Not sure how to tell our own kids
Hi Vespa and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about diagnosis.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of this journey well.
Myeloma is an incurable type of blood cancer but like my type it has many levels of treatment available. Treatments will be based on how your condition is presenting and the Bibe Marrow Biopsy will give a good indication as to what treatments are best at this moment.
Let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
You can ask the group members what they said to their kids, my girls were in their mid to late teens when zi was diagnosed so I basically told them the truth that I had a cancer that was very treatable and I was going to live a normal-ish life but from time to time I would have treatments that would make me poorly……. but if you kids are young their ability to understand this will be different.
Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00’ where you will find one of team there to help you out.
We also have our Ask an Expert section but do allow a few working days for a reply.
For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332
Always around to help more or just to chat.
Until you get a clear diagnosis and treatment plan you don’t actually know what your journey is going to be like. Some people will start with first level treatment but others may have to have start on slightly more escalated treatment but there are a number of treatment options.
Well done getting this out as it takes some of the stress away from you and also allowed the family to support you better.
Are you cancelling the trip based on you going into treatment?
Ah as my oldest granddaughter would say “pants grandad”
