Good people: Hi all you good people but... - British Lung Foun...

British Lung Foundation
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Good people

Hi all you good people but I think I will be leaving this great forum. I feel like a fraud being on here as all of you have none of what I have, apart from not being able to breathe properly. It’s a great shame that there is nothing out there for me but I don’t understand what you are all going through so can’t comment. You have all been so nice, so thank you and I hope you all take great care of yourselves and each other. It’s a shame other Cancer sufferers don’t join this excellent site. Bel x

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You are in no way a fraud Bel and with one lung removed due to cancer and the other suffering with asthma i would say you tick more boxes than most!

We have members both with active lung cancer and those in hopefully remission and i am sure they can also relate to your position,we are all going through the difficulty of breathing with damaged lungs and your contributions suffering the same problems will always be gratefully received and hopefully we can offer you support in return.

Ski's and Scruff's x

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I just feel that I am unable to support anyone as I have no idea what people are talking about. There is no question about the support that everyone has given me. The heat is probably getting to me more at the moment. Xx

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Hmm…you have one lung less than most of us. Why you could imagine you don't have the right to be here I fail to see. There are of course cancer support groups too, so why not be in both?

I know for a fact whatever our condition (we are all unique in what we are dealing with) it makes no difference to us, we support each other regardless. And in turn receive support. To my mind that's all the criteria that I'm bothered about.

If you feel you aren't getting the right support then I am truly sorry and understand your need to find better. However, I can't let you think you are a fraud because that would be ludicrous.

I hope you stay Bel, but only if you really want to. Take care of you and your lovely mum. 😊😄😊😃

Cas xxxx 🌷🍀☀

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Hi Cas, for a start the support I have had so far has been lovely and I couldn’t find better. I just feel that when I see the posts that I can’t contribute as I have no knowledge of the conditions (haven’t even heard of them) most have.

Maybe I’m just having a bad day.

Bel xx

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You don't actually have to be an expert on conditions to give someone a pat on the back and an encouraging word. Sometimes that helps more than an in depth medical analysis. You are having a bad patch and that's perfectly fine. We are here for you whatever the reason. xx ❤🎶

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Thank you x

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I have never found the need to quit any forum Bel - always keep my options open! I have it very easy compared with loads of other members, just well-controlled asthma, my doctor doesn't mention COPD anymore so neither do I. I think that makes your seat on the board far more relevant than mine, but I'm remaining until I'm kicked off. It's never been all about one's condition; it's a place to see wonderful pictures, to read great poetry and to share problems. Go cool down and have a little re-think, you may be the one person who can help someone cope.

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I don’t think any of us has it easy and no one is more relevant than than other. We all have ours crosses to bear which I have come to realise. Being on here will be good for me and I hope I can be of help to someone in the future. Thank you.

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Bei do not apologize for anything at all! Given that you have only one lung & it is asthmatic, the heat surely has a huge negative impact. It's more than enough to make even someone with two working lungs feel down in the dumps at a minimum. So don't leave the group! We support each other no matter our different challenges!

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Thanks Lyubov, this heat is literally a killer and all of us are will be suffering at some point. I can’t even leave the house as it feels like someone is stomping on my chest. So it’s nice to be part of this community.

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You’re totally not a fraud. And many of us have not been through what you have, so we maybe can’t offer advice from experience, but we can offer you support and friendship. So please don’t leave! But maybe you’ll find another community on here that’s for conditions more closely related to yours where you can get more practical advice, that you could join without necessarily leaving us? Wishing you all the best anyway 💐

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Before I joined this group I had tried several for Cancer Support but they usually centre around Breast Cancer or I couldn’t navigate them. Thanks for your kind words. Maybe what I need to do is look up the conditions you all have so I can understand better and can contribute more. X

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That's an incredibly generous thing to say when I'm sure you have plenty to deal with concerning yourself. There are people here who have or had lung cancer but even they probably won't be going through exactly the same as you. Everyone has different experiences and if more than one condition is involved it will affect things in different ways. The BLF has info about lung cancer that may be relevant for you. Here we also talk a lot about pets and gardens and poetry and other stuff. If you're wanting companionship or something to take your mind off things that's the ideal place to be for laughter and friendship. I hope you can find something in this group to be a support for you.

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Hi, I don’t live with COPD but care for my Mum who does. If you’re a fraud then I really must be.

But I actually get such great support, advice and information here, I have never felt like that.

This is often the only place I know people understand what I am asking or ranting about.

And it is the British Lung Foundation, not COPD exclusive.

So stick around. I would suggest.

I attend other support groups and they say ‘ look at the similarities, not the differences.’

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Thank you.

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It's people like you that this forum needs, everyone on here comes for advice, empathy, and we are all different, which makes the world go round, non of us are perfect, we all put the loving arm around sufferers regardless of their conditions, the humanity on here is second to non, we all get angry, frustrated, and sad, and that's the whole point of us discussing our issues, to offload our problems, and in return nobody has no ill feelings towards each other, the respect to each other is as close as a marriage, this forum will give you hugs, and it will never be judgemental,don't be a stranger, and we are always around, thank you.

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Can’t believe all the support that I have had. Maybe I do belong here, thank you.

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Told ya so.

👍

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Know it all 😊

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In my head at least.,...

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Dear Bel1966,

Now listen, to me, YOU are Not a 'Fraud'...I'M the Fraud, I don't even belong here At ALL. I have Vasculitis- that has affected my Brian, Heart and Kidneys....See no Lungs, at all (well so far anyway!). That you have had Lung Cancer and indeed had a Lung Removed, does Definitely, 'Qualify' YOU for Membership! (I'm only 'Here', by virtue, of having an 'Autonomic' Condition- in other words being a Member Of The Same 'Overall' Club.)

YOU have been 'Warmly Welcomed' by, other Members, here and- I can Assure You- They DON'T Want YOU to Leave...Honestly they Don't! Put it 'this Way'...A new Lady Moves into, your street, Yourself, Carol, Bob, Mary, Rita and the rest, knock on her door, and Welcome her. She accepts, your offer, to meet at the 'Haybridge Centre' then DOESN'T Turn Up. How would you ALL feel?

By All means DO 'Find' other Forums, on these pages, I have and so have, I would think, most of us. We haven't 'Left' here though- I haven't Left 'Vasculitis UK', 'Positive Wellbeing', 'Headway' or any of the other 'Forums' I am a Member of. There is a Lovely 'Forum' on Healthy Eating, with LOTS of lovely recipes (some by me).

Have I Persuaded you to Stay yet? I DO hope so.

Friendship Wishes, from us ALL

AndrewT

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Wow AndrewT, what a lovely speech. All of my replies have made me rethink, maybe I need to get to know the conditions of all as that has what made me think I don’t belong. All other Cancer sites focus on the more prominent ones and Lung Cancer seems more of the least.

Thank you

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Dear Bel1966,

I'm glad that my words have, in part anyway, made you re-think leaving here. Can I ask you a question though....In what way is Lung Cancer NOT as important, as 'Other' Cancers? Sorry let me better explain....Breast Cancer? You can live without Breasts- I admit that this is NOT an ideal situation. Cervical Cancer? You can have Major Surgery, that removes most- possibly ALL- the Uterus (Womb). Again NOT ideal, not by a long stretch. Now, what about Lung Cancer? One lung removed, you are SEVERLY impeded/ limited in what you can do. Two lungs removed you are either Dead, or 'Tied' to a machine for the rest of your life!

Can I repeat my question please....In what way is Lung Cancer NOT as important, as 'Other' Cancers? I could 'Go On' Bel but I DON'T think, at least hope, that that is necessary.

Can I ask YOU a question? 'Why'? No, What makes you think that you are 'Unwanted' here? Is it that, or do you think that you are not 'ILL' enough? There Is 'Something' isn't there? Do you feel that you are Unwanted somehow? Please Just Re-read your 'Posts' Bel...You Have Had CANCER, you have had a Lung removed- you had a VERY serious illness- that you were 'Lucky' to survive? In What Way DON'T you Qualify? As I said, several times now....In what way are you not F..King entitled to be HERE? (now you have made me use a 'Cuss' word).

I'm going away, for a few days, Bel so if you, start to, doubt your situation then, you guest it, re-read 'ALL the 'Posts' up to here! I Will Pray, for you, Bel I Promise- I think that we ALL Will.

Sending you my VERY BEST WISHES

AndrewT

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Please don't leave and you are certainly no fraud. This site is for everyone with breathing problems no matter what the cause. We are all here for each other, to give support and friendship and a little advice when possible. So please stay and remember we are all here for you, have a fantastic weekend and take care of yourself 😊 Bernadette xx

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Thank you Bernadette and have a lovely weekend too. X

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Hi there is a site on here for cancer sufferers called The Roy Castle site. Why not join there as well? x

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Hi, thanks I hadn’t even thought of that, maybe a will try them. As well as staying on here after all the kind wishes. X

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Good I am glad you are staying. :) x

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Here is the link for you

healthunlocked.com/lungcancer

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Thank you x

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Hi Bel, you do not need to know what a condition entails to comment. I knew nothing about these condiitions when I joined. Most of the time we all need a little encouragment and I think this group gives that in bucket loads. Its more like a family group discussing the day, and the fact that you have had a lung removed should make you feel like you belong. I will be sorry to see you go if that is what you decide but please do not feel like a fraud x

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Thank you 😊

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Hi Bel, not many people have IPF either but I love this group. Like you,I don't understand a lot of the other conditions and don't think it's necessary? We all have dodgy breathing apparatus!! I love to be able to give others a virtual hug when they need it and to share experiences if I can.There are the poems,jokes and pictures etc which prove we can still enjoy life.Absolutely no need to leave or to feel you have to know everything.X

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Thank you 😊

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What lovely replies you’ve had Bel and I understand you’ve had lots of support. I’d stay for that reason and for friendship.

Trust me, I don’t always know what people are going through but I’ve learnt so much over the years. This is a great site and, even as a carer, I wouldn’t be without it.

Hope you decide to stay and I wish you well whatever you decide to do. Xxxxx

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Hi sassy59, as you have said the lovely replies have made me think again and to stop feeling sorry for myself. Thank you xx

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Morning Bel, No One is an Expert on all the Different Lung Diseases there are, I only thought of mine when I joined, I soon found out from all my Friends on here how wide Spread the Different Types of Lung Diseases there are, Still not very educated with them, All I know is this Forum has been very very Supportive in all Posts I have put on well over 100 +. They are My Family when I need them and receive I so much Kindness. My Friend at my exercise Breathe Easy Classes, on oxygen like me, has been doing Clinical Trials, I thought for Emphysema like me, after all our time together & building a Friendship she said No, for Fibrosis, I Didn't know, so we are all Different, Friendships are formed regardless of conditions. Please Stay and if you see anyone Down , give them Support. We are Just in The Next Room. Love n Hugs Carolina XXX

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Thank you 😊

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Bel I sometimes think I'm a fraud on here as my condition is mild and I don't understand some of the dialogue however I have gained lots of support and knowledge also lots of laughs. You however have had a lung removed and have asthma in the other - you certainly belong here. You have had wonderful replies from many people. Sometimes it's just nice to talk or listen and join in the silly banter that may occur which lightens our days. I am so in awe of people like yourself and severe sufferers of COPD, bronchiectasis etc As suggested maybe join the Roy Castle site too. Since joining I have found out about the sleep and ulcerative colitis forums which I also contend with - my life has been better for all of these . Take care. Anita x

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Me too! x

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Thanks Anita, you take care too x

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Well Bel1966, I don't see anyone on here as a fraud. Not all breathing difficulties are due to ongoing illness they can be due to past illness causing reduced lung function. This site is for all people with lung problems and their families. I beleive Healthunlocked has a cancer site too. Heres hoping you will stay with us or maybe pop in now & then. Bye for now

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Bel I too feel like a fraud at times. Yes I do have emphysema but in comparison to others I have few problems. There may not be many with your problems but who is to say that tomorrow someone will join that can find hope or comfort from reading your posts or comments. For some people just knowing their not alone with their breathing problems, no matter what it is is a comfort.

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I too hope you stay and do feel comfy doing so. Hugs and best wishes with all that you are going through. x

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Oh Bel don’t go look at all the replies you have had, we want you to stay so that’s a yes, hope you agree with us x

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When in our darker moments, struggling with our long term health conditions, it’s so helpful to be able to be part of this community. Of course each one of us is unique in how the condition effects us so even if two of us have asthma, as I’ve got, triggers, management etc will not be the same. But having the support of others who know what it’s like to feel vulnerable, helpless, frustrated and upset is invaluable! So thank you to all who supported me in my dark moment some weeks ago and hopefully to others just knowing we are here can be a support to you. There’s no judgement here is what I found out ..... hoping the warm weather is enjoyable and have a lovely long weekend!!!

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You have just as much right as anyone else, if you enjoy being on here then carry on, no one is going to stop you, it's good to talk to all the very kind,caring knowledgeable people who regularly contribute in here, you MUST carry on reading and posting you are another valued contributor.

Good luck and take care.

Bobby j

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Dear Bel1966. This is just a web forum for people to join and gain or give information/support or reach out to on bad/good days; simply that - it has no hierachy. and whether people can participate or not is not even an issue. Every single person (here or elsewhere) is a valuable person - you too!

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Hi Bel,

"Why dont you stay-ay-ay-ay-ay just a little bit longer?" Seriously.

Look at all your replies. You are just the kind of forum member we need. You sound empathic, responsible, caring - that's exactly what we need here. And if you dont feel you know enough about other lung conditions, just ask questions so you can understand what is being posted. I would be happy to answer when I am able anything you wanted to know and Im sure others would too. Together we are strong :)

So please don't just stay for a little bit - just stay :) :)

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How can I possibly leave now-ow-ow-ow. Thank you 😊

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Simple Bel - you can't! :) :D

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😊

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Hi Bel1966. You are not a fraud. None of us are. I am recently new to this group. And had an eventful month. But i have had messages and support. From people on here. Who may have completely different conditions. And stages to me. But by putting your story on here. You are not only getting support. You are also getting advice from people Further down the line. Who will support and advice. Anyway. Think we have taken the vote. And want you to stay. BRIAN

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Thanks Brian, obviously I have been out voted so will go with the majority 😊😊👍

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Hi Bel I think when we feel down or under the weather we all go down that route of thinking we don’t belong or what’s the point of this and that. If I feel like that I stay in the background and just read what’s going on. When I feel better I join in as everyone has said everyone is welcome.

We all have levels of illness but that’s not what this site is all about it is many things.

I’m glad everyone has asked you to stay and that you will. Remember we all have different problems and can’t join in with every subject. X

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Thank you x

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You are in no way a fraud. You are one of us, you belong here. I myself am currently cancer free (I hope), but I lost both right and left upper lobes to lung cancer, I also have emphysema (still mild as far as I know), and (half treated?) sleep apnea. I belong to a few groups, for COPD and for lung cancer. You can and should belong to more than one.

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Hi Bel1966

You are not a fraud, one lung removed and asthma, in my personal opinion you belong here, even if to read posts.

I don’t have COPD asthma or emphysema but some weird lung disease I can’t even spell. So if anyone is a fraud it would be myself.

I hope that even tho I may not understand these conditions I can offer a cyber hug and support. Different people have different illnesses, different needs etc etc none of us know everything about everything.

Tomorrow is a new day and I’m sure you will feel better. I hope I do, sat in sun watching footy, burnt myself and the team lost 🙁 What a beautiful day!!

J

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Hi Bel1966

Very pleased you decided to stay on here and I don't think you need to investigate all the different ailments - just investigate how nice the people are, that's what counts! :-)

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Hi mani you are so right.

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I forgot to mention - I am a secondary cancer sufferer along with bronchiectasis and a few other bits and bobs so you see you are in the right place :-)

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😊

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Hi Bel

Don't go, new people are joining all the time and there may be someone in the future that only an answer from you can ease their distress. That alone would be worth staying for, but let's hope it doesn't happen.

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Thanks

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