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

So called ‘bad news’…..

So much happens in a few weeks and it all seems such a distant memory.

The beginning of May for us was so lovely. We spent the weekend with my Ma on the south coast. Kitted out in walking gear Bear had planned us a lovely 5 mile ‘walk’. Hahahahahahaha. I even laugh at it being called a walk. It was beautiful. The weather was on our side most of the time and we had really good fun. All except the hills or mountains, I should call them! Oh my goodness. Such steep hills with crazy deep steps going down and scarily high steps going up the other side. Not once but many! Now I was excited to be doing a nice 5 mile walk. I always expect them to be undulating but this was different gravy. I whined, moaned and gasped my way down and up. My Ma at 67 years old completely fit and didn’t have hardly any trouble at all. Pete, whose heart rate didn’t exceed gentle exercise had to practically coax me up the hills. My heart was going to burst. My lungs were struggling… but I did it. I cried and then I smiled and felt good. It must have done me some good right?

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The rest of the weekend was lovely, with lots of laughs, eating Sunday brunch by the beach and then I decided to roller skate along the esplanade. I loved skating as a kid and I thought to myself I want to do that again. How hard can it be? Well it turns out, I needed some practice. As I screamed and wobbled and grabbed hold of walls and lamp posts I realised I must have been pretty good when I was young. After about ten minutes I got the gist of it and giggled and laughed like a child whilst getting a little out of breath. So good, you really should try it.

Since then we have had some wonderful weather. It has actually felt like summer. A bit too soon but very welcome. Pete and I were lucky last weekend not to have any plans. So after our gardening chores we sunbathed on our loungers for the whole of Sunday. It was like being abroad. We felt relaxed and basked in the heat getting a lovely tan. A tan makes you feel a bit better and makes any wobbly bits look better than when they were white! I just thought to myself life isn’t bad right now.

Other than that I have been continuing living my usual daily life. Trying to stay fit and healthy, help Bear where I can and generally trying to stay stress free.

I had my CT and MRI scan at the end of April which in itself should’ve been ok but it turns out that I am getting more sensitive to the contrast they inject. No matter what way we tried I couldn’t help but be sick. They think I have become allergic to it. They have to give me scans some other way I guess. The sickness didn’t last long and I was back home.

The results were given to me at Prof Harris’ clinic on Tuesday this week. Pete and I were there together. Gut feeling was everything should be ok but the cough was a telling sign of possibly something more sinister. Prof started with, ‘there is good news and some bad’. That wiped the smile off my face.

He had bought a student doctor in with him so wasn’t quite the normal ’Prof’ we have come to love. He was perhaps a bit more official and I have to say a bit more doom and gloom than usual.

The good news was that there has been no change in my brain. That means there is still that little tiny blot that looks like scar tissue. No other tumours. There are no new tumours anywhere else. There was no mention of my left lung. The spinal tumours are still sclerotic so causing no problems.

Then the so called ‘bad’ news. The tumour that had been ablated in January had a hole in the middle and looked like it was dying. It is slightly bigger now and the hole in the middle has hardened but the whole tumour is a squishy mass. There are also small tumours in my lymph nodes which were previously subcentrimetre are now about 1.8mm. The problem with them is that one is pressing across my airway causing disruption and the right upper part of my lung has in fact collapsed. Prof proceeded to say that I really ought to get onto chemo, Eribulin, to give it a good going over. He said it has been giving very positive results and one lady said she wanted to go back on it as it had given such remission.

I have to admit, I wasn’t very happy. It actually really scared me. I think because the thought of it affecting my breathing. I know I have another lung but I want this one to get better. The tumour has increased in size slightly to about 5.5cm.

We left having signed paperwork to start Eribulin but on the pretence that I can let the Prof know if I want to proceed or not or in fact head back to Germany.

Bear walked me back to my car and I had a few tears. He told me it wasn’t that bad and we compared that report to the one I got earlier this year. There really hasn’t been that much change but where there has been some nasties growing and causing symptoms we simply have to get to have some serious treatment. I believe Bear and I completely understand. It’s not actually that bad. It can still be reduced. But I got the feeling that I was being told I had done well for the past four years, but now it’s time to have the last go at keeping it at bay. That really scared me. All my fears of dying came flooding back. I simply don’t want to get ill and die. Things are going so well and I really love life and I really love my Bear and my family and my friends and my cyber friends. The support has been just amazing.

I got home whilst Pete went back to work and I emailed the results to all doctors concerned. So far I have still had no reply from Dr Nesselhuts clinic. But Prof Vogl replied immediately. He was more positive. He said there is necrosis in where he treated but there is still some activity. He endorsed us to have Eribulin but I asked if it would be better to have TACE first. It is up to me.

Now I know this sounds terribly stupid because life is life. But I don’t want to have Eribulin right now. I do in one sense, because it is free and it is every three weeks and it is close to home. I don’t because it means losing all my hair again, plus it’s systemic so makes every part of me feel rough. Now I know it is only hair. And if it was my only option then of course. Duh! But if Vogls TACE works and shrinks the tumours again then I can go for Eribulin later. You never know Eribulin could be the drug that really helps me.

So with all that in mind we have booked a visit to Frankfurt in a week or so.

Of course I am gutted. I really hope for a more normal life. And I really want to be ‘free’. And I feel so terrible for Pete. He doesn’t need this pressure and worry either. It’s that reminder all over again. Don’t get too comfortable, it’s not over yet. And quite possibly never will be.

I really felt quite discombobulated by the way Prof Harris kind of had a very negative way of telling me the ‘bad’ news, which we think isn’t really bad news. But this leads me to my friend who having conquered stage four lung cancer all by supplements and the odd drug and has been clear now for one year, found some lumps come up around his collar bone. Of course the immediate thought is cancer and he went to see his doc, who on feeling the lumps immediately blurted, ‘yes that’s cancer’. He hadn’t had a scan or anything. So he had a scan and waited patiently as we do. And during that time he had the most extreme anxiety. Well you can imagine and of course probably know what it feels like.

He returned for his results dreading what he would hear only to find that he is still cancer free and the lumps are simply a mystery. What is wrong with doctors? They revel on telling bad news and scaring the shit out of people.

Well not to bring it down and have a good old moan about the rights and wrongs, today I am back on track.

On Tuesday when I got the results I had a yoga class to attend in the afternoon. In my sad mood I really didn’t want to go but I did and held back tears during times when my eyes were closed. I came home feeling better and gradually have been feeling better by the day. I have this cough that scares me now I know what it is doing. Knowledge can be bad for us at times. But I feel relieved that I have made plans to get to Germany to have TACE with Prof Vogl.

I have to keep reminding myself that ‘ No one said life was going to be easy’ and I know how much of a lucky girl I am in this life, but I just wish they would hurry up and find us triple negative breast cancer ladies a cure or treatment. I have posted many research links on FB. Pete finds things daily. What would I do without him? My One.

 

So back to business as usual. Keeping well. Staying focussed. Looking for the next big thing and hoping I am well enough to have whatever it may be when it eventually rises to the surface.

There is always hope. Grab it with both hands and keep going…. I plan to.

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