Big Shock ! : Had a telephone call from... - British Lung Foun...

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Big Shock !

Beachballs profile image

Had a telephone call from the Respirotory Nurse late Thursday afternoon, asking for my Sats readings which she asked me to record from December, I knew that I had declined slightly but was not overly worried. However this seemed to send her into a panic , which I have witnessed before with the Consultant. She immediately said she needs to come and see me , and there were lots of things she could do for me , she was going to do a gas test which is ok , no need for worry there, and then her next statement floored me , she said she can refer me to the local hospice as they work closely with them and also to a lovely consultant. I was in total shock as was not expecting this. I just don’t feel ill just breathless. I did say to her that I had a telephone appointment with my Consultant back in March and it was all rather odd as he was very kind and gentle but the conversation lasted less then 5 mins , I did ask then what stage of my illness I was in and he said severe and he would see me in 6 months - that was it.The nurse then went on to tell me there was a letter on the screen that confirmed my illness was in the advanced stages. I just can’t believe it and am struggling to get my head round it. I am being referred to the hospice as an outpatient by the way not on the wards yet. Added to all this my husband is waiting for a hip replacement operation and had his pre- op appointment yesterday. Neither of us can walk very far for different reasons! Just had to offload , thanks for listening.

41 Replies

Oh wow I do believe you that it must have been a shock for you. I am so sorry to hear this. But I saw your profile that you staying positive, that's great. Just take it easy and maybe it would be good to meet in person with your consultant, to speak about it, that the news came as shock to you.

But never give up hope, you still have your husband and he has you.


Having links to the hospice gives you more access to specialist consultant/specialist nursing team..... having them onboard I see as more direct access to care and management of your condition, also fantastic 24hr support. Wishing you and your husband well, take care.

What a shock you’ve had Beachballs but try not to despair. It would be good to have face to face appointments and to talk things through. The Hospice could prove to be a really good thing and very helpful.

I wish your husband well and will be thinking of you both. Xxxx

I was referred to a local hospice. Basically it was a meeting of all like lung patients and had a chat with specialist nurses, councillors, and physios. I think it was arranged to make sure your mental well being is good as well as keeping an eye on your condition. The bonus is they provided lunch. I stopped going after a while as it became just like a social club. Try it as you might like it. Good luck

I know just how you feel - 3 years ago I had a letter from my consultant saying that she was passing my case over to the palliative team who would be getting in touch. I was devastated and very distressed that no-one had told me the truth about my illness. What does this mean, how long have I got, do I need to put things in place? St Christopher’s hospice duly arranged a meeting and I was booked on a 12 week course. It was explained that palliative care does not mean you are “on your way out” but helps you to live as well as you can. I was booked on a course of exercise in their gym with a physio who designed a set of exercises specifically for me - 1 hour twice a week. Then there were various group discussions with about 5 or 6 others - all really interesting stuff relating to lung maintenance, mental health problems, sleep help etc. We all got to know each other really well and we’re able to bring up any problems we had and it helped so much to be with others who were going through the same problems as me. I also got a course of massage and art therapy which were absolutely fantastic and really helped my mental state. There were also a whole programme of events that we could just turn up to and enjoy. At the end of the 12 weeks I had a one to one discussion with a therapist to see how I was doing and she extended my sessions for another 6 weeks. At the end of this I was signed off feeling much better both in body and mind, but with the proviso that I could carry on attending the group activities and self refer if I felt I needed to. All in all it was a very positive

experience and I felt so much better. I am still under the care of a consultant as well which wasn’t very clear at the beginning. I think sometimes the consultants do not explain everything very well and they are not thinking about how we are feeling. They just deal with the physical not the mental side of things. I hope you get as much out of this as I did and wish you all the best.

Thank you for your knowledgeable response. It has helped me enormously and put things into prospective for me. I am going to update my family today and feel more confident now In approaching this , so they are not fearful . Hope you are ok and thanks again for responding.x🌷🌷🌷

Poor you, what a shock. From reading other answers to you, referrals to a hospice doesn't mean the end is near. It's a shame the nurse wasnt calm and explain things a bit better. It's good you feel well though, that's the main think. Let us know how you get on. Lots of hugs 🤗❤

Thank you all for your kind words of support, I do count myself lucky that up until this point , I have enjoyed good health , with just this wrong with me . My husband has been the one with the health problems all our married life , and I have always supported him . I have been the strong one for the whole family and even supporting cousin’s at the moment with their health issues !! I am heartened to know that links to the hospice opens up specialist medical help , so will hold on to that. Thankyou to vwtopaz for bringing that to my attention. Once again a big thank you, it truly is a kind and friendly forum for which I am very grateful. Xx🌷🌷🌷

Damon1864 profile image

Wow that must have been a really big shock, but it's good you are staying positive. You are an exceptionally brave lady, please staystrong. Have a good day and take care 😊 Bernadette and Jack 🐕 xxxxxx

Feel much more positive after reading your replies, and thank you Jackietickle for sharing your experience, strangely enough, St Christopher’s is where I am being referred to , so don’t feel so shocked now. I am trying to shut out the words of my first consultant who diagnosed me and his prognosis was 5yrs ,( I didn’t ask for a prognosis at that time , he just matter of factly delivered it ) I am in year 5 at the moment and have a rare form of this illness, but I am ignoring it and dealing with this next stage . Thanks again everyone enjoy the sunshine if you have it!! Xx🌷🌷🌷

I think St Christopher’s is the most amazing place. I’m sure all hospices are good but they are outstanding. All the staff are so friendly, very knowledgeable and really caring. It is such an uplifting atmosphere as soon as you go through the doors. I lost both my dad and brother there so it would have been easy to have bad associations with it but it is entirely the opposite. I cannot speak highly enough about them and know you will gain so much from attending. Look forward to hearing how you get on.

Thanks ! Good to hear that . I think today I have realised I do need help as very short of breath now , I do a daily half hour walk but I really have to push myself . I also have a busy family life but realise I have to put myself top of the list , easier said than done !!Thanks again for your reassurance, feel better placed now to update the family. Hope you are ok . X 🌷🌷🌷

Sorry to hear of your situation Beachballs, I am sure you will find though the outpatient set up at the hospice will be able to help you no end. Just think of it as added help for you at the time you most need it. Helpful friends which is what you will find. I am sure you will love it, they do all sorts of things at the hospice to help patients and some people are attached to the hospice for many years.

I do hope all goes well for your husbands pending hip replacement op.

Do stay in touch from time to time to let us know how you are getting along.

Very best wishes to you.


Thank you Bk for your helpful reply , getting things into prospective now.The lovely replies have taken the fear out of this now and I am feeling much more positive now. Thanks again to all. XX 🌷🌷🌷

OMG what a dreadful shock. Your respiratory nurse could have been more tactful. I know I was shocked when I met a nice man I used to volunteer with, who told me he was on his way to a session at the local hospice. He seemed quite upbeat about it and certainly not on his last legs. I hope this means that hospices run meetings for people in fragile health for socialising and advice- rather like Breathe Easy groups. Anyway best wishes to you and your husband- I hope all turns out for the best and that you get lots of support while your husband has his op and is recovering from

I should have read the other's comments before I posted. Most reassuring to find out that hospices do indeed help the fragile, not just the dying. So both you and my friend have plenty of miles left on the clock. Hope you can now enjoy this nice sunny weekend.

Thank you for your kind words , yes I am coming round to the idea now I am over the shock of it, and looking at it as a positive .thanks again and enjoy the sunshine!! X🌷🌷🌷

Oh, I am sorry this has given you such a shock, Especially since you were told you were only sever.I am also Sever but my monitor records 92 sometimes dropping to 88 but rises to 92 - 94 then settles around 90.

My last appointment with consultant after breath test she said it was worse, I panicked and she quickly responded saying "It`s only slightly worse".

I learned something from this... on the saying of " your as young as you feel" WELL I took up saying, I`m only as ill as I let myself believe I`m ill and I stopped putting so much believing what the consultant says.

Tomorrows another day, made all the better by sill breathing.

May ALL you and your husbands tomorrows be a good day...


Beachballs profile image
Beachballs in reply to tomc

Yes , the letter on screen said advanced stages , and when the nurse mentioned the hospice, I was totally unprepared. I have now got my head round it thanks to everyone on this forum and it has taken the fear out of this now. Thanks for replying and enjoy the sunshine! X🌷🌷🌷

Hospices do usually have direct access to excellent health teams. Hope this proves to be a bonus for you. Take care Cx

Thank you Christo , I am beginning to see that now and am looking at this in a positive way now. Thanks for replying. X 🌷🌷

The hospice contact dosent mean you are about to die. But they can help and support you the more professional people you have helping you the easier things get

Beachballs profile image
Beachballs in reply to corriena

Thank you Corriena for that reassurance, the support of the members on this forum has taken the fear out of this for me , and like you said it does give me access to specialist help. Thanks again for responding ! X🌷🌷🌷

Sorry Beachballs that you had this news given without good tact from the nurse. It must have felt really shocking for you. Everyone has given such supportive and informative advice. I hope it offers you some good support and hope! 🤗 Dee

Beachballs profile image
Beachballs in reply to madonbrew

Thanks Dee , feeling much calmer today and am now in a position to update my family without scaring them, thanks to the helpful information from the kind members on here. Hope you are ok . Take care. X🌷🌷🌷

So sorry you have had this shock. The reply from Jackietickle below seems to put it into perspective so I hope that has helped you.

I know a shock and deep down sick feeling from when Drs keep asking about DNRs over the past years on my mum, so what you must have felt must be unimaginable. Sometimes I feel that medical professionals are so used to saying these things (e.g. hospice) that they forget we don't know what that can mean so we fear the worst.

Thinking of you

Beachballs profile image
Beachballs in reply to Response

Thank you for your response, feeling much calmer today . I was just totally unprepared, I knew I had a serious illness, but really did not feel that bad , but looking at the situation in a positive way today. I can also understand about the DNR that you mentioned with your Mum , I had the same with my Dad , it was just a battle, big stuff. Thanks again and take care! X 🌷🌷🌷

Sending you a BIG WARM HUG . Thinking of you 🥰

Thanks ! Very much appreciated! Take care . X🌷🌷

Hi Beachballs. My Husband was referred to the hospice in the latter stages of IPF. They actually had him in once a week. It was just a social gathering with others In a similar situation. Maybe that’s what they want you to do.

Beachballs profile image
Beachballs in reply to Mavary

Hi Mavary

That’s good to know , although I did not realise that I was in the latter stages until Thursday of this week!

I think with Covid , I have slipped under the radar and they can’t really diagnose very much over the telephone. Thanks for responding really appreciate this. Take care x🌷🌷

Mavary profile image
Mavary in reply to Beachballs

I hope your mind is at rest now. I think it’s probably a twelve week session but we had a hospice nurse calling in once a week. She was very helpful for all my Husbands needs. I could call them any time to get advice too. I believe they have their own Drs that can give advice too. Please don’t feel this is the end. You could go on for years yet. X

Beachballs profile image
Beachballs in reply to Mavary

Thank you for that , it’s enormously helpful, was able to tell my family today with a bit more knowledge from you all on this forum , just did not want them to have the shock that I got ! It’s good to know that my husband will be supported as well . Thanks again for this re/ assurance. Take care. 🌷🌷

It must have been a shock for you, but sounds as though the hospice, as well as the consultant at the hospice, will prove beneficial for you. Also, good luck for your husband's operation.

Beachballs profile image
Beachballs in reply to Dedalus

Thank you! Feel much stronger today , thanks to the lovely, kind responses on here. Take care ! x 🌷🌷

Its that sats thing again! I have no idea what your numbers were but a lot of professionals get really wound up by anything below 92! Mine often fall into the 80s and even slightly lower. It takes a few minutes of slow steady breathing and they get back to 90 plus. Sometimes I use the blue puffer and that helps too.

The issue is that shortage of oxygen at the peripherals ( fingers/ toes) can indicate a shortage in the brain and this can have serious side effects. But people like us - COPDS etc - can have low levels and vascular disease can make it worse.

My gas levels have been checked three times in two years and they are fine so I tend not to worry if I get a low reading - BUT I always get it back up again by breathing techniques.

You need to take it at least twice each time; I just checked mine and got a 69! But immediately after it was 97! So I took a third -m 96. I shall live.

Beachballs profile image
Beachballs in reply to Timberman

Thanks for that ! Yes I do it twice , but the readings have been low lately in the 70s and the highest is 90 and it takes ages to get there.Am short of breath and have to push myself to do my walk. The Nurse is coming to see me , so we will see where we go from there. Hope your Sats remain in the middle 90s . Good luck and thanks again for responding. Appreciate that!

I'm pleased to hear you are feeling much more positive with all the great replies you have had. Just wanted to wish you all the best, for both you and your husband xxx

Beachballs profile image
Beachballs in reply to HollyBoyd

Thanks holly , really appreciate your kind wishes. Hope things are ok for you . Take care . X 🌷🌷

it sounds abot like pulmonary rehab course

So sorry for you, it must have been a terrible shock. Take care and try and stay positive.

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