Still, we had a laughter filled weekend with some much loved friends at the coast (thank you guys). Lots of food, soaked in gin, warm sea air, exercise, blood moons and early sunshine (latter being much needed since his latest bloods show he is deficient in Vit D again; Isaac cannot absorb vitamins A, D, E and K through his diet as we can (the fat soluble ones) and despite some hefty supplementation already, this will now be increased).
Spending the weekend in closer contact with him (no PlayStation, ha!) I’m increasingly aware that he is suppressing his cough in front of others. I get this. Who wants to cough all over people? Who wants the questions? The jokes about giving up smoking? But suppressing his cough is not good at all; he needs to get it off his chest (literally) to stop the mucous build up. We’ve bought forward his next clinic review to see if he needs further treatment, despite being only a few weeks clear of his last IVs, and recent steroids. It’s disheartening to take on these treatments - not so much his usual day in-day out ones (which already take up 1-2 hours of his day and he takes as a given) but the extra burden of IV antibiotic courses every couple of months and the yucky steroid side effects, but then still not see any improvement.
I’ve just been looking around for medical insurance for a holiday we just booked, which is about as fun as poking chilli dipped cocktail sticks in your eye. Even looking at a company who have worked with the CF Trust to better understand the condition (and not panic by the vast amount of medications taken) it’s so expensive, and I’m not sure it will 100% cover us - In the hundreds of questions it throws at me, if I say yes to every one the policy will be astronomical. But I’m not sure if saying no is even true at times (example; Does he have an enlarged spleen? - um, I think they mentioned this on an ultrasound once, but it’s not a significant enlargement, so can I say no? Does he take drugs for asthma? Yes, but he doesn’t actually have asthma, we don’t think, just the symptoms can overlap at times, so can I say no? Have we visited A&E in the last year, well, technically yes, but only because our doctors were not available and we need to be admitted to the ward by being seen - in fact, we were wheeled up to the ward after just a phone call up to the ward anyway, no doctor review, so it’s just a technicality, right?). I just don’t know - any wrong answer and if something did happen it could invalidate the policy. Anyway, I daren’t apply yet as he may need IVs again before we go, which would change things - so a worry for another night.
We smile on - the main thing is we have a holiday to look forward to soon, and the kids are going to LOVE IT (more on that later). We will make it work somehow.
Today I had to play catch up on training - our walk is just a few weeks away now, and I need to up my game. I’m walking one long walk between 15 and 25km once a week now - but this is a far cry from the 67 I need to complete in a single day!
Please, if you can consider sponsoring us for this epic walk, that our Holywalkamolies team (Jo Cayley, Jennifer Dytham, Michele Dytham-Ward, Sarah Cater, Gem Wilkins, Annie Marriot, Michelle Kavanagh, Jo Elliot, Jenny Hays, Cassie Flack, Erika Pyne, Tracy Coulton-Weir, Bonny Fountain and I) will be completing in June, please follow this link to donate to the Cystic Fibrosis Trust. They fund groundbreaking research into CF - known by some as the most curable, incurable disease (next post I plan to write about all of our treatment options for Isaac, assuming he continues to decline, so watch this space). Thank you so much for the donations so far. I can’t tell you how much it means to us all x
More Gerhard Richter ❤️
