Yesterday I went to London to see Jill in Bart's. My bus ticket cost £18 return, a bargain (or so I thought). What a palaver!!!!! It took us from 8.50 till 10.25 to get from Fareham to Winchester, via Southampton Central and Southampton University. Then we headed for Heathrow, and that takes some driving round these days. Oh and they've replaced Concorde with an Emirates Airbus A380 (on the roundabout).
Afterwards we headed on the M4 into London. All was well and good till we got to Hammersmith. Then it was a lot of stop and a bit of start all the way to Hyde Park Corner. By the time we made it to Victoria it was 13.08, 45 minutes late. Now my return bus left at 17.50 so I didn't have much time to waste. So I headed for Victoria tube station.
Now Victoria tube station is right next to Victoria train station, but both of these are a bit of a walk from Victoria bus station. Then I had to get a ticket from the automated machines, and of course there was a queue!
I eventually got on to a tube and even got a seat after the next station. I got off at Mansion House (Blackfriars would have been easier but it's closed till 2011) and, trusty map book in hand, made my way past St Paul's to Bart's. Just to make life interesting I hadn't got a clue which ward Jill was in - never thought to ask her - and Bart's isn't great at making it easy. I ended up phoning A in a state of fraughtness asking him to text me the ward phone numbers.
Eventually I found the right floor of the right building. Of course I chose the wrong ward at first before getting it right. Jill was asleep but I'd barely got in her room when she woke up. She was very pleased to see me. Her room was a little warm, though that could have been me after the panic of getting into London and then finding her. We laughed and giggled, and chatted.
Then it was time for me to leave. As I had an hour before my bus left I figured I could walk it back. It didn't look far. Down Giltspur Street to Ludgate Hill. Along Fleet Street and Strand. Into Whitehall to Parliament Square. Then down Broadway and Victorial Street. Well of course I just missed the bus!!!! It was pulling out of the bus station as I was waiting to cross the road. Cue much swearing. That meant I would have to loiter around for a while before the next bus, plus pay for another ticket. So, being tired and weary and bloody fed up, I caught the tube back to Westminster, walked to Waterloo, where a train to Portsmouth left in 10 minutes. And this is where my day finally improved. It was the express service, so I was in Havant (where A came to fetch me) and then home before the bus I missed had made it into Fareham. Needless to say I slept well last night.
Next time I am definitely going by train. I don't care how much it costs!
Sunday 6 September 2009
Wednesday 2 September 2009
And so it goes on
I had an appointment this morning at the dermatology clinic for a review of my polymorphic light eruption (PLE) and a check on how the UV desensitisation was going. A came with me as his memories of the last couple of summers are different to mine - one of us is obviously getting Alzheimers LOL!
Before we went I had more or less decided to take next year off the desensitising just to see how effective it had been. Last year I had the treatment in the narrowband UVB machine, starting early February and finishing early-mid March. I had my first proper break out on May 11th. Yes, I had been 'foolish' insofar as going around in warm, sunny weather without long sleeves or sun cream. When I reacted I was devastated. However it never got as bad as the previous year (pre-treatment). Yet as the summer went on I slowly but surely reverted to that previous year's sensitivity levels.
This year I had the treatment in the 'other' machine (UVA & UVB), starting early March and finishing just before Easter (mid April). I broke out on Whit Sunday. Again it was probably my own fault for sitting in my friend's garden (too hot in the house, it was a sauna-like day) for 4 hours. I sat under an umbrella as much as possible but it was probably asking for trouble really. That evening I felt exhausted (could be down to the alcohol consumed or not) and very spotty, and a little itchy. This year I'd been a bit more careful and not taken so many chances, so I was particularly put out that although the treatment had started a month later it had only bought me 2 weeks extra freedom. And, like last year, as the summer has progressed I have once again reverted to pre-treatment levels of sensitivity. In fact in August my skin got spotty just from putting the washing out (grump!).
This is why I'd like a year off treatment to see how next year goes. The weather is rather an important, and uncontrollable, variable but if going into Southampton 3 times a week for 5 weeks for 20 minutes at a time (from entering to leaving) is not really going to get me more than 6 weeks or so's freedom is it really worth it? I think not, especially as all that radiation treatment ('cos that's what UV is) could possibly upset one of my moles and turn it cancerous.
So, after having a good cry in front of the SHO this morning, I got a chat with Dr Ardern-Jones himself. He is having second thoughts on the diagnosis of PLE. I have got to provide samples of my pee and poo, AND have blood taken (needles!!!!!!) all on the same day - yes I HATES needles, but if having regular jabs would calm all this down I'd do it. Oh, and none of them can be exposed to light. I have to catch them in foil covered containers, otherwise they will be contaminated and not be testable - any bright ideas on a postcard please.
That lot will get sent away and tested, mainly for porphyria with some blood being tested for lupus. If that lot come back negative I get a trip to Amersham/High Wycombe for some in-depth screening - they have better kit than Southampton. I had a choice between there, Cardiff and London. If I was on my own I'd probably have opted for London but, as A was with me and will be taxi driver on the day, he chose that one. What would I do without him!
Of course, I've been researching these conditions and, although I have no training whatsoever and therefore should not tell an expert he's looking the wrong way, I think it seems more likely to be lupus - certainly fits better with some of the non-skin issues I've had in recent years. If it does turn out to be porphyria (and there are 7 to choose from), please can it be one of those that doesn't have liver involvement. Me, no booze ever again?! Yeah, right.
Before we went I had more or less decided to take next year off the desensitising just to see how effective it had been. Last year I had the treatment in the narrowband UVB machine, starting early February and finishing early-mid March. I had my first proper break out on May 11th. Yes, I had been 'foolish' insofar as going around in warm, sunny weather without long sleeves or sun cream. When I reacted I was devastated. However it never got as bad as the previous year (pre-treatment). Yet as the summer went on I slowly but surely reverted to that previous year's sensitivity levels.
This year I had the treatment in the 'other' machine (UVA & UVB), starting early March and finishing just before Easter (mid April). I broke out on Whit Sunday. Again it was probably my own fault for sitting in my friend's garden (too hot in the house, it was a sauna-like day) for 4 hours. I sat under an umbrella as much as possible but it was probably asking for trouble really. That evening I felt exhausted (could be down to the alcohol consumed or not) and very spotty, and a little itchy. This year I'd been a bit more careful and not taken so many chances, so I was particularly put out that although the treatment had started a month later it had only bought me 2 weeks extra freedom. And, like last year, as the summer has progressed I have once again reverted to pre-treatment levels of sensitivity. In fact in August my skin got spotty just from putting the washing out (grump!).
This is why I'd like a year off treatment to see how next year goes. The weather is rather an important, and uncontrollable, variable but if going into Southampton 3 times a week for 5 weeks for 20 minutes at a time (from entering to leaving) is not really going to get me more than 6 weeks or so's freedom is it really worth it? I think not, especially as all that radiation treatment ('cos that's what UV is) could possibly upset one of my moles and turn it cancerous.
So, after having a good cry in front of the SHO this morning, I got a chat with Dr Ardern-Jones himself. He is having second thoughts on the diagnosis of PLE. I have got to provide samples of my pee and poo, AND have blood taken (needles!!!!!!) all on the same day - yes I HATES needles, but if having regular jabs would calm all this down I'd do it. Oh, and none of them can be exposed to light. I have to catch them in foil covered containers, otherwise they will be contaminated and not be testable - any bright ideas on a postcard please.
That lot will get sent away and tested, mainly for porphyria with some blood being tested for lupus. If that lot come back negative I get a trip to Amersham/High Wycombe for some in-depth screening - they have better kit than Southampton. I had a choice between there, Cardiff and London. If I was on my own I'd probably have opted for London but, as A was with me and will be taxi driver on the day, he chose that one. What would I do without him!
Of course, I've been researching these conditions and, although I have no training whatsoever and therefore should not tell an expert he's looking the wrong way, I think it seems more likely to be lupus - certainly fits better with some of the non-skin issues I've had in recent years. If it does turn out to be porphyria (and there are 7 to choose from), please can it be one of those that doesn't have liver involvement. Me, no booze ever again?! Yeah, right.
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