Sometimes things get said at hospital appointments and you forget to ask questions. I am usually pretty good at asking questions but I suppose it was a combination of a new doctor and the information he was giving me.
I was seeing this bug specialist and I must admit I came away a bit shellshocked. I also made the mistake of not asking hubby to come in with me. I love him dearly but he has this habit of making jokes when he comes in with me which is fine when it is a doctor that knows me but I just worry he would get the wrong impression. This Prof was a lovely guy but I don’t think he is keen to treat my bug. He said that the treatment would only have a 20% chance of working as my lungs are so duff and that I would have to start with 3 weeks in hospital with intravenous antibiotics which would make me physically sick. Then probably oral treatment for the rest of my life. They can help with that but I have so many other things wrong with me, asthma, diabetes, that if I was sick it could then make these conditions worse. He will see me in November and do another scan to see how much damage there is and have a rethink as he will be able to see how aggressive the bug is. I didn’t ask what would happen if I didn’t get treatment as I suppose I know in the back of my mind. He said I didn’t need to go up to the physio department as I obviously do my lung clearance so that saved some time as I had to go and have bloods done. I do my lung clearance religiously even though I find it tiring as it just makes my day easier and less embarrassing when out and about – less likely to have a coughing fit. I have been taught well by the team at Brompton and I know they are always there if I need help.
Luckily I am seeing my wheezy man on the 19th so I can ask him some questions. I have known him for years and he is always completely honest with me but he also knows I am a stubborn person who is always willing to give anything a go so hopefully, he will fight my corner. I have another busy week next week with appointments. Monday diabetic check, Wednesday Brompton for lung function then Thursday breast screening. I really am being looked after by the NHS at the moment.
On Wednesday a friend took me out to show me the new shopping centre we have in Bracknell. Bracknell is one of those towns that is pedestrianised and has loads of roundabouts on the outskirts. I never knew where was the best place to park so I didn’t have miles to walk so she kindly offered to show me. Well it was great. She showed the best place so I was right by Marks and Spencers and once you walked through the shop you were in the centre. They have this massive animatronic T-Rex until the end of August (little things!). We had a coffee and she pointed out where all my favourite shops were, L’Occitane, Fenwicks and the like then we spent a bit of money in Marks and I was done. Lovely trip out though. Thank you.
It was our wedding anniversary yesterday so we thought we would spend the day just chilling and enjoying ourselves. We had a lovely drive out and found a country pub for lunch. Really lovely. We both had 3 courses which is a real rarity for me but what the heck. Then when we got home late afternoon we watched a film. I did all my treatments early as we had the fizz on ice and we had bought some fancy cheeses, cured meats, olives, dips, laid them all out on the coffee table watched Love Actually and drank and picked at the food all evening. Very indulgent. Great day. Life is too short.
Back down to earth now. Putting all my efforts into Aspergillosis Trust now and trying to get organised for World Aspergillosis Day 2020. I want to organise a raffle to raise money so if there is anyone out there that can donate a prize please contact me at firstname.lastname@example.org Also need to do some fundraising so please help, we have a lovely selection of items that help spread awareness and some are very useful, cotton shoppers, keyrings, post it notes and notepads. Go to https://aspergillosistrust.org/awareness-goods/ and have a look.
On a cheery note, my garden has been doing well and we did win a prize so I am well chuffed. Hubby works hard on the garden. He knows I love bee watching and sitting out and getting my vitamin D. I frequently take a book out but end up just watching the bees.
Take care. x