Thursday, 2 April 2015

To London!

On Tuesday I travelled over to London with Emily because I had an appointment for a Doppler scan at UCL at 9am on Wednesday morning.  We managed to get a hotel nearby at Euston so we stayed the night before the scan.  Tuesday evening we went to the theatre to see Matilda.  The show was absolutely brilliant and I would recommend if you have the opportunity to see it then do! The kids were fantastic, very talented young people.  I would say that was one of the best shows that I have seen in a good while.  

The next morning I had the Doppler scan at UCL.  The staff at the vascular lab were very friendly and helpful.  I didn't have to wait long for the scan because I was the first appointment of the day.  It was rather interesting seeing the blood through the arteries on the scan.  I waited for the results to then take over to my second appointment of the day. 

The second appointment of the day was with Mr Christopher at Highgate Private Hospital.  It was a bit of a walk from the bus stop to the hospital.  The journey would have been slightly easier if we could do the underground but it currently isn't accessible.  Still we managed to arrive at the hospital with plenty of time spare.  While we were waiting for the appointment I took a quick nosey at the results of the scan.  It was rather interesting that the arteries in my left arm are significantly smaller than on the right side.  I'm wondering if that is partly why my left hand has the tendency to go purple and my fingers bright white.  

When I got in to see Mr Christopher we went over my options for surgery.  I already knew that I wanted to go for forearm phalloplasty as that has the best results.  Mr Christopher said that I would be having surgery with Mr Garaffa as he is quicker than him and because of my gastroparesis I need to be under as little time as possible because the anaesthetic will slow my stomach down even more the more that they need to use.  The surgery will be at the hospital of St John and St Elizabeth which is just around the corner from Regent's Park in London.  I did have the option of Slough but to be honest I haven't heard very good things about the Slough hospital.  

My next step is to get hair removal on my arm because the site where they want to take the graft for the urethra is as Mr Christopher put it, a forest and you don't want a forest in your urethra.  Ok then! He also set me a new weight target, my original weight goal was for metoidioplasty which he said he is a lot stricter with weight.  So instead of my goal weight being 12 stone it is now going to be 12 stone 9 pounds.  So from where I am I only need to lose a few more pounds! Once I am down to that new goal I just need my GP to fax the surgeons secretary. 

I emailed the laser clinic at Southmead hospital because they have done hair removal for lower surgery for a number of other patients before.  I didn't expect a response so quickly because I emailed them quite late in the afternoon and I got a response at 8pm! Unfortunately the referral has to come from the gender clinic which may slow things down a bit.  Also their waiting list is about 15 weeks from receiving the referral.  I had to phone the GIC this morning because as far as I knew I had been discharged but it turns out that I haven't been discharged after all.  This is good because if I had to be re-referred their waiting list is over a year! So I am just waiting on Charing Cross to phone me back.  

Another reason I need to see the GIC again is because my referral has expired.  Apparently they like the surgery to be done within a year of the referral being done.  In my case because of delays in chest surgery where I had to have way more surgeries than necessary, plus I had to lose a significant amount of weight. this meant my referral is very old.  My referral was done in 2010! I have seen the gender clinic more recently than that but they may want to see me again because I don't think I've seen them within the last year or so.  I'm really hoping that I can get an appointment soon because I've already had enough delays as it is.  

On the bus on the way from Highgate to Kings Cross a ticket inspector came on the bus.  They asked to inspect peoples tickets/passes to make sure they had paid.  I understand this.  When it came to us, we produced my Disabled bus pass which is a companion card as well which means that I get a carer on with me for free as well.  Well the ticket inspector person informed us that London does not accept this, only the disabled person can get on for free.  This is the first time this has come up before! We have used that companion card loads of times in London and my carer has always got on for free with me.  They told us to check the terms and conditions of the card but that we would have to appeal the fine.  Well the terms and conditions indicate that it may or may not be accepted outside our area and that we should check, we did check with the bus driver and they said it was fine.  We had got several buses just on this trip and been fine.  Really if they don't accept companion passes they really should tell their drivers that they don't! So now we have to take the time to appeal this fine and it is another stressful thing we could have done without! It's ridiculous that London do not accept them because to get a companion card you have a medical need for an escort.  So well done London, fining someone who is disabled and needs a carer, what complete assholes you are. 

The journey home was pretty uneventful on the train.  Now I'm really tired from the busy couple of days.  At least things are generally going in the right direction even if things might be delayed a little yet again...  I'm still feeling positive about things until I hear otherwise.