AWAKE.........

Hi all, my birthday on Weds. I was born on D-Day as the planes were going over to France. Trust my mum to pick an auspicious day!

We are going to our favourite restaurant to celebrate. They know us well.  As soon as we arrive they bring a cup of tea and hummus on pitta bread for me. I always get too hungry to wait!

Feel very lucky to be able to anjoy this birthday. Last year I was in the midst of it all.

Hugs to everyone having appt, procedures, chemo, rads, recovering postop, and awaiting and having ops xxxxxx

Well, that was a slightly frustrating appointment! 

Nice doctor - met him before last year when he broke the news that it was likely to be secondary cancer in the lungs. 

Went through the last few scans/xrays with me - did NOT feel that there is any pneumonia despite that being diagnosed by A&E consultant (and questioned by me...) as it would be unusual to have pneumonia with normal blood results! So, have had yet another set of antibiotics when I didn't need them! 

Said that there is evidence that the fluid has increased somewhat in my left lung, but not sure why I'm SO breathless and coughy as it isn't hugely bad. 

I then said that I don't think that the weight gain from the steroids helps much, and he said why are you taking steroids? I said - because your department told me to take them to reduce the inflammation in my lungs! He said 'how long have you been taking them?' 'Since last May' 'A YEAR?'  'Yes'. Well, that much weight gain will have a significant impact, so we need to reduce them - long term steroid use is not good for you!'

Well, it would have been quite nice for them to tell me that then, wouldn't it - I've been taking them as I thought they were the things that were keeping me going. Turns out, they may be the cause of at least part of the problem! So,now on a slow programme of weaning off them - likely to take about 4-5 months! Grrr... 

He's prescribed a different inhaler to try  - not that the ones I've got have made any difference! Said that water tablets will not help, so not going to start taking those despite them being prescribed by the GP the other day!

I think part of the problem with being under several departments is that none of them want to touch the drugs that the other one has prescribed, but then the oncology department do know that I was discharged from thoracics when I was passed over to them for chemo! 

I told him that I was frustrated that I'm feeling worse as we go along, so he agreed that he will get the radiologists to do a very careful screening of all the recent x-rays and CT scans to see if they've missed something else - he understood my frustration but said that they can't really treat what they can't see! (fair I suppose, I just feel that I'm in limbo...)  He's going to ring me once they've had a good look! 

So, it's a case of reducing the steroids to see if that helps reduce the weight to see if that helps the breathlessness and hope to whoever we hope to that the sneaky cancer bastard isn't doing his thing in some unseen way between now and then as the oncologist won't do any more chemo whilst there is nothing on the CT scans to warrant a new regime. 

So, I missed my Mum's birthday last week for nothing (as I didn't go for fear of infecting her with the non-existent pneumonia) - a little upset by that given that she's not in the best of health and we may not get the chance again! 

PLOP TO IT ALL!!! 

Hope everyone else is having a less frustrating day! 

OKAY, RANT OVER - BACK TO BEING POSITIVE! 

Well done Weenlemum he sounded a nice man and at least checking everything is good. I hope the steroid reduction helps and inhaler. I'm sorry you're feeling bad you're always so positive for everyone. Give yourself a treat. You didn't miss your mum's visit for nothing it was the right thing at the time with the circumstances you knew. Hope you can see her soon take care xx

 sometimes it's just 'pants' and there's nothing we can do about it. But your mum still had a nice birthday so don't feel guilty about that. You might not of had pneumonia but you were still feeling rough, so you needed a rest too! So don't feel bad. Time to concentrate on you for a bit!

So you rant away, we are all here to listen and to offer lots of ((((((((((((((((HUGS)))))))))))))))) xxxxxx

My main concern is this:

When I come of the steroids, what can I blame for me being fat???? 

Maybe this... 

Hi Cathy   very frustrating and irritating for you, but sounds like that man is awake to everything which is good :-) Rest and recover in order xx

looks like Rhino has a touch of chemo diarrhoea can empathise with that in a smaller way ;-) 

Judith xx

Ach Judith ( )  -  glad i's not quite as bad as the rhino, but horrid all the same! 

I suffered quite the opposite - it was like passing melons!!!  

I'd love to find a suitable GIF for that, but might offend people, so I won't!!! 

Weenlmum, so sorry you are still in limbo. Glad you are coming off the steroids, but how annoying, more than annoying that you have been on them unnecessarily for a year! It is about time they got to the bottom of this! Big hugs xxx

Cathy   You're right what a load of cr##!  When onc put me on steroids last week she said for no more than 2 weeks as if they haven't worked for infection then they're not going to work at all. I got a spacer from chemist to use with inhaler as it gets to lungs better, apologies if you know this already. I've used one called symbicourt for years once a day since having pneumonia twice in a year.Until now never had any chest problems for over 5yrs. At least he's on the case now and he sounds competent.

As for your mums birthday as said it was the right thing to do at the time, hindsight is a wonderful thing but just makes us feel guilty.

The weight thing I empathise with, never lost what I put on during chemo... they cheered when you put it on! Sounds daft but when I got my diagnosis first thing I said was 'well at least I can loose some weight' ( I was a stone overweight) and they said 'don't bank on it' I had no idea what they were talking about! I lost half a stone and put 2 on!

Oh and thanks for the rhino.... I was just sitting down to have my salad!  lol

xx

My excuse..

xx