Hi Everyone,
Recently diagnosed with ET , started Aspirin, observations for the next 2 months . What to I tell my friends , family , children? I don’t want to worry them . I feel like a fraud , using Cancer ??
Sorry , confused
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Hi @Margos27 and firstly welcome to the forum.
I was diagnosed with a form of blood cancer 2.5 years ago and though I have a rare type I’ve chosen not to tell my family about it. It sounds like madness when I tell people that and though I hate lying to the people that care and love me dearly. I didn’t want them taking ownership and putting unnecessary stress while I figure out my diagnosis. Initially I didn’t know the answers to the many questions they would have and after losing my sister to a different cancer I didn’t want those feelings and experience being brought up unnecessarily.
I think it’s important for you to get your head around it, as much as it’s a shock for you it’ll be a shock for them and how they feel about your diagnosis isn’t as important as how you feel about it.
What I will say it’s really important you find a form of support and that may come from your family and friends. There are a lot of people on here with ET as well as the support line whom are excellent to offer help, advice and support as well as i much needed ear and shoulder whenever you need it. Sometimes it’s much easier to talk/communicate with strangers in the know as it elevates the pressure of expectation and fear of how it sounds or any awkwardness.
Give your time time to digest and reflect and come to terms with it while you learn more about what ET is and what the future entails.
There are lots of posts on talking to your family and friends but I have no doubt people will offer advice as we were all in your position of confusion.
Hopefully your medical team will be able to offer some help and advice too
Look after yourself
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@Margos27. ET is a blood cancer. Look at MPN voice. It is a very helpful website set up by Professor Claire Harrison from Guys Hospital. She is an MPN specialist. There is a lot of useful information there that might help you understand what you are dealing with.
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Please don’t apologise @Margos27 for being confused that is completely natural, perhaps you are still in shock, I know I was at your stage. You are definitely not a fraud.
I often say how could I explain to others what I did not understand myself.
Blood cancers often do not follow what we expect from a diagnosis, let alone a cancer diagnosis. I expected I would immediately be treated, cured and we would all go back to normal.
I have attached a link to one of the Blood Cancer UK booklets that covers telling others.
Your-blood-cancer-diagnosis-Blood-Cancer-UK-ND-0821.pdf (shopify.com)
@Rammie18 and @Chris1 have given you great personal responses, there are no right or wrong answers
I was diagnosed just before Christmas and put it in my Christmas cards.
My son had left home and the one thing I regret is telling him on the phone when he had no support around him.
With younger children I think they sense things are not right at a very early age and often get the wrong end of the stick, so my general rule is telling them age appropriate information and giving the space and opportunity to ask questions when they want to and to feel supported and included.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888
These are just my personal thoughts, perhaps just get your head round it first, the main think is to really look after yourself and be kind to yourself.
Please keep posting as I would like to hear more about you.
Hi @Margos27, a warm welcome to the forum. May I ask how you’re doing? It’s so very understandable to be feeling confused at this stage. It’s still all so new for you and I can see our forum members have given you some great advice. Do take your time in processing this.
Would you find it helpful to talk things over with our Support Services Team? You’d be very welcome to call us on 0808 2080 888, or you can email us if you’d prefer (support@bloodcancer.org.uk)
If/when you feel ready to tell your loved ones about your diagnosis, we do have resources for friends and family (My friend or family member has blood cancer | Blood Cancer UK). Macmillan also has a section on talking to children about cancer ( Talking to children and teenagers | Macmillan Cancer Support.).
However, as others have said, please take your time and do what feels right for you. We are here for you if or when you wish to talk things over. We’d be happy to support you however you can, whether that’s providing a listening space for your thoughts as you process things, or helping you to plan your next steps.
Take good care of yourself.
Best wishes,
Tanya.
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