How much more can be squeezed out of life?!

14322318_10154493882590522_3476413141232810188_nI have been meaning to keep everyone up to date for weeks but everything has been so hectic in one way or another. Since I blogged I have been back to Germany for the microwave ablation procedure with Professor Vogl. I wasn’t looking forward to it as my last experience was pretty awful. I coughed up blood for a week and felt generally rubbish for ages. This time was different. Firstly it was the bank holiday weekend so Bear and I decided to try and diffuse the worry by having a car holiday. We love our road trips so this was a perfect opportunity to see parts of Europe we had always wanted to go. We stopped off in Luxembourg and then we made a slow drive down the Mosel Valley. I have to say it was one of the highlights of this year. It was beautiful weather, beautiful scenery and wonderful company. I digress slightly… but this is a funny anecdote. I emailed Prof Vogl prior to leaving for surgery as the information he provided stipulated I needed an ECG. It would have been really annoying trying to obtain this so I emailed him asking if it was really necessary. His reply was brilliant… He said, ‘You are a super healthy human, no you don’t I replied ‘it’s a shame I have canSer then eh?’ He really makes me smile. We have a funny relationship. I like him. Pete does not. Vogl is nice to me but not to Pete… weirdly…. Anyway back to the original thread…… We stopped as much as we wished to sip Mosel wine in front of vineyards, we swam in the Mosel River along with other families, paddles boarders, jet skis, boats and freight carriers. It was surreal but so fun. From there we went to Koblenz to where the Rheine and Mosel rivers meet. These are all places I would never have considered travelling to but I am so pleased we have. Little Gems. We eventually arrived at Frankfurt and had an early night in preparation for my surgery the following morning at 6am. I took myself to the clinic and met with Prof Vogl before I was taken into the scanner then straight in for the surgery. I was looking forward to not feeling any pain and hopefully sleeping in recovery. I coughed most of the way through the surgery as it was close to my bronchial tubes but luckily didn’t feel much pain other than when I was first cut and the tube inserted into my lung. Too many details?! Immediately after the surgery I didn’t feel my usual sleepy self and was highly disappointed. I kept asking for more drugs but they refused! How very dare they….ha-ha. Then I started scratching my arm. Bumps appeared quickly so I called the nurse who then called the doctor and it turns out I was having an allergic reaction to plasters. Weird, never in my whole life have I ever had this kind of allergy. So they gave me antihistamines then I was asleep very quickly. It was where I usually have the dendritic cell therapy. Strange. During my sleepy time I was hooked up to a monitor for my blood pressure as they said it was low. The nurse repeatedly woke me up as the machine kept bleeping as my blood pressure kept dropping below their line. It was obvious to me why my blood pressure was low. They had given me more relaxing drugs than I knew how to handle, other than sleep. I was so frustrated. I just wanted to sleep! Four hours flew by then I returned to Pete at the hotel. I spent the afternoon in bed and slept some more before going out for a little fresh air and some food. Then back to bed for me! The next day I was still very drowsy and sleepy. After having one final MRI scan I was allowed to go home. As far as Prof Vogl could see everything looked good. No deflated lung, which was my main worry. Next came the long drive home. No stops other than little breaks, just flat out to the Eurotunnel. What I have omitted so far is how lucky we were throughout this trip. On the way to the Eurotunnel we experienced no problems on the road. Within an hour of us driving on the motorway leading to the tunnel a lorry carrying a digger drove into an overhead bridge, causing it to collapse and shut the motorway and stopping all the passengers about to get to the tunnel depot! I thanked my lucky stars there but all the way, on our journeys, we only just missed many really bad traffic accidents. Our biggest worry was that we wouldn’t get back to Calais for our return journey on the tunnel especially with the immigration issues. Tailbacks were warned and when we arrived there were hundreds of cars queuing. Thankfully I had booked us on a flexi plus ticket which meant priority check in and boarding. We scooted past everyone onto to the next available train! Thank you, thank you, thank you God, Universe and Angels. We arrived home and felt tired but very grateful. I was also feeling pretty good. I wasn’t coughing up blood and felt rough but great compared to last time. We had an early night and I awoke feeling fine. In fact so well I was up and at ‘em helping Pete with his office move. Yes Pete’s business was moving the very next day! I have been project managing for the last three months and they were physically moving the next day. I’m certain no one believed I had been for treatment. I’ll take that. J The moved happened but the refurbishment isn’t complete… even now. It just proves how life has so many ups and downs. I guess we will get there in the end. Then a day later we packed our bags for our holiday that has been booked all year, with my mum! Bad timing, bad diary management on my part, but again this is how things go. To be honest it was probably quite a good thing. I was obviously very worried about my lung prior to my surgery and I was very relieved that I didn’t have a collapsed lung and have to forfeit my holiday… Again Luck was on our side. So onwards to last week. A week of beautiful scenery and great company with the two most important people in my life. My mum and my Bear. Los of fun, laughter and my favourite foods, Greek salad, meze and fish. I had plenty of time for real recuperation and to reflect on how things have been going these last months. Then I received a message from a friend I hadn’t heard from for a while. Then I knew it was bad news. About a month ago I sent Wayne my friend a message. He was the amazing guy who cured himself of incurable lung cancer using only natural remedies, nothing conventional. In July he messaged me to tell me he had a minor traffic accident, dinging a car as he overtook. He thought it was odd so went for an MRI and they found he had a brain tumour. I told him it was lucky he had the accident as now he knew he had the tumour and could do something about it. He totally agreed. That was the last time I heard from him. I never received a reply when I asked how he was getting on and I just hoped he was on summer holidays. But no. The message I received from his friend confirmed my fears. It turns out he got and infection and died in hospital two weeks ago. I was gutted and still am. I hate my gut feeling sometimes. I knew, just knew, something was wrong. I didn’t have his home address so I couldn’t go and see him to ensure he was ok before this. He one of us of us survivors, I was sure he would continue to stay well. He had a great attitude. He helped other canSer survivors every single day. He was an amazing man and I will miss him. I know he is fine now but his love for life was so strong and full. This horrible disease takes us so quickly. I have said before about how quick the end can come when you have been feeling so well previously. It’s like a rug being pulled from under your feet. It scares me. This news then made me concerned. Before I left the UK I had an MRI scan for my brain. I had emailed Prof Harris secretary and had no replies twice. I didn’t want to focus on it whilst away so waited until Monday morning. I got up at the crack of dawn and as soon as I could called the hospital. I found out that the secretary I had been emailing no longer worked for the NHS. In my usual manner I chased like a dog with a bone and called and emailed the other contact I have and luckily got a response. A helpful guy has answered my questions and I had a brief reply from a doctor who checked my MRI scan results… The line simply said, ‘It appears stable with minor improvement’. Whoop! I’ll take that! That relieved me. I started worrying especially after hearing about Wayne. So what’s happening now? Apart from hoping the office is completed soon my treatment plan is fairly simple but there are decisions to be made. Vogl suggested that I have a treatment break but on leaving it last time for three months and having quite a progression I told him I wanted TACE soon. I asked why he thought that and he said that is was mainly for my benefit, psychologically. I said no. I need to make sure I have continuous treatment. He said that it was ok and we have now booked for my return in October. As well as this I have finally had the go ahead with Prof Harris to have capecitabine provided on the NHS. I did have to go and see him and I now need to have my bloods tested every three weeks. I have to go up this week for that and to collect my prescription. Other news, is that we are still unsure about what to do with Dr Nesselhut and his treatments. With Wayne dying it has really made us think that having a strong immunity is everything and despite my bloods being low, having dendritic cell therapy could be really helping me stay stable in places and keeping me strong. We have asked for further information on the photodynamic therapy he is now offering and I am not convinced. It sounds scary and Peter and I would really like to have a face to face conversation with him. I have asked for a skype metting but they don’t seem to really want to do that. I am working on it. Then decisions have to be made. With all this unusual activity I haven’t had much time to do my rituals regularly and I am really missing yoga. I am hoping that things will settle down over the next weeks and I will return to some normality. I am flying by the seat of my pants. It’s amazing what can be achieved and my strength and happiness is full.

Today I don’t feel great as I am unable to sleep. We worked for over 12 hours yesterday and woke at 4am. I have had to take it really steady this afternoon. I have a fever and shivers but paracetamol is helping with symptoms. I am hoping a really good night sleep should help. It’s a beautiful day…Here’s to a beautiful autumn…… Light and Love. X



Learning Love & Happiness

This is my first day back from our little get away to a place we have visited for eight years on the trot, Ibiza.

We have been going to the same hotel all this time all bar one year and have loved it not only because it is super cool and the style reminds me of retro Miami but mainly because of the people there. We have loved making friends there. Some of our closest friends have been made there-from staff to guests. We have made lifelong friends whom we now try to see three or four times a year, some we keep in contact online and others that come and stay with us and we all go on holidays together. That’s stuff only dreams are made of.

We spent some lovely evenings partying, talking, sharing, laughing, and watching sunsets that melt your heart. We also spent lots of time just the two of us, walking along seafronts, sitting in bars people watching and boy you can do a lot of that in Ibiza. The place scares me a bit as there are many people that clearly need help! Haha.

This time we went because in all those years I had never been to the neighbouring island of Formentera, which I had been told is stunning. On our last full day we caught the boat and spent the whole day there. It was of no surprise that it was busy but we weren’t affected as we travelled early and walked for ages. Pete kept saying the best spot is just a little further, Grrr! Haha. I wasn’t disappointed once we arrived. The sea was aquamarine, turquoise and warm and we ate paella for lunch. Just perfect.

We don’t make connections with everyone we meet and sometimes chance meetings don’t always mean we were meant to make lasting friendships, unless of course there is a lesson in there somewhere. That’s what I try to tell myself on the odd occasion that it happens. The place is full of lively individuals squeezing as much out of life, just like we are and we all want to have as much as possible and that is why Ibiza can make me feel very tired at times. Late nights, lots of drinking, not wanting to miss any sunshine, getting up early to laze in the sunshine. But then there is FOMO. Fear of missing out. That’s something I could live without. FOMO.  I do wonder, when I am there, if there may come a time when I simply have to hang up my Ibiza ‘boots.’ I can still see friends and visit them and chat to them and love them like I do. I class them as family. The sad part I suppose, is that I think this way purely because I cannot go there without coming home more tired than I went! Haha!

I have returned with a cold and a chesty cough, which is not ideal when we have so much to do and more importantly when treatment is coming up and this time its microwave ablation in my lung. I am already worried about having my lung pierced for the procedure and I pray that it stays intact and doesn’t collapse. This is making decisions about how to get there very hard. I want to fly but flying back means staying longer and we have a big office move the following day we are due to return, if we drive that is. If we fly, then moving day will not be including us and this cannot happen.

Also is it the right thing to do? I have got no further with finding out more about treatment with Dr Nesselhut as he wanted to speak to me whilst I was away. This didn’t happen for one reason or another and now he is away until next week. I don’t understand why there isn’t more documentation to give to patients?!

Anyway that’s for the Bear and I to discuss very soon as I need to make bookings.

Back to the trip away. Sometimes I question why people are drawn to us and then I question further why they feel it was necessary to try to be part of our lives and then want to upset us?! We extend our hearts to anyone with judgment and maybe that’s our naive mistake. I think that it’s true that we become what we think and when I see someone being selfish, pushy, bullying and aggressive, I do feel sorry for the way that must make them feel when they are alone with their thoughts but it’s not for me to try and help them, but just to avoid it like hell. 

I find it hard to understand and to not be affected by them but I do now know that I should learn from it. It is definitely there to teach me something. No one can upset my calmness if I don’t want them to. I won’t allow strange people and all that makes them who they are to affect me. We have our own stories and we should be tolerant of them. But it doesn’t mean I have to put up with it, I just have to let it flow by.

That’s what meditation and yoga is all about. Be still like a mountain on the outside and like a flowing river on the inside.  It’s definitely a skill I need to practise.  I may be growing out of the wonderful White Isle and the array of people you meet there but I have had some great memories of it and I will always cherish it for the people who have made it even more special. I just may now need to travel to new places more often. It’s a big wide world out there. Life is all about change and I am certain that’s something we can never stop.

For now I will cherish my memories and laugh at the funny photos we took.

Bear and I love our time together with our friends and family and when we are alone. No one can upset the balance. Now is our time to rebalance and reenergise.

Onto the next chapter…..

13882601_10153826923562061_778336260021693125_nLove and Happiness XX