I haven't posted for over a year, as my daughter knows my name on here, and I did NOT want her to know about the outcome of the consultation with the consultant. In the beginning I had nothing but praise for her, (the consultant) that is why the following came as such a shock.
I was really hoping she would suggest something else for me to try after I was rejected by the Royal Brompton....... how WRONG I was. I was feeling quite rough and my husband gave her a call she said for me to come and see her. This I did and we arrived for the appointment, were ushered to a room where she just said. "I am very sorry, but there is nothing more I can do for you" it was like she had thrown a bucket of cold water over me! in my shock, I asked her "how long have I got?" she bluntly said " 2 to 6 months!. I will give you some Morphine!" We stumbled out, my husband went to get the Morphine. The only instructions we were given was !"take as needed"!. When we got home, I took a teaspoonful, within minutes my head went all woozy and I felt and was very sick.
Now I know Dr's can be quite blunt, but this in my view was really over the top.
Has anyone else been treated like this. is so how did you cope?
My grandson's wife is a cancer surgeon, when she heard the above she was outraged, and said COPD is not a terminal illness, it depends on a lot of things, also she remarked that only God knows when it is our time to go.
Have any of you been treated in a similar way? By the way my 6 months are up and I am still here! tho each day its more of a struggle.
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I’m so sorry to read your post Woofly. You have not been treated well at all. Even if doctors can’t help there are those that can. Was palliative care mentioned? I’m sure others will be along who have other suggestions too. I’m so glad you’re still here and hope you get better support and help. Xxxxx
That is horrendous. You do not deserve to be treated like that. If you have been discharged by hospital consultants then they must have discharged you to your GP. Do you feel that your GPs are helpful? And what about help from your local hospice? Hospices exist for those with life-limiting conditions that no longer respond to treatment. Help from them is not a death sentence.Let us know how things progress
I think the doctor treated you terrible, so much for compassion. But I'm really pleased you are still here, please keep fighting have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx
This is just awful Woofly. You probably haven't got the energy to put in a complaint about this (so called) consultant however, she definitely needs a complaint against her. Is the morphine product Oromorph? It is a very very low dose of morphine, many members take it especially to reduce coughing. If you're feeling lousy again healthwise its best to start with half the dose to get your system used to it. Perhaps take with a little food, something like a cracker.
I do hope your GP is more helpful and supportive. Thinking of you.
PS you can change your name via your profile, click on your picture top right. ×××
Woofly without really knowing where you are with your condtion in terms of stages etc etc i am still quite shocked at this flippant attitude,if you have been discharged back to your Gp a definitive care plan for your future needs should have been both discussed and implemented.also it is dangerous to prescribe morphine or probably Oramorph in your case without discussing it's doseage and potential benefits and it certainly should not be administerd by the tea spoon as and when required and you should have recieved specific details and a suitable syringe to extract the correct doseage from the bottle.Sorry i am gobsmacked by thier attitude and suggest you contavt your Gp forthwith.
Doctors seem to need lessons in empathy it seems. That should be part of the criteria caring for the ill. Even if she is unable to offer more in the terms of medical intervention, she should have arranged for some kind of support like palliative care. I would have thought she would write to your GP suggesting a care plan be arranged. But what do I know?
The two to six months thing, I would completely ignore. They go on statistics and you are not a number. I know people who have been put on hospice care only to be discharged and are still going today.
The morphine usually makes you sick the first couple of times. It takes getting used to. I hope your GP can help you. I also hope your daughter is completely in the know about your condition. My mother keeps things from me and it can be very distressing.
Am so very sorry that your consultant said this.A very well respected consultant I saw made it plain he would rather have a pair of lungs sitting in a chair to examine than the person they belonged to.No one knows when it's our time to go and this news will have shaken you to the core.
I know NHS services are stretched at the moment -could you see a psychologist?Mine specialised in hospice care /support and how to live life as you need to.
It also helped me to talk with someone outside of my family.
I am holding you in my heart and thoughts.
You are a unique and beautiful human being not the sum total of a doctor's opinion.
Hi woofly,how bloody inconsiderate of your consultant to tell you this so bluntly and very scary to hear no doubt .I would let the patient careline know that the consultant is so abrupt . You keep fighting to be here as long as you can x
You are being treated very badly Woofly, so you need to be proactive. What about phoning your local hospice for their advice? Also book an appointment to talk through your problems with your gp, please don’t just lie down and accept this appalling treatment. Be strong! Best wishes to you..
wow what an horrible thing to tell somene when they have no way of knowing how long you have left. I would put a complaint in about her.
Hi Woofly. What a horrible shock for you and such a callous way for you to be told. The morphine will help, but not without proper instructions on usage. Please arrange to see your GP and ask him to refer you to the palliative care team. Palliative care is not a death sentence, they are specially trained to help you manage symptoms and be as comfortable as possible. I was told I had two months to live eight months ago and still going strong so please do not think this is it. Carry on as best you can and try and get some advice, from your hopefully more compassionate GP. Stay strong and whenever you feel like a moan or just a chat we are always here. Sending you big hugs. John 🤗🤗🤗
Hello Woofly. I am sorry you have been treated like this and I think you should complain. Because I too have severe copd which was diagnosed 2 years ago and I still get around town walking and leading a near normal life. But obviously struggle with stairs and hills now. Getting out of breath. But from reading on here I know its all down to mindset and determination..I also had experience of my Father was diagnosed with throat cancer which was terminal. And the one day we went to clinic and seen this junior doctor and he said to my dad without chemo you would have 3 months to live and with chemo it might be 6. And I nearly gave him a smack because of his callas way of saying it. And also some people don't want to hear anyway. But I made a point of going back and seeing this junior doctor after my Dad had passed away and informed him my Dad actually lived 18 months after his remarks and he apologised to me. Hope you keep well and positive thinking. Brian
I’m so sorry to read your post. The way you were treated was appalling. Even if there is nothing more they can da there are much better ways of saying it. What about palliative care, did she mention that? I’m so glad you’re still here, you’ve proved her wrong on that count. Please let us know how you get on.
Hi Woofly, I am so sorry to hear of your daunting news, and I know exactly how you will be feeling, I experienced the same when my husband was told quite bluntly that he only had 6 months to live, your whole world falls apart.💔However my husband proved them wrong and lived for another four and half years!!! However I found living with the diagnosis very hard as once we passed the 6 months, each day I kept expecting the worst to happen 😪😪
I wish you well and just try and live for each day, my thoughts are with you.
Hi Woofly, my husbands consultation told him bluntly to get his affairs in order as they could do no more for him, the shock of being told that is a wonder he didn't die of a heart attack. He lived for another 4 years, so please ignore that heartless excuse for a human being.
I am so sorry for the disgusting uncaring and unhelpful way you have been subjected to .COPD IS NOT A TERMINAL DISEASE. My doctor and hospital consultant laugh at me when I get down=. and tell me I am more likely to die of old age!!
No one not even a specialist lung consultant can intervene with God's will and as you have proved them wrong in their assumption, Ignore it keep taking your meds and try gentle exercise breathing and walking.
That's just awful my hubby had surgery for lung cancer in may as far as we know from September's checkup things are ok , I had to take hubby to the gp on monday he was from a different surgery just covering and he said have you had that difficult conversation yet (end of life ) I think is what he meant so hubby and I came out of there fee6so down and depressed so yes know a little of what you were saying xx
Yet another consultant who should not be in the healthcare profession, and should be ashamed of herself. What happened to the caring aspect of their job? Please do complain about this waste of space 'consultant'.
I am so sorry that this happened to you I had a similar experience in March this year and even though I have a reasonably positive approach it did undermine me for a bit. I did eventually email my consultant about the way I was treated and how upsetting it was. He has told me that he is now handling that interview differently. I also explained this to my GP who was very supportive and listened to my concerns about Oramorph. It now is a possible future strategy.
Remember that you are the person most equipped to make the right decisions for you so do use any help you can get from your GP and respiratory nurses. Consultants look at numbers and classify accordingly. They are useful but don’t tell the whole picture.
I hear how much you are struggling and send lots of love as you and your family deal with yet another change
I’m in the states so I know things are different, but my mom was told the very same thing. She went to a different pulmonologist and lived 25 more years! Please don’t give up! You were treated horribly!
I have been told three times that nothing more could be done, twice by consultants and more recently by my GP last week.
The first consultant was abrupt and dismissive, the second quietly matter of fact after having treated me for over 2 years and exhausted all options.
My GP last week very quietly suggested that he was looking towards end of life care moving forward but there is no plan in place that I am aware of. Of course end of life doesn't mean that is imminent. I have never asked what my life expectancy is because no one knows. There are days when it is very difficult to cope when struggling with worsening breathlessness.
I hope that you can get support from your GP and come to terms with your situation and make the most of life. You might also consider changing your user name so that you can get the benefit of the wonderful support here without your daughter seeing your posts. Best wishes.
Hello CDPO16, I finally plucked up the courage to tell my daughter as I knew she was suspecting something was wrong. She is very proactive in getting all the right treatment for me, also sending a complaint to PAL. Best wishes x
Hi, it's for the best I think and I'm sure she will appreciate it and you her help. Do keep in touch, we will all be here for you if you need us. Carole xx
I’m shocked and horrified at the abrupt and inconsiderate attitude. Should make complaint, not acceptable even on busy days. Hope your consultant is very wrong. When my late husband was told that his prostate cancer was terminal it was done in a better manner, but was still shock. He lived just over two months. I’ve posted here before that PSA blood test is totally unreliable, but as his reading was always low refused treatment until too late. Jean x
I cannot believe the amount of lovely replies I have had🤗 thank you all so very much it has meant so much to me and helped me too! I am so fortunate in having my wonderfully caring husband who is there for my every need, (even if I don't need anything!) and my daughter has given up her life abroad for the moment to be here too, so I am truly blessed.She is preparing a complaint to the PAL department, hopefully at least they will see that any future patients are treated and spoken to with a bit more care.
It is such a relief to be able to post on here again
Just come on and have read your last post, which was so reassuring after reading about the appalling experience you had with your consultant. What lovely replies you have had Woofly, all with tremendous encouragement and support for you. I would say take a day at a time and enjoy the good ones, sharing the moments with your hubby and daughter. Just pop back and let us know how you are getting on. Thinking of you and sending hugs xxx🤗❤️🤗
Just read through this thread and I'm so happy for you to have such wonderful support from your family. You were treated appallingly and I admire that you've bounced back with a positive gleam in your attitude. I can't say I know how you felt being talked to so negatively, but I do know being shocked and sad gets you nowhere and your last post sounds like you've shaken that off and assigned it to the trash bin. Good for you and wishing you the best!
Hello lovely people. I am Woofly's daughter and just wanted to thank everybody for their wonderful support towards my Mother. I am preparing a complaint to send to the PAS so this won't happen again to another poor soul. I am also hoping to get a response soon so they can point me in the right direction so to prepare for hospice/palliative care so that we can meanwhile enjoy our time day by day. Thank you everyone for your replies. 🤗🌻
What can I say I'm having the same ok lack of empathy I'm stage 4 emphysemia granted my health has taken a nose drive but new treatments like zenphr valves and steam ablation go see another lung consultant get a referral to another hospital I was turned down by royal Brompton I ranted at the consultant it was a mistake by the hospital now I'm waiting to hopefully have valves all I'm saying is when one door closes go through another one sending hugs and best wishes 😊
Hello, Did you go privately after the Brompton turned you down? and do they use the Steam Ablation treatment for stage 4 COPD? Good luck with the valves! do let us know all about it.🤗
Woofly,steam ablation treatment is in its infancy at the moment in the Uk and the patient criteria for acceptance is very low,after my valve insertion treatment failed to produce results i discussed it with my consultant and he said that my advanced condition would fail to meet the criteria,the alternative of LVRS laproscopicaly which is less traumatic than full open chest LVRS still requires a general anesthetic and it is very hard to find an anesthatist to accept the responsibily given that i have so little reserve so often there are no more treatments on the table.As i said before i am not custom to your complete condition and perhaps you have already had this dicussion with your consultant?
I waited a year for referral to Brompton they turned me down for steam ablation saying I wasn't good enough and yes still doing steam ablation for stage 4 ask for referral good luck
I’m so sorry Woofly that you have been treated this way. About 18 months ago I had a funny patch on my leg, I did an econsult and sent it to my go together with a photograph. My then go phoned me and said “That looks like cancer I’ll refer you, you’ll be seen within 14 days.” I went into a flat spin I could not believe my doctor had been so flippant with a diagnosis. I went to see a skin specialist who immediately dismissed what the gp had said and informed me it was a patch of eczema. I cannot understand these doctors. I wish you all the best and hope your gp will be more supportive Barbs x
Good gracious, these Dr's are certainly not trained in how to relay things to their patients are they! I CAN very well imagine how you felt, thank goodness everything turned out ok in the end
Just a quick question🤗 I am suffering with horrible (don't know what to call it 😑) nausea, right at the top of my ribs in the middle. I have taken everything known to man for some relief but nothing seems to work. Some years ago I was given Domperidone (not the champagne!!) and that gave me some relief, but I was told not to use it for more than a week.Any suggestions anyone PLEASE
That’s dreadful treatment. I asked my GP at the time if my results come back that I’ve got Bronchiectasis , he basically replied your lungs are knackered.
Hello lovely people. Woofly (my Mother) passed away peacefully on Tuesday surrounded by her loved ones and was cared for at home until the end. Thank you all for the support you have given her over these last few years. 💜 Sending healing vibrations to you all. 🤗
Dear Sallyso,i for one would wish to convey sincere condolences for the loss of your mother Woofly,we thank you for telling us that she passed peacefully at home amongst her loved ones,we where all somewhat shocked at the treatment she received from her previous consultant,who sadly predicted her outcome without compassion but i am sure we are gladdened that she was surrounded by those she loved.thank you for letting us know of her passing and for your very generous healing vibrations which are most welcomed.Ski's and Scruff's x
Oh no, dear Woofly, I’m so sorry to hear this, Sallyso. Your mother was such a character, a fighter, and so upbeat too. It’s such sad news, but I’m pleased to hear she died at home, with you all around her. I hope that’s some small comfort to you too.
Obviously we do lose our friends here from time to time, but I can assure you they’re never, ever forgotten.
Dear Sallyso, my sincere condolences to you and your family on the loss of your mother. I hope it gives you some comfort that she was cared for at home and with her loved ones at the end. Thank you for letting us know.
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