‘Waterloo’

Another week has passed and I am so pleased with myself.

As you are all probably well aware I have been struggling with my numerous infections recently.  I was asked to attend a meeting at NHS England by my mouldy man.  I really wanted to go but the idea of getting up to London to an area that is very busy had me worried.  I usually drive in London, it doesn’t worry me at all, but the area the meeting was consists of a lot of one-way streets and I wasn’t sure how easy it would be to park.  I am so short of breath at the moment I didn’t want to have to walk too far.  Thankfully Waterloo mainline train station is not that far from NHS England Headquarters.  I live not far from Windsor and trains from Windsor Riverside Station go into Waterloo.

Hubby said he would come as he knew I would struggle with train doors and getting around the station.  I am so glad he did.  I think I would have collapsed halfway along the platform.   Once outside the station, we hailed a taxi.  London cabbies are great, he literally dropped me right outside the door and told us when we had finished if we just went around the corner we would get a taxi quicker as it was two-way traffic.  Signed in and thankfully had time to sit to get my puff.  Hubby went off to look around the Imperial War Museum as he hadn’t been there for years and it was just down the road.

Meeting went off okay and was very interesting.  I was well looked after by all the staff there.  Found me a lift and took me upstairs and made sure I had drinks and I was okay.  After the meeting, my mouldy man walked with me to find Martin as he knows I have been feeling rough.  He was quite shocked at how short of breath I am walking anywhere and told me he would phone me on Wednesday when he was at clinic so he could call up all my tests.

Trip home was so busy.  Hubby just said get on the first carriage that has seats as it would get full.  It was just after 5 pm and the number of commuters was quite mind-blowing.  Hubby used to work in London in the city which is over the east of London and we are in the west.  I don’t know how he did it for 40 years.  One day was enough for me.  Got to Windsor station and I was getting off the train and the door started to shut trapped my arm.  I thought it would release once it sensed something was in the way but no hubby had to press the button to open the door again. I now have a lovely bright purple bruise on my upper arm!

My mouldy man rang at 11 am on Wednesday and said my lung function test had gone down by 10% which isn’t good as one of my readings (FEV) is already 0.9.  He also commented on the fact that my last sputum grew two bugs and moulds.  I explained that I am just full all the time and getting really tired and I have a dull ache on my right side continuously.  He has ordered an urgent CT scan for next Tuesday and I have to take all my gunk (nebuliser) 3 times a day instead of twice.  I will be going through books like nobodies business.  He told me to email him after I have had the scan and as he is in New York next week he will try and view it remotely.

cropped-royalbrompton2710b.jpgThe NHS is truly an amazing thing and the support I get from the Royal Brompton especially the support from my mouldy man is second to none.

I just thought I would write this before I have my next dose of jollop!

I have now finished another card order and still have one to go but if anyone wants any Christmas cards please let me know at jill@aspergillosistrust.org.  They are £1.20 each or 6 for £6.  Have a look at the website http://www.aspergillosistrust.org you can see everything we get up to, read patient stories and order lots of lovely awareness items which would make lovely stocking fillers for Christmas and we have the beautiful new 2020 Calender.

Take care everyone and be happy! x

10 thoughts on “‘Waterloo’

  1. You did amazingly well to get through all that and speak so well at the meeting Jill, you had a real impact.
    I measured the air pollution on the trip to Skipton House and down in the tube (Northern Line) the particulates were very very high, something like 30x what I have found are ‘normal’ levels and of course the London traffic gave us high NO2 (10x normal) once we emerged from the tube – I don’t recommend anyone with respiratory disease use that line! In the meeting room all was well.

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    1. Thanks Graham. I feel some were not so impressed. Just hope the patients get more centres that specialise. The need is there. The Northern Line is one of the oldest tube lines I think. All round that area it is very busy one of the reasons I didn’t drive, probably would have taken hours to get home. I definitely did my Pulmonary Rehab on Monday!

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  2. The point of contention was that we were suggesting that they need to make more effort to find the 10 000 ‘missing’ CPA patients and they were concerned with the practicalities of doing that. We are going to have to fight our corner as a team.

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  3. Wow,you do go through it. You need a urgent CT scan. Fingers crossed for that not to have any more news you don’t like or want. I don’t know how you do everything when you are so busy taking all your medicines. I guess I’m lucky mine are morning and night main lot then dinner and tea the gastric ones. We take each day as it comes.A the best for good health.

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  4. Jacqueline I have been ill all my life and it is just one of those things that as you get older things get worse. I am lucky, like you, that I have a good team of doctors looking after me. Take care.

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  5. Jill,Congratulations once again on a cracking post,it just illustrates the day to day struggles that being ill can bring to anyone regardless of whether they are ill now or in the future and I wish that more medics could see how people have to deal with these illnesses.I only hope that your input at the meeting will be taken to heart by all those there and some action plan decided.
    I for one am so glad that I do not have to travel across London, I would hate to try it when unwell, so Kudos to you. Well done indeed.

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