Monday, 9 September 2019

On a plus note!

Fed up with listening to myself moaning and groaning (as I am sure you are!) I have decided to write this blog about the trip itself.  We are after all, going to be visiting two of the most beautiful places on earth and I am traveling with Craig who has only visited Australia and Vanuatu.  Seeing some of Europe with him albeit under difficult circumstances is still incredibly exciting.  I know it won’t feel like a holiday, far from it, but if we can grab a couple of days when we first arrive, before the big operation it would wonderful and very special.
We leave Brisbane on October 4th and have been gifted two business class tickets there and back, which in itself is very exciting for two people who are only used to short trips to Sydney or Melbourne going cattle class with our knees around our ears!  We are super grateful for these tickets as without them traveling this far would have been impossible for me with my back the way it is.  This means I can lie down for the journey and dose up on medication although I am still absolutely dreading how difficult the travel will be.  Traveling the shortest distances at the moment are problematic so I can’t say I am looking forward to this part of the trip!

We arrive in Zurich on 5th October at six in the morning. We have a car booked to take us to our accommodation which is right in the centre of Zurich, just minutes from the hospital.  We arrive a week before the operation as I have to have scans, medicals and tests in that first week. I have decided that I am going to look at the first week as some sort of bizarre honeymoon! They have told us we will have some time down time that first week and to sight see and get used to our surroundings.  While we may not be able to do much due to my current mobility issues, we will try our best to make the best of it. Tonight, the pair of us sat down and watched You Tube videos and we have completely fallen in love with Zurich.  I mean how many couples get to go to Europe for a honeymoon?!  I am just not going to think past week one and try to enjoy it, hopefully it will take my mind off the scary operation coming up the following week!

We have managed to find a delightful little attic (it has a lift before you ask!) it has a kitchen, bedroom and a balcony with what looks like a view. Accommodation in Zurich is horrendously expensive and this was the cheapest we could find within the area we needed to be. 

We will spend the first week here and then I will move into the hospital ‘The Pyramide’ for six days, which to be honest, looks more like a five-star hotel than a hospital.  Apparently, you can order food from a chef whenever you are hungry and not at set times. Sorry I know weird thing to tell you, I should be telling you about the first-class medical care and nursing staff but come on  a chef that makes you food whenever you want it?! How cool is that?  I just hope I am actually hungry! I have been speaking to someone who is there currently, they said it was wasted on them as they had no appetite for the first week!  Oh well!

There are so many beautiful things to see and do in Zurich and I know with my current mobility issues there won’t be much we can do but I am going to try!  I last went there as a child. I was probably about 10 or 11 years old. My Aunt Magie lives there (my Mum’s sister), so it will be nice to see her again, I think it’s been about 10 years since I last saw her!  My sister is also coming over from where she lives to support Craig for a few days which I know means a lot to him and obviously a great deal to me.  To have my big sister with us is just bloody awesome even if it’s just for the day.  I know Craig is nervous about me being in hospital and knowing Debs will be with him is really helping me.

The hospital is directly on Lake Zurich which looks utterly stunning and I can imagine the pair of us sitting by the water reading our books.  Coffee shops seems to be on every corner but at $7 a coffee I have a feeling we won’t be doing much coffee drinking!!  One place I would love to visit though is the thermal baths, although it will be cold by the time we arrive, around 7 to 10 degrees I think, the water is so hot is won’t matter.  I remember as a child going to one of these thermal baths and there was snow on the ground.  I have heard it’s incredibly therapeutic and healing for back problems.  Hopefully it will do Craig some good too.

There are plenty of free things to do in Zurich (thank goodness) and a place both of us would love to visit is ‘Chocolate World’, I mean come on, they have a chocolate world! (there goes the pre-op diet!!) Apparently, it has an amazing flowing wall of chocolate (2,000 litres to be precise). I only want to visit though so I can get the girls a small bar of Swiss chocolate each…yeah right!

Culturally there is also so much to do.  The Opera House just a short walk from where we are staying but at $300 a ticket it’s off the list unfortunately! Such a shame as one of my very favourite operas is playing ‘Cosi fan Tutte’.  Craig has never been to the Opera and I would love to share that experience with him, mind you sitting through theatre performances is not one of the easiest things to do these days.  Hopefully, after the operation I will be able to once again go to the theatre and enjoy performances, it’s something I miss terribly.

Strangely, one of things I am most excited about is introducing my husband to ‘Rosti’.  I make a version of it myself but it is not as good as the memory of having it as a child in Switzerland.  It’s basically a grated potato, fried in butter……(insert Homer Simpson noises).  My mouth actually waters at the thought of it!  It is literally my favourite food in the world. You used to be able to buy it from the supermarkets in a pouch, in a box, which you just had to tip into a pan and fry.  I am very much hoping that it still exists in that form too!!  We have a supermarket right opposite to where we are living.  I may be living on just potato if they do!  It will be too expensive to eat out, so I am glad we have a supermarket so close.

After the first week I will move to the hospital, where I will spend six nights away from my hubby but after that I will go back to our little love nest, although there won’t be much loving going on after a six hour back operation, in fact there won’t be much of anything going on!

On the 26th we catch a flight to Dusseldorf and then drive for an hour to Gelsenkirchen where I will check into to Medicos AufSchalke, which is a world-renowned rehabilitation centre.  It is actually where the professional sports people, even our NRL sends many of its injured players to get sports rehab here. So, watch out for some selfies post NRL finals!! 

The rehab centre is actually joined to the hotel where we are staying.  Everything is included here as it’s more or less in the middle of nowhere. All our meals, accommodation and rehab are included in the price which is pretty great.  Craig can even have a massage everyday which is rather lovely.

So, you see it’s not all doom and gloom, but it’s important to note we are not there on holiday, I think the back operation will be a huge reminder of that!  After week one it’s going to be the most grueling experience I have ever been through. It’s easy to get caught up in how miserable I am feeling or how terrified the pair of us feel about the operation.  Maybe thinking about this trip as an adventure we are embarking on is a good way of ignoring the fear and doing it anyway!

Back when things were easy!
After all, if this trip is successful it will completely change my life, it will give me my life back. I will be able to return to doing all the things I love.  Working in my role as a celebrant again pain free, going to the theatre, being in plays again, playing with my kids and doing things with them.  Doing simple stuff like cooking dinner, doing the washing and making my bed, it’s funny the things you miss when you can’t do them, you take so much stuff for granted in life.  I know that when I come out the other side of this, I will try my hardest to never do that again.
The future is bright, it really is, I just need to stay positive and know that I am in incredibly good hands and this is going to be a big success!

 Our Go Fund Me page is still going well but we are a long way off the huge target of $140,000 and I fear very much we will not make it to our goal.  People have been so generous, but I think we will need a miracle to reach our goal before October.  I just have to have a little faith and keep everything crossed!

If you would like to make a donation you can do so by going to our PAGE or if you can’t make a donation then perhaps you could share the page instead.  We have had some amazing donations from complete strangers which has been completely overwhelming at the same time as truly beautiful.  Thank you so much everyone!

Kate x

Saturday, 7 September 2019

Pain Relief Horror

I ran out of pain killers for 36 hours this week and it turned out to be a really interesting and painful experience.

It is very easy to get confused by just how much pain you’re in when you are taking pain medication four hourly. I am currently on quite strong morphine and codeine medications.  For some months now after a lot of trial and error my pain is really quite well controlled and I wonder some days if perhaps under all the pain medications that I was actually doing much better, as most days it has been vaguely manageable.

Needless to say, the last 36 hours have taught me otherwise.  Within 12 hours my pain levels shot up to 6 or 7 out of 10 and by the following night I was lying awake staring at the ceiling in a whole lot of miserable pain.  Every way I tried to move or lie caused pain and I gave up trying to get any sleep finally and just sat up and watched TV. 

It answered my question quite clearly; the pain medications are doing a pretty good job of keeping my pain under control and if I don’t take them, I’m in trouble.  It made me a bit depressed though, does that make any sense?  And angry too, really bloody angry. I have always tried to go through life thinking ‘Why not me’ rather than ‘Why me’ because the latter is just destructive and self-pitying.  And, frankly I would rather this was happening to me than anyone I know, because I wouldn’t wish it on even my worst enemy and believe me that’s saying something!  But this week has been another one of those tough ones and it’s been hard not to feel sorry for myself.  I have been taking these bloody pain killers for nine months now and  I am starting to worry about the effect they must be having on my poor liver and body but more importantly I am worrying about how I will ever wean off them.

I notice that not only am I in pain, when I don’t take painkillers, which of course is normal as I have a severe injury.  But more worryingly after about eight hours I start to feel like I am coming down with flu, my bones start to ache.  Then after 24 hours I really feel bloody awful and my body literally feels like it is screaming for the bloody things.  When I got home yesterday with my new script, I dutifully took my targin, endone and codeine as normal, had a long hot soak in the bath (which is a hilarious feat in itself!) and within an hour my body had returned to its ‘normal' self, with the aching flu feeling gone and the pain under control.   I HATE IT, I HATE that I have to take these horrible little pills just to get through each day.  

I was completely useless yesterday and in so much pain and discomfort I had to take to my bed.  Poor Craig, he must really love me that’s all I can say!!  I hate that I can’t get through a day without taking them and that the end of taking them is still a long way off.  I was speaking to a friend today; I call him a friend really as I have never met him he is more of an acquaintance really.  He went through a similar surgery in Switzerland six months ago and has only just started coming off the pain killers now.  It makes me pissed off and concerned that I could be on these tablets for at least another eight months!  What an earth is that doing to my poor battered body?? 

I have heard that CBD oil is supposed to be good, (the legal kind) perhaps I should give it a try!  I suppose I can’t really believe a couple of drops of oil would come close to helping with this constant debilitating pain.  Has anyone tried it?  It would be good to hear some personal stories about its effectiveness. 

Anyway, roll on October and getting all this fixed, only 26 days till lift off!   I don’t know whether I should be excited or terrified!!  The suitcases are out and dusted off and today we started packing bits and pieces. I have a feeling that 26 days is going to go really quickly!

Update on our Go Fund Me Page is amazing having hit our first real milestone of $25,000 which is just incredible and we are so grateful to everyone who has already donated or shared the page, thanks so much.

Monday, 2 September 2019

Back to Back

I was going to write about our trip today but my brain instead has been caught up thinking about the events of today.

A couple of weeks ago Craig and I traveled to Melbourne to get a standing MRI done for me.  Whilst we were there I persuaded Craig to get his lower back scanned.  He has been struggling with his back for a good few years now but over the last six months or so I have noticed him wincing when he bends over or tries to lift anything. I have also watched him struggling to get out of bed for the last few months. He has played down the pain he has been in because of me, I know that. 
I thought I would be relieved that he was finally getting a scan.  Hoping miraculously that it would be some minor problem that would eventually clear up by itself. I couldn't have been more wrong.  What's the expression? It never rains but it pours?

The scan showed extensive damage to his four lowest lumbar  discs.  Not only is one disc completely obliterated but there are another three discs that are protruding and pressing very heavily on his spinal canal.  I couldn't believe what I was looking at.   I tried not to cry standing talking to the doctor but I suddenly felt so overwhelmed and helpless. All these thoughts rushing through my head wondering how on earth we were going to cope plus the thought that he had been going through such a lot of pain without making any kind of fuss was heartbreaking, but is so Craig.  He is always so worried about me and how I am, that's just the way he is. went back to the Gold Coast feeling pretty depressed if I am honest, the flight home was very quiet.  Overwhelmed by guilt I feel just awful that I am about to have my back fixed and here Craig is just at the beginning of his journey, with all the horrible tests and injections I have had in front of him now.  I just wanted to take it all away for him, it made me so sad. Plus I started worrying how we would possibly get to Europe for my operation, how on earth would he cope??  I think we may have taken this sharing of all things a little to literally!

We talked about what to do.  We knew he couldn't have the operation he needs at the moment so how do we get him through the next six months until we can get him the treatment he needs?  We have a wonderful GP who is very easy to talk to and he suggested that we get Craig a steroid injection into the disc space, in the hope it would give him maybe six months relief from the pain and get us through the upcoming trip.

Today I had the 'fun' of being on the other side of things when Dad and I took Craig to south coast radiology (I can't drive, so bloody annoying) for what we thought would be just one injection as a pain block.  I tried to play down how uncomfortable and painful the procedure would be, so he wouldn't do a runner!  The nurse called me through after the injection said Craig looked rather pale and would I come through and sit with him.  I have decided it is far more difficult being the partner than the patient.  I just wanted to take it off him, do it for him, spare him the pain.  Poor man was a horrible grey colour and was cold and clammy. 

The nurse came in and told us that one injection will not be enough that he will need another three injections at different levels.  Craig looked like he might throw up instantly just at the thought of it.  I don't mean to moan because I know there are plenty of people in the world who have it much, much tougher than we do and we are so lucky in so many ways, I know that.  But today I am feeling really down, so miserable.  Miserable about what I am facing and miserable that my love is also in so much pain and there's nothing I can do to help him.  

I have put Craig to bed, and he is looking a little brighter than he was but I just want to cry.  I don't know how much more we can take.  We hobbled into the house leaning on each other for support and if it wasn't so sad it would be funny!  At some point surely life will turn the corner? 

I just hope beyond all hope that the operations I face in Zurich will be a huge success and that I can in time offer Craig the support he needs going forward and that it won't be long before we look back at this time as a moment of inconvenience in an otherwise perfect life with each other. 

Craig is far more philosophical than me, he has the ability to look forward and he has this way of just making everything alright, even when everything is far from being alright.  "It will pass", is what he says, "because everything always does".  He's a lot like my Dad really, he always tells me "not to worry about things because 95% of the things we worry about never happen".  

I have just lost my way today and the tears just won't stop coming but lets face it feeling sorry for yourself doesn't achieve anything!  But maybe just for today I might cut myself a break.

I just want to be able to get on with our lives.  The new business is so amazing and working as celebrants together is amazing.  I feel like we have finally discovered what we are supposed to do.  We have two funerals this week, one of which was this morning.  Watching Craig up there this morning I don't think I could have been any prouder of him and our work.  I just wish we could get past all this crap and get on with what we are supposed to be doing with our lives. I feel like our lives have purpose and I am so excited to be on this path with Craig. keep asking how they can help us, there really is only one way to help us right now and that's to help me get to Zurich for this operation.  We have never needed anyone's help as much as we need peoples help right now.  I know people think that giving money seems impersonal or they worry that the few dollars they can spare won't make a difference, but it does, every cent helps and we are incredibly grateful for all the donations and shares our story has received.   We have an incredibly long way to go but it's been an amazing week and I can't thank you all for all your kindness and generosity.