I have just spent the whole day since 8am this morning in the clinical decision unit in hospital. I was admitted by my oncologist because my CT scan showed that I have a pleural effusion in my right lung. I have also has problems breathing and a cough when I bend over.
I was meant to be admitted to the oncology ward yesterday but they didn’t have any beds so after waiting all day for a phone call I had to call the hospital and was told to atttend the CDU today so they could put in a chest drain.
I arrived this morning and had to go through everything as if they didn’t know what was wrong withme. Including putting in a canular which they were unable to do.
(this is the same hospital that treats me for cancer)
1pm they decide to send me for a Xray.
3.45 was told that the pleural effusion has shrunk since the ct scan so don’t need to have lung drained and I can go home. And the Dr said next time could I make sure that I am admitted through oncology!!!
I am still breathless and coughing nothing else showed up bloods wer normal was told to seen oncologist in 3 weeks.
So now what do I do?
I’m fed up because I can’t do anything at home because of my breathlessness and nobody seems to know how to sort me out
Sorry to go on but I just needed to get this off my chest
Caroline
Sorry I just realised that sounded really funny about gettting it off my chest
If you are still breathless, go back to the oncologist and tell him/her that you are not happy about this situation and would like to be re-admitted to have the problem dealt with.
Have you have previous lung drains?
Hi Caroline
What a mess! I think I would have felt like punching the dr who told you to make sure you were admitted through oncology next time. That sounded like the last straw after YOU have been led a (far from) merry dance by the hospital.
I feel it might be really hard for you to accept now that you don’t need the lung drained given you are still breathless and there’s been no change in that. But also think you need to find someone who might fight your corner for you - could be exhausting otherwise. Have you got a BC Nurse? or is your GP fairly proactive? Failing that, I’d say ring the onc and say you are far from happy because you have been totally messed about at the hospital, not had a drain put in and are as breathless as ever.
Hope you manage to get something sorted soon.
Lots of hugs coming your way
Kay xx
Hi Caroline,
Sorry you had such a bad day, something needs to be done as you are obviously in distress despite what the hospital says. Could you get a Macmillan nurse to come and advise?
Jenny
x
Caroline
I think you should contact your onc - by phone, fax or failing that a message via his secretary …
He has said you needed to be admitted and so he needs to know you’ve been sent home …
You may feel daft about contacting him … but you’re going to feel more daft if he asks you why you didn’t next time you see him!
Good luck
love FB xxx
PS Some days are just S**T aren’t they - sorry you had one today!
After being on Taxotere for 6 sessions, I was really breathless and coudn’t do anything, even getting dressed was a major exhaustion. My oncologist team said I could have my lungs drained, as it was obvious there was a fluid build up, due to Taxotere, but said it was my choice as it wasn’t that bad!! and would pobably resolve in time, when the taxotere was finished. They had put me on diuretic tablets (they didn’t work). At first i was against having this done, as I didn’t want to go into hospital, but my husband persuaded me that it might be a good thing. Anyway I went ahead and had it done, and the result was instantaneous!. They drained 4 pints of riquid off my lungs and I could breathe and walk upstairs without any trouble straight after the procedure was done. So I would dfinitely advise pressing them to drain your lungs.
Thanks for the comments everyone.
I have contacted my breast care nurse and she has arranged an appointment with the onc on the 10th June to discuss what to do next.
I had a pleural effusion last year in my left lung which was drained and sealed and I havn’t had any further problems with it. This is how I know what a difference it makes.
I am definately going to make sure that they have a good reason why it it wasn’t done
Caroline
Hi Caroline
I am just back from holiday and saw your post - what a pain! Have they checked your tumour markers as presumably there was a reason why the pleural effusion started in the first place. I am frustrated as although mine was drained and I had the pleurodsis my left lung has not re expanded and is “trapped” under a layer of what my oncologist describes as scar tissue. I am still breathless and can’t run or swim more than a couple of lengths before gasping for breath. I am irritated that no one seems to have any answer about what to do and it seems that I am just expected to live with it. I am debating about whether to ask to be referred again to the Thorassic surgeon who carried out the procedure or see if the Xeloda has any effect. I do sympathise, let us know how you get on next week
Best Wishes Kathryn
Hi Coroline
I’m glad you have an appointment with your onc to sort things. I totally understand how awful it can be to be in a dep/ward not specialising in oncology (stuck in a horrible tiny stinky side ward one day on trolley while my local A&E decided what to do with me, only went in to get bloods done !)
Eventuall after 8 hours was sent Clatterbridge Oncology were I felt safe and so looked after.
Hope you get things sorted and get treated how you deserve to be.
Also can’t beleive the docs comment about you making sure your admitted through oncology next time - really insensitive.
Take Care
Liz x
UPDATE
thanks for all of your comments.
I have seen the onc today ( a different one) and she has told me that the reason that they didn’t drain the fluid off whilst I was in hospital last week was because the level has dropped slightly but it is now at a level where if they has inserted a needle blindly then the would be indanger of sticking it in to my liver.
So now what they want to do is an ultrasound guided needle because the want to take some of the fluid away and test it to see if it has cancer cells in it. This is because they don’t know what exactly is causing it because the treatment I am on has stabilised all of my other mets but I still keep having this fluid build up.
Now I have to wait for up to another 2 weeks for my appointment and see the onc again in 4 weeks. But I have to go in if my breathing gets a lot worse.
They also told me to take it easy!!! Fat chance of that with 3 children and a business to run. And anyway I can’ stand sitting around.
So I am waiting again
CAroline
HI Caroline
Glad that you managed to get some answers today - shame they couldn’t have explained that to you when you were in hospital. Still feel you were very poorly treated in lots of different ways then.
Sorry you have to wait though for another 2 weeks. And if you can’t take it easy, at least do some things you like doing (at a slower pace if need be!). I too hate sitting around - find it is guaranteed to depress me.
Have a good weekend
Kay xx
AT LAST
I ahve just come home from hospital have been in since Tuesday.
I have had my lung drained and stuck together again (pleuradesis) They managed to drain 2 litres at this time. So I don’t know what they were talking about when they said there wasn’t much fluid in it.
Very sore but hopefully this will get better soon.
When I got home I had a letter waiting for me saying I had an appointment to go in on the 24th for a lung drain with ultra-sound. Duuh I don’t think the left hand knows what the right hand is doing.
So hopefully my breathing should be OK for a bit now
Caroline
Caroline - you must be please to have had that done. It must be a relief physically and mentally.
Can I ask what symptons you had before the drain was done? Was it just breathlessnes or did you have any other pains?
Geraldine
Wonderful that you are home again and that your breathing should be easier for your. How very frustrated you must feel though that it took a while for the drainage to be done. Anyway, at least you got there in the end and I hope that the soreness won’t last too long and you can enjoy feeling more comfortable altogether. I would say don’t rush around too much, but with your children and your business you must be very busy. Hope you have some help and good support. Sarah x
Hi
Just wanted to say I’m glad your home.
Take care Lizx
Thanks for the comments girls
Gerry I only really had breathlessness especially when I was carrying something or walking. Sometimes it felt as if someone was sitting on my chest.
But I knew what it was this time before it got as bad as last time because then I had 4 litres of fluid drained out plus nearlt two from around my heart.
I’m certainly glad to have it done so I can get on with things now
Caroline
Awwwww Caro (((((HUGE HUGS)))))
At least you have had it done - and can breathe a huge sigh of relief !
Take it easy and I’ll catch up soon
Big Hugs
Anne xx
Hi Caroline
Just wanted to say that I’m glad to hear you are back home and are feeling less breathless. 2 litres sounds a lot to me - so don’t understand why they couldn’t do it first time round! Anyway it is done and hopefully everything will feel a lot better now.
Lots of love
Kay xx
Caroline - sorry you’ve been through so much. Glad it’s sprted for now.
Know what you mean about left hand not knowin what the right is doig. Got sent home from hospital on 3rd june so i xcould attend appt with rads cons on 4th so went and saw her. Next day had letter saying my appotinememnt on 4th had been cancelled and was rescheduled for the 24th june!! Been in hospital since the 10th of june and started a weks rads on 13th june and now had letter from rads saying my rads is booked for 8th july. Now in hospice to recover from rads to my oesophagus so wonder where next appointment will be sent. It’s a nightmare isn’t it!!
Love to you all
Kate
Hi Caroline
Glad you are home and on the mend now. Hope u are having a fairly good weekend and not in any pain really. We missed you in chat on Tuesday night!
Anyway, take care and catch up soon.
Love
Dawn
xx