a fool - but I hear and feel how it seems like that to you, for hoping and believing there was a possibility of a better way of living. To have been offered even a chance of hope, to then have it withheld from you - that feels so very wrong. You have every right to feel angry. But you are not a fool. You are wise, determined, patient, caring and a whole lot more - even when you don't feel that way. AND you appreciate the best things in life - cats =^..^=
Love and Hugs,
Sue xx

Anna Hopper said...

Hi Becky I'm so sorry that things are feeling so bleak for you. The not knowing and so not having options is so difficult to deal with. Its compounded when you glimpse a possible solution however remote or unlikely and that makes the emotional response so much more intense. I have different health problems mainly a very bad back which I'm running out of options to control the constant pain so while different I totally understand the place you find yourself. It's not foolish to grasp at any chance of improving things , it's human especially when you are so drained and desperate for any improvement..I'm praying that you manage to get some physical, emotional and mental rest and for a way forward to become apparent x

BeckyG said...

Hello Sara and welcome to my blog. I'm glad that you've enjoyed reading it. I haven't been very good at keeping it uo to date over recent times, but I'm trying to get my act together and get back on track.

Thank you for your kind words about my accomplishments and resilience. It's always nice when someone else thinks those things (and says them), especially at times when it can be difficult to see them oneself. As you will have picked up from recent posts, I'm struggling with the resilience thing at the moment, and I do get fed up when folk tell me to 'keep my chin up,' or the likes, so it's refreshing to have you say that just because I have been resilient in the past it doesn't mean that I should always have to be. Thank you.

I'm sorry to read that you have asthma too, though pleased that it isn't as severe as mine. I'm sure it's quite tough enough for you though, and I hope you never feel that you can't be fed up about it just because it's not as severe as someone else's. If it's hard going then it's hard going and comparisons aren't going to change that.

Thank you for keeping me in your thoughts and thank you for reading and commenting.

Take care,
Becky.

BeckyG said...

Hello Sue,

Thank you for your comment and for saying that I'm not s fool for inadvertently allowing myself to begin to hope. I still feel foolish, but maybe I need to listen to you and a couple of others who've said I'm not. Thank you too for all the very kind things you have said about me too. It is difficult always to believe them of myself when I'm feeling low, but I will hold onto what you say so that I have a chance of believing them again when I'm feeling more positive. Of course, my appreciation and love of cats never falters! :) >^..^<

I met several folk called Sue during my OU studies. Which module did we do together?

Take care,
Becky.

BeckyG said...

Hello Anna,

Thank you so much for your comment and clear understanding of where I'm coming from. I'm so sorry that your understanding comes through personal experience of chronic illness and pain. It is so very difficult to be at the end of the line of treatment options, whatever the condition. If only there were a never-ending list of possibilities for us all. I don't know about you, but I am so weary and drained from it all at the moment. It is the relentlessness of it and the serming impossibility of that ever changing. I hope you're in a better place than I am right now, but if not then at least neither of us are alone.

Thank you for your prayers. They are greatly appreciated, and the physical, emotional, and mental rest you specifically say you are praying for would be so very welcome. I will pray for you too.

Take care,
Becky.

BeckyG said...

Hello lovely Viv,

Thank you for your comments. I always like getting comments on my blog, especially from lovely folk like yourself :)

I don't know what kind of week Dr H had last week, and of course whatever kind of week he's had is going to impact on him, but I'm not in an emotional place right now that can deal with his week impacting negatively on him. I know that's selfish and lacks all compassion, but it's honest. I need him to be approachable, up for discussion and explanation, truthful, and not playing with my emotions, however inadvertently that may be. I wish I could trust that tomorrow he'll be back bursting with ideas, but I think the difficulty is that there are no options out there that can spark any ideas. He hasn't seemed to have any for me for several years so I can't really imagine that a bank holiday werkend is going to suddenly produce them. I long to be proved wrong.

Thank you for your prayers. I need them right now. I hold you in my prayers too.

With love,
Becky x