New to this - my diagnosis is Myeloma- which has fractured my spine

Hi Dawn Dawnofanewday1970 and a very warm welcome to the Macmillan Community but sorry to hear about your diagnosis and journey so far.

I am Mike and I help out around our various blood cancer groups…… for me I have been on my journey with 2 very rare types of T-Cell Lymphomas first diagnosed in 1999 and now over 25 years into this rollercoaster….. but I am still here living a good life.

Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot.

The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated Myeloma Support Group.

This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support. To connect in with the group please click on the link below…….

   Myeloma

……. and once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.

You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.

You can copy and paste the text from this post into your new post.

Do get back to me if you need further help navigating the community ((hugs))

That's great thank you for the advice 

Dawn

Hi Mike,

Thanks for the reply and great info, I am struggling around this website at moment so will take on your information and try to navigate!

Thank you for sharing a bit about your journey,  as you can imagine 2 weeks ago I had never heard of myeloma,  now there is so much to learn! Its very daunting but I do feel there are positives. Obviously the treatment scares me but ive started it and im keeping strong,  very early days. 

Thanks again for advice and info, it's good to speak to people living with it who were once where I am now

Cheers 

Dawn

Good morning Dawn…… it looks like you are doing just fine around the Community as I see you have already joined the Myeloma group, put up a post and received a few reply’s.

You will get a hang of the community….. it’s like a long corridor with rooms going left and right…… there are over 96 different groups (rooms) with 60 groups (rooms) covering all the different cancer types…,,,, and 36 Groups (rooms) covering the general aspects of the  journey - you can explore this area by clicks MF in this link > Cancer Experiences Group

The main thing to remember is you have ‘your’ area of the community where you will find the groups you have joined and the posts you have put up…… just click on your community name Dawnofanewday1970 and this opens the door to your part of the site

It is all very confusing in the early days but the more you talk the more you will learn l…..

In way of some encouragement…… I was diagnosed in 1999 age 44 with one of the rare (8 in a million) hard to treat incurable types of slow growing Low-Grade NHLs - Cutaneous T-Cell (a rare type of skin NHL) when our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various skin treatments treatments over these first 14 years then in late 2013 a second rare (4 in a million) more aggressive fast growing High-Grade NHL - Peripheral T-Cell NHL came along taking me to stage 4……. but this was all remained very treatable.

So I had some intensive treatment between late 2013 to late 2015 (chemo, radiotherapy and 2 Allograft (donor) Stem Cell Transplants)…….  but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 70 at the end of this year and I am now 9 years 9 month since my last treatment.

I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done.
((hugs))