I was diagnosed with Chronic lymphocytic leukaemia (CLL) early last week and I have been reeling ever since.
I had a series of blood tests at the beginning of this year, these were repeated in the middle of March.
I went along to the appointment with the Consultant last week not unduly worried but as I sat waiting to see her, I was suddenly overwhelmed with anxiety.
She explained everything so well and initially referred to it as a blood disorder which I found so much less anxiety-inducing than the dreaded âCâ word or âLâ word.
My white blood cell count is 14 and she assured me that no treatment is needed at this stage and I would be on the âwatch and waitâ programme - 6 months to wait before having a telephone appointment with her after more blood tests.
I got into the car having seen her and it hit me like a ton of bricks.
I have no symptoms at the moment, the more thorough blood tests were needed after regular blood tests indicated a raised white blood cell count.
I am struggling to process it, I feel fit and healthy, have always eaten sensibly, walk every day and have never smoked or hardly drunk in my life.
I feel as though Iâm on a rollercoaster with my emotions. At the moment, I donât want to breathe a word of it to anyone, except my partner who is the only one who knows.
I am just hoping and praying that I can be one of the fortunate ones who can live 20 more years with no need for any treatment.
I am truly very scared for the future but trying with every fibre in my body to remain positive, really hard though it is.
Welcome to the forum @Flo61 . Youâre not alone in this, and weâre a supportive community here at Blood Cancer UK. It takes time to process a diagnosis like Chronic Lymphocytic Leukaemia (Chronic lymphocytic leukaemia (CLL)), and the âwatch and waitâ . Itâs tough to reconcile feeling well with having a blood cancer diagnosis.
It sounds like youâve been on quite the emotional journey since your diagnosis last week. Itâs completely understandable that youâre feeling overwhelmed and scared right now. That moment in the car, when the reality hits, is something many of us here can relate to.
Itâs good that you have your partner to lean on. Sharing with someone close can make a real difference.
When and if you feel ready, this forum is also a safe space to share your feelings and connect with others who understand what youâre going through.
To help you find more information and support specifically for Chronic lymphocytic leukaemia (CLL), here are a couple of useful links from the Blood Cancer UK:
If youâd like to speak with someone directly, either for information or just for a listening ear, you can find the contact details for Blood Cancer UKâs support line here: Blood Cancer UK | We're here to beat blood cancer
You can call Blood Cancer UK for free on 0808 2080 888.
Please donât hesitate to reach out to them if you need support or have any questions. Theyâre there to help.
Itâs completely normal to feel a rollercoaster of emotions right now â fear, hope, confusion, and everything in between. Please be kind to yourself and allow yourself time to process everything.
There are many people living well with Chronic lymphocytic leukaemia (CLL) for many years, and while itâs natural to worry about the future, try to take things one step at a time.
Weâre here for you, so please do reach out and share whenever you feel ready. You donât have to go through this alone.
Iâm so sorry that you have been through so much, I really am.
Iâve always felt sort of invincible and this diagnosis has come as a huge shock.
Iâve lost 3 close friends to cancer in the last few years (2 with breast cancer, 1 with liver cancer) so I donât know why I feel so shocked. I keep asking myself âwhy meâ but equally âwhy not meâ âŚ
I feel I have been through so much in my life already. I was just hoping for a stress-free few years and now this. However, I do realise there are many, many people going through far worse - and I am blessed with a very supportive partner, 2 daughters who I am very close to, an adorable Grandson, some very close friends, as well as my fur-babies.
I do keep reminding myself of all the positive things in my life and trying my hardest not to focus on all the negatives.
Thank you again for your much-appreciated e-mail with the various links.
Hi @Flo61 I can hardly follow @Jules brilliant response.
A great big welcome to our support forum.
I felt it was quite spooky reading your 2 posts as it could have been me writing them apart from the adorable grandson and a house full of dogs.
I was diagnosed at 53yrs old, 21 yrs ago and I have Chronic lymphocytic leukaemia (CLL), and I have always been on active monitoring (watch and wait).
I was the invincible, capable one who did not drink or smoke.
It took me a long time for the shock to subside and for me to come to terms with my diagnosis.
Yes, try and take it a day at a time but when you are in shock you are bound to think about the âwhy meâsâ and âwhat ifâsâ and a rollercoaster of emotions, often conflicting
It gave me the opportunity to look at my life and what did I want out of it and with whom.
I decided the best things in life were free like good family and friends. music, nature.
I am now a Pilates girl and great walker.
You say that you have no symptoms so, in the words of Rod Stewart 'live the life you love, and love the life you live.
Be very kind to yourself and please do let us know how you get on, I am going out for a walk by the river now.
I am overwhelmed with the kindness of both yourself and Jules âŚ..
I find it incredible that you remain on the âwatch and waitâ programme after 21 years but really feel for you that you were only 53 when diagnosed and you have had all these years of uncertainty.
I so empathise with all you have said âŚ.. family, good friends, music, nature - and of course, a houseful of dogs - are my greatest loves in life (and always have been).
I especially love the words you quoted from Rod Stewart, thank you so much - I particularly love his music, I always have done.
Thank you so much again, take good care - and enjoy your walk by the river âŚâŚ.
@Flo61
My second ultra sound biopsy result was Chronic lymphocytic leukaemia (CLL)/Small lymphocytic lymphoma (SLL) from a phone call, i havenât see any haematology yet till 29th this april.
Iâm same situation to you but my work they know and some of my family. Iâm trying to be strong expecially leaving alone.
So sorry to hear you are going through the same/similar Jackie. Itâs a bewildering time isnât it.
I am still trying to process my diagnosis a week ago and it just doesnât seem real, I almost feel that this canât be happening to me if that makes sense.