Hi, I was diagnosed in December last year with MDS blood cancer, my IPSS-M score is moderately high. I have two children aged 24 and 20. My 24 year old is very stressed, he has his own health issues, which are being treated, and has sought help for stress and anxiety over this recently. Horrifically, he had a tonic clonic seizure last week, of unknown origin and I’m concerned that was due to stress; he’s my main support. My 20 year old is avoiding, but claiming he isn’t, sometimes using humour, sometimes angrily. He doesn’t enquire about me or my appointments, he doesn’t look me in the eye when we talk, which is rare, it’s more just passing comments at each other. He also doesn’t come near me. He has health issues he is avoiding too, needing medical help and not getting it. Four years ago my husband died of adenocarcinoma after a very short and traumatic battle, my kids were the same then and I’ve no doubt they are traumatised. Last year my mum was diagnosed with a return of her breast cancer from 20 years ago and we are close. I am dealing with my cancer fine and everyone else in my life seems to be getting on with their own lives, so I don’t worry about it affecting them. I will take all the opportunities I can to beat it and I will accept defeat if I need to; I’m at peace, I just don’t know how to help my kids. If anyone has relatable experiences or can offer em any hope, I’d be so grateful; thank you!
Hi VeganCookie and a very warm welcome to the Community but sorry to hear about your MDS diagnoses and your challenges at home.
I am Mike and I help out around our various Blood Cancer groups. I don’t have MDS but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma / Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.
Although I have no experience with regards to the challenges you are having with your children.
The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated MDS support group. This 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 click on this link 
MDS/MPN/ET/PV/myelofibrosis (MF)
..... I do see that you have joined our dedicated Stem Cell Transplant (SCT) support group..... I know this journey rather well as I have had 2 Allo (donour) SCTs.
…… once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow 3 working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.
Do get back to me if you need further help navigating the community.
