Nothing more to do palliative care it is just trying to live my best life possible. So I went to immeadiate care cause I felt I needed antibiotics and I got them and prednisone but also chest X-ray. Chest X-ray showed an area that could possibly be a cancer but I would be unable to with stand surgery to remove it or needle biopsy to see exactly what it is. Pulmonologist said it is dangerous to try and that there in a better than 90% chance I end up on a ventilator and I have already decided that I prefer to be DNR/DNI. This is so hard and the first time I will not know exactly what is in me that should not be there plus the area it is in is very close to my heart and aorta. I don’t want to die but its coming I ask if you pray please say a little one for me. I’m not quite sure how to tell my family or if I should leave the oblivious to this side of what is going on. I’m already on palliative care which is not far from hospice which palliative nurse has recommended on her first visit here at my house. I looked for some support groups on facebook but left them as most on there still have hope of a lung transplant or just plain hope because the all knowing doctor they have put their faith onto say take this it will slow progression unless you are like me where it sped up progression. I tried to remind all that doctors are not Gods and if the feel worse not to think its just a side effect. Also that in America these Centers of Excellence do have better outcomes because they only bet on a sure thing meaning the standards of choice of who gets help are higher than the normal selection. Also they pay their staff better they get donations from large corporation like Walmart and Boeing to name a couple. A person can’t just walk in get evaluated either and insurance is taken into consideration. You have to be referred by a pulmonologist who has evaluated your lungs and heart, and if you have pulmonary hypertension you will not get a referral. I call it discrimination and think any where one goes should be a center of excellence but that’s just me. I think everyone deserves the best care available across the health spectrum. I often wonder what people think whenI post this here in America we are so post to all have insurance but public health aid won’t cover my son because they say he should work but he has agoraphobia and no money to seek out help and now the mental health community only wants to accept cash and very few private insurances. I am running out of time to help him so I will just love him and pray that his father, brother and sister will find a way to help him. America the land of opportunity if you are rich to begin with at least now a days. It is so hard for people who can not afford insurance or work for employers who purposely stay under the 50 person mark to say they don’t have to comply and get insurance for their employees. I just wish people would see the difference in class and demand better I certainly wish it would make a difference but in my case sadly it would not....but for my children and grand children perhaps it would. Blessing to all. Think about the world....
Palliative Care: Nothing more to do... - Lung Conditions C...
Palliative Care
My thoughts and prayers are with you and your family. I hope your son gets the help he needs and your family get the support they need to deal with all of this. But I honestly hope you get all the love and support you need, take and God bless you all. Love Bernadette xxx😊
Thanks I’m going to tell them after my Son gets married that’s August 1st. I do not want to put this on anyone or take away from the excitement. So after the honeymoon....for my son and his bride....everyone else the weekend after I wouldn’t want them to be shocked if I just drop.... really thank from the bottom of my heart.
So sorry Docmel..Thinking of you and the world..💕
Fran xx
Thank you for posting. Things are so hard for you now, particularly with the added worry about your son. You say that you do not know whether to tell your family. It is none of my business and obviously I do not know them, but my gut instinct is to say that they would want to know. And you need all the support you can get.
Love and hugs
Kate x
Hi docmel I will be thinking of you and praying for you and your family. I am so sorry to know how things are for you. It can be hard to tell family when things aren't going well because you don't want to burden them with worries but I agree with the others here who think your family should be given the opportunity to deal with it and to be able to share the burden with you. And to just be there with you.
I’m thinking about you and saying a prayer too docmel. My friend in the USA tells me about her medical insurance so I have some understanding of how things are.
Sending my best wishes to you and your family. Xxxx
My prayers are with you, with love xx
Dear docmel, You are a very Brave person, To put your Heart in your Heartfelt statement. I agree with our Family here that your Family would wish to know. I send to you my love & wish you & your Family my Best Wishes. Xxx
Hi docmel it’s made me feel very sad reading your statement it’s a cruel world sometimes I am thinking of you my prayers are with you And your son xxx
Thank you for the prayers.
My heart goes out to you, and you and your family will be in my prayers xxx
Dear docmel,unfortunately i can not pray for you being a non believer but that doesn't stop me wanting you to be free of pain and anxiety and hoping that you can achieve within your dodgy and often unjust medical system some degree of comfort and support and also do involve your loved ones as i am sure they want to help you in your time of greatest need.....Best wishes Ski's and Scruffyx
Sending prayers and hope for remission you x
Thinking of you docmel. Where there is life there is hope so don't give up please. xx
Such a brave and open message-sorry for your news and happy to pray 🙏🏽.
When my sister died she didnt tell me the truth until i found out when she had less than 12 weeks to live-as a result she shut me out and i couldn’t reach her when she needed me the most. I think she should have told me and i could have supported her so much more.
Family are surprisingly capable of supporting loved ones through a difficult journey and there can be a closeness and intimacy that is very tender.
Take heart-choose your moment and share your news please dont do this alone.
God bless
Love
Janzo x
Thinking of you 💐💕
Praying for you. Majt 💕 🍃
What a terribly sad situation you find yourself in. Like you, the thing i would find hardest would be telling my family. I think honesty is always the best course of action for me. For you it depends on how you feel. If you cannot say the words, would putting it in writing help you. Maybe even have your nurse present to answer questions if you do not feel up to it.
I was already very sad reading your post, then you mentioned your poor son. I suffer with agoraphobia and i know very few understand it. I hope he finds someone sympathetic to his situation.
I hope you find a way to do the things you want to do.
Wishing you all the best xxx
Prayers and big (((hugs))) docmel.
I am very sorry to hear of your struggles and sorry you can’t get a proper diagnosis. Even if there is nothing they can do it’s nice to have answers. Definitely tell your family. You need all the support you can get, please don’t carry this burden alone. Take care, will be thinking of you.
notice you say it could possibly be cancer,so its not confirmed yet ? A year ago a white mass showed on my xray, so I was sent for a scan, and it was gone ! But I had several weeks of worry waiting for the result. I pray things work out for you.
Hi docmel .
First of all congratulations on the wedding of your son . What a joyous occasion for you and your family. I hope you enjoy the day.
It is hard to know what to do in these circumstances. There is no easy way to receive or give such news. I think we often worry more about hurting others instead of what is right for us. I am so glad you are going to speak to your family after the wedding. I think we can't go too far wrong with the truth at the right time.
Sending love,
Cas xx 🌹
Praying for you now docmel and sending huge hugs🙏💕. I am at end stage COPD and life is very restrictive but I’m trying to enjoy seeing my grandson and the occasional coffee with friends, I know your fear, I was given two years to live after breast cancer so read avidly and tried to find peace with it. I decided to enjoy life until symptoms of metastasis alerted me, not to waste what life I have. Their prognosis was wrong, although He treatment caused me to leave work, and it severely damaged my lungs.
I would have thought an MRI would provide you with a diagnosis or a bronchoscopy under IV sedation, which I’ve just had, along with other folk with end stage COPD. Yes, do yell your family, but as the Drs are not sure, maybe give them and yourself hope that you could be here quite some time yet and maybe get a second opinion if that’s possible. Take care my love, and cherish your family with a wedding to look forward to. I nursed for 38 yrs and learned that no one is dying, for whilst you’re here you’re alive, and a mother with cancer is still a mother, so please try to embrace whatever time you can with your friends and family. Drs are often wrong, as with me, about prognosis and diagnosis, so don’t take their word as gospel! They also look at the worse scenario scaring people unnecessarily.
On my last admission I was told my condition is-deteriorateing and there is nothing to be done but wait for the end!a new doctor decided a bronchoscopy may reveal something they could treat, like aspergillosis, so you never know! Keep in touch hon. Fingers, toes an d legs crossed for you! Xxxx
Thinking of you , Sending prayers. I hope your son gets help and you get support ands the care you need.
Hi docmel, I'm sorry that you are having such a terrible time at the moment and I don't really know what to say. With reference to whether you should tell your family or not I think I have some insight as to what you are going through. I am, basically, very ill. Recently I was told in no uncertain terms just exactly what is going on and how long to expect provided there were no other factors involved eg infections, etc. None of it was of any surprise to me but it put me in a similar predicament to yourself as to how and when to tell my family. I have to say that this was harder for me to deal with than the actual prognosis. After much indecision I eventually confided in my one and only confidante, a woman I feel closer to than anyone I've ever known before and whose judgement I value immensely. She didn't let me down (she never has,) and she told me, after some discussion, that she thought I should tell them so that they have time to prepare, be able to help in ways that they would'nt be able to if they were unaware, etc. I told my family and it was quite remarkable as to how they took it and furthermore the feeling of relief and release I felt was amazing. Now, I would never dream of saying that what worked for me will work for you but I hope that my decision may help you to decide what's best for you. I am not religious in any way but I wish you nothing but the very best and I hope things turn out good for you. Take care - Nick
Dear docmel, all I can offer are my prayers and my love. You are carrying a heavy burden alone but once you decide on the right time to tell your family they'll be ready to support you with their love. God Bless, Sheila xxx
I will pray for you and your family, with all my heart. My Mother was given
three months to live and she died last November. All her children, grandchildren, and great grandchildren had the opportunity to say their goodbyes, it was as perfect as it could be and was quite spiritual. She was very brave and had excellent home care. Bless you
I hope you are still as well as possible, I have just had my second scan, last one in May and one of 'ganglions' they call them here is growing, last CT scan it was 12mm, now 15mm I know that is not large but that the fact that it is growing at a reasonable rate is alarming. Like you nothing will be done I am told. Don't think I will tell family until maybe a scan or two later just to see how it is growing, I am sure I can feel it, it is at the junction of my lungs and trachea. The doctor reviewing my scan said it was not *beautiful* lol, so very French (I live in France)
Not what you're looking for?
You may also like...
Palliative care, does it still exist?
End Game. Advice on Palliative Care.
Dental Care for housebound person
After years of being careful...
Accute & Chronic Lung Inflammation?
Variable Asthma and pain medication.
Bad chest x-ray and no dx in sight
Misdiagnosed with COPD
ILD review letter? After Lung Function Tests 
Sunday’s poem ~ The Toys
