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.

Still Pregnant

But I’m actually feeling afraid that it won’t happen. Each time I go to the toilet I check the paper to see if my period has started and I try not to think that it wouldn’t be a period. I suppose I am bewildered by it all and I just don’t understand why I suddenly got lucky. My mum says it’s because I’ve had some really crap things happen to me and it’s about time I had such good news. But I’ve felt like an incredibly lucky person for a while now. I have so many things to be thankful for. This is too good to be true. I’m waiting for the bad news to come, to hear that the baby isn’t growing because I don’t have adrenal glands or it can’t go to term because a tumour is pushing on my womb and I have a ton of new adrenalin that’s about to explode in my body. Why can’t I be happy about this, why can’t I relax? Arrgh

Doing the right thing

We are so excited that we haven’t followed convention and we have told everyone. It is so early but you know what I’m having a baby and if that goes wrong I will have lost a baby so who cares who knows. I was sitting on the tube yesterday and I wanted to tell everyone sitting on there with me. It still doesn’t feel real, I keep expecting it to be over but I’m so happy. The more I think about it the happier I am. So how strange for a really good friend to ask ‘Are you sure you are doing the right thing?’ She also asked if I was going to have the baby tested for VHL, and she remembered that that could happen at 5 weeks. No. Simple as that. No. She said it with love in her heart, she is the type of person who would hate to feel she could have made a difference and didn’t take the risk but it was a strange sensation to even consider the idea. Even if this baby does have VHL I’m not going to want to find out till after it is born and my partner feels the same. Who ever this child becomes it will be ours and we will love it, I may not always like it but I already love him/her.

No we are not getting married!

To Plan or not to Plan

How quickly things change. I’m pregnant!

Something I always hoped and prayed would happen. All those times I quietly swallowed tears when people assumed that I would be a mum one day, they never even thinking that I couldn’t plan it, we couldn’t plan it. 

And we didn’t. One night of recklessness and there you go. 

To quote my partner ‘He shoots, he scores’ So there we have it. A baby.

Oh my.

I’m sure I’ll have more to say about this but I’m still a bit stunned not to mention many more emotions like, nerves, fear and utter joy.

It is very early days and so we have to be realistic but that fact that we have told our families and loads of our friends already tells you how thrilled I am and no I'm not thinking about the genetic profile. 

Annual review

It’s not for a while (had appointment letter through) but I’ve been feeling uneasy, partly because my work has been very difficult and I’m anxious about a number of things. When one thing makes you feel low other things do too. The truth is I’m concerned about my eye. I had a weird thing when I had tunnel vision. I can do everything I need to with one eye, that doesn’t bother me so much it’s the idea of the surgery, if it had to happen. Eyes being injected – ooohhurrg, it makes me shiver just thinking about it. At least my big toe has gone back to feeling as it should. Never did make it to the GP. (naughty)

Tumours Disappear

Another blogger has reminded me of a time when I was about 16 and I was told I had a brain tumour. They (the doctors) said they would rescan in a year (which I’m now very used to) as it wasn’t very large and I had no symptoms. In the next scan it had gone. They (dr’s) didn’t fuss or think this was at all remarkable. If I remember correctly they put it down to it never being there at all. What the other blogger reminded me of was that at the moment I discovered that it was gone I allowed myself to accept that it had been there before and cope with that. I broke down for a couple of days. 

I functioned of course but I cried a lot and I was scared about it. Now, having had tumours that have only left my body through surgery or are still there I have begun to cope with them. I get very frightened sometimes that they will take away the things I love about my life, you know the ability to move and talk. But it also reminded me of something my Prof said. He mentioned that small tumours do come and go, they are there in one scan and gone the next. 

Crazy that my body does this to me.

I met a man last night who is 40 something and he has been a wheelchair user since he was 17 when he was in a car accident. It was strange to be in his company as I know that there is a likelihood that I may well end up a wheelchair user and more likely that my dad will be in one first. I wanted to ask him so many questions but it didn’t seem appropriate as we were playing poker.

Dad Update (An email)

Hello everybody

Just to keep you in the know. Dad spent last week at hospital again and was thoroughly tested, prodded about and medicated and the news at the moment is that they are going to try and increase his medication as it was doing some good. 

He also endured a rather painful 4min long injection of testosterone but the result is that he can now lift a sword aloft, cry ‘I have the power’ and any near by tigers turn from quivering, speaking wimps to ferocious Skelator fighting warriors.

p.s. dad says please don’t send any of your men to challenge him (or tigers for that matter)

Beauty Queen

Recently I was at an event, not my sisters wedding but a big party type thing. Now as big headed as this is going to make me sound I looked great, I had made a real effort. 

I felt fantastic and I walked out from the bathroom where I had changed from my jeans and t-shirt and into the room where several people were gathered. Words like ‘stunning’ and ‘amazing’ were used. A friend of ours even let his jaw drop. I looked good and my boyfriend didn’t comment. 

Later on I was thinking about it and I asked him at my sisters wedding if he thought I looked good and then I thought back and well he doesn’t do that, he doesn’t say I look good. 

Lots of other people did. So I wonder if he doesn’t see me as stunning or amazing maybe it can’t see anything but my imperfections. Perhaps it is because he knows about me, he sees more than just the outer layer of me. It made me feel a little bit sad but also I sort of expect it from him as he isn’t the kind of man to only be with someone because of the way they look. He of course tells me that he loves me and I am confident that he does. And I know that in the recent past that he has said that he fancies me but that is generally when he is either trying to, or just about to get his leg over. I’m prepared to be proved paranoid but I’m also pissed off by the possibility that it might be true.

My Big Toe

My big toe is tingly. I’m hoping that this is due to something like an in-growing toenail. The problem is that I know my dad’s toes do tingly things and I also know that tumours in various places cause that too. Now at the moment I am not feeling too freaked out about it and I’m actually thinking that my toenail looks a little rubbish and could well be the cause. And even if it is a tumour I’m thinking that it may not be something that needs fixing. I could really do with a pill that shrinks tumours, then I bet my partner would say yes to us trying for a baby.

Oh bollocks.

I suppose I should phone my G.P. and find out if my toenail is the culprit but I don't want to this week. 

I think I will wait until after my sisters wedding.

Dad's next set of tests are at the end of September.

Aluminous Yellow

Having VHL means that I often have to have tests on my body. I was reading through a fellow VHLer's blog and was amused by the way they felt about tests. The most unpleasant one was Venus sampling, but that’s mainly because they shaved half of my pubic hair and cut into my groin. The Dr was a complete arse and I’ve vowed to never let that happen to me again. I’ve had a lot of scans, MIR, CAT, something with radiation, bog standard x-rays and probably more that I don't even know about. The most humorous is when you have the eye test with the dye. The first time I had this test the dye made me feel sick and that’s because they gave me the same amount as they gave my dad. I was about 14 at the time. We left Addenbrookes and stopped off at a Happy Eater, this was in the days of the yellow paintwork; my skin was so full of the dye that I was a very similar colour, my blonde hair looked green against it. When weeing later on it was luminous yellow. My dad and brother had the same colour wee which was not only a shock for them but also the man who happened to be stood next then in the men’s urinal. 
When I had the dye test done more recently I called my flat mates to have a look at my wee afterwards. They were really grateful.

Writing a will

I wrote a will when I was 17. 

It wasn’t a fully legal one with a solicitor or anything like that but I was thinking that now I’m a homeowner I should do a proper one. I’ve lost the other one, it was on the computer we had at my parent’s house. I didn’t have much to leave behind but I remember thinking about my diaries and any jewellery I liked. I think I was going to donate my violin to my old primary school. When I think about it now, I’d just have more stuff to give away and now it would go to my partner and then he’d sort out what to do. But that was the unimportant side of it, the important part was to help people who would be left know what my last wishes were.

When my brother died we didn’t know exactly what he would have wanted. ‘Not to be dead’ someone said at the time. I’m not sure that was completely true. If my brother got his way death is an adventure and he’s ‘still travelling’ as it says on his gravestone. What did he want? He mattered a bit at the time but I think we did him proud, as with many funerals of the too young the church was packed, standing room only and some people had to be outside. My uncle spoke about him and although I knew how great he was I don’t think everyone there quite realised just how great. He was cremated and some of the ashes were buried, some were scattered in other places. I want to be cremated and the ashes can be spread wherever you (loved ones left over) like. So what do I want? Well a packed church would be nice and my eulogy needs to sounds like the truth. And I want the truth to be that I have lived the life I wanted to and helped others while doing it. I’d like to think that I was a good enough teacher to warrant some of my students, past and present, turning up and I want to be missed. I’d like to think that I leave behind hope though. A grand idea I know but that’s something worth lasting.

Opticians

It isn’t all bad then, this disease of mine. I booked an opticians appointment at a well known chain of opticians, not that I think that’s a good thing, really I think we should support small businesses, but I haven’t because the money side of it swayed me, anyway. I haven’t been for a while, 3 years or so and as I get looked at at Moorefields every year and they know what they are doing as far as eyes are concerned. So the last time I went was in Barnet and this time I went to Woodgreen. They have a funny system of having to put you on their books, maybe it’s a franchise thing. The site test started as normal and then he asked ‘any problems with your eyes.’ ‘Well.’ I said and then I launched into… ‘I have a tumour on my optic nerve in the right eye and a small patch in that eye where I can’t see due to a crinkling of the maclia.’ The optician looked visibly happier at this news while trying o maintain his professional happy face, writing it all down in a box on his form that was far too small for all this. ‘I have Von hippel Lindau disease.’ I said smiling away as you do.

‘I don’t remember how to spell that.’ He said, his voice steadily controlling his excitement.

‘VHL will do.’ I suggested helpfully and he wrote it down. I smiled at him an ‘it’s alright to be excited smile.’

‘I used to work in a hospital and I saw all sorts there but not this, this is better than an average day isn’t it.’ He went about being very professional doing all the correct tests and I was pleased to hear that despite all that’s going on I actually have 20/20 vision. We talked about Moorefields and how when I go they often ask if the other people working there can have a look in my eye and I let them and so he tentatively asked if the other opticians could look, ‘of course.’ So for a brief time, my eye and my tumour had a slice of celebrity about them, we were now on first name terms and even though I hadn’t officially booked the contact lens appointment he saw me anyway so that I didn’t have to come back another day. Which was very kind of him (and I got that free which was even better) He discovered I had hayfever which was news to me and that I should change the type of contact lenses as I had a bit of an oxygen deficiency to my eyes. I have to say that I was very impressed by him. He told me off in a playful way when he heard that I don’t really check when I need to change the contact lenses each month. ‘with all that is happening with your eyes you should look after them.’ He’s right.

And so I left said chain opticians feeling special and rare and looked after and like I’d got a real bargain on my glasses (they did me a deal there too) Having a tumour on the optic nerve isn’t great but at least that day it felt better.

An email to people

Hi all

I thought you might like to know the latest on dad. He has spent the week in St Barts and has had lots of tests and scans, it’s mixed news really. Addenbrookes don’t appear to be able to locate his previous scans so they don’t know if any of his tumours are growing so he’s got to go back in 3 months to see if they are and then they’ll do a biopsy on one of the ones in his neck. It’s been a bit frustrating and dad feels a bit deflated as we all thought that they would be able to come up with a solution this time but we are still playing the waiting game.

The back surgeon doesn’t think his pain is being caused by the tumour on his lower spine but would operate to remove it if dad wants him to. I won’t go into the remarks on all of his tumours as I’ll be here all night.

He has been started on testosterone gel, weird and he can’t get it near women or children with it unless he’s covered up!

Any way

I’ll let you all know more when we do

I wish

I wish someone could fix my dad

20th May 2006

An odd week coming up, my dad is in hospital all week and I’m going to visit him everyday.

Tonight I walked onto the ward. 

You know the expression ‘face lit up’ well that happened, it was so strange. I know my dad loves me but I think I know him well enough now to see when he is scared. 

He is scared, he won’t admit it, anxious or nervous or apprehensive but he doesn’t say scared. I am. More afraid of the inevitable and as selfish as it sounds I always expect what ever happens to him to happen to me but earlier. When I’m feeling positive I think that it won’t ever be me that I’ve had my last tumour.

When I was at university I have a strong memory of sitting in the auditorium, listening to a lecture and feeling my arm go heavy. I could lift it, use it but some how it felt heavy and I knew that feeling, my other hand and arm had been doing it for months before I told anyone and then I had a scan and then I had a brain tumour. Of course I had the tumour while my arm was going heavy but it felt like it didn’t appear until I told anyone. I sat wriggling my fingers, pinching away at my arm and then I started to cry. My lecturer notice and she looked really pissed off. At the end of the lecture she asked me what was wrong in a cross way. She knew about the previous surgery and I told her about my arm, her face changed. We talked and she asked what would make me feel better. Imagine.

'A scan everyday.' That was it, I wanted to know every second what was going on inside me. Impossible.

I didn’t get there on Thursday by the way.

You don’t always get what you want

MARCH

Every one of these changes has left its mark

This time of year is bizarre. Ten years ago my brother died. Ten years ago I notice how warm the sun was on my face and I was glad I was alive. He wasn’t but I was. I took my life and I decided to make it worth living. I didn’t go to Disney land, I didn’t think about that side of life ten years ago. I listened to my uncle speak about my brother at his funeral and I knew that I wanted to have someone say things about me if I died. I didn’t want to be dead and have no epitaph so I set about living a bit more. You might not recognise it as such but that’s what this is. Take every moment and live it, even if it is crossing the street, cleaning the toilet, enjoying the touch of a hand, flirting, coughing, sleeping. As long as I’m not bored. I realised that I was bored and I don’t ever want to experience that again. Now if I feel boredom creeping in I get up and I do something, anything. 

I loved my brother and I remember him with love and fondness and I want him to still be here. I don’t want to be dead.

I still love him. When I’m at my most optimistic I think that he is still capable of loving me. I’m pretty sure he is the one who stops me having car accidents.

It is three minutes past ten

Can't sleep

I should be asleep but I can’t, I’m thinking of my non child, she is just like me but better, she has all the best bits of me and all the best bits of him. She doesn’t get upset or cross and she is bright and beautiful.