British Lung Foundation
34,224 members41,624 posts

SCARED

In a few days i will be turning 49 years old on the 17th of april 2018. I used to get so excited when it was my time to grow another year older and hopfully wiser? But at the very start of 2016 things changed ALOT. My breathing was very worrying, mainly at night and morning I would be sitting down alone, deep in thought and could hear the weezing inside my chest so heavy sometimes that i would think some guy was behind me i scared the life out myself and with this cough that would not go away had to go so i decided to get it checked out i had been a smoker at least for the past 20ish years but so was everyone else even more so than me.

Anyways went to doc, he sent me for a MRI and WOW they found 2x3cm tumor inside my bladder which had to be removed asap, so straight to surgery i go, they removed them sent me home the next day everything had gone perfect should be fine in about a week

got home that night and cant fined any words to describe the pain i was in and still was in for the following 20 hours

back to hospital i go to see why and they realised two holes had been perforated through the wall of my bladder. So then for the next year every 2 and half mths i had turbt after turbt to catch the cancer before it spread again which it did Until this last xmas my surgeon told me on the 22nd of nov 2017 he has it under control and for me to enjoy my holidays as he said im in remission.

So HAPPY i was Yes i have beat this thing YEAH

Then not even a mth goes by when my test results for my lungs were finally read and Im in the last stage of very severe COPD My lung function is 27% & prognosis very short

Time goes so fast especially when you dont want it to and ive got so many things to do people to see, how do i tell the kids, my mum, brothers, family and friends..........

Im finding it all so much to deal with and i would really appriciate anyones advice I feel like im just hanging on

JUST hanging in limbo

10 Replies
oldestnewest

What an awful lot to deal with in such a short time. You must be in total shock.

Please ring the BLF helpline on 03000 555 030 and speak to one of their nurses. I hope you get some much needed help and advice.

You are in my thoughts and prayers. Xxx

4 likes
Reply

Hello copd1969 .

Firstly, happy upcoming birthday to you. 🎂🎁😃 Despite the dreadful, heartbreaking, time you have had, I sincerely hope you make a HUGE deal of your birthday and have a marvellous time. 🎈🎉

I was wondering, since you are still at the young age of 49 if your doctor has brought up lung transplant with you? Since your cancer is now in remission, would you not be a suitable candidate? Forgive me if I am overstepping the boundaries by asking. Perhaps you've already discussed it and this is not a viable option ?

How much mobility do you have? I ask because my lung function is about the 30% mark and my doctor recommends keeping mobile as much as possible. It definitely gets me out even for a short trot about and I feel a bit better and positive in myself. 🚶

What treatment are you undergoing to help you manage your lung condition and have you been to pulmonary rehabilitation?

Sorry for the many questions.

Sending many warm wishes,

Cas xx 🍀

5 likes
Reply

You have had it very tough but don't let someone's words kill you off. There are many here with COPD and you are right, some are given a prognosis of a short life span. But guess what? Members find themselves still here decades later. Have you read nansyl's post? They gave her 3-5 years - 15 years ago! healthunlocked.com/blf/post... Other members have similar stories. Dig your heels in and prove them wrong. :)

8 likes
Reply

Oh dear, you have every had a hard time! I can't advise but i do think it would be best to tell your family. Try to find a way and just say it. I,m sure they would want to know. Then they can support you. My best wishes to you. Birthdays should always be Celebrated, it means we've survived another year 🎂👍👱‍♀️

5 likes
Reply

Oh my goodness so young and your health to deteriorate like this is awful and I am so sorry. Because of your age you might be suitable for a lung transplant and you can ask for tests to see if you could have one.

There are also other treatments ie putting coils in your lungs and they could be an option for you. Make an appointment with your consultant to ask about these.

27% lung function is obviously very low but there are quite a few on here with less and still managing to lead a good quality life. They have no plans to go anywhere soon.

Take heart and I am thinking of you. xx

5 likes
Reply

Im feeling like you at the moment but i must say i am amazed by folk who only have 14% and less and still are quite active so dont give up i wish you all the goodness and luck in the world xx

5 likes
Reply

Such a lot for you to cope with at such a young age and yes you are young but please don't let the bad news overide the good. For starters, it's your birthday in a few days so throw caution to the wind and have a wonderful birthday celebrating with friends and family. Tomorrow is promised to no one so we have to just take one day at a time and

make the best out of it, best way we can. I have 13% lung function but I don't intend to give up anytime soon. I hope your birthday wishes come true my friend. I wish you well and also I hope You can try to except your illnesses and learn to live with them and then you can deal with them. You know you have our support . Happy birthday and please God many more. 😉👍

5 likes
Reply

You Stumpy55 are just who i needed to conect to today

What a Amazing Soul you are

Thankyou

1 like
Reply

Thankyou for your kindness copd1969, God bless you ✋️😊

Reply

You really have had a dreadful time. But please don't throw in the towel ! There are some members with very severe COPD and lower lung function than you and they're still with us.

I can understand your worry and I'm really wishing you well. Take care, Sheila xx

1 like
Reply

You may also like...