She's survived, so I should feel happy. Instead, months after she went into remission I still feel sad and anxious a lot of the time. My daughter's cancer turned my life upside down. I don't know how to put this behind me and feel so alone with my feelings. There doesn't seem to be much support for parents of teenage cancer survivors and that makes me feel like I'm weak or selfish to feel how I feel. It's my daughter who should have the feelings. Not me because I didn't have cancer. She did.
Hi SDF1966 and a warm welcome to the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin's Lymphoma but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
I will always say that the journey is as hard or even harder for the family looking on compared to the person in the bed and you are right, access to support for this group of people can be hard to find........ so some suggestions.
The Community is divided into support groups (discussion rooms) so do consider joining our supportive Hodgkin lymphoma group. This is a safe place to talk to others who have had the same treatment experience, to ask questions and get support from family on the same journey..... although there are not a lot of family members posting in the group at the moment. These groups fluctuate as once treatment is finished people move on with life and move on from the groups.
Can I also highlight Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos.
They run regular Lymphoma Online Support Groups for patients but with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey. They also have other ways to connect where you will meet others who have supported children on their journey.
They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
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 aim to give support to all the family.
Please do get back to me if you need further help.
((hugs))
