Miss Freddie (![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
freddiefraggles) wrote2009-12-15 11:44 am
freddiefraggles) wrote2009-12-15 11:44 am
The Story So Far, Part 2
Right, so, we left off at around July 2001. (Edit - Mum says I had the RNOH referral appointment around April / May that year actually! My memory is terrible.)
I met my consultant about that time, Mr Cannon. From what I can remember, he seemed to be a nice sort of chap, and surrounded by student doctors (the RNOH is, as one would expect, very hot on teaching). Possible operation options were discussed, mostly by him and my mum, with asking me what I thought every now and then. Broadly, the options were a fusion (fixing the ankle joint permanently to a nearly 90 degree angle), cementoma (fill the hole with medical cement), or, in a worst-case scenario, amputation. I confess, I have thought many a time about how much I just wish they would cut the damn thing off. If they had done at that time, by now I would have a well-bedded prosthetic. However, really, I guess I'm glad they didn't. Fusion was not something I wanted, I now want or will ever want. I actually would prefer amputation to fusion. Anyway, as some of our readers may be aware, what we went for was cementoma.
After that appointment, I had to wait until October for the operation, which they managed to neatly put in the October half term. Following the previous operation, I'd taken two or three weeks off school and gotten thoroughly bored. But with this one being at the beginning of half term, I didn't have to take any more days off school, which I was pleased with. I was just starting my GCSEs and it was hard enough having to traipse around on crutches, without the added worry of taking time off because of being ill. And the thing was I didn't feel ill, I just had a cast on my leg.
Anyway. I don't remember so much about this operation. I remember the hospital though. At the local one, I had my own room on the Children's Ward, but at the RNOH I was in the Adolescent Unit, in a bay of 4. The lad in the bed next to me was from Ireland and had had bone cancer in his right hip. Mr Cannon had taken out his right fibia and put it into the hip to support it. How clever is that? The girl opposite the Irish lad had scoliosis, like quite a lot of the children / teenagers treated there. I don't remember the other one opposite me. I don't think they had the curtain open very often. It wasn't really all that different for me though, I had a cast when I went in and a cast when I went out. I think that's why I wasn't all that bothered.
I'm going to fast forward at this point to around Easter of 2002. It was about this point where I decided, following advice from the last hospital I'd been to, it was time to come off the crutches. And instead of going from two to one and doing it gradually, I went straight from two to none. I had to tread gingerly and be careful, but then, I still do. It was just about building up the muscles again. I'd been on crutches for fifteen months, the first half of that was zero weight bearing as it was only after starting to go to the RNOH that the design of my cast was changed to allow me to put my foot down and attempt about 10-15% weight bearing. Either way, it's no wonder that I had trouble finding clothes that fitted my arms at that time, and I still do, to an extent. It seems that the average British woman has thinner arms than me.
Okay, fast forward a bit more. I got my GCSEs, my A2s, I made it to university! After a lot of teachers expected me to drop down a year, here I am, proving to them (and myself) that I can do it and I'm not going to let a trifling little thing like a cancer scare slow me down. I'd been going for check-ups at the hospital every so often, 6 weeks, 3 months, 6 months, yearly, and every time, except one, I saw a different registrar (doctor) - and never Mr Cannon. We're now about six years after the RNOH operation when I started at Exeter and my ankle was having a bit of trouble with the giant hill I had to walk up and down to get to the department every day. An operation was mooted at the regular hospital check up in September 2005 and I was given another appointment to see Mr Cannon. This was the second time I'd seen him, ever and to this day. This time he wanted to go for fusion. I was still not entirely comfortable with this procedure but was beginning to get really annoyed with it and it was even, at the end of the academic year (May-July 2005), affecting my uni work. An operation date was set, July 2006. Over the course of the year though, I knew it wasn't what I wanted to do, and I'd just got myself a little car and had that at uni, which was making my life a lot easier, since I didn't have to carry my guitar amp and all my stuff around for rehearsals - I could put it in the car! The pain had slackened off with not doing so much exercise (and this is something I've always struggled with - the balance of doing enough exercise to stay fit and healthy compared to not doing so much as to make my ankle hurt) and I really didn't want to have this permanent, irreversible thing done to my bones! So I cancelled the operation. I'm glad I did, I didn't want it and it wasn't right at the time.
So, to bring you to the present. I was to be moved to two-yearly appointments at the hospital, but earlier on in 2009 there was a marked deterioration in pain. I brought my appointment as far as I could, which was September. I got to tell them exactly what was happening and how much it was hurting and finally the X-ray looked different. This was the key thing. For years, the X-ray has looked identical (I will do a pictures post at some point!) and then this year, the bone around the cementoma has changed in appearance. It has begun to attempt to grow around the cement, so it's no wonder it's been hurting. Finally the registrar I saw was prepared to get a second opinion from up the hall and take the initiative to investigate further.
I had an MRI scan in October, which I said about in Part 1. Tomorrow, I have the fluoro injection thing, which I will tell you all about afterwards. And on January 8th, I go for the follow-up appointment to see the pictures and make the decision.
Thanks for keeping with this so far, I know I have a tendency to waffle a bit, but writing this all out is really helping. When the decision's been made about what to do next, I hope this will be a good chronicle of what's going on that I will be able to look back on in years to come!
I met my consultant about that time, Mr Cannon. From what I can remember, he seemed to be a nice sort of chap, and surrounded by student doctors (the RNOH is, as one would expect, very hot on teaching). Possible operation options were discussed, mostly by him and my mum, with asking me what I thought every now and then. Broadly, the options were a fusion (fixing the ankle joint permanently to a nearly 90 degree angle), cementoma (fill the hole with medical cement), or, in a worst-case scenario, amputation. I confess, I have thought many a time about how much I just wish they would cut the damn thing off. If they had done at that time, by now I would have a well-bedded prosthetic. However, really, I guess I'm glad they didn't. Fusion was not something I wanted, I now want or will ever want. I actually would prefer amputation to fusion. Anyway, as some of our readers may be aware, what we went for was cementoma.
After that appointment, I had to wait until October for the operation, which they managed to neatly put in the October half term. Following the previous operation, I'd taken two or three weeks off school and gotten thoroughly bored. But with this one being at the beginning of half term, I didn't have to take any more days off school, which I was pleased with. I was just starting my GCSEs and it was hard enough having to traipse around on crutches, without the added worry of taking time off because of being ill. And the thing was I didn't feel ill, I just had a cast on my leg.
Anyway. I don't remember so much about this operation. I remember the hospital though. At the local one, I had my own room on the Children's Ward, but at the RNOH I was in the Adolescent Unit, in a bay of 4. The lad in the bed next to me was from Ireland and had had bone cancer in his right hip. Mr Cannon had taken out his right fibia and put it into the hip to support it. How clever is that? The girl opposite the Irish lad had scoliosis, like quite a lot of the children / teenagers treated there. I don't remember the other one opposite me. I don't think they had the curtain open very often. It wasn't really all that different for me though, I had a cast when I went in and a cast when I went out. I think that's why I wasn't all that bothered.
I'm going to fast forward at this point to around Easter of 2002. It was about this point where I decided, following advice from the last hospital I'd been to, it was time to come off the crutches. And instead of going from two to one and doing it gradually, I went straight from two to none. I had to tread gingerly and be careful, but then, I still do. It was just about building up the muscles again. I'd been on crutches for fifteen months, the first half of that was zero weight bearing as it was only after starting to go to the RNOH that the design of my cast was changed to allow me to put my foot down and attempt about 10-15% weight bearing. Either way, it's no wonder that I had trouble finding clothes that fitted my arms at that time, and I still do, to an extent. It seems that the average British woman has thinner arms than me.
Okay, fast forward a bit more. I got my GCSEs, my A2s, I made it to university! After a lot of teachers expected me to drop down a year, here I am, proving to them (and myself) that I can do it and I'm not going to let a trifling little thing like a cancer scare slow me down. I'd been going for check-ups at the hospital every so often, 6 weeks, 3 months, 6 months, yearly, and every time, except one, I saw a different registrar (doctor) - and never Mr Cannon. We're now about six years after the RNOH operation when I started at Exeter and my ankle was having a bit of trouble with the giant hill I had to walk up and down to get to the department every day. An operation was mooted at the regular hospital check up in September 2005 and I was given another appointment to see Mr Cannon. This was the second time I'd seen him, ever and to this day. This time he wanted to go for fusion. I was still not entirely comfortable with this procedure but was beginning to get really annoyed with it and it was even, at the end of the academic year (May-July 2005), affecting my uni work. An operation date was set, July 2006. Over the course of the year though, I knew it wasn't what I wanted to do, and I'd just got myself a little car and had that at uni, which was making my life a lot easier, since I didn't have to carry my guitar amp and all my stuff around for rehearsals - I could put it in the car! The pain had slackened off with not doing so much exercise (and this is something I've always struggled with - the balance of doing enough exercise to stay fit and healthy compared to not doing so much as to make my ankle hurt) and I really didn't want to have this permanent, irreversible thing done to my bones! So I cancelled the operation. I'm glad I did, I didn't want it and it wasn't right at the time.
So, to bring you to the present. I was to be moved to two-yearly appointments at the hospital, but earlier on in 2009 there was a marked deterioration in pain. I brought my appointment as far as I could, which was September. I got to tell them exactly what was happening and how much it was hurting and finally the X-ray looked different. This was the key thing. For years, the X-ray has looked identical (I will do a pictures post at some point!) and then this year, the bone around the cementoma has changed in appearance. It has begun to attempt to grow around the cement, so it's no wonder it's been hurting. Finally the registrar I saw was prepared to get a second opinion from up the hall and take the initiative to investigate further.
I had an MRI scan in October, which I said about in Part 1. Tomorrow, I have the fluoro injection thing, which I will tell you all about afterwards. And on January 8th, I go for the follow-up appointment to see the pictures and make the decision.
Thanks for keeping with this so far, I know I have a tendency to waffle a bit, but writing this all out is really helping. When the decision's been made about what to do next, I hope this will be a good chronicle of what's going on that I will be able to look back on in years to come!