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.

Is it CLL by any chance?

I'm not in the UK but will check them out

It's not, it's a non-Hodkins lymphoma

I know how you feel . I have a relative who is constantly looking on the good side of everything and sometimes it drives me mad . When my friend lost her son she was saying how brave they were and at least he did not suffer etc. But my friend said she appreciated my approach more , which was sometimes life is really shit and you get dealt a really bad hand and you have no choice but to try and carry on. I suppose they think it’s helping but when you are faced with long term health problems and multiple tests and hospital visits ( as my husband is at the moment ) it’s not helping and sometimes it’s best to tell them that .

I suppose people are being positive, and assume that's what you would prefer. If it's treatemable, and containable for a significant length of time, I guess they are seeing it as a chronic condition instead of a 'cancer' which I know it still is. We had a family meme near with CLL and they were monitored only for years, and to be honest, we probably did the same, it's a 'good' one, it's liveable with and won't cause you many concerns. I can see though why this is upsetting when the diagnosis is such a shock for you. Good luck

People can be shit. I was diagnosed with a rare chronic disease this year, nothing as bad as cancer but still, I will have it forever and it has changed my life. I've been really disappointed in some of my oldest friends, who never ask how I am or anything and it got to the point that I was in hospital last month for a bit and never even told them.

I think people are scared to talk about health stuff in general and 'cancer' is such a scary word that I think some people just don't know what to say. It's no excuse obviously, and it it feels shit when your health and your worries are dismissed by people you care about. I think it's also worse when you are 'presenting' as healthy (I presume so far you being ill isn't obvious?) because people sort of don't actually believe it's happening.

I'm really sorry though, it's quite a lonely experience and it must make you feel like you can't talk to people about it.

Thank you everyone, I know it's difficult, I'm also analysing my responses to everyone who's ever told me anything they have is serious 🥴 I'm definitely not perfect. I just really appreciate the people who say 'That's so shit' and keep it real 😊

@rainbowhairchalk it's totally shit isn't it! Completely and absolutely shitty.
I have been having treatment for breast cancer for the last 6 months and I've only allowed myself to have one public wobble (lots of private ones) because I don't want to scare/worry my family. All I get is 'OMG you are so strong - I don't know how you cope' and all that crap.
No - I'm not strong and I don't want to have to be strong. I have started seeing a counsellor - if you haven't yet thought about it I encourage you to do so. It gives me somebody completely impartial to talk to, who doesn't mind if I cry or if I'm angry. I can tell her how annoyed I get at my wonderful husband for trying to 'help' when I don't want him to. I can tell her how scared I am and how depressed I am that my life will never be the same again.
Take advantage of the forums and support groups where you can be yourself without having to consider how your feelings will affect your family and friends - if you can.
I do understand, and many other women on this site will also understand. It is shitty.

I totally understand where you're coming from OP. I had the same when I was diagnosed with breast cancer. People saying things like " oh my cousin/ sister/ neighbour had it and she's fine now." It's such a dreadful shock to be told you have cancer and I can't quite understand why people react like that

I'm sorry you're in this position, OP. I'm extra sorry that you've had someone from the "it could be worse" brigade trying to be positive/cheer you up! In my experience, most people are well-meaning but it doesn't always translate. I think most people just don't really know what to say. I've had cancer and I still don't know what to say to other people! I guess we all take comfort in hearing different things.

The thing that grinds my gears is people using the word "battle". I didn't battle anything... I just turned up to my appointments and put myself in the hands of the medical team(s), but "battle" seems to be the main way of phrasing it.

I wish you all the best, OP!

💜💜💜

I get it. I got diagnosed with breast cancer a week ago and won't see the surgeon til Jan 8.
Thank you to the poster who said this is the worst time, I feel like I have a million questions with no answers.
It is a massive shit sandwich however I'm in the positive camp.
I don't want any negative energy coming my way, unless I decide that's what I want at that moment.
The changing of emotions by the hour is exhausting.

Hi OP, I have low grade follicular non-Hodgkin lymphoma and was on watch and wait initially. It was a funny place to be- having cancer but not having treatment, and people found it hard to understand and tended to minimise it. I was told it was the best kind of cancer to have etc.

There's a good Facebook group called UK Non-Hodgkins Support Group which I have found helpful to ask people who have been through it all already about things.

Sending sympathy- those early days during diagnosis are really tough.

Even my doctor called it a 'kind' cancer 😬 still cancer tho, innit. Hope you're feeling ok 💜

Sorry @rainbowhairchalk I misread your first post in that you will be starting treatment soon. I had six cycles of Bendamustine and Obinutuzumab- it was hard (especially with two small children) but doable. I didn't lose my hair and was able to live a fairly normal life in between the chemo sessions.

Like you I know it'll come back at some point which is not ideal, but I'm trying to concentrate on maintaining good health for the meantime.

I think if you've ever been sat down and told you've got cancer then that's immeasurably shit. I don't believe in cancer Top Trumps- and saying you've got the right kind is really unhelpful. I recommend practicing a steely glare for stupid comments!

I will be starting treatment soon hopefully because of my symptoms of itching and night sweats. Can't wait 🥴 my doctor has said it will be Ritaximub which is immunotherapy and will be once a week for four weeks. But I'm having a stand that should tell us more about exactly what I've got.

I'm gonna start practicing my steely glare...

A CT scan even...

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Very shit

My current favourite is "you look so well!"

Stage 3 inoperable cancer, but hey, I LOOK well...

People don't know what to say so they say something stupid

It's shit, I'm sorry

I'm under the MacMillan centre - I don't have cancer but I have severe neutropenia so I'm treated there. And they have been so helpful and lovely and my consultant is great

I'm sorry - its so awful to hear those words "it's cancer" - the waiting for the plan is the worst waiting time ever. People don't know what to say when you tell them / they find out .

I have an inner Paddington stare that I use on the daft comments .

Hello - it’s shit. I was also diagnosed with a rare chronic blood cancer earlier this year and am on watch and wait (or actively monitoring as I prefer to call it). I swing between emotions. Get some of the ‘you’re looking great’ and am guilty myself of toxic positivity sometimes but generally friends response has been ‘that’s shit - how can we help’. It’s been a great lesson in living day by day. I’ve found Facebook groups to be pretty valuable - especially finding people who have the same cancer who understand. I find the cancer threads on here very focused on tumour cancer, the treatment response and recovery after as opposed to the potential journey to stem cell transplant - I may not have found the right one though. Sorry you’re having to deal with this.

Snap
I am stage 4 and I also get the "you are looking well"
Thing is though ,they won't see me looking shit because these are the days I don't manage to get out of the house.
And all the positivity really hacks me off. What I would appreciate is validation that my cancer is serious,and scary. And all the positive thinking in the world won't cure me,so let me be negative sometimes. I am not being defeatist, I am being a realist.
Best wishes to everyone struggling with this shitty disease.

Completely get that @gloriawasright

People struggle knowing what to say

Best I had was my friend saying "I am so sad and angry that you are going through this again. And I wish I had something clever to say or do. But I don't because it's just shit"

Yup

Wait until you get someone saying my friend's sister's nephew was cured by drinking coconut milk / kale juice etc

Sorry you’ve had this news. Your friends and family love you and desperately want to say that they want to keep you well and that translates into thoughtless positive comments. I did the same when my DM was diagnosed with two cancers. I searched the internet for all the good news I could find. It was partly for my benefit and partly to reassure her. I think that when you have taken it all in, you can let them know that you want their raw honesty.
Good luck with it all.