Hi Ruby,

I'm not in the same position as you, I'm the dad with myeloma.

First thing, it's incurable but it's treatable. I was diagnosed in October 2016. By Feb 2017 I was in complete remission after induction therapy (chemo). Radiotherapy.followed in March. Next month I'll have been in remission for a year. With the therapies available now people are living for 5, 10 or 20 years and more, and more therapies are coming in all the time.

Having said all that, everybody has their own unique experience, so individually, none of us know how things are going to turn out. I've been very ill a couple of times and I'm far from well.

But I ent ded yet and I'm not gonna die today.

The best advice I can give to you is 'be sufficient to the moment'. Don't think about tomorrow or next week or year, but just the moment your living now.

It's ok to be sad, to be happy, to cry, to laugh . . . there is no right or wrong.

The more you know about myeloma, the less anxious you'll be. You can learn about it on this site by following the 'About Cancer' link above and two other good sites are http://myeloma.org.uk or myelomabeacon, a US site.

Any quezzies you have, feel free to ask and I'll try my best to help.

Best Regards

Taff

Incurable?? Seriously? Does the radio always follow as the next treatment after the chemo? My dad told us he could be cured and be wouldnt need radio but on Friday he told me has to now have radio? He was only diagnosed the week of Christmas and I was only told on the 29th Dec.. thank you for ur link and I'm glad ur doing better. 

Becs

Hello Ruby93, sorry to hear about your dad but at least you all know now what was causing the problems.  I expect he told you last because he knew how much you loved him and how upset you would be.  It is hard for the family as well as the cancer sufferer as you need to follow his lead on handling this.  My dad did not die from cancer but my mum did and I know how desperately difficult it can be to put your own emotions on the back burner while you are feeling torn apart by what is happening.  So you need to look after yourself too.  Just keep a close eye on your dad (I am sure I don't need to tell you that) without him being too aware of it!

I have never known anyone who had myeloma so I have learned something today (I have to look up the details before I answer the post as I don't want to show my ignorance  by saying the wrong thing) so I have you to thank for teaching me something new.  Not that either you or I would have wanted it this way but thank you.

Yep, seriously.

Radio is usually used to treat plasmacytomas or bone lesions. Plasmacytoma is what myeloma tumors are called, though as I understand it, they're not the same as the solid tumors of other cancers.

Myeloma cells affect  cells that form and destroy bone, helping the destroying ones and suppressing the building ones, so we get bone lesions or holes in the bone. Where you get large lumps of cells in the bone, they're called plasmacytomas and when they're in soft tissue, extramedullary plasmacytomas. Mostly they're in the bone. Radiotherapy is the protocol of choice for plasmacytomas.

I had a fist-sized one in my pelvis and had 10 sessions of radio over 2 weeks. Unfortunately it caused radiation colitis which turned to sepsis and I had my sigmoid colon removed. I now have 2 bags.

I also have peripheral neuropathy in my legs and feet and a bit in my hands. Can't walk very well. I've only just started eating again after over a year on chicken soup.

But that's me. Others are doing 150 kilometre bike rides within 18 months of diagnosis.

Now what I've written there is probably a lot to take in and probably really scary but after the initial shock of the first few weeks, there's always something to do. Hospital visits, scans and blood tests, treatment, trying to eat, walking if possible. Sometimes people sail through treatment with few side-effects, some are very ill from time to time. It's particularly important to steer clear of infections, they can kill.

Emotionally, I've been laid back about it all, Cried some but only for seconds at a time. Laughed a fair bit. Hugged a lot and expressed love as often as possible without going over the top. I take pleasure from little things. Most of what we usually feel is important, isn't.

While I check out a few sites daily, I'm not consumed with thoughts of cancer and I don't care about having to have 2 bags.

As I say, it's early days for you, your dad and your family, everything seems like it's too much. But it's just a case of being sufficient to the moment, dealing with whatever's in front of you now. And then it's another moment. There's so much to learn that it's difficult to know what to write, so don't hesitate to ask questions.

Taff