Monday 24 August 2009

Weekend of 22nd/23rd August

Decided to make the most of Tobes still feeling fine, and made the trip to Lucerne. The old town is lovely, and the two bridges are definitely worthy of a visit. Both boys loved running the entire length of them, happy to miss the 600 year old provenance!

The highlight was Mount Pilatus. With weather at the bottom being pretty grey and gloomy, we did wonder whether we'd get any view at all if we went up the mountain. A boat across the lake, followed by a cog train that travelled up the mountain at a very steep 47%, left the boys in ecstasy. Luckily the fellow passengers appreciated seeing the boys whoop and yelp with excitement. As we went higher, we went above cloud level and were treated to some fantastic views of the Alps as we looked south. A cable car down and a stop off at the Rodelbahn (summer toboggan run) gave the boys their fill of transport methods for one day. Once at the bottom of the mountain though, they were still thrilled with a trolley-bus journey back to the centre of Lucerne, before heading back to Bad Zurzach.

Friday 21st August

All went well at the PSI, and Toby had a great afternoon playing contentedly (his behaviour the best of all week).

His eye is still doing really well, with him not complaining of any pain, not rubbing or scratching it, and certainly no signs of infection. Possibly slightly bloodshot, but really the biggest thing to note is just the pinknes of his skin. Something Martina, the anaesthetist yeterday, assured me was as much to do with the sticking plaster they use to tape his eye open during the treatment, as much as the radiation itself. Still nothing unusual in his appetite, or feeling sick either, which is great news. He's getting (marginally) happier about having the drops in his eyes too.

I've signed up to unlimited international calls with Skype for a month. All for 10 Euros. Called my university friend in South Africa, after Tobes went to bed, and before I had to wake him to take him to the airport to collect Kyle and Sam again.

Wednesday 19th and Thursday 20th August

Wednesday's treatment passed uneventfully, other than a short delay. Everything is definitely becoming very familiar now. The big news of the day was that the UK is finally going to get a proton therapy centre. It was on East Midlands Today, Channel 4 and Sky News. Thank goodness for the internet. It's fantastic news. I really hope now the delivery of the centre is well planned and thought out. Something I'd be happy to contribute to should they need parental input from previous proton therapy experiences.

Thursday's treatment was also fine. It's now a clear chain of events. We arrive at the PSI, the security officers clearly recognise the only British number plate on site (!) and wave us through, (to which Toby waves back!), we get to the waiting room where Toby want to do drawing or play with trains. He then gets called through, and starts the mantra about getting his 'beads' and not wanting 'the wire'. By this he's referring to not wanting the anaesthetic on slow drip and attached to him. Seems he's better at having it pushed through quickly for a get on with it approach to knocking him out. The wigglies have a drink of water and then a drink of milk..as he understands it.

I then get to go for a coffee and a read of my book (now finished Angels and Demons and reading some rubbish called 'From Flab to Fab', which tries to dispel many health diet and exercise myths. Those who know me know how I love my trivia! Really do need something more taxing though) and then about an hour later I go back to the waiting room and they call me through when Tobes is ready. I go into the recovery room and wait another 10-15minutes for him to wake up and then it's back to waiting on him hand and foot.


I did get to speak to Anthony Lomax today however. I recognised his name from one of the research papers we'd read, and it turns out he's from Manchester but has been at the PSI for 17 years. He's a medical physicist, and we discussed the news that yesterday it was announced the UK would get a proton therapy centre. He knew the news was imminent as is involved with the National Commissioning Group (NCG). They are the team who approve cases for proton therapy abroad. He gave a bit of an insight into where we should try and visit while we're over here, and also into how his role differs from the doctors over here.

In the afternoon, we went out for a bike ride. The hottest day of our time over here seemed to be a perfectly good choice, (not!) for such an event. 37 degree heat, and only planning on a small trip, I didn't take any real kit, but sure enough, my handlebars decided to work loose, affecting the angle at which my hands could control them. Luckily there is a bike shop in every village over here so I stopped at the first one, popped in and was cheeky enough to ask whether they'd mind tightening up the headset, and a minute later we were back on our way, and hot and sweaty all over again! We followed the well marked and well maintained bike routes, which happened to mirror the railway line and Toby was in his element every time we saw a train, and even when we passed a couple of old redundant ones in a siding!