My son who is in his 20's was diagnosed 2 months ago with high grade non Hodgkins. He's amazing and just gets on with it but I feel like I'm falling to pieces and am struggling to cope on a day to day basis. I've got a wonderful husband - his step dad - and friends and colleagues but I feel 2 months in everyone thinks I should be over the shock and adjusting to the new norm, but every week seems to bring something new and frightening. I'm so scared of what the future holds and although I try to put a brave face on it in front of my son, I regularly break down when he's not there. I'm struggling to cope with work, I just want to be at home with him and am so exhausted with the worry of it all. Can anyone give me any advice on how to be stronger for his sake?
I'm so sorry to hear about your son. I can only imagine how hard it must be to see your son go through this. I wish I had more to say but I am not the right person to help you although I do know someone who might be. She's been through a similar diagnosis, I believe, with her daughter and they are now out the other side and living happy and healthy lives. Her user name is moomy and this mention here should, I hope, alert her. She's active in the Hodgkins Lymphoma Group - click on the highlighted text and it will take you there and you can start another discussion there as you might find more people in the same boat.
I'm sorry not to be more able to provide the support you need here - but I hope this will help you find what you need. It is so important to get emotional support at this tough time.
I wish you all the best
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Hi Emmy so sorry to hear about your son. Any diagnosis when it is your child is devastating. My daughter was diagnosed just 2 years ago with an incurable grade 3 brain tumour at the age of 43. Our world fell apart. She went on to have tumour removed followed be radio and chemo. In all honesty I really do not know how we we managed our emotions during the early days. Not much help I know all I can say is we did get through it. I cried a lot with my husband but never with my daughter. She became our strength, she remains positive never lost her sense of humour and dealt with her 3 boys amazingly. After 6 months I was struggling to cope. Through my GP I started counselling at our local hospice. I could not have got to the point we are at today without it. It not only helped me to deal with my emotions but how to listen to my daughter and talk about her needs as well as mine.
We are now 2 years on and she is well and still positive. She had to finish work but is coping well. We have all been away together and the two of us are going away for a short break next week. We live every day to the full. Hope this helps just a little xx
Hi Danum, thanks for your reply, it's helpful just to hear about how others have coped in similar situation. I've thought about going to gp. I have ups and downs, when I'm down I can't face it, when I'm up I think I don't need it. I'm so glad to hear your daughter is going strong. I need to hear positive stories, they always make me feel better. Xx
Thanks for your reply, just being able to express myself knowing other people will understand has helped. xx
I'm so sorry I didn't see this earlier, the alert systems don't always work that well!
But yes, Daloni is right, we've been through such a lot with our daughter, her lymphoma proved to be chemo resistant, radiotherapy didn't help either, but her third trial drug, an immunotherapy, did and got her to the point where she could go through a donor bone marrow transplant. She's now over 5 years in remission.
It's tough, you blame yourself as a parent, you want to take every bit of bad news and suffering away from them, but it doesn't happen that way, sadly.
I think what helped was the understanding and support from this site, the Lymphima Association (lovely and helpful in the phone but a smaller charity than this one, they offer support groups and a buddy scheme to help) on 0808 808 5555. We also had a local Macmillan nurse counsellor who was there if we needed. (Daughter lives around 150 miles away)
Please do pop into one of the lymphoma groups on here, I'm mostly in the Hodgkins ones, plus the stem cell transplant group, John (johnr) looks after the non Hodgkin's ones. There are some overlaps but not that many. Whatever happens, please do keep posting!
Hi moomy, thanks for your reply, I've only just seen it. I'm glad to hear your daughter is now well having been through all that, positive news stories are really helpful.
Since I last posted my son has had another week long spell in hospital with an infection. That's the second time is that normal?
It's good to hear there are other alternatives to Chemo, my son is due his 4th round this week then he's having a scan to find out if it's working. This is my biggest fear that they're going to say it's not doing anything.
I have been looking on the NHL forum here and see that what my son is having is the same as most others posting on there. I have a couple of specific questions which I will post on there.
Thanks again xxx
Hi again Emmy,
Yes, sadly infections are relatively common, the age group your son is in do have loads of contacts who will have infections to spare and donate!
For NHL, Rituximab is one of the excellent drugs which has helped many, for daughter with HL, it was Brentuximab which turned her corner. Unfortunately it proved so relatively expensive that I suspect the NHS will withdraw it. It is relatively rarely needed.
Hope you're posting in the NHL group, and certainly reading.
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