Tempers flare and frustration sets in when we should be able to get onto trials and "experimental" or non-accepted drugs in the UK that we are otherwise "allowed" to pay for and receive. That's what's happened to Pete right now. Probably at the end of his tether having to spend over a week with me and not being able to give his business his undivided attention too. Anyone that knows him, knows how 'passionate' he can get. I don't blame him but it can be upsetting to see him feeling like that.
We left home over a week ago for treatment but also to spend time together over the Easter break. To have some special time and to make treatment trips more fun and memorable. That’s what he does. He tries so hard to make things good, fun, loving and most of all special. He spends all his time thinking of others, putting their needs first. The thing is, things never really go to plan.
We travelled through France to Switzerland and then arrived in Austria. Pete had worked out that we could slip in a ski break between appointments, he had meticulously planned everything. This time of year you hope/expect to have sunshine and those gorgeous blue sky days skiing. Our thoughts were, ‘Will there be any snow left?’ That would be sad if there wasn't. Hahahahahaha. How funny that thought is now. We arrived and a storm set in. The resort had over four metres of snow in a few days! It was so bad some days we actually couldn't ski and when the sun finally did come out they decided not to let us up the mountain for fear of avalanches!
How frustrating and disappointing life can be at times, more so for someone like my Pete. He just wants everything to be perfect. He just wants people, and especially me to be happy. (I am by the way, no matter what he does.)We then had a 7 hour trip (stopover in Munich) and are now in Germany and I am having treatment. The weather is better now, but it snowed all the way here. We hope that it stays dry for our long drive home to ‘The Shire’ tomorrow afternoon (11 hours). I don't hold out much hope though....
Pete's frustration this morning is due to the screwed up medical society. Where to start. The waste of money on treatments that are proven not to work, the administrational shambles, the obvious control of the Pharma, it goes on and on and people are dying. We are not talking about gastric bands and boob adjustments. Pete was in tears over an Alzheimer sufferer this morning, diabetes, heart disease and of course cancer - these are challenges that we are facing at the speed of a striking sea slug and still people are dying.
We have been talking over new developments such as targeted DC therapy, Nivolumab and Ipilimumab and its so frustrating when researching to find they have been trialling these drugs and treatments for nearly four years. The sticking point of them is the cost NOT the efficacy.
Isn't is sick that we live in a world where they hold cancer patients (and other terminally ill) to ransom? I'm being told once again that I may not be able to get onto a trial because my recent scans show that I have had improvement on the treatments that I have had. So because I paid for TACE, saving the NHS around £100,000.00 in treatment costs and it has been working, they could decline me from getting on their trial. BUT I CAN HAVE IT IF I PAY FOR IT! This to me makes no sense.
I have been having treatment abroad, paying for it, and because that shows it is working, they would turn me down on an NHS trial in the UK. It's so short sighted. Can't they see if the trial works on me, with the other treatments I have been paying for, then I am not only helping myself but helping the Company (In this case Bristol Squibb Meyers) and other patients get a treatment that could be the cure, the answer, or at the very least the treatment that will be a winner for most?!
No point on dwelling on it... but so corrupt, mismanaged and such hindrance in progressing for a cure. This just reminds me how hard all of this is on our loved ones, our nearest and dearest. I'm so lucky to have someone who cares so much, but no one really realises how hard it is for them.
Pete has devoted his life to me, his family and friends and his business, with all the responsibility that brings. When he is there, he works such long hours and never mentions his home life or troubles, he says his job is to be "positive". That's what people see.
What they don't see are the sleepless nights, the worry, the guilt at not being there whilst taking me, his sick wife, for treatment once again. Social media is amazing but it does only show the good times. People have even said to Pete "have a nice holiday" and think we are living it up abroad. He just smiles and nods and continues to post himself smiling in 'happy times' photos.
But money doesn't grow on trees. Pete has to be an innovator, motivator and different in outlook, always thinking of ways to grow and differentiate the business, but most of all ensuring that it doesn't fail. He has many staff to care for and they have their lives. It's a constant juggling act.
But we still try to maintain a normal life. As normal as it can be. We both long to be at home. To have routine. To be part of things we have built up for years. We don't want things to slip through our fingers after all the hard work we have put into it. It's hard keeping abreast of everything and heartbreaking when things don't go to plan.
If I could say one thing to my younger self or close friends and of course you as you are reading this, it would be - Never take your lives for granted.
Being at home can be monotonous but there is nothing like home when you are forced to be away so much. Right now I'm sat waiting for treatment. I have no idea if it's working, but I do know it takes a lot of time, money and effort for me to even be here. This is something I'm eternally grateful for and I will never take for granted either.
When you are bored, tired and wish your life was more exciting... think of all the survivors out there and 'put the shoe on the other foot'. I only hope everyone has at least one 'Pete' (my Bear) in their life. It would make your life better in every way.... My kuschelige Eheman.
P.S. Pete and I have laughed so much on this trip. It’s not all doom and gloom as I always say…
Light and Love