[KWilsonParticipant]

It's strange how some people don't realise how it affects the family.

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[KWilsonParticipant]

🙂 Thanks for the info.

My taste buds aren't working 'coz of the Dex so things don't taste as they should, which doesn't help. My friends have brought me enough chocolate and biscuits to stock a shop but unfortunately, everything I fancy is acidic and seems to be low in calories.

It's ironic that when I'm shopping, everything seems to be labelled 'light' and 'low calorie'! How contrary I am. I have tried to cram in as many carbs as I can. I don't eat meat or fish as a rule but I have added fish to my diet of late as it's one of the few things I can actually taste. I confess to using butter and eating cheese which, yes, I know they are fatty but it's a balancing act and I feel I can risk it at the moment until I get my weight back to something more civilised. Last time I lost weight, I went down to 6 stone and was very weak and looked like someone on the ads for people who are in war torn famine areas!

I'm trying to eat at least five times a day and if I can get the powder to stir in or chuck on stuff, it should help.

I've been in touch with my haematology nurse as I had a couple of other queries. She's very good at sorting things out for me and now you've said it's virtually tasteless, I'm hoping I can get it either prescribed or over the counter if it's suitable for me.

Thanks again.

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[KWilsonParticipant]

Not really a proper reply to your post but it made me smile because my daughter (who is well and just overweight because of her diet) was telling her colleagues that her partner had said one night before they went out – "What have you put that outfit on for, you look like the Michelin man in black?". The reassuring reply from one of her (male) colleagues was "Well, that wasn't a nice thing to say – the Michelin man never wears black!" – [i]and he said it with a straight face[/i]!

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[KWilsonParticipant]

I had radio therapy twice on my back but no surgery but at the last treatment they said I couldn't have any more as I've had my 'ration' for that part of my body.

I've read that a lot of people have had surgery and been pleased with the outcome. Good luck!

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[KWilsonParticipant]

Scary time for you both – GOOD LUCK!

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[KWilsonParticipant]

This notification is outdated now as the number given to ring has been blocked by the authorities.

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[KWilsonParticipant]

Hope she continues to improve on the abs and you soon get her back home.

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[KWilsonParticipant]

Such a difficult situation and yes, these circumstances do sort out your 'true' supporters.

I haven't anything helpful to say but hope you can find some way of resolving this.

However, if you can't and you need help because both of you are ill, it may be a good idea to discuss this with your local health care team to see if any community help is available for you.

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[KWilsonParticipant]

Really informative thread as I too am running out of options. Interesting to see how/when the other treatments will be available to us and also how other forum members fare when applying for them.

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[KWilsonParticipant]

I've had bisphosphonate for aaaaaaaaaages and altho' I felt a bit sort of 'odd' for the first few days after the initial three or four infusions, I soon got used to it and haven't had any problems at all since the.

I do feel it helps with the pain and also helps to keep the MM at bay somewhat, which, as I understand it, has now been clinically proven.

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[KWilsonParticipant]

What a difficult time this is for you both – I can't say anything that will help, other than you are in my thoughts.

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[KWilsonParticipant]

I replied to this on the old forum and then realised nearly everyone has 'moved house'.

Anyway, welcome to the forum.

Maybe a good idea to get scanned to find out what is causing the decreasing mobility and this will give you more information as to what's causing it and any suitable steps to take to improve it.

I hope that once the chemo/radiotherapy kick in the mobility will improve, it did with me.

Good luck to you on your journey with your Dad through this siatuation#

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