Hi. I am new to the group

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I moved to turkey last year. I have just been diagnosed with follicular lymphoma stage 3/4 B. Because I have been out of the UK for a year I am not entitled to NHS treatment even though I worked and paid NI all my working life. This also means I cannot be with my family whilst I undergo treatment here in Turkey. I start my chemotherapy next week but feel very alone. My husband is here with me but I struggle to express my fears to him. He won’t deal with this very well and just tells me…your tough. You will be ok. I’m not tough…I’m scared. I would like my daughters, sister, cousins, friends to chat to. Instead I play it down to my kids so as not to worry them.

this is my introduction about me. The normal smiling, reliable wife, mother, grandma Grinning

  • Hi  and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups. 

    I don’t have Follicular Lymphoma (FL) but I was diagnosed way back in 1999 with another type of Low-grade non-Hodgkin lymphoma. But my type is rather rare……I eventually reached Stage 4a so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

    FL is one of the most common types of low grade NHL so this is actually a good thing as there are lots of good treatments available to treat this. 

    You do need to understand that like my type of NHL yours is also see as a life long condition. The treatments used are designed to put your FL into remission but there will always be a chance that it returns but there are many levels of treatment available if required.

    Do you know the name of the chemo you are going to be having?

    This link will help you prepare for your treatment Top Tips for the day of your Chemotherapy

    As to the future…..keep setting your dreams…… I am 23 years into this, I am now getting close to 67 and living as good a life that anyone my age can be living….. and this was after having a massive amount of treatment….. do remember my type is rare and hard to treat so my journey was not the normal journey someone with a low grade NHL will go on (you can see my story by hitting my community name)

    It’s hard to be out if the UK having treatment and not seeing all the family. Your condition is very treatable with great results so take some hope from this our first of many conversations.

    The group is here to listen, support, answer questions as best as we can ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi , I also had chemo for FL stage 4 and I'm now in remission, on maintenance therapy for 2 years (I'm 18 months through that). I had my chemo during lockdown in 2020/21, so that, along with immonusuppression, meant that I couldn't see friends or family apart from my husband and had to communicate with everyone else via WhatsApp. It's not so bad. If you can't talk openly to your husband, how about arranging some online or telephone counselling through either Macmillan or Lymphoma Action? Also, I had far fewer side-effects with chemo than I had been fearing - I had O-CHOP. Wishing you all the very best.