For context I was diagnosed with terminal stage 4 brain tumor in Nov 2022. Have had a crainiotomy, radiotherapy and ongoing chemo since. I have been very fortunate to have my mum take care of me and some wonderful close friends support, and have been feeling ok most of the time.
Overall I'm coping well but there is one thing that bothers me so much right now, though I'm not sure if I'm being unreasonably irritated. People I know will not leave me alone! I'm not talking about close friends and family but work, friends of friends, ex-in-laws and family I haven't met with or spoken to in months or years.
I want to spend my time living as close to my normal and content life as possible for as long as my health will allow. I do not need others calling me at all hours to "help me pray for a miracle" or "try vegan" or some other bollocks. If I don't usually talk to you I don't want to now.
Between the unhelpful and uninformed opinions I can't understand why casual acquatiances feel they have any right to medical updates, my personal thoughts or think I care about their thoughts on it.
I have my first update after MRI coming up next Monday and will attend with my mum. I know I am terminal so for me does not feel like too big a deal. I have of course seen drs alot and they have taken amazing care of me. Gossip has travelled and now my appointment is practically famous I have a barrage of messages and calls "wishing me luck" or demanding that I let them know ASAP the "news" (still dying duh).
My question really is, how do I get people to leave me alone? I'm very grateful for those I'm close to but randoms need to back off. Or am I over the top?
I am so sorry to read this thread, and what is the right or wrong way, to help solve this situation.
All i can say, as a mum, and i have three grownup children, who i see before diagnosis, perhaps, a couple of times a week.
Though when i got my Dx they where all the time, till i put my foot down.
Told them to stop smothering me, not done it ll your life, do not start now, i will think, something is wrong with me, and i want to carry on as normal.
I said if i need you i will phone and let you know. It worked,and i in myself was grateful
They all have their own life's to live, the same as me, for how ever long, i may have,
I fill where you are,
That is the way i dealt with it, though your mum is your mum, yes she can go with you to appointments, she loves you.
I go with my daughter, she was DX with breast cancer, though i do not smoother her and that is the way she wants it,
Have a word with your Mum, i am sure she will listen and understand, she will always be there for you, when you need it,
My Thoughts are with you,
So true, people fit in a number of camps
1. They’re almost frightened to face reality of mortality, and therefore step back
2. Nosey and after gossip
however more positively they genuinely care, perhaps things got in the way of being close. The thing is it’s your cancer, you can choose who to tell what, you can speak to others, ignore them or politely state sorry I need to get xyz done.
YoungMan and Ellie are bang on the money. I bet all of us have experienced something similar at one time or another.
I do try to be tolerant but sometimes it's not possible.
A long time ago a thread was started quoting the rediculous things people have said to us all.
Sometimes things were said that were so awful you really could bash someone for saying it.but some were absolutely hilarious.
We might have to do that again for light entertainment.
I always remember Rainiedays story. She said someone mentioned that someone had remarked on how well the person seemed to be.
The reply was ... hopefully I will be on oxygen next time you see me and it might be more apparent. Brilliant comeback. That might shut up more than a few.
Anyway, none of that nonsense on here.
So sorry Beth to read what you are going through. I know when I was diagnosed I wanted to crawl into a hole and hibernate. I certainly didn’t want people asking me how I was. So I designated one person from each group of friends to pass on what was happening and asked to tell the others not to get in touch with me. And it worked.
there’s only so many times you can be asked ‘how are you’ until it begins to fizzle out.
I get you…we want to feel ‘normal’ my son and granddaughter picked me up the other week to go shopping. I said that I wasn’t feeling too good. Grant said, that’s ok. He didn’t make a fuss. And it WAS ok!!! We had a great time and a laugh. And i felt ‘normal’
As time goes on they see it is what it is and just accept it. Of course I have special friends who are walking along side mr who are precious.
I often think what I’d be like if someone I knew or knew of had incurable cancer how I would respond. It’s not easy for them either. But I hope i wouldn’t come up with a glib comment.
thinking of you xxxx
^^^ oh yes, this. Your post is so spot on Beth. Would you feel comfortable in laying down some ground rules and letting the grapevine communicate them? You are entitled to privacy with your medical appointment schedule. On one of those threads where we discussed how to manage constant "enquiries" someone said "people think they have a right to know, but they absolutely don't".
Not over the top at all. It’s absolutely up to you how much you share and who you share it with - and up to you whether your level of sharing changes over time. My own choice has been to be fairly open in most settings, without going into detail about prognosis. That way I get cover for anything which seems strange about my appearance or behaviour, and also quite a lot of support. I also find putting it out there stops the rumour mill circulating something that isn’t true. Whenever I get the “can’t you just try this” or “my friend had this drug, why don’t you ask for it” type comments I usually find loading them with a load of complex technical detail about my type of cancer shuts them up. Explaining why an immunotherapy drug could kill me, but is the only way of letting my immune system see my cancer really does the trick. I don’t tell anyone other than close family and friends about appointments unless I need to explain a meeting absence, when I am very non specific.
Thanks everyone for your replies. I haven't said anything to anyone, just wanted to check I'm not being a bit of a moody cow. I am going to start ignoring some people I think and blocking a few pushy people. I am lucky to have a support group of amazing friends and family.
I am very private, especially as I have a small son. I am an open book with my family and friends but this week a colleague I haven't seen or spoken to in more than 2 years contacted me and I think it's the one that has taken me over the edge...if I haven't contacted you to check on stool samples or if you're hay-fever is ok why do you feel ok to ask me?
Thanks for the advice
Hi Beth, As you can tell from all the replies, we have all experienced this or similar. One thing I would like to pick on was you use the word Terminal but very few people use this now. It's better to think of incurable but treatable!
It is difficult because some people mean well by saying how good you are looking but "in comparison to what"! It does get a bit wearing. I just tend to ignore them. I know others who have FB pages for updates to stop people asking them. I'm afraid when people I don't know well enough ask about medical things, I just change the subject and never answer their questions, they soon get the idea.
the thing that got to me was every time I moved after dx, my husband would say "where are you going, what do you want and I'll get it?" At first I said, if I can do something myself, I'll do it but if I need help I will ask" He meant well but............ then one time I said " Im going to the toilet! Can you go for me?" We both just laughed and he realised then, it was all too much!
With something like this, I don't think there's a right or wrong answer, you just have to deal with it your own way! Good luck!
Love Annette x
Hi Beth, I'm with you that it's annoying. People seem to think that having cancer, (possibly people with other life limiting and serious illnesses face the same drilling) seem to think they have the right to what should be private medical details. I get this a lot.
Where are you being treated?
Who's your consultant?
What sub type are you?
What medication are you taking?
What are the side effects?
How long have you been taking it?
What stage are you?
What's your prognosis?
Tell you what, let's stop off at your local surgery and I will ask the receptionist to show me your private medical records. No?Thought not. So stop quizzing me. Or worse, getting other people to quiz me. Either believe me or don't. I shouldn't have to prove myself.to you by being forced to discuss what I consider private stuff, just because I don't fit the stereotype you have in your head of what a 'typical' cancer patient should look like.
I dont mind so much if a person has a medical background or has been through something similar (parient or relative) but not when its plain nosiness. I dont like bring forced into talking about it, especially in front of an audience and especially if im trying to have normal day doing normal things.
Then there's the
"My aunties uncles mother's brothers sisters dogsitters cousin had x cancer......you dont look/act the same. Total Confusion.
And the constant questioning as to why I don't go to my local hospital for treatment.
Why do you go. All That Way?
I Go Where The NHS Sends Me!!!!!!!!
I'm grateful that they're treating me. End Of
And breath .
I tell myself that most people mean well and ts true, they do. .I have some lovely friends, who know how to be with me . They include me in a lot of things, but also know when to back off. People like that are worth their weight in gold
Its tough navigating all of rhis stuff whilst also trying not to alienate people.too much. I have my rants, but I know deep down that most people have good intentions Its only the odd one here and there who I suspect don't believe me, and I then get the 100 questions and constant quizzing.
I often wish people would ask me the one question I 'really' want go be asked:
"What's the toughest thing aout having Incurable Cancer?"
My answer SHOULD be:
"Concentrating on having a good quality life for as long as possible, plus trying my hardest not to die whilst hoping they'll find a cure soon"
I think they would be shocked to hear my REAL answer:
"The toughest thing about having incurable cancer ifor me is that most of my time is taken up worrying whether people believe me or not. Also, a lot of my time snd mental energy is spent on trying to protect people from getting upset"
All the sh** that goes wirh it is sometimes more exhausting than the cancer itself!