Life List… Living It…

It’s been a week of two halves. We left last Wednesday for our road trip in France. The reason for our trip was initially a charity auction prize tour of Cognac. Pete decided that we should make it arriving holiday and makes stops along the way.

This got us thinking about where to stay. In 2012 we did something similar starting at the Champagne region and driving down the middle of France loving every wine region and product known to each town.

Our first stop I think was the most exciting for me. We drove three hours from the Eurotunnel and arrived at Giverny, the home and garden of Claude Monet. I was so excited. I studied art a million years ago and I love Monet’s work. I couldn’t believe I could actually go to his garden where he painted many of his famous pictures including the a waterlilies series.thumbnail_IMG_0821

I had never even considered going there and actually didn’t know you could. Even though the weather wasn’t spectacular it didn’t matter. The gardens were stunning and the house was so interesting to see where he lived and worked. I even got to walk on the bridge that is featured in his paintings. What a highlight! This got me thinking about the term Bucket list. I don’t have a Bucket list. As I pointed out I didn’t even know I wanted to go to Claude Monet’s house but it is definitely up there as one of the memorable things I’ve  have ever done. But I hate the term Bucket list. Kick the bucket… a stupid statement. We are all going to die. Why do we need a list of things to do before we die? Isn’t that called living, having a life? So Pete and I decided if we have to call it anything then why not call it a life list. Claude Monet’s house and garden have been ticked off my life list.Whoop!

Next stop was Angers, followed by our destination to Cognac. On the way we detoured to La Rochelle. It made me smile as the books we learnt  French from at school always mentioned La Rochelle. What a lovely place it is. We had luck on our side this day as the sun came out and we decided to have a traditional lunch with some wine by the marina. Absolutely stunning and we will be going back there.13226728_10153628725007061_823874784494148156_n

Finally arriving in Cognac the weather changed to being very muggy and humid. No sun but plenty of mosquitoes! Cognac was another really interesting place. Nothing there but Cognac houses. We visited Remy Martin and to be honest I don’t drink Cognac so thought it would be terribly boring however, the guide was fantastic and we learnt and tasted and had a complete blast. My high point was having the tastiest canapés created by the president’s chef to have with each cognac! Divine….

Then the trip changes somewhat. Due to my recent results we decided that we would continue onto Germany to Frankfurt to have TACE with Prof Vogl. We didn’t plan it as well as we should and completely underestimated how long it would take, as the next leg of the journey took 6 hours to get to Dijon for our overnight stay. We have been to Dijon before on our first trip in 2012. We felt compelled to find the church again and rub the little owl that is carved on the corner of the building. It’s been rubbed so much it doesn’t look like an owl but as we had rubbed it four years ago and I am still we felt that maybe it could give me some more luck. I’ll take whatever I can at this stage.

The journey no matter how long would be fine if the roads were not spraying so much water. Pete was a hero driving in such difficult conditions but it certainly took its toll on us. Tired, grumpy and sore eyes…..and that was just me! Haha!thumbnail_IMG_0803

We stayed at our usual hotel in Frankfurt which is now like home. The morning arrived at we walked to the hospital. I wasn’t looking forward to it but I was so hopeful that that this could stop the growth and my bloody cough!

I arrived at 8am and waited until 10.30am. Now I know I am a stickler for moaning about how us survivors are treated and although this is a moan it does have a happy ending. At 10.30am I went back into the secretary’s office where on looking at me she nearly choked. I asked if she had forgotten me. A nurse arrived and said I wasn’t on her list. Hmmmmmm… By now I was a little emotional and was wondering, ‘why is this happening to me?’ Then I was taken through for the procedure. I was introduced to a lovely Italian lady who spoke perfect English and said she would be performing the procedure with Prof Vogl. She gave me injections and put catheters in my arm and I didn’t even feel it going in! How did she do that? She’s a magician! Prof came in and we had small talk as usual and then they whispered as they did the treatment. I looked away as much as possible.

The staff there that day were lovely. One assisting nurse appeared with a little vial in her hand and said, ‘Do you want some more pain relief?’ Oh well go on then…

When I was wheeled out the nurse rubbed my head and was so very sweet. And then I had the best ‘cocktail’ ever….. I was away with the fairies. Recovery time is to lay flat for three hours. This kills me as I usually need the toilet and cannot go but the ‘cocktail’ of drugs knocked me out. I loved it. I wanted more!

The Italian doctor told me that last time I had TACE I had it through my femoral artery and then the tube went up into my aorta and the chemo drugs were dispensed there giving an overall treatment to the area. This time she said they went through a vein and then went directly to the tumours. Here she gave me a punch of chemo drugs. So less dosage but higher concentration. It should give a ‘boom’ effect. Oh please, please, please let it work!

This was the nicest experience I have had mainly due to being spoken to and having things explained. It’s not hard is it?

On speaking to Vogl later he said that the tumour I had ablated is showing necrosis and takes time to fully die. The tumours that are growing now he says are new activity including the lymph nodes. I asked how quickly the cough should go, he said ten days. That’s bold. I said ok, if it’s not gone by then I will email him. And he smiled.

The next morning we got up and drove all the way to the Eurotunnel. Maybe because we had driven so much we found it tedious and were so tired. The French fuel strikes didn’t stop us. We didn’t experience any issues with fuel, thankfully. But getting home was great!

At times during our trip tempers flared mainly due to the tricky conditions and how tired we had become. Simple things weren’t working; for example in one hotel they had decided being uber trendy was the way to go. But I couldn’t find on/off switches, the TV was a huge iPhone  which was so shiny it reflected my image and I couldn’t see a thing and the coffee machine wouldn’t turn off. They hadn’t provided any room instructions- I mean should we need room instructions?! Needless to say I went to bed highly stressed and shaking (This is something my body does when I am stressed) Unable to sleep I laid there worrying about my current situation. I had some quiet tears and then my thoughts changed. I became very inspired and excited about my plan of action and what I could do to try and be more proactive. Maybe now is the time to make changes to supplements etc.… I woke up feeling raring to go. This happened a few times whilst away and I so pleased my head had decided it was out of my control but it wasn’t all doom and gloom. I have done it before and I can do it again. I think I am so shaken by the progression (as if there is one) this time because I am experiencing symptoms. Lying on my right side makes it hard to breath. My cough is upsetting for everyone around me. They all think I am contagious! I am worried that I have got mild anaemia due to having a chronic illness. But reassess Claire! It’s not that bad. It could be worse and I have had worse.

So yesterday apart from drowning in a mammoth pile of washing, I started emailing and calling everyone that was in my head during those dark nights. I contacted all the doctors, I tried calling a doctor in Germany who provides infrared laser therapy that Dr Nesselhut wants me to go to  combine his dc therapy with. The doctor is away until next week. I mailed Prof Dalgliesh to see what his thoughts were on obtaining drugs in the UK. Bloody expensive or not available yet.

He suggested that on one report I sent him, that the drugs could be obtained via the NHS and he has suggested I contact my onc, Prof Harris to see if we could get them on compassionate reasons as they do not follow the normal guidelines.

I have been communicating with virtual friends and survivors about their treatment plans and how they are doing.

So that’s where I currently am. I don’t feel overly chemo’d. The cough is driving me to distraction and I had hoped it was going to immediately improve. I feel tired and like a space cadet currently and am making decisions on what to do. I think I am going to start using more mushroom powders to support my bloods and really try nutritionally to gain as much energy and hopefully support my system so that I don’t take even more of a dip.

Long term treatments really do have an effect on one’s body and as I am getting older things aren’t the same any more.

So far we do not have an appointment to return to Nesselhut for dc therapy. We firmly believe that it supports the system but right now I want results to know that the tumours are regressing and not progressing. It’s scary and one feels like time is flying by but I have to keep calm and know I am doing everything possible. There are always options. I don’t know why but this time I feel more worried than before. It may have something to do with hearing more of my fellow survivors, people who I thought were nailing it, have died. It never gets easier. And also to read that Kris from Coppafeel is also having recurrences. It just frightens me.

On reading this it’s a real mish mash of emotions. Life isn’t easy for anyone but when you have a head like mine it’s a nightmare. I feel so much gratitude on a daily basis. I feel love all the time. People are so kind and thoughtful and I get so many messages from those supporting me even though they are going through hell. I feel fretful when I am having niggly symptoms like headaches, visuals from migraines, stomach ache, sickness… well anything. But they can all be gone with a blink of an eye. I can’t help but worry about dying and not being here anymore. I want to stop thinking. I want to just feel happiness and love.

I want to exercise again like I was before we went away but really need to honour my body and the way it feels right now. My friend said to me, you are Claire, not Cancer’ she’s right, I know…..

So that is what I am going to focus on. Living, loving, thriving, surviving and being eternally grateful for what I do have and not what I don’t. Over and out! XX

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