well folks, my long awaited CT scan is 1st thing tomorrow :D ........ thanks to

......thanks to everyone who's encouraged me in the past to ditch the rude, dismissive, unhelpful consultant & be pro-active in helping myself.

I had an appointment with him on 8thJuly so I went in to his chest clinic the previous week to ask nicely to see someone else instead.

After a slight verbal curfuffle it was changed to my seeing one of his registrars (a madam jobsworth insisted I couldn't see another consultant, only a registrar. I wonder if that's true).

Mrs Nice came out: "dont you worry my love, that's no problem, we'll change it for you" & assists nice young chap manning their computer to change it. Anyway a great relief to know I wouldn't have to see him again and a non stressful few days until my appt.

Went in nice & early on 8th, at reception stated my name to jobsworth, appt at 11.10 & that I was to see an unnamed registrar. "Oh no" said she, "your appt is with Prof ..... at 11.20.

"No, no" I say nicely, but quaking inside. It's 11.10 with a registrar. Nice young man looks worried.

"No it isn't, you're seeing Prof ......."

"Er, No, I popped in last week to change it. I dont want to see him so a very nice lady & this young man kindly changed it for me" (now a little weak with terror at the possibility of seeing Prof or standing my ground or having a punch up).

"No you didn't", my jaw drops & I'm speechless for a moment. Young man cant remember & they find nothing on computer.

As I'm repeating - nicely, while deep breathing to avoid coronary & white with rage - my special trip in last week when Mrs Nice comes out, "oh hello love, I remember, we changed it for you didn't we young man". And all was calm again. Back to my seat to relax - for an hour........

Big smile on my face when I hear my name called, turn to the speaker and it's bl..dy HIM!

"Come through" he says as he turns away "No, I think there's been a mistake, I'm seeing someone else today" I say to his back.

"No, you're seeing me". "No, I'm seeing a registrar". No, you're seeing me, we're sharing". "I dont think so thank you" say I to his back. "I'll re-appoint & come another day".

Finally the penny drops & he gives me some eye contact and says "oh, do you want to see someone else". Phew, at last. Panic over.

An hour later a lovely young woman comes out. A very warm greeting, says "I'm Caroline, I've read through your notes, this is your 3rd visit and I cannot understand why you haven't had a CT scan. Lets start at the beginning". So we did.

I'll stop waffling now. (I'm avoiding doing some cleaning or some planting in the garden.

CT scan tomoz and hopefully a diagnosis down the line, followed by the right treatment to manage whatever condition I have. Just in time for the winter, cant wait.

I couldn't have stood my ground without the knowledge I've picked up here over the last few months so thank you again.

I hope you're all feeling alright and have some respite from the heat. peeg xx

34 Replies

Love, (((hugs))) and loads of good thoughts for tomorrow. xx

Just read your ordeal, and so proud of you... its so hard to stand up for yourself. WELL DONE!

Sending hugs for tomorrow

it doesn't pay to be a woose!

Good luck tomoz Richard.

Well done for sticking to your guns and I hope tomorrow goes well.

Lynne xx

Well done for standing up for yourself, a good example for us all to follow.Good luck tomorow hope all goes well.

I do waffle I know .....sorry :D....... forgot to mention PR! If you hadn't all said how marvellous it was I wouldn't have known about it.

I'm in the 4th week, It's helped me feel so much stronger, more well, more confidence, more happy.

thank you & bless you all :D xxxx now, anyone know how to get rid of tennis elbow (not from playing tennis I hasten to add)!

injections are the best, I had to have 5 in the end to get rid of it, that was years ago its never returned.

Good luck for tomorrow, don't forget to let us know how you get on.

Take care


thanks slade. it was doing so well from resting it.

Shouldn't have painted the ceiling - with my new found energy, bit too enthusiastic then last night I backhanded a ball to a child. Big mistake. All I can do isdollop on ibroprufen gel & take paracetamol. So fed up of going to docs, feel as though I've moved in, got my favourite seat (in the corner where I can face the wall to avoid the bugs ;) )

I feel a bit of a fraud, my FEV1 is 61% and I have not had an infection since October 2010. I go to a supermarket at least 3 times a week, also the gym 3 times a week, I normally only get 2 colds in the winter..... so when I read others posts about how many infections they get I feel like a fraud. Was diagnosed 5 years ago, so its not like its new...........strange how we are all so different.

Take care


Get of this site right now you, you, you ......well person! George xx :-D

Sorry George. xx

I feel like a fraud sometimes too Peta, unless I'm suffering but we really shouldn't you know.

Yep, we're all different - wouldn't these posts be boring if we were all the same :)

just as well we have KOTC and Berwick to lighten things. lol

It doesn't matter what stage we're at, it affects us all in different ways. In fact I think the people in the earlier stages can be far more worried about what might be to come down the line, whereas us further advanced ones have got over that to some extent. We all belong here! George

yep George (popular name), It's when it suddenly dawns on you that whatever it is that keeps coming back isn't actually going to go away and that it's up to you to get something done. It feels like the end of the world.

It hits you a bit when you see a really young person suffering.

Luckily you're all here to help out. xx

good for u peeg get in there ,let us no and all the best

What a brave lady,good on you!'You should be proud of yourself.

Good luck tommorow!wil be thinking of you

Love Wendells. Xxx

Well done - shouldn't be necessary, should it !

Wow peeg! Well done to you! It must have been stressful but you did it, you stood up for yourself and stuck to your guns. I, for one and very proud of you for doing that. Hope all goes well tomorrow. Patting you on the back right now (metaphorically of course). Take care. xxxxxx

Well done you, :) good luck for tomorrow,hope it all goes well for you :) xx

All the best for tomorrow Peeg. Libby x

Hi Peeg,

Not speaking up for ourselves seems to be a terrible British trait, which I'm glad you managed to overcome ... Bet you felt really empowered.

Anyway, just wanted to say hope all goes well tomorrow and that you're results are good.


Hi there once again young Peeg. Are you still being awkward? Good for you and well done. I hope things go well for you tomorrow and calm down dear, it's only a scan.

Love from Bobby xxxx

i know it's only a scan Bobby but it's been a long time coming. Cons has refused and refused saying my lungs are perfectly normal. Well perhaps they are, only one way to find out though.

Like I've said, my issues are nothing compared to some but I cant (wont) endure another winter like the previous 3 without knowing what's going on. xxxx

Wow peeg, I am well impressed! Can i share your oomph for appointmentsat hospital on 8 August to hopefully get final answer to what the diagnosis actually is, 5th September to see gastro consultant about huge hiatus hernia and nasty reflux and 24th September for gynie to comment on large (but benign) ovarian cyst. At last a few fingers have been pulled out. I am pretty sure I am going to be in for a fight to get effective treatment so i just hope I can emulate your performance! Well done you. :-) :-) :-) Alison

I think good energy from doing PR helped. Well done you too Alison. I saw your last post about getting some action at last.

I hope all the departments are joined up at your hospital!

Look forward to hearing your 1st news from the 8th xxxx

Thank you. Good luck for CT scan. They are OK. Have to hang on to pee for long time though. They might inject with dye to enhance picture. This is OK too but you might feel as though you have wet yourself - you haven't. The room was quite cold - this too will be fine this weather. Just remembered, if chest only is beingCT'd they won't need to make you drink drink loads and hang on to it. You will be fine. My hospital does not appear to do joined up at all but I have very quietly tried to apply pressure. If gastro chap is indifferent I intend asking to be referred to Royal Devon and Exeter as there is a chap who has a new procedure which is keyhole and daycase. Simples. Lung chap will not be surprised when i ask to be sent to the Royal Brompton. If gynie aren't interested I'll just have to put up with the pain and not be able to tell if it is pressure from the cyst or UC grumbling away. Hey ho. I'll be thinking of you tomorrow. Good luck :-) Alison

Well done Peeg for standing up for yourself

Bev x

I really do understand how you feel. Until 30 years ago I used to go to the surgery/hospital etc. and listen to what they said, took my prescription or hospital letter and walk out, just took what I was told as face value as they were the GODS of all they surveyed and who dare question them. No computer to check anything.

Then, I got a job with the NHS, not as a GP receptionist but working alongside doctors, nurses, midwives, social workers etc. etc. and got to know the system inside out and upside down, I worked there for 20 years and the doctors and everyone else became my friends, we went out on nights together, had Christmas parties etc. They were no longer GODS but normal people.

I am now the carer for my husband who has severe COPD/Bronchiectasis who was never away from the hospital having one chest infection after another. I read up about things and know as much as I should about my husbands condition regarding his medication and nebulising equipment.

Because of the side effects that a salbutamol/ventoloin nebule in his nebuliser does to him when he takes them regularly (shakes etc) he was taken off them and just given saline nebules, nothing else. But when he has a chest infection and the paramedics come to the house to take him into hospital they give him a one off salbutamol/ventolin nebule and he recovers quickly, they still take him into hospital but by the time he gets there he is back on track and is back home in a couple of days unless it is the week-end.

I TOLD the specialist on our last visit two weeks ago that I wanted a pack of emergency salbutamol/nebules to use in his nebuliser so when he gets a bad breathing do I can pop one in the nebuliser and it just may stop me having to call an ambulance just to use as a one off until he is back in control of his breathing then give him his emergency standby of anttibiotics as he only has these dos when he has a chest infection. The specialist said 'what a great idea' and put them on my husbands repeat prescription. He also said that because I knew what I was doing and because of the medication we have at home, the only thing now that my husband would get in hospital and not at home was a hospital infection, X-ray and an IV antibiotic drip.

The respiritory service have also given me an oxygen machine I can alter myself and use within the guidelines he has been given, it saves him carrying oxygen cylinders around the house when it needs the oxygen levels raising, if he struggles with any of these figures I know an infection may be on the way so keep my eyes open, usually it is just the climate be it cold or too warm.

I make a list when I go see the specialist, he was talking about stopping his medication for the summer months so I told him no, the medication is doing for him and I do not want it stopping and he agreed and said it was just a thought. My husband told him that the steroids he was given in hospital and at home made him ill but the specialist poo -pooed it so I told him that because they are not enteric coated they do make him ill, so can he give me a letter to take to the GP's and have them changed to enteric coated, the specialist then said, well, the reason we give un-coated steroids in hospitals is because they are cheaper but they do cause acid-reflux and can stir things up in the chest. So now we get enteric coated steroids when we need them, he also told him to tell the doctors if he ever went back in hospital to refuse un-coated steroids. He also wrote it in his notes.

So the moral of the story (which is a bit long) is to really understand what medication suits you, know your illness inside out and really understand what you are talking about so you can argue your case, and don't let the specialists talk down to you.

My husband, as you all may know, is a man who will do nothing for himself and treats me like his own personal slave so I have now made it my job in life to know what is best for him to make my life easier, I am nearly 71 years of age and when he does get ill and I have to call for an ambulance it is me that is run ragged with hospital visits etc. so I owe it to myself to keep him at home for as long as possible, albeit in bed, so now I have been given all the medication I need to do this so things will be easier for me. If they kept him in for a couple of weeks I would get a rest, but no, they send him home within a few days which really makes it hard for me.

yes I recall how often you've been throught the mill with him (think I told you once that I'd have greased the stairs by now)! You are too good to him.

Knowledge is a powerful thing and you are using your hard gained knowledge wisely in keeping your husband at home. Hang on in there and I'm sure you'll be rewarded one day with some good years for yourself. xxxxxxxx peeg

(ps my next appt 2nd Sept for diagnosis at hosp or might get it from GP on 12 Aug) x

Thinking of you today peeg, sending loads of good feeling vibes to surround you this day and always.

BC x

Hoping all went well peeg. xx

Thanks very much BC & Toci and everyone :D ** Have a brilliant weekend

Was a doddle really and out by 9.30 so no excuse to got to PR session for 10-12. Was a bit knackered though. Now await appt on2nd Sept for dx xxxxx

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