I 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