Well another week has passed and on the whole not too bad.
Went for my check up at the Brompton Hospital and saw my mouldy man. I also met my friend who was attending the same clinic. We had a good chat and whilst our hubbies were chatting I looked through the application for the Met Office that she had worked on for us. The Aspergillosis Trust are trying to become their charity partner. If we manage that it will be a great help and they might be able to help with some funding for posters and adverts for the 2nd World Aspergillosis Day on 1st February 2019. My friend’s appointment was 10 am but my lovely mouldy man was running late, 2 hours late! My husband had been down to The Hummingbird Bakery in South Kensington for cake and the idea was inbetween our appointments we could sit in the hospital courtyard in the sun having coffee and cake but you know best laid plans and all that. In the end it was rushed, but it was a lovely cake. My appointment was 11.30 but didn’t get in to see him until after 1 pm. It can be frustrating but once in his consulting room and sitting there and speaking to him you forget all about the wait. He explains things so well so even though the news wasn’t that good for some reason I can deal with it. I had had a CT scan as I had been having bleeds. There was not obvious reason but the bronchiectasis is now in all zones of my lungs and there is extensive plugging. He thinks the bleeds are mainly due to the infections. I thanked him for that and he said ‘I tell it how it is’ which is good really. He also broke the news to me that I now have two bugs dancing away in my lungs and two strains of aspergillus, hopefully that means there is no more room for anything else! He asked how I felt and I said better than I had for a while so he was happy to not add an oral antibiotic as I inhale Colomycin and he had doubled the dose last time I saw him and I have now increased my Fungizone as well. He said I can go up to 25mg if I can cope but I was to be careful because it could bring on my asthma so I have increased it to 12.5 mg for the time being. Coping okay a bit more breathless when I finish and very croaky but it wears off so fingers crossed.So I have more stuff to add to this lot now.
I have also been busy with the fundraising side. I have 2 card orders and people have been ordering car stickers which is great. All these things raise money for the cause and spreads awareness. Nearly ran out of the stickers and the lovely lady that did them for me seems to have disappeared from the internet so hopefully we will manage to find a new supplier (looking good). We have also been receiving help from a celebrity scientist who is looking over the Met Office application for us which I am sure will help. She seems very keen to help us. My mouldy man was very interested in what we are doing with Aspergillosis Trust which is great. The more help the better I say.
This weekend is going to be busy. I hope the weather improves my nephew and his girlfriend are coming over this way and I have booked for us to have lunch at a restaurant on the river in Windsor (it is a bit quieter now the wedding is done and dusted). Then on Sunday one of my oldest friends is visiting for lunch we used to flat share many moons ago.
Today is one of those days which I hate as we are waiting for people to come to do some bits and pieces for us. British Gas to service the boiler and then another person to service my bath chair. (Very important to me) They give you times between 8 am and 6 pm. Hubby is doing something with his fishing gear which is spread out all over the floor and I am doing this then card making.
Received a bit of lovely news the other day my nephew from America is coming over with his youngest daughter in September. I haven’t seen him since he was very young when he lived here with his parents. He is a grand dad now so that makes me at great great great Aunty (I think). Gosh I am getting old.
See you all next week.
Take care everybody and stay well. xx