Big Nose!

Hello readers.

This is just a quick post to clear up a slight misunderstanding with one or two of my squeamish loved ones. The MRI picture of the brain on an earlier post is not my brain!

hellie-blogWhat you are looking at on the post ‘Something Amazing’ is an MRI image of the brain courtesy of the internet. It’s definitely not mine: I can tell you how I know… My nose is much bigger than the one on that picture! Thanks Dad! The fact that I inherited your prominent nose bones has come in very handy in recent months x

Anyway, my sister, who is doing all the tricky stuff on this blog, such as posting huge photos of Spock and Dr Fritz (sorry Fritz, it wasn’t meant to be that big a picture of you – we couldn’t shrink you), said she was looking for a picture of Einstein’s brain, as it might look bigger than mine. Cheeky!dad

I am including a picture of our lovely Dad with his lovely noble nose. Spot the similarity? We know that his (and Mum’s) hotline to Heaven has helped us all in recent months.

So, sorry if you experienced an ‘Ugh’ moment when reading the earlier post. Rest assured, the pictures of my brain are safely confidential in the medical world’s files and you won’t be seeing them. And if you are soon to be, or have been a patient having MRI or CT scans, your medical team won’t beetle off at the first opportunity to post your images out to the virtual world…even if you are the next Einstein!

Hellie x

A Cautionary Tale…

 

I have always been a bit of a worrier. I try not to be but somehow I just can’t get a handle on some things.

Since going through recent traumatic events, I’ve become even more anxious about some minor stuff as well as the big stuff, and am trying even harder to get a handle on it… with some success, I have to add. But, herein lies a cautionary tale for all women (and indeed men, but you’ll see why particularly women) who are prone to, perhaps, being overly anxious and overreacting to an otherwise mildly stressful situation…

On Friday after school, my son, Patrick, asked if he could go to the barbers, Araz’s, on the crescent at St Anne’s (great barbershop). It was a bit chilly, but sunny, and off we went together on our bikes a mile or so down the road.

As we parked our bikes and began locking them up, two rather drowsy looking wasps hovered near us. Usually I’m calm with these creatures, knowing that the worst thing to do is to make them angry by swatting them away. So…gripped by fear, I started to make them angry by swatting them away. Hoping to protect my unflustered child from being stung, I sent Patrick into the barbers and regained my composure – until I heard a buzzing in my bicycle helmet, still on my head at this point, at which moment I screamed as loud as I could and panicked!wasp2

In my panic, I tried to take my fleecy top off, still wearing my bike helmet, and then had then to deal with the farcical fallout from that. As I threw my helmet and fleece down on the pavement, I swore loudly, danced around a bit more and screeched as I felt two sharp stings just underneath my T-shirt at the back of my neck. A very kind, elderly lady stopped and put her little shopper bag on the floor. ‘Are you alright, dear?’ As I pulled my T-shirt off over my head to reveal a bright red bra (my biggest sister told me a red one is as good as a nude bra, if not better, for not showing through girls!) she looked rather astonished, whilst I tried to explain in gasps and shrieks that I had a wasp, maybe two, down the back of my T-shirt.

So, there I stood in my cycling shorts, trainers and red bra, on a busy St Anne’s crescent, whilst the lovely lady peered at my back and soothed my nerves with ‘ooh dears’ and ‘ahhs’. Thankfully, Araz’s huge glass window was two doors away, and my son, along with about 8 other young lads, although he heard some yelps and shrieks, managed to avoid the spectacle of his mum ‘dancing’ on the pavement in her red bra

So, my cautions are these; firstly, if you’ve had something happen in your life which has left you more predisposed to anxiety and fear, try to remain calm and rational when faced with something that, before all that happened to you, you would have seen as mild threat (verbalising it is good, to yourself…Ok, here are two wasps, my son is right, everything will be ok as long as you don’t swat them and make them angry); secondly, listen to the voices of reason that might be around you (in this case, my son. Thank you Patrick x); and thirdly, if you’re going to reveal yourself down to your underwear on a busy main thoroughfare, at least make sure you’re wearing a lovely lacy, red bra, instead of the rather ordinary (albeit red) one, resembling a piece of scaffolding, that I was wearing!

Hellie x

Something Amazing..!

 

I saw something amazing at the PSI Centre for Proton Beam Therapy. I meant to include it earlier in the blog, but forgot…

Hundreds of pictures of the entire contents of my head. The MRI scan I had to have in Villigen took 1mm slices (in images only, you understand…) of right from the top notch on my cranium down to the intricate depths of my brain stem. Most MRI scanners take a picture every 3mm and everything does sort of look a bit fuzzy round the edges (not just on my brain, you understand…Spock’s brain would too!). But these images were truly amazing. Every detail of my inner workings/structures of my head were visible, clear as a bell. Mike was seeing them too, astounded, and so has now seen parts of me no other person will ever see – well, I guess apart from large numbers of scientists.

Dr Fritz did compliment me on a beautiful brain (he probably says that to all the girls) so that will be a good line to hold up my sleeve next time my rationale is questioned, hey?!*

He also complimented the surgeons who did my operations, at Royal Preston hospital, on what a fantastic job they had done. Dr Fritz also, I think, would like to shake the hand of my Orthoptist at Blackpool Victoria hospital, who had the good judgement to send me as quickly as she could for a brain scan. She’s brill. I am so fortunate that I have had these wonderful experts on my doorstep at Preston and Blackpool with such clever hands, eyes and judgement. Something Amazing! Thank you.

Well, just thought I’d share those thoughts…

Hellie x

 

Home for a while..!

 

I have been home since Saturday evening (17th September 2016) and now have almost three weeks to recover before returning to Zurich.

It’s all reassuringly usual here, as of course it should be. Grandma Marion did a wonderful job of moving in and looking after the children;  Flo and Patrick were absolute stars. Thank you, Grandma! I’m so proud of my two for being ‘ace’. Thank you, too, to friends and neighbours who have been a great support this past week.

Before we left Zurich, Mike and I had chance to drive over the border into Germany to the Black Forest. It’s beautiful, and on such a large scale. The lakes are vast and the expanses of trees go on forever it would seem.

I’ll write more on this blog when I go out for my actual treatment in October, so look out for that. In the meantime, I’ll write a “handy hints” page for anyone who might be going out to Villigen for Proton Beam Therapy, so you have a few helpful pointers. Please use the ‘Contact’ tab on the Menu if you would like any further details about any topics you read about. This will be emailed to my sister, Mary, who has set up the Blog. She is also a doctor and will be able to give some advice and signpost you to expert sources of information.

I want to end now with a word about my husband, Mike. I want to thank him for making last week such a positive, uplifting week. He quietly researched all angles of our trip. We were so much better informed and prepared to have a lovely few days together as a result, despite the weirdness of some of it.

Thank you Mike, with every particle x u49780p_01_proton-plush-particle

H x

Simulation Day at the proton beam therapy centre

 

Today has been the day for simulation, as it is called, at the proton beam therapy centre. I felt anxious about finding the building in a huge complex of weird and wonderful buildings, the strangest of which is an absolutely enormous circular particle accelerator which looks like an abandoned space ship.spock-uhura ‘Maybe Dr. Spock is here after all,’ flashed through my mind… We actually found the centre itself easily thanks to a good map and reference for the building and Mike’s sensible approach as to my illogical one. It is painted a deep green colour and looks reassuringly normal.

As soon as I walked in, some of my anxiety dissolved. I was met by two lovely secretaries, one of whom I already knew by email and phone. If you are coming here for treatment, you will be sent a contact, ahead of your treatment, who will give you all the details you need or answer any questions etc you have. It has been that way right from the point I found out I had been accepted for this therapy.

My own NHS trust in the UK, through a fantastic girl called Tracey, organised all arrangements for me, from a very first email telling me her name, to organising all practical matters for both this simulation visit and my treatment period in October and November.

The simulation today consisted of an MRI scan, a CT scan, and the making of various tekkie devices to keep my head absolutely completely still when I have the PBT. I even have my own pillow, set hard to the very shape of my head. In all honesty some of it was rather surreal as there was quite a bit of tweaking of measurements etc. But all of it was absolutely ok, because I had the most amazing doctor explain everything to me, clearly, sensitively and accurately, for every part of the day – Dr Fritz Murray. He is reassuring and factual, warm and scientific… and an expert. And everyone I came into contact with during the day there was kind and so clever at their tasks. I know that I am in the best place in the world to receive proton beam therapy, with the best doctors, medical team and scientists. I couldn’t be in safer hands.

There are books of testimonies and thank yous and stories in the reception area at the centre. I could only read one when I first arrived just before 9, and then I started blubbing (again), and couldn’t focus. Then, after I had listened to Dr Murray, asked him questions and looked at drawings (doctors seem to be really good at drawing accurate little diagrams to show you things, much better than their handwriting!) and images, and learned more about my situation and my treatment, I picked up one of the books again. It was full of stories of hope and healing, faith and admiration, and of thanks to the teams making this therapy possible.

I am humbled by those stories and am full of the joy of hope and understanding that when I leave Switzerland again in late November, I’ll be coming home healed. I cried again, at pictures of children’s smiling faces whose lives have now become so much better, after proton beam therapy has sustained their precious lives. Tears of joy for them and for me.

I’ll be coming back here on October 8th for my treatment to start shortly after, so this blog might go a bit quiet for a while. A thousand thousand thanks to all, for everything x

 

Will I meet Spock?

Hi everybody!

Today (Wednesday) has been a lovely sunny day and an opportunity to explore a little ahead of tomorrow’s appointments at the PSI. So we caught a train to Zurich (very easy and quick) and spent the day there.

The main city centre ramble leads right to the northern tip of the Zurichsee, a vast lake. After climbing a really steep hill, we could look out over the city and the lake, and it was like looking out over the ocean. zurichseeBeautiful, breath-taking (in more ways than one – the path was steep!) Our reward to ourselves –  pistachio and chocolate ice cream!

It was grounding to have the chance to orientate ourselves in a place which is new to us, in a situation new to us. For anyone else who is facing the prospect of coming to Zurich as an NHS patient, there are things to be done in a little bit of spare time which will help you to perhaps contextualise the experience to some degree.

I spent some of yesterday feeling overwhelmed by the fact that the centre for proton beam therapy is part of a nuclear power research plant. I had visions of doctors with ‘Spock ears’ peering at me and nurses in white caps and carrying clip-boards. Watch this space…If Uhuru walks in, I’ll be off!

Being more realistic, as Mike assures me, it will be just like going to any other hospital appointment. It will be scan(s), simulation, meeting a medical team, and preparation for the proton beam therapy in a few weeks. I’ll let you know how it goes tomorrow.

Love to all and thank you for kind loving comments from my family x

My First Glimpse of Paul Scherrer Institute

Today I arrived in Zurich with my husband Michael. The flight went without hitch (slight car parking issue – always check your options!) and we are now at a ‘Schloss…’(hotel, won’t be getting schlossed!) near the Proton Beam Therapy institute, in Villigen, about an hour’s drive from Zurich airport.

We passed the Paul Scherrer Institute en route and it is, from what I could see, part of a large collection of industrial looking buildings. Daunting on first sight, but like any major centre for Science and Technology would be I suppose.

We’ve walked along a wooded riverbank this afternoon. There is a big hydro-electric power plant and an even bigger nuclear power plant across the river…against a back drop of mountains and grape terraces. Slightly weird contrast. Right next to the hotel is the PSI visitor centre which is all about nuclear energy.

All is well and shortly we’re going in search of food and to get our bearings. So much love and kisses to my children, my family and my friends. Hello too to followers X