I dont know how this works at all. I got diagnosed 3 days ago, i am 35 years old and have a little boy. Im scared of what will happen to me and how i will take care of him. I had covid in January and I suspect thats triggered this to get worse im waiting for a CT scan and im very worried. Since my diagnosis i now have pain in my bones, burning shoulder pain and puffiness around the joints. Is this in my head or actually happening. Im struggling to stay positive. I’ve gone through shock anger and self pity. Reading and searching on google. Theres no cure. Theres no cure.
Hi@Jahan86,welcome to the forum I can hear your distress and so many unanswered questions going through your mind ,you have come to the right place for support.You didnt say what your diagnosis was .If you have been googling not all web sites give the right or best information which will add to your anxiety.BCUK website has a lot of information to help and you can speak on the phone to one of the Nurses .There will be others on here who can offer you support ,everyone has a different diagnosis .Do you have any family support to help you ?I hear your worry about your little boy,all the emotions you are going through are perfectly understandable .I am sorry to hear that your going through so much discomfort and how is your Consultant and GP helping with this.Please think of calling the helpline you have done well to reach out, .
I am sending good wishes.
It is Chronic lymphocytic leukaemia (CLL) but I’m waiting for this to
Determine what stage its at which is what’s worrying me.
Hi@Jahan86,thank you for posting your diagnosis that helps me to understand so that I can say to you there are others on here with Chronic lymphocytic leukaemia (CLL) and so far as I read it is a chronic condition and can be managed so I can see that you are waiting and wondering over the next 3 days,.Please try not to worry easier said than done and if you could get some releif from your symptoms im sure that would help if you give your GP a call if you can .
You didnt say how old your little boy was but he’ll be there drawing you along as children do meantime look after yourself and keep posting .
Hi @Jahan86 I am so glad that you have found our support forum.
I can also feel the very natural shock, fear, anxiety, anger, self pity, questions etc coming from your post.
I felt in a very isolated, lonely bubble this fears, thoughts and emotions whirring around thinking I was the only person in the world in my situation for quite a while
I also have Chronic lymphocytic leukaemia (CLL), I was diagnosed at 53yrs, 18 yrs ago and I have been a very lucky girl and never had any treatment, others might have treatment straight away. I have a friend in the US who was diagnosed at the same time as me, had treatment straight away and leads an extremely active life.
I don’t want to repeat the brilliant advice from @Bannanacake but Blood Cancer UK are there for you, their website and support line and we are here for you on our forum.
I am on ‘watch and wait’ or ‘active monitoring’ which means I have blood tests and perhaps other tests at regular intervals and in person or telephone appointments with my GP/Consultant.
There is no cure, currently, but research and treatments are coming along in leaps and bounds, and many of us live with it and manage it’s side effects.
However before your next appointment you have the time to write down all your symptoms, fears, thoughts, questions, practicalities, medications, allergies, family history etc, so you cover them at your appointment.
Obviously your main concern is your little boy, do you have any support from family and friends, however you are now part of our forum family.
Please keep posting how you are getting on, look after yourself and be ever so kind to yourself
Dear @Jahan86, thank you for posting on the Forum and I do hope you feel supported here? It is such a stressful time when you are just diagnosed and I am sure you have so many questions. Do you have another appointment with the Haematology team so that you can ask these important questions? I am sure you will have some written information but if not here is our information on Chronic lymphocytic leukaemia (CLL), Chronic lymphocytic leukaemia (CLL) - what is it, symptoms and treatment | Blood Cancer UK, as you receive more information you can look more deeply but I would avoid too much internet searching until you know your treatment/monitoring plan. Please do call us on the phone line if you would like to talk this through Blood cancer information and support by phone and email | Blood Cancer UK Take care Gemma
Hi @Jahan86 there are no cures for a lot of the conditions that people on this forum have got but it doesn’t mean that you can’t have years of normal life and get on with things. I’m currently 3 years in remission with Myeloma and take every day I’m able to do things as a positive. I know though that you’re very anxious and understandably so. You will have a medial team to answer your questions as well as the superb support provided by BCUK and the people on this forum when you need to talk. Let us know how you get on.