Hello all
I’m new to all of this- please forgive my ignorance.
My beautiful 38 year old- very healthy son discovered some rib pain 7 months ago. He has discovered he has MM!
I am in absolute bewilderment and sadness.
Can anyone advise me how to deal with my emotions and how to best support him and his gorgeous family?
I feel like a rabbit in the headlights
He has opted for the RADAR trials- any info on this gratefully received
Thank you all so much
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Oh @Lainers57 a great big welcome to our forum and I cannot imagine how you are feeling.
I was in shock for a long time after my diagnosis and you have your maternal feelings all in the mix as well.I am not surprised that you feel like a rabbit in the headlights.
I will copy your post to Blood Cancer UK nurses @BloodCancerUK_Nurses and perhaps they can help about the Radar trial.
As for help for yourself perhaps your GP can help with local help and that might include talking therapies that really helped me.
Macmillan Cancer might assist too.
The Blood Cancer UK support line is also there for you on 0808 2080 888
As for best supporting your son perhaps it depends on your relationship you have with him and his family and how near you live.
Perhaps just saying you are there for them is enough and offering the sorts of things you could do like having their children, cooking a meal, doing ironing, shopping, taking someone somewhere etc.
As for emotionally I think everyone deals with emotions, fears, thoughts etc differently, it is opening up a conversation and being a listening ear.
What I get cross about is people trying to make it better by negating my feelings, I am the one that needs time to process my feelings in my own way, we are all individuals.
We are here for you and I hope others can share their experiences
Please do keep posting as I look forward to hearing more about and be ever so king to yourself, I think your feelings are very natural, give yourself time.
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Hello Erica
Thank you so much for your response- just knowing there is someone at the end of the post is so helpful. The isolation is immense- but the reality is so different.
Thank you for your advise too- much appreciated.
As for yourself- you will be in my thoughts and hen I think of my boy- I’m not religious but I do believe in the power of the human spirit.
I look forward to hearing all great things from you.
Take care 
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Dear @Lainers57,
Welcome to the forum, I am so glad you found us although I am so very sorry for the reason you are here. I can only imagine what a shock this must have been for you all. Your emotions are completely expected, give yourself time to process everything that has happened.
Please know we are at the end of the phone should you wish to talk through things, all the ways you can contact us are on this link and we would be very happy to support you. How to contact Blood Cancer UK | Blood Cancer UK
I have had a quick look at the RADAR trial, it seems to incorporate a lot of the well used drugs for myeloma in new combinations. These drugs all work in different ways to target the myeloma. There may be some people in the forum community here who have had experience with the trial. One thing is for sure, you will get some great support here and I hope you find this a safe space to share your thoughts and feelings. I have also added in our website pages about support for family and friends when a loved one has cancer - perhaps this may be helpful. My friend or family member has blood cancer | Blood Cancer UK
Do please get in touch with us over the phone if you would like to talk, we are very much here for you.
Be kind to yourself,
Heidi J (Support Services Nurse)
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Hi there Heidi
I’m so happy I have found you and this website- I don’t feel lonely anymore.
I have known about my son’s cancer diagnosis for about 8 weeks now but only found out yesterday it was MM.
Thank you very much for reaching out and your comments about the trial. I know it’s aggressive but he is young and generally very healthy- so I hope this is the right road for him.
He lives 350 miles away- but I plan to go up once his treatment starts in 3 weeks- to help with the family.
I will definitely take you up on the offer of phoning- it’s so hard talking about this to his siblings as I have to be strong for them.
Once again- thank you
L
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Hi @Lainers57 we are a listening ear for you to honestly say how it is really for you, you are now part of our forum family.
You mention feeling lonely, you are separated by mileage and this is a very different situation than when you were actually caring for your son when he was growing up. Now he has his own family.
If your other children are grown up perhaps you do not have to be strong for them, it is OK to be vulnerable, it might help them open up too.
So please do use us xxxx
Hi Erica
I already feel so welcome into this family- I cannot tell you how much this means to me.
My other 4 children are all grown up and they live far from each other.
So I have been providing them with all updates as and when my son contacts me. They all see me as the anchor and look to me for guidance.
Up until
Now, I have always felt so lucky to have 5 healthy , bright beautiful cubs- I never in a million years thought this would be happening to our family- the bubble has burst.
Don’t get me wrong, I have had much sadness in my life, but somehow this tops everything- just when I thought nothing could.
I just need to stop fearing the worst and I need to get stronger and more hopeful- this is my main struggle.
I also have a huge need to know everything about his journey…….
He has had a meeting today , further baseline tests and maybe starting his treatment within 10 days.
I want to be close band am prepared to stay in a hotel- but don’t want to get in the way- any advice?
Thank you so much for your input- I am so grateful
L
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Hi @Lainers57 I love the word cubs, I think my one must be a venture scout by now.
It is natural to fear the worst and have the ‘what if’s’ whizzing around.
I always say my emotions and thoughts have been on high alert ever since I was diagnosed, I can cry at the drop of a hat now.
Although no substitute for being with your son physically he does seem to keep you in the loop
Perhaps phase your question as you have to us and ask them now.
You might not be needed right away, but you can say the offer is there.
It is just an idea.
Try and do something nice for yourself, I am a great walker, and a real treat would be an ice cream, however a coffee or a hot chocolate with friends does me a world of good too. xx
Hi Erica
Thanks once more for reminding me that I do t have to deal with this alone.
I’m sittting in the sun right now looking out over the estuary and thinking about my boy.
The tears are under control right now and I know he’s having a nice weekend with his sister.
I just hope that he soon realises that family is important to his health and well being.
Although I don’t see them very often- I know they are there- but now his world has been whipped apart and his plans and dreams need serious adjustment- just seems so unfair.
I have to believe he will be around for many years to come.
Still can’t believe this is happening.
I’m sure time will prove to be a great adjuster for all of us.
Hope you’re seeing the sun today
L x
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Hello,
My mum is really struggling with my MM diagnosis which I got 12 weeks ago now aged 52. She was diagnosed with Breast cancer in January so I have been supporting her and now she is worried about me.
I’m doing ok and initial chemo is doing the job and my levels have fallen to 5.2 from 28.2 in 9 weeks. Stem cell transplant next.
It will take a while for it to sink in for your son and I found the days I was in pain from my back was worse than the chemo but now at 11-12 weeks after diagnosis I feel quite good - yes I have tired days but I’m doing ok. Try not to worry to much he’s young and once he gets his head round it he will manage it. What I find is the hardest part is the worry it causes everyone else when you just want normality. I encourage people to get on with their precious lives and if I need support I’ll ask for it. I keep normality for my grandsons and daughters, I’m even going to get them to shave my hair off before the transplant so they can have some fun with it and it to not be such a shock when I lose it.
Try not to worry the treatment has improved and he’s young. He will want you to get on with your life and just check in - he knows where you are. Wishing you and your son well again.
Dawn
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Hi there
Thank you for your comments- your strength shines through.
I’m so sorry you have to deal cope with your mums diagnosis as well as your own.
Thank you for expressing your perspective- it will really help me to stand back a bit from the situation.
I wish you all the best and hope you and your mum get through such a challenging time- please keep me updated
In my thoughts
L
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