Son living with Hairycell Leukaemia

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 My son  had chemo 3 years ago    and since then  he as to have bloods checked every few months    but every time    a week before hes due to be checked   hes as a complete melt down panick attacs   crying   frightend its come back    then same after  hes had it done waiting for results   fom doctor 

how can I get him  him some help   to talk about his fears

I dread the phone going   I try to talk him through it  but I am 

drained and stressed out    iam  75    years old      

please tell me what I can do      thankyou   

  • Hi  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and to hear about your son’s diagnosis and ongoing journey.

    I am Mike and I help out around our various Blood Cancer groups. I don’t have Hairy Cell Leukemia (HCL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkins Lymphoma eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

    It’s all about learning to live ‘with his’ condition and not letting it define him….. but he needs to take control and define his life.

    We actually do have a dedicated group covering CLL, SLL, HCL this is because these types of blood cancers, although have the word Leukaemia in then, in Heamatology terms, actually come under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say.

    Do join the group and put up a post but the group is not very busy but there may be someone lurking in the background who will reply.

    Do also check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc and cover HCL (All the links are taken from the Lymphoma Action site)

    Lymphoma Action run regular Support Platforms both for patients and fir family members...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

    They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.

    Do check out for a local Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups….. the one I attend does have a few folks with HCL in it so worth checking.

    Always around to help more or just to chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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