[pepz83Participant]

Hi all

my dad had his results back today which unfortunately showed that he has stage 3 multiple myeloma. I live a fair drive away but have been on the phone to all the family today, it generally seems to be me who calms everyone down and gets them to focus so it looks like I’ll be the one holding this all together. Therefore, how best can I support him? He’s not a fussy kinda guy, he’s always been active and healthy and I was a shock to him as in his mind he doesn’t feel ill enough for the diagnosis. How can I support him through chemo and support the rest of the family too?

[greg777Participant]

Hi Pepz,
<p style=”text-align: left;”>Very sorry to read about your Dad’s diagnosis and I wish you and all your family the very best at this difficult time. I think “support” means different things to different people but given it is all very new for you, a good place to start might be to read some myeloma brochures so that everyone has chance to understand at a high level what you are facing. You will quickly find out that myeloma can affect individuals in very different ways but I found these brochures to be a good support in trying to get my head around things at an early stage. Myeloma UK has a good brochure, Macmillan and other blood cancer societies also have good brochures. Beyond that, signing up to these forums (as well as others like Macmillan and Anthony Nolan) helped me in sharing experiences with those going through similar things. I was also given the name of a nurse specialist at the hospital who was a great point of contact in the early stages, answering questions and pointing me in the right direction. There are also lots of good counselling services out there if you feel you would benefit from this as well. And when all is said and done, I found the best support was just knowing that my family were there for me. I don’t underestimate how horrible the initial diagnosis is but just being there for one another and talking was a good way to start to get my head around what was happening.</p>
I hope this helps in some way and please don’t hesitate to ask anything further.

All the very best,

Greg

[pepz83Participant]

Hi Greg,

Thank you for your very informative response. I’m glad that you found support out there and I will certainly be getting onto the organisations you mentioned. In my family, it’s my dad and I that hold things together. Obviously right now, I want him to focus on his treatment and not worry about everyone else so I’m trying to take the burden from him as much as I can. He needs his strength

[rebeccaRParticipant]

Hi Pepz, This is one hell of a shock diagnosis and a very complicated cancer – learn all you can if it helps you and so you can pass good snippets etc but do not bombard him with info but be ready if he asks. This is very important as imparting knowledge needs to be at a pace/when your father wants it – so make sure everyone respects this. However, stage 3 will sound bad – it isn’t it is a marker of the extent of damage only – the important thing is how he responds to treatment stage 3 that is easy to treat may trump stage 1 that is hard to treat. A key message is to emphasise how individual the disease is. Incurable cancer – another scary message – go look on the beacon and search for long term survivors topic – give him snippets of their stories so he knows there are people living 20 years plus with it. Give him snippets of looking through the forum and the pattern is treatment then drug free remission until it comes back then another line of treatment. Reinforce we all say this is a “Marathon not a sprint” so no panic. As with all illnesses/cancer I would personally like to emphasise that all crying and emotional outbursts is not helpful – do that behind closed doors not in front of him. Display positivity, calm and some knowledge on it all (and reassurance from the forums)so he starts to think it will be ok and you can get through this – which he will. There are so many people living well with this – including me – that’s what he needs to hear. He is very lucky that you are so quickly “on this” and you can become his knowledge source…as and when he asks. Best wishes
Rebecca

[Ang287Participant]

Hi Pepz, I agree totally with what Rebecca has said. My husband was diagnosed with Stage 3 and at the time you think it sounds so bad compared to Stage 1. i think Stage 3 was because he had damage in his spine with some collapsed vertebrae and he was originally in agony with his back. However, now he is nearly 3 years in remission following chemo and a stem cell transplant. Like Rebecca said I am continually looking at the forum and the facebook group “Uk Myeloma Support Group” and I read to him all the positive things I see regarding long term survival. You do have to take things one step at a time and his Heamatologist treated him exactly like this. Treatment these days to control this is so much better than it was years ago so don’t google anything as the information will be out of date. Just look at the Myeloma UK website.
Good luck with your Dad’s treatment, Angela

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