AIBU to ask those who have faced a life changing diagnosis

(19 Posts)
Timeforteaplease Fri 18-Nov-16 23:06:06

I'm waiting for the dreaded results. I would love to know if those of you who have been through the same and had a good outcome - did it change your life?
Did you go out and do all those things you dreamed of? Did you become a better person? Did you travel? Discover god?
Or did you get on with life just as before?

FellaTheDog Fri 18-Nov-16 23:43:21

Hi Timeforteaplease,

I was diagnosed with stage 4 terminal cancer last month. It was totally unexpected and I'm still trying to digest what this means for me and my family. Currently I am carrying on as normal because that is what makes me happy right now. I went through a period where my health wasn't very good (I'm feeling much better now thanks to the meds I've started), so to be able to return to normal activities, even mundane things like doing the washing or cooking dinner, feels wonderful. I have no idea if I'll start working through a 'bucket list' sometime in the future. It doesn't feel important right now because all I want to do is carry on looking after my family the best I can for as long as possible without help (I have 2 DCs). Everything else feels secondary, but maybe I will change my mind about this as I come to terms with the diagnosis. Right now I think I'm still in shock.

I really hope you don't get the dreaded diagnosis, but if you do, just remember there are plenty of us here going through exactly the same, you are not alone with this!

PlayOnWurtz Fri 18-Nov-16 23:47:49

Not life limiting but I have had a life affecting/changing diagnosis. I went through all the stages of bereavement for the life I wanted and life I thought I'd have then I had to work out a new path for myself.

It's bloody hard and you will need support and you'll lose friends along the way who will get bored of you being unwell. But the people who matter most will help you through.

flowers

Jellybean83 Fri 18-Nov-16 23:57:41

I'm in a similar position to PlayOnWurtz, not life limiting but life changing. I don't think I have quite come to terms with things yet because there has been a few complications recently which means I'm a bit in limbo as to my final outcome, my life has completely stalled at the moment and it's not a great situation to be in.

I really hope you don't get bad results but if you do I hope you have a great support network, it does make a difference and yes you do find out who your friends are. flowers

Americatrumped Sat 19-Nov-16 00:00:32

It depends what you mean.

I had a life changing diagnosis in my late teens. It changed my life, my career, the dreams I could fulfill. I wish I didn't have it. But the vast majority of the time it is controlled with medication, and people would assume my life is just as planned. Occasionally, it tries to kill me.

But if you're taking about terminal cancer, I don't have any experience.

Wileycoyote Sat 19-Nov-16 00:10:40

FellaTheDog
I couldn't read what you posted and not comment. Sending you warmth and positivity 💐

Valentine2 Sat 19-Nov-16 00:16:25

Fella
Your post brought tears to my eyes. What an amazing parent you are. I hope you keep your strength always. X flowers

mum2Bomg Sat 19-Nov-16 02:37:39

Fella flowers flowers flowers as I have no idea what else to say.

Zoflorabore Sat 19-Nov-16 03:06:44

Fella- wow, how amazing are you.
Your positivity just shines through and you sound so lovely, your dc must be very proud of you.
Sending you tons of unmumsnetty hugs, enjoy every second xx

FairyDogMother11 Sat 19-Nov-16 03:38:48

I had a life changing diagnosis in my late teens. I do not know what you are going through, but I'm a Type 1 diabetic. It changed the course of my life a lot in a way. I didn't finish my degree course as I was knackered and ill a lot, so ended up doing a job that was supposed to be a stop gap. I had to change the way I thought about a lot of things and all of a sudden I was aware everyday of my mortality. I think about it all the time - I'm well controlled mostly, never had a hospitalisation apart from at diagnosis, but I still worry. I try not to let it get on top of me but I have my days when I wallow. I didn't have any sort of epiphany; if anything I went into a state of denial and assumed someone would re-read my test results and say they were mistaken. When it transpired no such error had been made, I became pretty horrible to be around. I continued to look after myself but I remember food becoming a huge issue for me and my partner took me to a bbq...He couldn't have known I would react that way, but I started crying and shouting. I seemed ridiculous but I was so angry that all these people could eat all this stuff without worrying! I had to eat only a certain amount of carbs at each meal (initial insulin therapy is very simplistic thus you have to stick within small margins) and it didn't seem fair. Now, three years on, I'm doing well and I eat what I like within reason.
Whatever happens you will be able to deal with it. A strong support network helps as well!

WiddlinDiddlin Sat 19-Nov-16 04:29:48

I was finally diagnosed with heart failure, and quickly after that, hypothyroidism, around 2009.. I was 29 and I'd been very ill for over a year..

In a way it was a relief but I was petrified I would drop dead at any second (technically, I still could, but there really IS only so long you can maintain that level of terror for!).

In 2010/11 it was determined that, due to historic symptoms and other previously unnoticed symptoms (or the ones noticed but put down to me being fat/idle/a whinger) I in fact have Ehlers Danlos which is why I went into heart failure at 29 (valves stretched) ..

By that point actually although life changing this was a massive improvement as it made things clearer, I knew roughly what to expect, it was clear what could and could not be done.

I have a prospective lifespan of under 10 years which at 36.. sucks, theres no way round that one.

Theres always the chance the Drs are wrong and I'll live longer than that, but what quality of life I'll have, I don't know (if its the gasping and wheezing and fighting for every breath I had during active heart failure then I shall be checking out early. For sure.).

Knowing that I really AM ill and that actually the reason I didnt like doing stuff and found stuff hard was because in fact it WAS far harder, and far more painful than it was for anyone else.. was a revelation and a relief.

Being told NOT to do stuff (v little exercise, no bending, no lifting, basically sit on my ass and do nothing) sucks - I push the rules a bit, I have a manual wheelchair not an electric as this means I can exercise without hte risk of falling but I am still not supposed to get out of breath.

Getting my head round preserving what mobility I have now for the things i REALLY want to do - thats pretty hard, not a lot of people immediately grasp that I use a wheelchair to save and slow down the damage I am doing to both my back (I have the arthritic changes you'd see in a90 year old in my spine!) and my heart... but this means i CAN stand and walk short distances (in a lot of pain but im practiced at ignoring that) - so I still go without the chair for work (I go to peoples homes and not many peoples homes are wheelchair friendly).

But I have along the way learned to really not give a fuck what other people think, between me and my various consultants I have found a way forward that lets me do much of hwat I want whilst limiting the damage a sensible amount.

I try not to think about the fact I won't get 'old' old.. and that I do need to get on with stuff because there won't be a 'tomorrow' at some point, but I daresay this is something everyones gotta deal with eventually (my dad is 'old' old but doesnt feel like he is and is raging against it!).

Honestly, whatever it is... we are all far far stronger than we think - you'll get on with it, you'll make the best of it - you might be angry or pissed off or sad but you'll find a way to deal with that.

One thing I will say - do NOT compare yourself to others - the shit you have to deal with is yours and it is important and it is serious to you - it doesn't matter a tiny bit if it looks on paper like its less serious than my shit, or someone elses shit!

This whole '#ah but someone else has it harder than you, cheer up' bullshit really does need to stop. YOu aren't dealing with someone elses life, you are dealing with yours!

RosieMapleLeaf Sat 19-Nov-16 04:30:09

I was diagnosed with MS in June, I was diagnosed on my first relapse which landed me in the hospital for 5 days, that was the first indication ever that something was wrong although based on MRIs Pi now know it had been going on for a while.

Initially I felt really empowered, I was going to take control of my life, get rid of the excess nonsense in my life, reduce stress, blah blah blah.

And then the relapse passed and life went back to more or less normal (actually nowhere near normal if I'm honest). All of the stuff I was going to do just kind of fell away.

Then I went through an anger phase where I just refused to deal with any of it; it wasn't going to make me change my lifestyle and I certainly wasn't going to be injecting drugs into myself every other day!

And then I had another relapse; not as bad as the first one but enough to let me know that the first one hadn't been a one off.

Now I am kind of just getting by. I can't bring myself to go on the drugs yet but I have changed my life a bit. I am still quite angry about the whole thing and I wish that part would pass; it is not the kind of anger that is helpful!

I don't have a bucket list or anything like that. I am stuck at the stage of listing the things that I won't be able to do now. Grrrr.

The people around me have been fantastic. You really find out who your friends are but real proper friends make all the difference.

I hope things work out for you! You WILL cope, whatever happens.

Fella, I have no words. You are so strong. I also wish you all the best. flowersflowers

APomInOz Sat 19-Nov-16 04:33:49

Hi ladies, sorry to hear your stories, sending love and hugs.
5 years ago I was diagnosed with lymphoma and had to go through the chemo and am now in remission (have been for 5 years). At first I didn't change anything in my life and just carried on but after my second child, I started to think about what I could possibly have done to get cancer! As I was told that no one will ever know why or how, I decided to do some research and basically have decided to eliminate chemicals from my home and look at the food I provide for me and my family. I'm not perfect, I still drink wine and the kids still have McDonalds sometimes but I try to reduce the chemical impact. I have also started to do yoga and meditate to relieve my stress levels as this is a huge impact on cancer too apparently. So no major life changing activities or a bucket list to follow, but living my life the best I can and guide my children to live a healthy life and be strong in the heart and mind is my way of dealing with it.
Good luck too all of you.

JerryFerry Sat 19-Nov-16 04:46:05

Oh you poor souls, love and best wishes to all of you. I'm sorry for what you're going through xx

JerryFerry Sat 19-Nov-16 04:47:36

Oh you poor souls, love and best wishes to all of you. I'm sorry for what you're going through xx

echt Sat 19-Nov-16 04:59:27

Fella

thanks

BadKnee Sat 19-Nov-16 08:49:40

Thank you for this thread and your posts. x

debska Sat 19-Nov-16 09:57:46

Got one this week. Dreaded c word but high recovery rate. Treatment will have life long consequences but thinking about my life , I wouldn't change anything. (apart from illness)

debska Sat 19-Nov-16 09:58:57

And sending lots of love to all those who have shared their stories .

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