Hi All. Just need some support, just had my 3-monthly bloods done and lymphocytes have increased 2400 in 3-months. Got to see my GP on Wednesday but worried about my Chronic lymphocytic leukaemia (CLL) progressing. I’ve also lost a lot of weight over the last year so am feeling really anxious
Oh @Pickle23 I always get so anxious before and during medical appointments and tests.
Also any ache or pain, lump and bump sets me into panic mode.
I would suggest that you write down everything you need to say to your GP.
I am the one who walks into the office and the medical person says to me’ how are you’ and I say ‘Fine’ and my mind goes blank.
My GP always says we will deal with anything when it arises.
It is so natural to feel anxious, but be very kind to yourself and at least you have an appointment for Wednesday, although that probably seem forever away to you.
Please do let us know how you get on, I will be thinking of you and if you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888
Hi @Pickle23. I can imagine you are feeling very anxious - understandably.
I’m glad you don’t have to wait to long for an appointment, although I know it will feel like it forever.
As @Erica said, the support line is there to if you need it.
What have you got planned for the weekend? Have you got people around who will help you through?
Thank you for posting and I am so sorry to hear that you are feeling anxious. It is understandable that you feel this way, may I ask what your GP has advised regarding your blood counts and symptoms? Do you have a contact in the Haematology department you could call regarding your weight loss and concern next week?
I would suggest that you escalate your concerns and symptoms to the GP and the Haematology team (if you can) so that you can be reviewed.
If you would like to talk this through we are here for you: Blood cancer information and support by phone and email | Blood Cancer UK
Hi @Pickle23. How are things?
Hi @Nichola75. Thanks for checking in. I saw my GP last week about my increased lymphocytes and she did a full check, all my other blood results are holding ok at the moment but have got a couple more lymph nodes up in the groin area but she is not concerned as they are quite small. Upset that the lymphocytes have increased a fair bit but will have further checks in 3 months. My liver and spleen are not enlarged which is good. I have to say that when I was first diagnosed I seemed to accept it easier than I am doing lately, I feel more scared and upset than I was last year, I am feeling constantly anxious over everything and don’t feel like I can carry on. It’s the uncertainty of what will happen with the Chronic lymphocytic leukaemia (CLL) and the not knowing. Have got to have a pelvic ultrasound next week due to pelvic pain so that is adding to the stress and worry no doubt. Sorry for the rant!!!
Hi @Pickle23 I have a theory that when I was first diagnosed my body froze and went numb with shock to get me through those first through months.
Your post did not come over as a rant to me and I am so pleased you felt that you could be honest with us.
I think my thoughts and emotions have been on high alert ever since and then Covid times really compounded my them.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 19 yrs ago and I have been on watch and wait (active monitoring) ever since.
I still get very anxious before all tests, results and appointments, we are human, I think it’s natural
I am really sorry that you feel so anxious and that you don’t feel you can carry on.
Do you feel you might like some help?
I told my GP how I was feeling and he gave me several suggestions from medication to counselling and I chose counselling and it really helped me.
My GP also told me that I was more likely to die with my Chronic lymphocytic leukaemia (CLL) than from it.
He also said I was more likely to be run over by a 65 bus, I look at every one of those buses with great suspicion.
As I said the Blood Cancer UK support line is there for you on 0808 2080 888 and also 24/7 the Samaritans on 116 123.
You are also part of our forum family too.
Be very kind to yourself and please let us know how your ultrasound goes.
As @Erica said, I definitely didn’t think it was a rant. I’m really pleased that you feel you can share on the forum. It can be really scary sometimes and I know in the beginning, my anxiety was so high. Active monitoring is difficult. It takes time but it does get a little easier. I needed lots of support so don’t be afraid to ask for help if you need it.
Please keep us updated on how you are doing. Sending lots of love
How are you doing @Pickle23?
Hi @Nichola75 thanks for checking in. I’m struggling if I’m honest, sort of at an angry stage at the moment and just wish there was a treatment now that would get rid of the Chronic lymphocytic leukaemia (CLL). Blood cancer is such a difficult cancer and not very well understood by people. Been feeling a bit more tired than usual since the lymphocytes increased quite a bit and really struggling to sleep which isn’t helping. Just feel lost and scared x
Hi @Pickle23. Thanks for replying. I’m glad you did, especially as things are really tough at the moment. I have lymphoma and understand that feeling of just wanting to get rid of it. It’s so normal to feel anxious on watch and wait. So many of us find the mental challenge harder than the physical challenges and fatigue always makes everything feel harder.
Have you considered any kind of counselling. I know it’s not for everybody but it’s helped me a lot. Also the support line is always there X
Hi @Pickle23 so glad to have heard from you.
The thoughts and emotions that you describe are just how I felt, I remember being so, so angry and wanting to sort off pull the blood cancer out of me.
Why couldn’t I just have some form of treatment, be cured and our lives go back to normal.
I felt that I was the only person in the world with leukaemia, why me?
What would the future be for me if there is no cure?
Do people believe me that I have leukaemia if I am on watch and wait?
I also struggle if I am not sleeping then my thought and emotions really take over.
You are part of our forum family, you are never alone.
I found counselling helped me make sense of it all.
Be ever so kind to yourself and please keep posting and if you would like to talk to someone the Blood Cancer support line is there for you on 0808 2080 888