Another Day Curve

Not much to report, feeling healthy but tired. Just making sure I keep you posted, the loyal few that is.
Everything is going according to plan.

a few days at hospital

Just to say that next week I'm in twice for baby things. I'll let you know how it goes.

Day Curve

I had to get up very early, it should have been my first day back at school but I had a Day Curve. That’s when you have your blood taken through the day to see how much cortisone you have in your system. I was due for one anyway but we need to see if my baby is taking it and leaving me with too little. I haven’t had one done at Barts before but they are very thorough. As I was laying on the bed, (something to do with blood pressure I think) another person came in and ear-wigging I realised that he was having a day curve too. Now I’m having it because I don’t have any adrenal glands, but some women can have conditions where their adrenal glands don’t work, like Addisons. Anyway. He was a he so I started to wonder. We always used to wonder, my family and I, if people in waiting rooms had VHL but we never asked. My mum never wanted me to join one of those support groups because she didn’t want me to fall in love with someone with VHL and have a real problem having babies. I think that she also worried that we would hear horror stories or that our problems would upset others. Back to the day curve. So you have blood taken then you’re free for a period of time, sometimes just 30mins sometimes 2hours. There is a day room to go to and I took a good book and some school work and a deck of cards, hopeful that my partner would leave work early and come and entertain me. (He did) So after my third lot of blood I went into the day room and there was the other day curver. We exchanged hellos and then my curiosity took over. ‘You having a cortisone day curve?’ ‘Yes, you?’ ‘Yes.’ Pause. ‘Are you under Prof C?’ ‘Yep.’ ‘Me too.’ Then the moment of truth. ‘Have you got VHL?’ ‘Yes.’ ‘Me too, rare bunch aren’t we?’ And we got to talking. It was good. By the end of the day I felt a bit like I knew loads about him. We talked about our operations, our families, the losses the way we found out. We discussed our levels, I told him I was pregnant and he seemed really pleased, which was lovely because as odd as it sounds I thought he might say, that’s stupid why have you done that don’t you know the risks, but he didn’t. In fact when my partner turned up we talked about our knowledge of thinking about having a baby as a couple and he seemed to find this, well comforting, maybe.
There was a connection, almost like a distant family member. It’s good to meet others, to know we exist and we are strong and alive. It’s sad to hear of those who have died but I was proud to say my dad is on his way to 60 and still working. It gives hope. Too British to really make a leap into the unknown and offer a phone number, so I left a little card with my email address on it on his bag when he was having his penultimate blood done as we went home. Who knows if he will get in touch, I’ll let you know.

Eye Eye

I had my annual review for my eyes at the end of December. It was a warm day for December. My partner came with me even though I could have gone alone. I really like it when he comes because feel, well supported. Not to say that he isn’t wonderful and the number of appointments I have he couldn’t make all of them without using all his annual leave. So I saw a Miss and told them I was pregnant so they only gave me one eye drop. I had my eye, the one with the tumour on the optic nerve photographed and then scanned because of the maclia issue. I asked if I could talk to the main man. Mr Webster. I’m happy to name him because I think he is brilliant, they all are there actually. As my partner pointed out, they speak to you with respect and don’t patronise. They use medical language and make it clear. So the crunch, when Mr Webster spoke to me he said the tumour had grown. It’s been the same size for years now, but u have noticed a slight change in my vision in that eye so I wasn’t totally surprised. But he did say that there is anecdotal evidence that pregnancy can make tumours grow. So previously id been told the only treatment is laser and that would damage my sight because of the position of the tumour. The good news is that in America they had been working on a medication that will sort the tumour out and make it go away. ‘Is that oral medication?’ I asked, really what was I thinking?
‘No, that will be an injection in the eye.’ Right! I didn’t ask anymore, I can’t have it till after the baby is born so I’m happy to wait until nearer the time to ask if I’m awake when they do it, I bet you have to be.

Happy New Year by the way.