Hi, I have only just started to look through this website which looks to have lots of useful information.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) in December 2023 after a routine bloodtest which came completely out the blue as I am an otherwise healthly 51 year old. If there is such a thing as good news its that I am in early stages - no symptoms and the consultant thinks i,m a good 5+ years from the point of needing treatment so I am on watch and wait. Like many others the hardest part is telling family and especially teenage children but we did and that was one less thing to stress about. Although often visiting family its like the elephant in the room, they know you have cancer but donât want say anything. Whilst physically no issues, mentally is another thing - good days and bad days, do you plan for the future - âwill I even make retirementâ is often the nagging question.
If anyone on here has had for Chronic lymphocytic leukaemia (CLL) for a long time would be interested what you found helped (or didnt) -anything you wished you had done in early diagnose differently?.
Hi @Ian72 I am so glad that you have found us.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago, when I was 53 yrs old, and coincidently just before Christmas.
I hadnât had a day off sick for nearly 30 yrs.
I had just had a gynae op and had a blood test and the gynaecologist told me I had Chronic lymphocytic leukaemia (CLL) and referred me to my GP.
I have been on watch and wait (active monitoring) ever since.
What I regret is telling my adult son on the phone, because he had no support.
Also I could not explain to others, especially work, what I did not understand myself. They (and me actually) could not understand why I was not being immediately treated, âcuredâ and we would all go back to 'normal.
In hindsight none of us knew how to me, nobody gets a manual on how to behave.
I think it was up to me to get rid of the âelephant in the roomâ and open up the conversations.
I did not realise the mental aspect impact on me, I was in shock for a long while, I felt in a bubble with the world going on around me,
When i came home after I was diagnosed I wrote my will and funeral music.
My mind went round and round with the âwhat ifâsâ and âwhat future have I gotâ etc,
You ask what I found helped or didnât which is an interesting question because I think shock is a process. to come to terms with.
I think diversion of the mind tactics are good.
However I have to say I still get anxious before and during test, results and appointments.
Someone once said to me remember you are exactly the same person you were before you were given your diagnosis.
Over the years In have got to know myself and how I tick, before diagnosis I was more materialistic and went through life on autopilot.
I realised that the best things in life are often free. Good Family and friends, music, reading, walking etc are priceless.
I learnt to say ânoâ and stopped doing thigs that I was not enjoying.
I did have some counselling to help me with the emotional side which helped me.
I learnt to spoil myself and be kind to myself.
I attach the Blood Cancer UK information on Chronic lymphocytic leukaemia (CLL)
Chronic lymphocytic leukaemia (CLL) - what is it, symptoms and treatment | Blood Cancer UK
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Please do feel free to ask me any questions.