Hi my first time on here, My real name is Ian I have non-Hodgkin's Lymphoma.

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Not coping well at the moment

  • I feel I’m trying to help my loved ones by being strong but inside I’m scared of what’s to come. Having said that I’m not sure what’s to come, there seems to be so much that could or could not happen at the moment .I have had a course of 12 radiotherapy sessions that took away the area of cancer , although recently had another small area removed surgically and confirmed it was back again not sure if chemo is next. I’m becoming more protective of family and a little paranoid without trying to upset family by being positive.

  • Stay strong ian  I've had 2 rounds of chemo for nhl feeling a bit rough but will be worth it in the long run hopefully just remember talking will help

  • Hi Ian   and a warm welcome to this corner of 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 Follicular Lymphoma (FLbut I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable other type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

    Although incurable, FL is very treatable with very good results and if required a good number of different levels of treatment.

    I have had a shed load of treatments over my 23 years (see my story below) and it was all do-able. I just turned 67 back in November and I am living as good a life as any 67 year old can live.

    There is definitely a place to be positive as unlike many other cancers, your FL is very treatable with great results.

    I talk regularly with people who have lived and been treated for FL and are years down the road doing very well.

    We are always around to help and chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Ian it is a journey we are all on however stay strong and positive I have stage 4 nhl and had 2 rounds of chemo so far.. it is rough however I do know them at them days are not there all the time good days do come… and I have found talking to people and just chatting on here helps too. Take time for urself too and rest when you can 

  • Hi thanks everyone trying to stay positive. If I could ask a question how long did it take to get to stage 4 and at what stage does chemotherapy start. How do you feel when you get there before chemotherapy.

  • Bless you it is not easy yes I am on my second chemotherapy as well and I find the white blood cell injections not very nice they give bone pain and facial pain hopefully we will all recover and look back at this sending best wishes

  • I am stage 4 non-Hodgkin's lymphoma follicular started having pains in June and I'm now on my second chemotherapy yes it is nerve-wracking going for your first chemotherapy but hopefully I will be ok sending much love to you

  • Thankyou, Doctors not saying much but I feel ok atm I feel like no one is asking me about it , it’s almost surreal I suppose I am just afraid of the unknown and i’m trying not to seem any different from how I have always been. I’ve always been the one fixing things and helping everyone can’t imagine being the one getting the help.

  • I had pains from early November time.. went for scans and more scans then biopsy and found out in December that I had stage 4 nhl follicular cancer, I then started 1st chemo beg January so very quick for me. I thought I was in a good place at 1st chemo but it was actually hell alot worse than I expected and ended up back in hospital as had bad reaction to the drug… my 2nd chemo was a lot better I still hate the leading up to them bloods.. then I have a day and a half of chemo so very draining. 

  • My diagnosis was 2years ago last January. Time flys by so quickly