Hi all. I'm Carol, married to Hywel the long-suffering for 31 years, we have 3 grown-up children and 5 grandchildren, 3 living with us. My story starts with a small swollen gland under my jaw back in February. I just ignored it. A pea-sized lump didn't seem to matter. In late May, as it had grown to be easily visible, I went to the Dr. He said he would refer me to ENT, and I came home thinking that it would take months. 36 hours later I saw the consultant in our local hospital. Over the next 3 weeks, I had a CT Scan, MRI, ultrasound and biopsy done. Diagnosed with low grade NHL. Then got sent for a PET scan, which indicated spread to my lungs and bones. So had a bone biopsy done. Mid September, I was told it was stage 4. 2 weeks later, I started chemo and targeted immunotherapy. Just finished my 2nd cycle (actually only part of the 2nd due to a reaction to meds), and I'm feeling ok. My husband isn't coping well at all, in fact today is the first time he has said cancer to me, I think that he thinks that if he doesn't acknowledge it, it doesn't exist. Looking forward to chatting with people who have "been there and done that" and others who, like me, are finding this a bit overwhelming
Hi Carol FlorenceJ and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our Lymphoma groups. I was diagnosed way back in 1999 with a rare incurable but treatable type of Low Grade skin NHL Stage 4a so I understand this journey rather well unfortunately.
Your journey is not that unusual but good that you were diagnosed quickly and treatment was started.
Your husband is coping with this his way but the more you talk about this the more control you both will have. My story is rather long and completed (hit my Community name for my story) but I am in remission and living a great life.
The word cancer can bring lots of emotions and often people will reflect on 'stories' of other people and stories they have read that takes them down a rabbit trail that brings dark thoughts - but when it comes to NHL we are dealing with a totally different story with totally different outcomes.
You may want to check out Lymphoma Action, a small active UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma support groups and indeed a great Lymphoma Buddy Service.
What type of low read NHL do you have?
What is the exact name of the treatments you are having.
Information like this can help us bring more informed support.
Always around to help out ((hugs))
O & B is an effective treatment and there are number of members have been on it.
Low grade is indeed a slow growing type of NHL and like my type, is incurable but very treatable so lots of hope. I have just been on a Scottish online Support Group and there were a good number of folks with low grade on tonight and most are out from treatment and are doing great so even more hope.
