Humour me… would you tell?

[donthaveaname]

Would you tell people if you had just received a cancer diagnosis for very early stage myelodysplastic syndrome?

I may have had it for about 6-8 years already undetected (consistently low wbc count) . Its super slow developing and no treatment is necessary right now. Oncologist only wants to see me again in 6 months.

Obviously its very early days post diagnosis but i’m curious what you think? I honestly don’t know if its selfish to ‘share’ this with people as there’s nothing to do right now and it will only cause worry… or if the right thing to do is tell those close to me???

So humour me for a minute… what would you do?

I would tell people

It’s very personal, I don’t think either option is right or wrong really, but personally I would want to tell my close ones. I can also imagine close ones could feel confused by the decision not to tell, but that is up to you.

Depends, sorry. For me, it’s about whether I would end up reassuring and comforting everyone else.
No one in my life is particularly supportive. It might literally come down to whether anyone actually asked.

I have considered this quite a lot because I have had relatives who have told everyone, even posting their cancer journey on linkedin. No judgement, everyone is different and you have to do what is right for you, but I don't think I would tell many people no.
I would tell my DH
My observations are everyone rallies round and flaps at first and then everyone just backs away
I think I'd want to be as private as possible and as normal as possible for as long as possible

It definitely isnt selfish whatever you do, so shake that thought out of your head! This is your reality and its up to you who you tell with no wrong answers. That said, my concern would be about people being able to understand what you're telling them as its not the typical cancer trajectory. For that reason I think I personally would share with a couple.of very close people for whom I could give a thorough explanation and know they understood. It's quite a complicated one for less intimate relationships because people will hear cancer and have a certain reaction which you then have to deal with. Will they constantly be asking questions about how you are which mighr get annoying? Would there be a work colleague who felt suspicious bbecause you weren't "ill enough" etc. I suppose it also depends on what you wouls like the end result to be- do you want support? Are you just sharing information because it feels the right thing to do? Maybe start with someone close and then take your time deciding from there?

I wouldn’t just because how people instantly treat and responds to you differently, have seen this many times within our community. Not like a stigma, just fuss and pussyfooting, and I hate that kind of thing. Best wishes OP x

It an entirely personal decision, I don't think I would but you should do what you feel most comfortable with.

Hope it works out OK

Perhaps, just immediate adult family, based on this information

Which way are you leaning @donthaveaname?

This is a difficult one and has as been said there's not really a right or wrong answer.

Things I would take into consideration would be what the prognosis is. A quick Google shows there are a few forms of MDS.

What, if any, changes you might have to make to your life style. Like avoiding being around people with infections.

How supportive those close to you are, and if any of them are prone to catastrophising situations. Though this last one might be the least of my concerns.

Finally, if you do choose to tell people, make sure you also tell them how you want them to treat you. When I had to tell friends and family about my lung cancer diagnosis I was quite clear that while I realised they would be upset I needed them to keep their tears at bay while I was present. I really couldn't handle their emotions as well as my own.

You might want, for example, to tell them that you want them to treat you as they normally would.

Thanks for your message… I’m sort of leaning towards not telling anyone but at the same time I feel that ‘not telling’ is somehow minimising it to myself and that I ‘should’ tell people just to get it out there and start living this reality.
I feel like I’ve taken it in my stride but at the same I’m minimising it… it’s nothing but it’s CANCER!

I also realise that once i tell people then it’s out there and there’s no coming back from that.

I wouldn't tell anyone. Nobody around me is particularly supportive. One or two would even embrace the drama. I tend to keep a lot to myself and only share on a need to know basis.

I would tell those closest to me but ask that they maintain my privacy. It would help them to understand if you are tired, prone to infection etc and the importance of not seeing you if they have a bug/infection. In your own home you support lifestyle changes like no alcohol or change to lower impact exercise regimes etc.

Hope you are doing well, it’s a lot to take in.

I understand @donthaveaname as soon as cancer is mentioned, it does tend to strike fear.

Perhaps a conversation with any of the following could offer initial/long-term support?

Macmillan clinical nurse specialists on the Support Line: 0808 808 00 00

Cancer Research UK Nurses: 0808 800 4040

or Maggie's

I've been grappling with this as I have breast cancer but didn't need Chemo just a mastectomy. The operation is in 3 weeks but I have been living with the diagnosis for the last 6 weeks but I am fit and well and like you I am pretty sure I have been living with cancer unaware for at least a year anyway
. I have told people on a need to know basis . So my boss for logistics with work around my operation but only when I had a date (cancer gives you protected rights which may be something to think about), a few friends who will be aware as I will be temporarily stopping shared hobbies and had signed up for a few events I can no longer do, and very close family
But that's it. There are a number of friends I haven't told especially those I don't see often
Not sure why I don't tell people I think it may be because at the moment I feel fine and I just can't bring myself to mention it.(I think I don't want the fuss). A lot of the time I meet them thinking I will mention it and then bottle it and say nothing
I do worry however what friends will think if it comes up in the future and. I just haven't shared my cancer and whether they will be hurt

Thanks for your message. Dh knows everything and is researching left right and centre… he know’s more about it than I do at times! 🤣

Thanks for your reply, i guess to answer your question I’m not really looking for support as such… there’s nothing to support right now… i don’t need to change anything, just monitor my white cell count in 6 months.
if i was to share, i think you’re right and it would just be because it’s ‘the right thing to do’ …

Very good point!

Thanks for your message!
in terms of what changes i need to make in my lifestyle there’s nothing other than being cautious IF i get an infection. With my white cells so low i could be prone to infections but this has not been the case at all! I work in a primary school and very rarely am i sick from all the germs floating around there… the last time i took a sick day for being actually sick (as opposed to pulling a sickie so i could fly home for a party 🫣) was about a year ago when i had covid.

Thanks for the links. However i’m not in England, I live in Brussels, probably should have said 🤦‍♀️

Its so personal and I would say it depends on your coping needs. If you need people to support you then they should know. Me personally? I would prefer to deal with it privately and have no one treat me differently over that period.

I wouldn’t, as I hate a fuss

I might tell someone if I needed to chat

Thank you for taking the time to write that. I like the idea of a ‘need to know’ basis helping me decide who to tell/not tell.

i hadn’t thought about people being hurt if i don’t tell them… 🤷‍♀️

I know mine is a different situation to yours but I have skin cancer , early BCC it's slow growing at the moment and as I'm waiting on surgery to remove it I decided to tell very few people in my life . My children and my mum know and that's it , but once surgery happens I guess I will have no choice because it's on my face and they will keep going until they get clear markers and then I will obviously be getting asked why I have an obvious scar on my face but right now it's a need to know basis . But everyone's situation is different and everyone's family dynamics are different also , don't forget this is also your personal journey and how you choose to share it and deal with it is up to you because you know how people in your life are going to respond to your news . I wish you nothing but love and all the best on your journey and whatever you do choose to do will be the right thing for you I'm sure 🌹

Personally I wouldn’t because I’d want people to treat me the same as always and wouldn’t want anyone upset. I’d only tell my partner I think.