We've had to learn so much stuff, thought it might be useful to readers to explain some of the terms we now use as everyday language. This part will get updated no doubt...
Rhabdomyosarcoma
The type of cancer that Toby has. A childhood cancer of the muscle. In his case it's in the orbit, the muscle surrounding his eye.
Central line/Hickman line
A wire that comes out of Toby's chest that is used to administer chemotherapy, take blood samples, or give anaesthetics. Essentially a semi-permanent cannula, giving access to the blood stream. 'Wigglies' is the term used for/with children.
Neutrophils
A type of white blood cell. They are key players in our immunity systems, and get hit hard by chemo. A blood reading of 0.5 or less indicates neutropenia - high risk of picking up infections, but also limited ability for the body to fight it off. A key indicator as to whether more chemo is given ie whether the body can take it or not. Normal reading are nearer to 5, or above.
PSI Paul Scherrer Institut
The proton therapy treatment centre, located about 20 miles north west of Zurich. It's primary function is using protons for physics research. Proton therapy for cancer patients is a small part of what they do overall.
Kinderspital
The children's hospital in central Zurich. They are providing the oncology care similar to that QMC has been doing while at home in England. Chemotherapy, blood tests, etc.
Universitätspital
The main university hospital in Zurich. The opthalmic team are based here, keeping check on all issues arising from his treatment, relating to his eye function.
Local control
A term to describe the need for killing the cancer in the original site. Chemotherapy is a systemic approach and surgery/radiotherapy/proton therapy provides local control. You need both for the best chance of a cure.
Thursday 13 August 2009
Thurs 13 August - First trip to the eye clinic at the Universitätspital
Treatment all done and dusted by 10am today. The earliest so far. The anaesthetists have been fantastic with Toby. Friendly, caring, and chatty too. Part of the routine before he gets put to sleep, is to choose a 'bead' which represents his daily CT scan and daily proton therapy. They then get threaded onto a thread which can be hung on his cot, and we can see it get longer as the treatment progresses. He loves choosing them now and today was very chatty about the colour of the wrapping around his wiggglies. He's getting more predictable when he comes round after the anaesthetic, normally demanding food before his eyes are fully open! After breakfast in bed, he's ready to go - no hanging around for the little fella.
We had an appointment with the opthalmic team today, for them to check the cornea of Toby's eye, so decided to head in the direction of Zurich Universitätspital, and call in at a small town called Brugg, en route. Plan was to see if I could get a dongle for internet access, more cheaply than that offered at the flat. Short answer was no, but a bit more language practise added to the pile!
On to Zurich, still with the safety of sat nav. We've visited the Kinderspital, where they do the oncology checks, but this appointment was at the main university hospital. Made our way to the main entrance, to then have to retrace our steps back to Nord 2 building, before it got more interesting. I had to fill out a form as this was the first visit. I'd hoped our registration at the Kinderspital (1/4 mile up the road) would have covered this, but apparently not. The systems or processes are different, so the issue of insurance came up. I explained the NHS arrangement with PSI and Kinderspital, but unfortunately the receptionist didn't seem to think this mattered! 20 minutes of discussion, all in german, with Toby thoroughly bored, tugging at my sleeve, moaning, wanting attention and needing the toilet...
Eventually they sent us through to see the doctor. He wasn't familiar with the financial side of things, but seemed he was able to organise for someone to phone the PSI and Kinderspital(obvious, but the receptionist wouldn't/couldn't do this...Computer says 'no'!!!). Unsurprisingly they confirmed everything was in order and we were rolling. A quick check of Toby's cornea, showed it to be ok still, but a prescription for some drops to help throughout the treatment, where a dry eye is likely.
Interstingly, the building was huge, spacious, with very few people around, hence a sense of calm and control in the hospital. The equipment in the consulting room all looked quite old/manual, but immacualte in terms of how it had obviously been cared for and used.
Back to the flat for a late lunch, and a sit down, then out on the bike for a quick bike ride. Called in at the pharmacy to collect the prescriptions, and then caught some fresh air down by the river. The highlight for Tobes though? Crossing the railway line. Well, a train might have been near after all!!
Got back to the flat to find we were locked out. The key just kept spinning in the lock! This was the door at the front of the complex, so luckily after buzzing another flat owner, they let us in. Slightly embarrassing, but slightly more worrying for when we go out tomorrow!
We had an appointment with the opthalmic team today, for them to check the cornea of Toby's eye, so decided to head in the direction of Zurich Universitätspital, and call in at a small town called Brugg, en route. Plan was to see if I could get a dongle for internet access, more cheaply than that offered at the flat. Short answer was no, but a bit more language practise added to the pile!
On to Zurich, still with the safety of sat nav. We've visited the Kinderspital, where they do the oncology checks, but this appointment was at the main university hospital. Made our way to the main entrance, to then have to retrace our steps back to Nord 2 building, before it got more interesting. I had to fill out a form as this was the first visit. I'd hoped our registration at the Kinderspital (1/4 mile up the road) would have covered this, but apparently not. The systems or processes are different, so the issue of insurance came up. I explained the NHS arrangement with PSI and Kinderspital, but unfortunately the receptionist didn't seem to think this mattered! 20 minutes of discussion, all in german, with Toby thoroughly bored, tugging at my sleeve, moaning, wanting attention and needing the toilet...
Eventually they sent us through to see the doctor. He wasn't familiar with the financial side of things, but seemed he was able to organise for someone to phone the PSI and Kinderspital(obvious, but the receptionist wouldn't/couldn't do this...Computer says 'no'!!!). Unsurprisingly they confirmed everything was in order and we were rolling. A quick check of Toby's cornea, showed it to be ok still, but a prescription for some drops to help throughout the treatment, where a dry eye is likely.
Interstingly, the building was huge, spacious, with very few people around, hence a sense of calm and control in the hospital. The equipment in the consulting room all looked quite old/manual, but immacualte in terms of how it had obviously been cared for and used.
Back to the flat for a late lunch, and a sit down, then out on the bike for a quick bike ride. Called in at the pharmacy to collect the prescriptions, and then caught some fresh air down by the river. The highlight for Tobes though? Crossing the railway line. Well, a train might have been near after all!!
Got back to the flat to find we were locked out. The key just kept spinning in the lock! This was the door at the front of the complex, so luckily after buzzing another flat owner, they let us in. Slightly embarrassing, but slightly more worrying for when we go out tomorrow!
Tuesday 11 August 2009
Preparation for trip to Switzerland
It's only on reflection that the preparation side of this trip probably warrants a post of its own! Having spent so long focusing on getting NHS approval, and fundraising to cover our own costs, the small matter of actually arranging the trip felt like the smallest, easiest, and least important thing to do... until now. Of course everything that was needed had been planned in our heads months ago, just turning it into a physical reality was at the bottom of the list.
We knew taking our own car and driving to Switzerland would be the best option in terms of flexibility and keeping costs down. Only as time went on did I appreciate what else it would offer. The option of quickly and conveniently picking up family and friends from the airport who would come out to support. The possibility of us taking our bikes out with us. This would mean I could keep my own fitness up, even though I'd be with Toby 24-7, and without any childcare options. This was important to me, having kept my running going throughout the entire time since Toby's diagnosis, and my fitness at a reasonable level. And an important and effective controller of stress too. As any runner will tell you, you can't beat that post-run feeling.
Driving meant that, realistically, with two young children, we'd need to break the journey overnight. We chose the Channel Tunnel, to save time, rather than the ferry. Having planned the route, we then looked on Google Earth to see where was close by, but also where was quiet enough for us not to be concerned at the fact our car would be left packed up overnight and with bikes on the back. It turned out to be a town called Mettlach, on the german side of the Germany-Luxembourg border, very near to where we'd been on holiday last year.
Moneywise, Euros and Swiss Francs were then needed. As it happened, the town in Switzerland we'd be staying in is next to the german border so we'd need both currencies throughout the trip anyway.
Organising accommodation for Switzerland also was simple. The PSI (the acronym for the proton therapy treatment centre - Paul Scherrer Institut) had obviously done this before and booked us a flat (our request - hotel rooms and kids are just too high maintenance!) in a nearby town, called Bad Zurzach. Everything set...until we realised they'd booked a 2 room flat, not a 2 bedroomed flat. And of course being August, everything else was booked up. Again, given what else we'd been through, we knew we could either sort it out once out there, or live with being a bit cramped and use every opportunity to get out.
The two more challenging areas to organise were mobile phones and internet access. Both necessities for a trip like this, and both needing a considerable amount of time to research, given the complexity of offer. Not wanting to pay the rates at the accommodation (5 Francs per day - c. £3) we knew a mobile USB stick would be best for the internet. We just ran out of time to organise before leaving. Again, we could sort once there. A request to Virgin Mobile, to view the situation charitably was submitted, but a week in, with no response from them, it's irritatingly still on the to-do list.
Other things not to leave home without:
We knew taking our own car and driving to Switzerland would be the best option in terms of flexibility and keeping costs down. Only as time went on did I appreciate what else it would offer. The option of quickly and conveniently picking up family and friends from the airport who would come out to support. The possibility of us taking our bikes out with us. This would mean I could keep my own fitness up, even though I'd be with Toby 24-7, and without any childcare options. This was important to me, having kept my running going throughout the entire time since Toby's diagnosis, and my fitness at a reasonable level. And an important and effective controller of stress too. As any runner will tell you, you can't beat that post-run feeling.
Driving meant that, realistically, with two young children, we'd need to break the journey overnight. We chose the Channel Tunnel, to save time, rather than the ferry. Having planned the route, we then looked on Google Earth to see where was close by, but also where was quiet enough for us not to be concerned at the fact our car would be left packed up overnight and with bikes on the back. It turned out to be a town called Mettlach, on the german side of the Germany-Luxembourg border, very near to where we'd been on holiday last year.
Moneywise, Euros and Swiss Francs were then needed. As it happened, the town in Switzerland we'd be staying in is next to the german border so we'd need both currencies throughout the trip anyway.
Organising accommodation for Switzerland also was simple. The PSI (the acronym for the proton therapy treatment centre - Paul Scherrer Institut) had obviously done this before and booked us a flat (our request - hotel rooms and kids are just too high maintenance!) in a nearby town, called Bad Zurzach. Everything set...until we realised they'd booked a 2 room flat, not a 2 bedroomed flat. And of course being August, everything else was booked up. Again, given what else we'd been through, we knew we could either sort it out once out there, or live with being a bit cramped and use every opportunity to get out.
The two more challenging areas to organise were mobile phones and internet access. Both necessities for a trip like this, and both needing a considerable amount of time to research, given the complexity of offer. Not wanting to pay the rates at the accommodation (5 Francs per day - c. £3) we knew a mobile USB stick would be best for the internet. We just ran out of time to organise before leaving. Again, we could sort once there. A request to Virgin Mobile, to view the situation charitably was submitted, but a week in, with no response from them, it's irritatingly still on the to-do list.
Other things not to leave home without:
- sat nav with european coverage
- borrowed DVD players for the boys on a long journey (how will that work with Toby's travel sickness though??!!!)
- on that note...disposable sick bowls (courtesy of QMC!)
- Toby's medicines and medical paraphernalia
- EHIC - that's the new E111 form. Travel insurance (except Tobes who can't get it now) and breakdown cover (probably could change a flat, despite it being 15 years since being shown how, but all things considered, £16 premium was worth it in my book!)
- clothes for all seasons? Switzerland in summer, going into autumn, at low altitude but possibly high altitude for a few days if possible? nightmare...
- packed lunch for on the Channel Tunnel (so glamorous - eating in what feels like a car park!)
- Thomas (the Tank Engine of course!) in various forms..wooden toy, plastic toy, books, DVD...you name it.
oh and...passport.
Even Toby's oral chemotherapy, which should be refrigerated, was stored in the cool bag until we got there!
Pre-visit to Switzerland (2)
Tues 21 July 2009. Up bright and early for a 9 am appointment at the Children's Hospital (Kinderspital) in central Zurich. They will be the team who administer Toby's chemotherapy throughout our coming trip, which will be given alongside the proton therapy.
Finding the hospital was not as easy as we'd hoped. Sat nav guided us to the entrance, but parking is very limited. Parking meters look like they might be white bays, whereas resident permits look like they are blue. We opted for the safety of a car park.
After finding the Poliklinik entrance, we had to report to reception, where a member of staff very efficiently inputted our details, and then took us up to the oncology daycare dept. Very relaxed, and calm, with children all playing very nicely. Some great toys that Sam and Toby loved. A box for some snakes (!), a huge pedal car, and a marble ring thing (think Keppler as per yesterday's construction at th park!). We met a couple of female doctors and a nurse. All spoke very good English, although the nurse was happier to speak German with us. They explained what to do for each week, inlcuding the process for blood tests (drop in at the lab in the basement and by the time you reach the 2nd floor the results will be ready!), which number to dial, depending on whether it's office hours or not, and also, the number to phone just to let them know the timing of when we plan to come in on the Tuesdays for his chemo. Then it was time for a quick coffee in the hospital cafe, and the last time Toby could eat anthing before his anaesthetic that was due in the afternoon.
Then it was back to the hotel in Böttstein, for another visit to the energy place. This time we ventured into the exhibition (free entrance - we soon realised why) to learn the huge factory across the river Are was in fact a nuclear energy plant. Lots of bells and whistles to pull, twist, turn, bang and generally make a noise with, ensured 2 happy little boys, while we killed time waiting for Toby's appointment. Then finally we went back to the PSI for Toby's appointment, at which time, Kyle and Sam took a taxi to nearby Brugg, and then took a direct train back to the airport. Sam was very happy with 3 modes of transport in as many hours. Kyle had a course at work the following day which couldn't be rearranged so needed to be back for that.
Toby's appointment went very smoothly. Started later than planned, and we finally left the place at almost 7pm. Glad we decided to stay that night and come home the next day. While in the waiting room we noticed Toby seemed to have an ear infection. No signs of pain or him pulling at his ear, just some green gunge coming out! Simple in the context of everything else! Interesting how the Swiss approach anaesthetics differently to the British. I was allowed to stay in with him asleep for much longer. The team had a look in both his ears while he was under too, and suggested we call in at the hospital once back in the UK to get the infection cleared up. Also different to the UK was , once the ends of the central line were open, for the anaesthetic, you're not allowed to talk, or you should wear a mask. What was really amusing was the size and the colour of the central line afterwards. The two lines were the size of sausages from the wadding and then coated in bright yellow and bright blue taped covering!
The next morning it was back to the airport. No stress other than traffic on the motorway (that will we/won't we make it feeling...). All smooth, and on time. Called in at QMC on the way home (having picked Sam up from a friend who'd had him while Kyle was back at work) and after a 4 hour wait for antibiotics and drops, we made it back to Bingham.
Finding the hospital was not as easy as we'd hoped. Sat nav guided us to the entrance, but parking is very limited. Parking meters look like they might be white bays, whereas resident permits look like they are blue. We opted for the safety of a car park.
After finding the Poliklinik entrance, we had to report to reception, where a member of staff very efficiently inputted our details, and then took us up to the oncology daycare dept. Very relaxed, and calm, with children all playing very nicely. Some great toys that Sam and Toby loved. A box for some snakes (!), a huge pedal car, and a marble ring thing (think Keppler as per yesterday's construction at th park!). We met a couple of female doctors and a nurse. All spoke very good English, although the nurse was happier to speak German with us. They explained what to do for each week, inlcuding the process for blood tests (drop in at the lab in the basement and by the time you reach the 2nd floor the results will be ready!), which number to dial, depending on whether it's office hours or not, and also, the number to phone just to let them know the timing of when we plan to come in on the Tuesdays for his chemo. Then it was time for a quick coffee in the hospital cafe, and the last time Toby could eat anthing before his anaesthetic that was due in the afternoon.
Then it was back to the hotel in Böttstein, for another visit to the energy place. This time we ventured into the exhibition (free entrance - we soon realised why) to learn the huge factory across the river Are was in fact a nuclear energy plant. Lots of bells and whistles to pull, twist, turn, bang and generally make a noise with, ensured 2 happy little boys, while we killed time waiting for Toby's appointment. Then finally we went back to the PSI for Toby's appointment, at which time, Kyle and Sam took a taxi to nearby Brugg, and then took a direct train back to the airport. Sam was very happy with 3 modes of transport in as many hours. Kyle had a course at work the following day which couldn't be rearranged so needed to be back for that.
Toby's appointment went very smoothly. Started later than planned, and we finally left the place at almost 7pm. Glad we decided to stay that night and come home the next day. While in the waiting room we noticed Toby seemed to have an ear infection. No signs of pain or him pulling at his ear, just some green gunge coming out! Simple in the context of everything else! Interesting how the Swiss approach anaesthetics differently to the British. I was allowed to stay in with him asleep for much longer. The team had a look in both his ears while he was under too, and suggested we call in at the hospital once back in the UK to get the infection cleared up. Also different to the UK was , once the ends of the central line were open, for the anaesthetic, you're not allowed to talk, or you should wear a mask. What was really amusing was the size and the colour of the central line afterwards. The two lines were the size of sausages from the wadding and then coated in bright yellow and bright blue taped covering!
The next morning it was back to the airport. No stress other than traffic on the motorway (that will we/won't we make it feeling...). All smooth, and on time. Called in at QMC on the way home (having picked Sam up from a friend who'd had him while Kyle was back at work) and after a 4 hour wait for antibiotics and drops, we made it back to Bingham.
Pre-visit to Switzerland (1)
Mon 20th July 2009
Thought we´d note down some stuff about the pre-visit for those who are interested.We arrived at the treatment centre (Paul Scherrer Institut - PSI) about 20 miles north west of Zurich, promptly this morning. The radio-oncologist was very nice, spoke good English, but was happy that we could understand German too for some parts that he found difficult. So far any concerns about Swiss German being harder to understand than German, seem unfounded. In fact, the Swiss speak far slower than the Germans! Nevertheless some new vocab has been added to the memory bank. No medical terms or anything useful of course...among others, the word for ´ice cubes´, (Eiswürfel for anyone interested!) as Sam is determined he has to have this in any drink he is currently offered!
The doctor spent what felt like ages with us, and went through the background of how we noticed the mark under Toby´s eye, right through to the exact medication he is currently on. We then met the lead consultant and the anaesthetist, as well as seeing the rooms where Toby will have his daily anaesthetic for treatment and the recovery room.
Tomorrow morning is the visit to the ´Kinderspital´ (Children´s Hospital) in central Zurich, to meet the team for the continued oncology support and care while we are in Switzerland. In the afternoon, it is back to the Paul Scherrer Institut (PSI) for Toby to have a general anesthetic, in order for them to make a full body mould. This is to allow the correct positioning of Toby during his treatment sessions. They will also make a ´bite block´ for his mouth to also aid correct positioning. The procedure is likely to last 2-3 hours, and they will need to interbate, as Toby´s airways will likely be restricted while the bite block is being made.
A day of mixed emotions really, as this is something we´ve spent so long trying to secure, and yet remains something we´d rather not do. The list of potential side effects remains downright depressing. We quickly remind ourselves that this is better than it would have been...
Sam was thoroughly bored of being at the PSI within the 2 hours that we were there. We thought him accompanying us on this visit might be useful for him to realise it won´t be a holiday, and that seems to have done the trick! Toby came across as a totally normal active little boy - running around and more interested in whizzing round on a swivel chair than sitting still!
We did however manage to find a park this afternoon for them both, alongside a rather random Energy exhibition (totally empty, free entrance, right next to the hotel) where they could learn about solar panels among other things. Some construction that looked like a piece of artwork to me, also kept them intersted as they pinged the balls along some channels...something that Kyle assured me was demonstrating Keppler´s law (some physics thing!!).Boys are now fast asleep in bed as I sit here and write this, and Kyle is preparing for a course he´s on on when back at work on Wednesday.
p.s. Weather been beautiful. Sunny with little in the way of cloud, and about 25 degrees. Long may that continue!
Thought we´d note down some stuff about the pre-visit for those who are interested.We arrived at the treatment centre (Paul Scherrer Institut - PSI) about 20 miles north west of Zurich, promptly this morning. The radio-oncologist was very nice, spoke good English, but was happy that we could understand German too for some parts that he found difficult. So far any concerns about Swiss German being harder to understand than German, seem unfounded. In fact, the Swiss speak far slower than the Germans! Nevertheless some new vocab has been added to the memory bank. No medical terms or anything useful of course...among others, the word for ´ice cubes´, (Eiswürfel for anyone interested!) as Sam is determined he has to have this in any drink he is currently offered!
The doctor spent what felt like ages with us, and went through the background of how we noticed the mark under Toby´s eye, right through to the exact medication he is currently on. We then met the lead consultant and the anaesthetist, as well as seeing the rooms where Toby will have his daily anaesthetic for treatment and the recovery room.
Tomorrow morning is the visit to the ´Kinderspital´ (Children´s Hospital) in central Zurich, to meet the team for the continued oncology support and care while we are in Switzerland. In the afternoon, it is back to the Paul Scherrer Institut (PSI) for Toby to have a general anesthetic, in order for them to make a full body mould. This is to allow the correct positioning of Toby during his treatment sessions. They will also make a ´bite block´ for his mouth to also aid correct positioning. The procedure is likely to last 2-3 hours, and they will need to interbate, as Toby´s airways will likely be restricted while the bite block is being made.
A day of mixed emotions really, as this is something we´ve spent so long trying to secure, and yet remains something we´d rather not do. The list of potential side effects remains downright depressing. We quickly remind ourselves that this is better than it would have been...
Sam was thoroughly bored of being at the PSI within the 2 hours that we were there. We thought him accompanying us on this visit might be useful for him to realise it won´t be a holiday, and that seems to have done the trick! Toby came across as a totally normal active little boy - running around and more interested in whizzing round on a swivel chair than sitting still!
We did however manage to find a park this afternoon for them both, alongside a rather random Energy exhibition (totally empty, free entrance, right next to the hotel) where they could learn about solar panels among other things. Some construction that looked like a piece of artwork to me, also kept them intersted as they pinged the balls along some channels...something that Kyle assured me was demonstrating Keppler´s law (some physics thing!!).Boys are now fast asleep in bed as I sit here and write this, and Kyle is preparing for a course he´s on on when back at work on Wednesday.
p.s. Weather been beautiful. Sunny with little in the way of cloud, and about 25 degrees. Long may that continue!
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