Glad I found this forum in the early hours this morning. I was given the news I had Chronic lymphocytic leukaemia (CLL) yesterday afternoon by a local GP after a brief phone call and mad dash to the surgery before it closed. They have offered me a follow up appointment next Tuesday with my wife, but I cant tell her the news. Her support network is mainly me.
Any advice who, how and when to tell people?
I turn 50 on Saturday, family gathering arranged which they are all excited about. I am holding it together at the moment just not sure whether to keep it all to myself till I have met with the hematologist and know more.
I read a few comments about people keeping the knowledge to only a few trusted people. I am conflicted on that and swaying between telling no one and the complete opposite of making it clear to everyone this has happened and am dealing with it so that it is out in the open. Any thoughts on pros & cons of this approach?
Thanks for any advice
Hi@Birnam ,just to say welcome and hallo this the right place to be ,I cant answer on your diagnosis just that I know what a whirl you must be in right now.Others on here do have your diagnosis so I am sure you will get lots of support ,help and advice shortly.Thats great you have a follow up appointment soon so you will have a chance to write down any questions you will have .
If you give the BCUK support helpline a call thats a good start and look for info on their web site,meantime keep posting and take care
Hello @Birnam and welcome to the forum. I am so sorry to hear your story but thank you for sharing. You have done a brave thing in reaching out in this way. I was diagnosed with a different blood cancer many years ago but I can still remember the huge shock and turmoil I felt. Only you can decide how and when to share your news. Like you, I was diagnosed around a significant birthday which made it even harder I think. It will be extra hard for you with the birthday celebrations to get through. My family knew I was having investigations by a haematologist and although I didn’t understand the implications of what I had been told I did share the news with close friends and family. There is no right or wrong way to do it. Feeling for you so much. Please keep posting here as and when you feel able and know we are ‘with’ you and sending warm wishes. Willow
Hello and welcome @Birnam, I am so glad you found the Forum but equally sorry you are having to go through your new diagnosis. You will gain some amazing insight and experince from the wonderful Forum members here so please absorb as much as you can. Ultimately, it is your choice who you tell and really will be based on how comfortable you feel with the information. You may want to wait to tell lots of people around you until you have more details on monitoring and/or treatment plans. I would consider opening up to those closest to you, your wife in particular, as you will need to attend appointments and blood tests at varying points. I am sure she would want to support you through this. You will also need to see a Haematology team which will provide you will extra specialist support and contacts that can really help. For now I can leave you with our information on Chronic lymphocytic leukaemia (CLL) Chronic lymphocytic leukaemia (CLL) - what is it, symptoms and treatment | Blood Cancer UK and do call or email the Support Services team as we would be happy to talk things through with you when ever you are ready How to contact Blood Cancer UK | Blood Cancer UK. Take Care Gemma
Hi @Birnam a great big welcome and I am so glad you have found us so quickly.
I cannot imagine what you are feeling and thinking at the moment. You are probably in complete shock.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) aged 53yrs old and that was 18 yrs ago, I have been a very lucky girl and never had any treatment.
I have been on what is called active monitoring or watch and wait.
Basically that means blood tests and perhaps other tests at intervals and phone or face consultation with someone medical like a GP or Consultant.
The Consultant takes so many factors into account before discussing the way forward.
I have a friend in the USA who was diagnosed at the same time as me and she had treatment straight away.
However you are concerned who to tell and again that is a very personal decision.
What I would say is that your wife, who probably knows you all too well, might sense there is something wrong with you.
Perhaps by taking her with you on Tuesday it might be easier for you both to hear what the GP or Haematologist says.
You also have the bank holiday weekend to start to absorb your shock and perhaps write down your fears and questions alone or together.
Obviously this is all the more difficult with your family gathering for your birthday on Saturday and if you feel you or both of you can hold it together perhaps you might consider getting more information on Tuesday before deciding if you or who you would like to tell or not.
We cannot tell you what to do, the choice is yours.
Be very kind to yourself and please tell us how you get on, you are part of our forum family.
Hi @Birnam and welcome to the forum. Gosh, your mind must me all over the place at the moment. It a very difficult, and personal decision. However, I do agree with the others about telling your wife. It will be really helpful to have somebody attend the appointment with you as from personal experience, you take in very little during the initial stage.
It may be really helpful to give the support line a call to talk things through. Thinking of you
@Bannanacake @GemmaBloodCancerUK @Willow @Nichola75 @Erica
Thank you for your comments - really helpful to know this forum exists and I really appreciate you taking the time to comment. I will read all the links to further advice, and avoid google!
I know she deserves to know and I will tell her but I can’t face it just now, it would make a terrible situation so much worse. Strangely I am not really worried about what will happen to me at the moment, more the impact on those around me so if I get my affairs organised as well as I can at least she will have less to worry about and we may even have a workable plan for whatever the future holds. We only got married 6 months ago so the future we were planning yesterday morning isn’t going to be the one going forward now. I am lucky enough to still have both parents but they are getting on and need support, that is my role too so I need a plan to look after them as well.
I may be in the midst of denial about the situation and doing the “man” thing of concentrating on problem solving rather than the emotional side of things but it’s how I am coping today. I am sure there is a rollercoaster of emotions ahead.
thank you for being there
We are always here for you @Birnam.
I also came home and put my affairs in order even listing my funeral music, for me I go into practical role and it was trying to control some things in an uncontrollable situation.
My son was about 28yrs old and the one thing I regret is telling him about my Chronic lymphocytic leukaemia (CLL) diagnosis on the phone and not in person where I could have supported him better. No lasting harm was done luckily.
Don’t worry about the denial it is a protective mechanism.
I am happier now than I have ever been in my life and my 70th birthday was the best ever.
All of us only have the present, we just thought we had a life mapped out.
I will be thinking of you all weekend, especially during your 50th family gathering.
Be kind to yourself and spoil yourselves
The day I was diagnosed with myeloma my consultant didn’t use the word Cancer just Myeloma she talked about what was going to happen in the next couple of days and gave me a booklet
I had to take a sick note into work and pick up my daughter from school. She sat in the canteen while I sat with my manager talking about what had just happened. I said to him have I got cancer and he said yes. He was lovely to talk too.
I took my girl home and asked my boy who had come home from work to sit down while I explained as simply as I could about my diagnosis.
After my boy asked if it was ok to go out I said yes and my daughter asked to read the booklet as she was interested because they had been talking about stem cells at school.
I called up my brother and told him so he could digest it all before coming to see me
I told a couple of my best friends on the phone so they could cry scream whatever and digest it but then they all had to be positive for me because I couldn’t give the cancer back but I could go forward being strong and positive to get to wherever remission I could.
My brother and my kids and my friends have been amazing!!! I kept them informed all the way through
One because it helped me and two so they could be supportive.
Our loved ones know us best and to not let them in will leave them feeling they have done something wrong or go to wrong conclusions
I find being honest is the best for all involved
Go enjoy your birthday gathering as it’s happening then talk to your wife. The future is different and can be tweaked with a little bit of help from your wife. There are tears and sadness and anger but you can get past these sharing with each other how you feel. It’s lonely being on your own
Good luck only you know what feels right
Hi @Birnam I hope you can have some enjoyment on your special birthday, still thinking of you loads, be kind to yourself
Thanks Erica, much appreciated
I was diagnosed in 2018, in total utter shock for a few days and then just told people closer to me because I felt that if they knew then they would understand better. I am glad I did because when covid hit us and we had to shield, people understood better.
You will find out more when you see your doctor/heamatologist. It could be that like many of us, you won’t need treatment for a long time if ever. Please tell your wife so that you can both support each other.
I was heartened by support here, also from CLLSA and Leukaemia Care. This is a club none of us wanted to join but here we are so by supporting each other, it does become easier. CLLSA have an under 60’s section so perhaps you could look at that.
Difficult, I know just now, but I was told that if we have to have a cancer, this is perhaps the best. I thought that my life was over until my consultant explained that I was likely to live a normal lifespan and that Chronic lymphocytic leukaemia (CLL) was unlikely to kill me. I was put onto active monitoring or watch and wait for almost three years. My WBC started to rise last year and I began treatment with Acalabrutinib. My white count at my last blood test was down from 250 to 17 which is nearly normal. I hope this has helped you, please stay strong and safe. Alice
thanks Alice, I’ll have a look at those groups too. GP appointment on Tuesday and have a long list of questions, mainly taken from info here. Hopefully will also get watch & wait.
Please let us know how you get on x
How did yesterday go @Birnam?
Hi Erica, it was a good day thanks. Seem to be able to block it out for large parts of the day, it just doesn’t seem real. Have my moments alone usually in the car when it hits me. Telling anyone just now opens a can of worms I can’t deal with as I will have to react to their reaction if that makes sense?
I am supposed to be going away for a week early May but from what I read 6hr flights maybe not recommended just now -
GP on Tuesday - focusing on that and see what they say. Diagnosis and symptoms does explain a lot of what I have been experiencing for a while though.
Yes, @Birnam your thoughts and feelings are very natural and I am glad that you were able to have a good.
That saying a day at a time or even an hour at a time are difficult to achieve but a good one for me.
Please let us know how you get on on Tuesday.
You are doing brilliantly, take care.
My husband was diagnosed with Chronic lymphocytic leukaemia (CLL) 2.5 years ago after a routine blood test. I was with him when he was told. Thankfully he is on WW and doing really well. I am a born worrier but I would have so hurt if he’d chosen not to include me. I’m the extra pair of ears at a consultation.
Hi @Birnam as others have said, it is a very personal thing as to who you tell and when. I think in my case I was just relieved to find some sort of explanation for the pain I’d been suffering that I decided to get it all out in the open and let everyone know either by phone or Facebook and I gave instructions to my manager to let it be known at work so there would be no awkward conversations. Hope you find the way that is best for you.