Newly Diagnosed

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Hello!

I'm Jayne and I was diagnosed with follicular lymphoma on March 1st this year, purely by chance. I was referred on fast track by my GP for an endoscopy after seeing her with constant heartburn even though I take Lansoprozole. That was a big fail and the consultant referred me for a CT scan, I had two within 4 days, one with dye and the other was a barium meal. Two days after the barium meal, I received a call to say they had found that I had enlarged lymph nodes and I was being referred for a biopsy on fast track. A little over three weeks after that biopsy, I got the results... it was follicular lymphoma.

To say I was shocked is an understatement, the only symptom I had was that the day after my dye CT scan, a lump appeared on the back of my head! Since diagnosis it's been a whirlwind of appointments and tests, one of them turning up a kidney problem (again with no symptoms) for which I need another CT scan and possibly a stent fitting. I'm finding it hard to get my head around the fact that I have cancer, but nothing is being done yet as far as treatment is concerned because it's very early stages.

One or two so-called friends have been very dismissive of it, one even questioning me on what treatments I was having if I had cancer? The other saying her husband had a blood disorder, he's fine!  But in the main, my friends have been amazingly supportive. I have two daughters (40 and 34) raised them as a single parent, a gorgeous 11-year-old grandson and a wonderfully supportive man in my life, I'm very lucky in that respect.

We haven't told my grandson what's wrong yet, but we will be soon before he accidentally overhears adults talking and comes to his own conclusions!

  • Hi and welcome, though sorry to see you joining us, the FNHL group is very supportive and when you have time you can read some of the stories of others and just to add your experience is not unusual for a blood cancer. One piece of advice at this stage which helps some but not all is; as your type of lymphoma is slow growing and is only treated when needed, try to think of it as a chronic disease which is treated when it flares up, and when its stable something you can live with. The is lots of information here on the site or on the Lymphoma Action website which is a lymphoma specific charity.  https://lymphoma-action.org.uk

    Any questions just ask and if they decide you do need to start treatment then let us know and we can offer much more advice and support.

    regards

    John 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Hi  just home from my daughters as I work for her on Wednesday and just had my second AZ vaccine. A very odd way to start my post but this is me 31+ years on from first being diagnosed with another low grade NHL..... as my friend John says, see this as living with a chronic (treatable) illness.

    I had a long journey as my type of skin NHL is rather rare and at times challenging....... but I am in remission and doing great (see my profile)

    John has given you a link to Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service.

    We are around to help you navigate this so do come back with your questions at any time.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hello John,

    Thank you for replying. Since diagnosis I've found Lymphoma Action to be amazing, especially their Facebook group. I sent for a booklet to help my grandson too.

    The way I see it, is if you want rainbows, you gotta put up with the rain!  -  Dolly PartonUmbrellaSun with face

  • Hi Mike,

    Thank you for replying. It's been reassuring to read that so many people have FL or a lymphoma and are still here decades after being diagnosed. I joined LA shortly after my diagnosis and yes, they're a wonderful help, especially their Facebook group. I've only just been able to post on here after last visiting in 2009/10 when my dad was diagnosed with pancreatic cancer, my account had been deactivated!

    Take care

    Jayne

    The way I see it, is if you want rainbows, you gotta put up with the rain!  -  Dolly PartonUmbrellaSun with face

  • Good morning Jayne and good to see you are accessing various support platforms. as this does help you navigate the journey and helps you deal with the whirlwind between the ears.

    Each one brings a different flavour of support. The Macmillan Support line is open 8am to 8pm, 7 days a week and you can always put up a post to our Experts in our Ask an Expert section.

    LA is Lymphoma Specific with various opportunities to connect with people with the same condition as yourself..... and you may well bump into John and myself from time to time Wink

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember

    Hi Jayne,

    Just wanted to pop up here to wish you well. My partner was eventually diagnosed with FL a few weeks ago, after tests that started in January. His diagnosis was also completely out of the blue, and was only discovered through an unrelated blood test when he got an eye infection. I'm glad to hear that you have a good support network and although obviously I don't know much about your personal circumstances, I've been reassured to find that FL generally responds well to treatment, and treatment often gives long periods of remission. It became a mantra of sorts for me and my partner, when we both felt scared or overwhelmed, we'd just keep repeating: 'responds well to treatment, long periods of remission'. 

    At the moment he's completely symptomless on watch and wait, so we're settling into a rhythm of regular check-ups, but apart from that trying to just get on with life as normal! This forum was hugely helpful to me when I kind of needed to put things into context, hear other people's experiences and not be blinded by the word: 'Leukaemia'.

    Wishing you all the best x

  • Hi Again, good you found the group it is a good safe place to find support and advice, also just so you know you can also download all the booklets to, though as that one was for your grandson then best he has something to go back to.

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Hello

    The same time frame as me then! It seems to be the same way a lot of people are diagnosed with it, completely by accident. If I hadn't got in touch with the doctor about heartburn, I'd still be oblivious to it.

    I keep saying something similar, mine is "It's cancer, but it's treatable" My only symptom is two lumps on the back of my skull/behind my right ear, other than that, nothing. So I'm also on active monitoring, my first bloods were drawn a fortnight ago and I have another CT scan booked for Monday, but that's for the blocked kidney that turned up in my first ones. If I didn't have a sense of humour I think I'd be in a corner rocking and dribbling Laughing

    Leukaemia? That word hasn't been mentioned to me at all, it's Lymphoma or Follicular Lymphoma or Non-Hodgkin's, I know it's a blood cancer, not a tumour, but cells in lymph nodes. That's how I'm explaining it to my grandson tomorrow, but I won't mention cancer, he's 11, it would terrify him.

    Good luck to your husband, may we both go forward without treatment for a long time to come! x

    The way I see it, is if you want rainbows, you gotta put up with the rain!  -  Dolly PartonUmbrellaSun with face

  • Hello!

    Yes, I downloaded some for me and my daughter, but I wanted him to have something to look at and understand that I'm not going anywhere anytime soon.

    How do I get a quote at the end of my posts please?

    The way I see it, is if you want rainbows, you gotta put up with the rain!  -  Dolly PartonUmbrellaSun with face

  • Hi  

    Hit your Community name.

    This will take you to 'your' information.

    On a phone go to the top right corner and hit the little down pointing arrow then hit your avatar picture or icon when it papers in the green drop down - then look for 'settings'

    On a Computer hit the little avatar picture or icon at the top right then look for 'settings'

    Find 'Signature' then put in what you want and remember to SAVE you changes. 

    Get back to me if you need more help.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge