I have cll I’m 33 found out due to blood work that was requested due to my reason for emergency app was I felt lumps in my groin and following ongoing infections with the shockingly drenching night sweats I was at my ends meat. I have to change my bedding everyday mattress protected included. . I have always bruised like a peach since I can remember and if I had a cut it bled for a long long time. I presented to my docs nearly two years ago as I was so fed up with looking like a battered wife.. I was previously in an extremely dangerous dv relationship so the no explanation bruising especially all over my lower limbs triggered my ptsd and I begged for help as I was out of that relationship and I was scared. Docs upped my meds for ptsd anxiety and depression. I met other drs and then was sent for a bone marrow biopsy. And OMG awful. So long story short, the dr and I sit in his office e and he tells me there is an issue with my wbc production as well as platelet and he believes I have a form of leukaemia. Best news being it is slow slow slow progressing and as I’m so young he had every reason to believe il live a long happy life I was 32 at time. But anyway I asked just to get it done with. Do what had to be done. He explained the watch and wait scenario to me.
I went for two biopsy’s of my stomach in past month and got - wee bit bad news but we don’t know how bad?? Is everything ok ?
I was previously diagnosed with bulimia which is hard for me to control especially when I am so easy overstimulated I’m doing well though. I’ve now been informed I now have. A “tumour” at the bottom of my food pipe which docs believe it malignant after two biopsy’s.
am I simple?? Like please whoever reads this pleSeeeee tell me if I’m being while annoying and extremely silly. It’s
since I joined this support page I have finally accepted I was and still am in a very much stage of denial.
Hi Mc77 and I see it’s your first post so a warm welcome to this corner of the Community although I am sorry to see folks joining us and sorry to hear about your CLL diagnosis.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Chronic lymphocytic leukaemia (CLL) but I understand this journey rather well as I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable, slow growing but treatable type of Cutaneous T-Cell Non Hodgkins Lymphoma (NHL)…… eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges.
Although CLL has the word ‘Leukaemia’ in it, in Heamatology terms it actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say.
This is why CLL, SLL and HCL have a group on their own on this community……. use the link below to find the group.
……. as talking with others with the same condition can help a lot.
This group is not busy but worth having a look.
I would recommend you also check out Lymphoma Action.
Lymphoma Action is the only UK Lymphoma, CLL, SLL and HCL Specific Charity who have lots of good reliable information, videos…… basically all things relating to your condition....... pre, during and post treatment..
Lymphoma Action run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with others who have walked the journey. I also volunteer for Lymphoma Action and regularly talk with folks who are living with CLL, SLL and HCL.
They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey.
They also have a 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.
I am always around to help more, just to chat and to answer questions.
