Been diagnosed, what now

[rainbowhairchalk]

I've been diagnosed with a type of blood cancer this week, it's slow growing, I need a CT scan and then treatment and I'll be fine for a while and then it will probably come back. Repeat ad finitum.

I've told quite a few of my friends and family and most of them are being sickeningly positive (as expected) and one even googled the condition and said 'it could be worse' and I just... It's cancer. There's no getting away from it. I'll need treatment or checks for the rest of my life. I only found out last week so I'm in shock I suppose and don't know how to behave or react to other people. Or what to do. I need the scan to figure out the exact type and what type of treatment I'll have.

I feel like people aren't taking it seriously and 'oh it's treatable, you'll be fine' but it's cancer and it's a condition I'll have for the rest of my life! It's awful! Terrible! I can't believe it. I'm sad, I'm angry, I don't want to stress my family out by showing my real emotions, my DH has been wonderful but has admitted to me that he had a breakdown when he first found out, which is understandable and I don't have a problem with, of course.

Yes I'll be fine but you know what? Right now? I'm not. I'm anything but.

So sorry to hear you're going through this, OP. I doubt it's that they aren't taking it seriously. It's probably that they are desperate to make you feel positive and hopeful. I think it's quite a natural reaction, though I can see why it's not actually very helpful.

I want people to say 'Oh my god, that's so shit' but for some reason they're not?? 😂 I know it's a lot to expect. I'm just kind of devastated right now and want people to feel bad with me I guess

Omg that's so shit.
Sorry you've had a rough diagnosis.

Best of luck with treatment.

The performative positivity is exhausting to witness as a relative of people with cancer, can imagine it's infinitely worse for the actual patient.

Yeah the positivity does my fecking head in. I've just been diagnosed with secondary breast cancer and right now, I'm bloody fuming with the world!

Solidarity OP.. one foot in front the other x

I’m so sorry to hear this. People really don’t know what to say, so try to “cheer you up”, which is well meaning but very unhelpful.

You are in a horrible “in between” position because you have a diagnosis but no plan. When you have a plan it’s easier, for some reason. (I’ve had a cancer diagnosis myself in the past).

There’s a good cancer support thread on here - will try to find the latest version for you

Mmm.. my u/n is a bit strange? It's changed all by itself?

Come and join us on the cancer support Thread. We get it. https://www.mumsnet.com/talk/general_health/4929203-cancer-support-thread-91-dont-borrow-tomorrows-worries?page=39&reply=131657238

Cancer support thread

Just in case it’s helpful

I remember 2 years ago, 7 months after my initial breast cancer diagnosis and while I was going through chemo, loads of my Christmas presents were donations to Cancer Research or keyrings/similar from CR or other cancer charities. It was like everyone was saying, oh it's Christmas but don't forget you've got cancer! People can say and do the most ridiculous and hurtful things, even with the best of intentions.

It is shit. It’s bloody awful and frightening. I don’t have cancer but I do have a life threatening condition so I know a little bit how it feels and, quite honestly, I got rapidly fed up with the ‘think positive’ brigade around me.
Sending you a hug and hoping that once you’ve got a treatment plan then things might feel a bit more manageable x

I’m really sorry, that’s completely shit.

My close relative was diagnosed and I was so shocked and sad.
People drove me absolutely crazy, reassured me they would be fine (he was stage 4) and frankly blocked me from naming my own feelings.
If I ever said I was said I was advised never to say that to relative and only be positive!

Thank fully I learnt from this and sat and listened to my relative, listened to the anger, fear, loneliness. Hard to do, but so grateful I had the opportunity.

I think in general people are scared and words like cancer really freak us. The best defence against fear seems to be relentless positivity.

People who cope best and help most are people who have been through this in one way or another.

rainbowhairchalk I am so sorry this life changing, life long situation has happened to you.
Sounds utterly, completely unfair and shit.

How are you feeling?

I'm sorry that sounds hideous - both your news and the dismissive reactions. People can be really shit.

Why would they think you wanted stuff like that?!!!

My favourite card when I got diagnosed said something along the lines of ‘what a kick in the balls.’ It summed it up for me & I much preferred it to the relentless positivity/ sympathy. You just want that acknowledgment I think.

What's with the being positive when you have cancer? People don't seem to do it for other diseases like MS or COPD?

I wonder where it's come from?

It's seems totally bizarre to me. How can my cells know if I'm feeling positive or negative and how would this affect what they do anyway?

I'm sad, I'm angry, I don't want to stress my family out by showing my real emotions, my DH has been wonderful but has admitted to me that he had a breakdown when he first found out

Obviously it's up to you, but it's okay to break down together. It might make you feel less isolated. There can be a closeness from letting out the feelings together and comforting each other.

Hiding how you feel doesn't always protect people - they'll know or suspect you don't feel fine about this but it can be hard to know how to respond if you wall yourself off behind a mask.

You're the one who's had the shit news, it's not actually your job to try and shield everyone else.

I'm still in shock I think. One of my friends really shocked me by asking a couple of questions and then going on to talk about her problems. I suppose I underplayed it to make her feel better so maybe she doesn't realise it's cancer, I don't know.

Fucking cancer 🙄

I dunno, I received a non-cancer but serious lifelong diagnosis and received the dismissive "chin up" bullshit from people. Different people probably have different reasons.

Good grief.

Why are people like that though??

My DB said 'It could be worse though, right?' and it literally made me want to cry 😭

It is totally shit Op. A big pile of it.

I think you have to pull people on it, nicely if you can, and say the rest of my life is going to be impacted by this, and I’m sad and frightened, and right now I need people to acknowledge this is shit.

As PP says people are so desperate for it to be ultimately Ok, they wash over your feelings.

It's someone I would never have expected that from either, I mean, I get that she's busy but 😭😭

Yes, you must surely be in shock, only received the news this week.
What does Christmas look like with all of this happening for you?

Think a lot of the narrative about fighting and never giving up has ALOT to answer for.

Im so sorry your friend was careless, that must really hurt.

Always think expecting people with these diagnoses to be positive must make it feel much more lonely.
At the time you need most support or listening to, you have to cover your natural reaction to protect others, something has surely gone wrong there.

My DM was diagnosed with leukaemia and honestly I didnt know anything about it. I think that certain cancers are that common, with an excellent survival rate, that people just assume everything will be ok. However, like you say this has affected your life forever. Please dont try and keep a stiff upper lip for the sake of others OP, you need to find a space to scream shout and cry as and when you need to.

Waiting for test results, diagnosis and for treatment to start is hugely stressful. Your cancer nurse specialist can help with keeping you in the loop with what happens next and an idea of timelines.
How you are feeling is really normal, it takes time to adjust to the diagnosis. If you would find it helpful, you can access 6 free counselling sessions through Macmillan.
You ARE stronger than you know, and you will get through this.

www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-support