[nikkihamiltonParticipant]

Hi Andy

Thanks for the info it’s very helpful. Trying to understand the disease is hard for me but the way you word it is much easier to get my head round.

I think the dr is letting me go swimming as I’m feeling so depressed about it all and it will make me feel better. Mind you I haven’t had the energy to go yet. Dex days today and tomorrow so they should help.

The life expectancy he has mentioned twice and also in my letter, but both me and my husband are thinking the stats are poor due to the majority of people with the disease being over 60. One lovely lady on here Jane is still fighting 18 years on. This really pleased me and has given me a lot of hope.

Hope you got a good sleep and thanks again

Nikki

[nikkihamiltonParticipant]

The support on here is truly amazing. Such inspirational stories.

Thank you Jane for giving us hope. To be still fighting 18 years on is just brilliant. When I think of the time they’ve told me (4-5 yrs) I’m going remember your message and try to be positive. My husband was a bit unsure of me using the forum but when I read him that he’s changed his mind.

Hi Chrissie. I’m really sorry you to are going through this. It really is life changing. Like you said we have to take One day at a time. I’m going to try thinking like that. At the moment all I can see is no future.  I hope you have lots of friends and family there to support you.

Thank you Julie for the info on the stem cell transplant, I haven’t got a clue. I feel like I’m being so vein to be worrying about hair loss but to begin with it was my main worry. Ridiculous I know. Thanks for the reassurance.

Thanks Sarah. I do have a Macmillan nurse who I’ll be seeing tomorrow so I think I will have a chat with her. Only thing is I just know  going to start crying as soon as I do. I’m so blinking emotional but I’m sure she’s dealt with that before.

Good luck to you all. Tomorrow I will be back up the hospital. Starting a new trial for my bone infusion then my chemo

Nikki

[nikkihamiltonParticipant]

Morning friends

Robbo I’m sorry to hear what your going through. It’s a tough time and the not knowing is so scary. Good luck for your meeting.

For me Friday was a crap day. It started with a letter copied to me from my specialist to my doctor telling him my diagnosis and prognosis. It’s felt like I’d been told all over again.  My meeting with the specialist was a mixed bag. He said my myeloma is at stage 2 and the bone biopsy came back with 90% bad cells. I was shocked by this and thought I had bone cancer as well but he assured me I haven’t. Still don’t really understand it. Any thoughts ??

The good news was I can go swimming. As long as its not too packed. Thank god I hate not doing any exercise and the steroids are making me feel fat. Also he told me I will have a 6 week gap between chemo ending and stem cell transplant so I can get my hair and eyebrows sorted then. Was panicking a bit about that.

Martin I’m really pleased for you that it’s not active at the moment. Thank you for your positive thoughts.

Hope everyone’s feeling well today

nikki

 

[nikkihamiltonParticipant]

Hi Dawn

its very scary but you’ve come to the right place. Any questions will be answered I should think. Try not to google. That’s the mistake I made.

I was diagnosed multiple myeloma 3 1/2 weeks ago and am still in shock. I only plucked up the courage to come on here yesterday. So well done you. Hopefully you’ll feel like me and another hurdle jumped.

Im 43 and reasonable healthy lol. Don’t fit the category but after reading other people’s stories its given me hope.

Good luck and if I can help I will. It definitely helps to discuss it. Or it does me at the mo. it’s the not knowing.

Nikki

[nikkihamiltonParticipant]

Thank you Mandy and Andy. It’s great talking to people with the same disease. It’s really helping me.  I’m going to make sure I drink more water. I’m drinking everything but water at the mo and the steroids are making me hungry all the time.

The last time I saw the specialist was when he confirmed it was myeloma so I think my mind is in overdrive thinking its gonna be more bad news. If it could be any worse that is. It’s the not knowing what’s going on in Your own body.

Thanks again. Hope your all feeling good today xxx

[nikkihamiltonParticipant]

Morning Keith Andy Wendy and Martin,

thanks so much for the replies. The steroids have given me insomnia so up at 4 am.

I know that this site is definitely going to help me. Hearing inspirational stories and reading accurate info has gotta be my way forward. For the past 3 weeks I’ve felt like a dark cloud is following me everywhere and all seems doom and gloom. But for me, posting on this forum is another hurdle jumped.

Martin you will probably be feeling the same. It’s just such a shock. It took me 2 weeks to get over that. I’m now coming to terms with it a bit better but its still shocking. I hope you are feeling ok and check on here if u have any questions. . It’s only been 3 weeks for me. I’ve had first chemo cycle, 3 sessions of velcade and pils and one bone infusion but if u want any info on that let me know.

I am getting nervous about a meeting I have tomorrow with my specialist at the Churchill in Oxford. When I was originally diagnosed it was from a bone marrow biopsy. At the same time they took a piece of bone. I will get the results for this tomorrow and all I can think of is “what if its in my bone as well ?”  Any thoughts on this anyone ?

Thanks again for your replies. It means a lot.

Nikki x

[nikkihamiltonParticipant]

Thanks Julie x

[nikkihamiltonParticipant]

Hi Julie

Many thanks for you reply.  Your the first person I’ve spoke to who has the same type of cancer.  It doesn’t seem a very common cancer and trying to get my head around it is a nightmare.  When I read all the paperwork they give you from the hospital and it tells you who falls into the category, it just doesn’t make sense.  I’m a 43 year old healthy, youngish woman.

I started chemo 3 weeks ago so have just completed my first cycle. Luckily no side effects as yet, just tiredness.  The multiple myeloma I have is in my spine, where is yours ?  Did you have to have a stem cell transplant ?  Theyve told me I wont lose my hair until I have the transplant.

I think it will be good for me to just read peoples questions and answer on this forum.  I googled something the other day and I really wish I hadn’t. It’s the not knowing what the future has for me.

Thanks again for making me feel welcome xx

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