When do you tell someone that you have blood cancer?

Hi, @BobK99 How is your health now? Are you still being monitored, or had treatment? In an ideal world it is better to be able to sit down to break news like this, but sometimes circumstances mean it has to be by phone.
My husband had to break news of my diagnosis to my parents, who were in their seventies, over the phone. I also had to have several difficult conversations with them on the phone (which I found easier than face to face when I was suffering the effects of chemo)
Best wishes

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Hi @BobK99, thanks for letting us know your experiences and I agree with everything you said. Did the way you told people change any of your relationships in the longer term?

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I told a few people I had ET Jak 2 . I still
haven’t told all my friends.Mainly because I have a chronic blood cancer for life and know it’s not going away. I am starting to deal with it but still working on it.

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Welcome to the forum. How recently were you given your diagnosis and what sort of support have you been offered? You will find many people with similar experiences on here, and if you need to speak to someone the support line is also available. Best wishes

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Hi @greenfield, a warm welcome to our community forum, I hope you will find it supportive and informative. What I have realised is that whatever our blood cancer we tend to share similar fears, thoughts and feelings. You say you are starting to deal with it, in my experience after receiving such news it takes time to come to terms with it. How are you thinking and feeling?

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Hi thank you for replying. After 2 yrs I still get tearful and frustrated. Medication has been a struggle for me and I feel sad for the things I don’t do anymore because of ET ( I get a lot of fatigue and feel anxious).
Audrey🌻

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Audrey, although I finished treatment a while back I am living with the long term effects from how my blood cancer presented and from treatment so understand your anxiety and the sadness for things you are no longer able to do. It can still overwhelm me when I hear a piece of piano music on the radio that I used to be able to play. Do you find that your anxiety has got worse during lockdown?

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Hi Audrey, your feelings and symptoms sound so like so many of us seem to feel. I get anxious and I certainly do not deal with what personally stresses me well, which needless to say can bring on my fatigue. My fatigue can come on if I emotionally or physically overdo it. I have chosen not to do evenings so everyone knows I am a lady that lunches. My energy has gone by very early evening. Sometimes I have a nap in the afternoons or even a duvet dive time. Other times I find a bit of fresh air and appropriate exercise helps. I love the music I have downloaded on my Walkman or books on my kindle. Sometimes tears appear from nowhere. If you would like to speak to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk and we are also there to support you. Stay safe, shielding has also brought up a lot of heightened emotions for me. Have you got any support?

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Hi Erica, thank you for your reply. Greatly appreciated.:sunflower:

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Hi, l have found lock down very frustrating. I agree music helps. I have joined an on line choir.

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Oh @greenfield, an on line choir ‘sounds’ wonderful.

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I waited until the night before I was getting diagnosis confirmed.
Calls to family back home in Ireland were hard, tomorrow I find out what kind of blood cancer I have…(consultant had a hunch it was one of two candidates!)
I was then able to call on confirmation next day, with more details of prognosis and treatment plan.

I did call my brother on first consultation (i.e. about 2 weeks before the rest of the family) to give him heads up so someone back home could support family, and I kept him updated.

The other issue for me was pulling out of events last minute that I’d committed to (including a weekend abroad), just stating health reasons. People just had to wait and find out.

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This has been my first week of telling people.
I was diagnosed just last Thursday with CLL.
Less than 24 hours after hearing of its existence for the first time i was trying to explain to my grown up sons and a few close friends what it was i’d just been told.
It’d almost be easier if there was a recognised time scale, a set prognosis pattern that i could tell them about but there isn’t and that’s what’s so mystifying about CLL.
A lot of questions have no answers!
I have been amazed in these first 7 days to find so many different reactions to my news.
I hadn’t really thought about how people would react, i just knew that i needed to tell them.
My one son, ever the practical one, called up 2 uni friends who are now Drs for information. My other son cried. Both are in their 30s.
Friends have expressed shock and support as i had expected but i did despair at the one who used what i see as a stock cancer diagnosis comment… “You’ll beat this”… no i won’t, there’s no cure, i won’t “beat it” but I will live life to the full with it and do my best not to let it get me. It’s just something that’ll always be there.
My brother in law came to visit with his partner, i know them both really well. The excuse for the visit was to deliver a lockdown delayed birthday present, but i had assumed that they were coming to chat and offer us support. They drove 90 mins each way and sat (distanced) in our garden for over 3 hours. They never once mentioned “it”… the elephant in the room.
I was quite upset to have had no comment at all, not even a “how are you feeling?” Just a sense of “Do we say anything or is she going to cry?”
They are both clergy so are used to talking sympathetically with people… it never occurred to me that they might feel awkward. And their non-reaction had actually made me feel extremely awkward and i hadn’t expected that!
From that meeting i have decided that going forward i will talk to people about it. If i feel it’s necessary then i will be the one to bring it up in the early conversations and i will try to put others at ease so they understand that it’s not something to be hidden or avoided but, once it’s run its course in the conversation, then i’ll drop it and move on.
After all, It’s now an integral part of me and it’s here to stay.
Hopefully the elephant will soon leave the room! …It’s already backing away!

I’m so glad i have found this site/community right at the beginning of my journey and I hope i’ll be on here for many, many years to come.

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First of all, welcome to the forum, and I am so pleased you found us early after your diagnosis. My experience is not of CLL but my friend and fellow forum support volunteer @Erica will probably pop on to tell you of her experience of CLL and Watch and Wait. Your experience of telling people does not surprise me, but you will soon know who you can really rely on.
You have been able to access reliable information through your son, and Bloodcancer UK also have patient information on a number of topics on their website. You can also speak to someone on the support line, details at the top of the page.
I also found that honesty and being upfront is the best way forward. I look forward to seeing more from you

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Hi @AnnB, I am so glad you have found our forum, I find it supportive and I hope you will too.
The way family and friends have reacted to your news seems so typical, you mention embarrassment and I agree but also people just do not know what to say and how to do and often say things like ‘You’ll beat this’ which also make them feel better. What can you say?
Perhaps it would be nice if someone had said, ‘how can I help you?’
I have learnt it is often up to me to start the conversation so it doesn’t become the elephant in the room.
Also CLL, and some other blood cancers, are often not treated immediately or for varying lengths of times. They are actively monitored or called ‘watch and wait’ through regular testing. I could not get my head round this so how could I explain it to others, I thought I was diagnosed, be treated, get better and life would go back ‘normal’.
Have you read the information on the Blood Cancer UK website? We are here to support you, you must still be in shock, and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk if you need to chat. Please keep posting how you are and spoil yourself.

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Thank you for the welcome.
I was given the Bloodwise patient Info booklet by my consultant as she gave me the diagnosis. It was my Introduction to CLL and it’s been very helpful.
The hardest thing this first week is, as you say, trying to get my head around the whole idea of watchIng and waiting rather than diving in with treatment to “make it better!”
My son’s Dr friends both said their hardest job is convincing patients that that really is the way to go. I’m very happy with that course of monitoring now that I understand it.
I guess I’ll get to know and understand my own path as I progress along it with my regular blood tests.
Thanks again for being there. It’s good to know that there’ll be someone at the end of the phone to help me if ever I need it.

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Hi @AnnB, I have CLL and I have been lucky enough to have been on ‘watch and wait’ since 2003, but as I said I have been very lucky, any questions just ask.

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Welcome @AnnB. Gosh, I remember r those conversations like they were yesterday. I don’t have CLL but follicular lymphoma and am currently on watch and wait. I found the conversations extremely difficult. More so with close friends and family. I got varies reactions from people being really emotional to the other end of the spectrum where people said it would be fine. Like Erica said, I didn’t even know how to explain it or how I felt about it and I’m not sure I’m even there yet! All I can say is that in my experience, over the past three years, The conversations have changed. People have come to accept how I handle it at different points and gage my mood. My husband is very good at being my voice if I need him to. It’s very early on for you and you have a lot to process. Take your time, do what you need to do and other people will hopefully take your lead. So glad you have found us. I don’t know what I’d do without the support on here sometimes! X

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That cheered me to hear that your consultant gave you one of the patient information booklets. I have been at events to publicise these booklets and to get them into the hospitals.

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They’re definitely in use in New Cross Hospital in Wolverhampton!
My consultant used the booklet cover to let me realise what i was being diagnosed with. She didn’t say a word, just let me read the title and come to my own conclusion. It slowly sunk in, i asked a few questions (Leukaemia? That’s blood cancer isn’t it? So i have cancer?) Yes, yes and yes. Then she explained it!
Seemed weird at the time but that brief moment of working it out for myself was probably better than someone actually trying to say those words to me.
I skim read the booklet that night and read it in depth 2 days later as did my partner.
Thank you for producing it. It’s comforting to be able to have and hold something that contains so much info. It’s given me so many starting points for further enquiries.

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