Lung Chatty Thread

just checked. around        £   1500 private. may need go for it  

I think your Argos camera idea sounded cheaper Darlo

Thank you everyone for your kind support re my positive news.

i am so sorry you have such a long wait for the camera Darlo - just not fair 

Hi Gina

Have to be honest, I struggle with this. Wrote a response to your stuff and pressed post many times and yet it did not post! Anyway, was just saying how much better you seem and wondering if the immunotherapy is making a difference? My biggest problem at present is breathlessness which I hate! My Next immuno is on 23rd all being well which has been a four week delay but I’m assured that makes no difference. Weather here in London more wet than I can ever remember! Guess you’re on your third infusion now. When do they scan you? Xx

Hi Nel

Are you posting from a phone? I find them harder sometimes to respond from and much prefer the laptop. It's a bit glitchy this site and sometimes we all loose a post when we click post which is extremely frustrating when you have written a lot and spent time gathering links for people etc. Best thing to do is copy and then press post. If it disappears you can then press paste to get it all back.

I do feel much better now. Not sure I can say it's the immunotherapy just yet, I am only fractionally ahead of you at the moment. I think a lot of it, is my body is finally having a bit of a rest. If you click on my name on this reply at the top of the box it will take you to my profile.... here I lay out a brief overview of all the treatment I have had since diagnosis, you will see that last year was one thing after the other.

I finished my final cycle of chemotherapy in December and now my bloods are recovering and my appetite is coming and energy is too, I am making better meals again etc so I think that is all helping.

I will post scan results towards the beginning of April once I have been scanned after my 4th immunotherapy which is next Friday, an update on my own thread. Other than that I try not to think or worry about it too much, else you waste the better days worrying about when the days may not be as good, which is not a nice place to be.

I have noted a few immunotherapy patterns to emerge. I find I am wide awake the first 4 days or so, then sleepy for the next few and it's almost like catch up time for sleep. Also sleepy days very painful nerves for teeth. I think it maybe linked as I snuck for a teeth check up, clean and X-ray in the small gap after finishing chemotherapy and before starting the immunotherapy. As said keeping an eye on my thyroxine levels too as I have been slightly symptomatic and they noted it had fallen below (just) the bottom of normal levels. 

We have had our first case of coronavirus confirmed today here in Jersey. We are a very populated small island (9 x 5 miles) of around 120,000 people plus. It is separated into 12 parishes and it is said a third of the population lives in my parish the town centre (along with most businesses, shops) so as you can imagine it will likely now spread extremely quickly... so a little worried about that, just as I was trying to sort out going back to work... 

It's chucked it down pretty much all day here too. Pyjama day along with finishing my final chores....

I will have to invent something else to do now (except cleaning, I hate cleaning) 

Hi Gina

So good to see you are starting to feel stronger, and you are thinking of returning to work. I must apologise, you asked about my sister a while ago , and I didn’t reply. She went back to work herself last week, only for a couple of hours a day. She’s now on the same hormone treatment as me, which comes with its own challenges. 

This coronavirus threat is getting scary. I am already limiting where I am  going, and I’m spending more time at home. I feel for the medical staff who have no choice but to be on the front line of this. I think the next couple of weeks will be very telling. 

hi all. Yes I’m also beginning to feel more concerned about corona. I hear so many saying it’s just a flu but those doctors in Italy who are exhausted and fighting this will tell you very differently and especially for those like ourselves who are at high risk! I’m now staying away from crowded places. Just given my ticket away to ‘Hamilton’ I was going to see in theatre in London. Was a gift from my children and we were going together but my sister will go instead of me. Just not worth the risk, disappointed as I am. I walk the dog as I do need to exercise my Lungs a bit to help breathless issues but  truthfully little more. Think we all just need to be very careful xx

I think we will see things happening in the hospitals in next couple of weeks. I think non emergency cases will need to be cancelled. 

I think you have done the right thing Nel. We need to be more cautious about where we are going. We have cancelled our cruise today, I just cannot take the risk. 

Hi Chelle, So glad your  sister is doing well, sorry to hear you have cancelled your cruise ,but think you've done the right thing cant take a chance, I went to the bank this morning long queue, tried to stay clear of a couple of people , coughing and sneezing . TC Ellen .

Hi Chelle

i think you’ve done absolutely the right thing cancelling your cruise. We have one booked for early summer as a family but PnO have just message to say we can postpone it or if we take it they will offer us a drinks package of £200. We are going to postpone probably. I’d hope by summer we’d be well on top of this but I just don’t fancy a cruise that soon 

yes I think they’ll be a lot of measures taken in hospitals. My next immunotherapy on 23rd so really hoping I can take that xx