Coughing and monopoly

Yesterday we held our annual raffle at my work in aid of the CF Trust. Some friends and I started this in 2006 (I have been there a looong time, and when you read more about my amazing colleagues, you will understand why). In those days, we used to receive gifts galore from suppliers; chocolates, booze, hampers of goodies, even a PS4 one year. We agreed that rather than try and divvy these up between us, we would make it both fairer for all, and fundraise at the same time, by holding a raffle. I can’t remember how much we used to make in those early days, but I guess it was around £200-300; which seemed incredible! Then we added cakes; each year, the same dear colleagues would bake, and we’d sell them on the day. Over the years, due to much stricter compliance rules, we have less and less from suppliers, and yet the raffle gets bigger and BIGGER. 

Not only do my colleagues donate prizes to the raffle, they bake to sell cakes, and buy tickets to win prizes back - all for CF, and yesterday we made over £1,000! 

Every year, I try and pluck up the courage to say thank you in person at the raffle, but I know I cannot do this without tears. it means too much and I know I wouldn’t be able to articulate my gratitude sufficiently. I will try and make up for that now; a huge thank you to Heather, Charlotte, Beth and Debbie for selling and sorting tickets, and to Richard and Paul for being my voice (and to the many others over who have been raffle compere over the years), to Gem, Sophie, my Mum and many others for baking, and to everyone who buys tickets or cakes. What I would really want to say if I could do so without crying is that CF sucks, truly, there is no getting round that, but thanks to all of you, we have more HOPE, and for that, I thank you all from the bottom of my heart. 

Today Isaac went to hospital for tests, as his chest is getting progressively worse each day. He is coughing so much he is sick at least once a day now. We are only two or three weeks post his last IV antibiotics, and having to start a course now would mean a certain home IV Christmas (or worse, being in hospital) - but we feel like we may have been given a get-out-of-jail-free-card; he’s had bloods and results on Monday will show if his markers for aspergillosis are up (previously referred to here as the f**king fungus) in which case, oral anti-fungals may help. Also, he responded well to salbutamol on his second lung function test, which suggests he is wheezy; which suggests this might be more down to inflammation than increased infection; which suggests he might respond to oral steroids. Again, less intensive treatment than IVs for our family Christmas at home. 

Don’t get me wrong, having the aspergillus back and/or further inflammation (which causes the scarring in his lungs) is not something we’d wish for, but we also wish for him to have a lighter treatment load and less trips to hospital over the holidays. He deserves that. We need him well, and quick. 

.... And then we need a well funded and resourced NHS; access to European research trials; and quick access to new drugs that come out of those trials (not the three years it took for NHS England to agree to fund Orkambi). We need Trikafta (the next of these drugs) NOW and then we need a new generation of these drugs in the future which will also work for Isaac and the other 10% of CF sufferers that these drugs will not yet work for. I will never stop until Isaac has that chance, but today was a sad day in that the election results, I think, hinders rather than helps our chances of this happening any time soon. 

Have a great day x