Hi Maureen,
I just thought I'd drop a line on the depression side of all this. It's not surprising you both feel very emotional and depressed at times, it's a horrible experience and particularly after it's dragged on for a while and with you having to be separate and Ian not mobile it is a very hard situation you're dealing with. It's ok to have down days, it doesn't necessarily mean it will go on like that even if it feels like it.
A couple of things though: 1) after the steroids there are days when you feel very low as the patient, it's basically withdrawal symptoms but very extreme and 2) you may have thought of this or be doing this already but I have found counselling very helpful. First I had it in hospital through the NHS, and then later (and now) I am having it through a local cancer charity. Both times it was a counsellor who specialises in cancer so they have a lot of experience with what we're all just coming across for the first time. It's just a useful space – sometimes Ian won't want to upset you or you won't want to upset Ian so it's another place where you can just say anything without limits and let out some of the emotion. it's not a magic wand obviously, things are still going to be hard – but personally I just think every patient and carer with myeloma should do it as standard! Admittedly everyone is an individual, so different people will take different routes, but it's worth considering at any rate, even if you don't feel like it at first. Often I think the carer thinks they're not entitled because they're not the 'sick' one – but you're having to juggle normal life and seeing people at work and worries about the future and managing finances and stuff, it's really hard. My mum went into over-drive when I was ill, coming into London and driving me to hospital appointments, etc etc etc – she was a really super-mum. But after I stopped treatment she got very depressed to the extent that she's actually been in hospital since Xmas Eve. So with hindsight I wish I'd taken her to go and get counselling earlier – but I just don't think she saw herself as a 'carer' and she was so focused on me at the expense of herself. I don't mean to scare you with that story – probably with my Mum various stressed had been brewing over many years – but I really can't recommend enough going to a counsellor, or looking up support groups local to you, and making sure that you take time out. Sorry to lecture!
Also it sounds to me like you're coping amazingly well, and there's real progress. Things do get better with time, so that's another thing to trust in, just going with the ups and downs but knowing it gets better.
Good luck,
Helen
Helen
bandityoga 11 years, 8 months ago.
