Hello

Hi again Lanijane22 and well done navigating across to this little corner of the community.

As I said in your first post in the New to Community I was diagnosed way back in 1999 at 43 with my rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. then I reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

What type of NHL do you have?

Are you have or have had treatment?

This is a hard time for you especially as you are having to look after your mum…… make sure you access all the support there is available to help lighten the load.

This group is here for you to chat and get support….. but may also want to check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms both for patients..... I highly recommend these groups as there is nothing better than ‘talking’ with other who have walked the journey.

They also have a great Buddy Service where you can be linked up with someone who has walked the same treatment journey as yourself….  It’s a friendly voice at the end of the phone.

Lymphoma Action have a Lymphoma helpline on 0808 808 5555 open every week day from 10 till 3. This is a safe place to talk this through and get support

Thanks Mike, that's very helpful. I have low grade follicular lymphoma in my uterus which I'm told is unusual! I went to see my GP after I started bleeding from the cervix post menopause but this has stopped now. The hospital wanted me to have radiotherapy but I decided to go down a different route and treat myself at home using an alternative therapy. The hospital don't really know what to do with me as they're not used to people asserting power over their own body! I'm very grateful for the NHS and I want to work with them but it's proving to be quite difficult to navigate a way forward with them. The last time I spoke to the haematologist she said they won't keep on scanning me which seems churlish as if I had chosen the radiation then they would scan me afterwards to see if the lump had gone. I do believe the alternative treatment is working (slowly) but without some sort of scan/blood test I won't know if I'm getting better. I've talked to friends about it and they say I should keep pushing the hospital to at least do a blood test on me occasionally. Thanks for listening. I'm sorry to hear about your NHL and I hope you're doing well. Kind regards, Lanijane22

I am doing great Lanijane22 9 years out from treatment and getting on with life.

There is a difficult balance between ‘normal’ NHS treatment and alternative treatment so it will be hard to work ‘with’ the ‘system’

Keep pushing through ((hugs))

That's good to hear you're doing well. Thanks for the hugs - I'll keep pushing!