Week in review

    It's been a tough week, I spoke to my specialist on Monday, and didn't exactly get the news I was hoping for. I mean it was nothing majorly bad. Just, I guess, the straw that broke the camels back I guess. 

    So basically, my body is already building up antibodies to the infliximab so they want to add in a second chemo drug to counteract that. Which given all the horrible side effects I am currently having from the one they already have me on, pretty much broke me. I couldn't sleep that night and only managed to grab a couple of hours in the early morning after having a good cry. 

    He also talked about surgery, it wouldn't be a cure, as there is no cure for Crohn's but he said if they remove the infected area and the area with the stricter and sort out the fistula's we could at least be starting with a clean slate, and it would make it easier for the drugs to do their job. 

    But here was the real kicker of the whole conversation. He said, that he thought I would need to stay on Chemo for the rest of my life!

    And I'm not gonna lie, that hurt. I always had this belief that given time, or surgery my Crohn's would settle down and I could stop having the infusions. But apparently my Crohn's is to severe for that to be likely. 

    Now, I've managed to stay pretty positive throughout this, but there are times when it is just impossible to keep smiling and joking and this was one of mine. I felt terrible and I have spent most of the week feeling pretty low. And just not really having the energy to do anything. 

    I've forced myself to though, in fact Kye and I have got caught up on our forensic psychology course this week, as we started it like two weeks late, as that was when I discovered it and I've force myself to get other things done, because you have to don't you, but I've felt so low. 

    And then couple of days ago, I got a letter from my head IBD nurse, telling me I had to self isolate. So while the rest of Cornwall are laughing it up in tier one, I'm still in frigging lock down. I mean it doesn't make a huge difference as we don't go out a lot anyway, but I'd been craving a trip to B&M and was looking forward to December starting, so I could and then this. Grrrrr. 

    I know, I know it's for my own good, and it's not safe to be running about out there with a compromised immune system, but still, it sucks!

    Still I guess it makes the whole Christmas thing easier, as poor mum was gonna have to choose, between her 3 daughters and each of our families, as to which to have in her bubble, as you only allowed 2 other households, so now I'm not an option anyway, she can see my two sisters and their kids without feeling guilty about leaving me out and I can pretend, that I would have been one of her choices, even though we all know I wouldn't. Not unless she just broke the rules and saw all three of us anyway. 

    And no I am not having a pity party about that, trust me, when it comes to our family, I am the black sheep and have been for a very long time, but it's a long story so I shall spare you the details. 

    But to give you an idea of our family dynamic, I have, had more facebook friends ask if I am okay and message me to see how I am doing, than I have brothers or sister and bare in mind I have eight brothers and sisters. And only one of them has commented about my condition and that isn't messaging to ask how I am doing, that's literally just commenting on facebook posts. 

    Thankfully, I have a lot of awesome friends, so it doesn't really matter, but still, it stings a bit. Especially right now when I am feeling so low. 

    Any who, that's pretty much me this week, a self pitying, miserable, tearful person, I hope your week has been better. 

    Love and hugs 

    Joss xx