The universe is being weird….

Life’s all a bit weird at the moment. Things that are happening in the world around us is mind boggling… (Donald Trump campaigning for president is one of the weirdest things ever!)

This year has been a bit of a year for weirdness. Life as we know it is ever changing and not always the way we want it to. Brexit is a huge thing, world leaders changing, wars and uncertainty everywhere.

Living with canSer is uncertain enough but when everything else around you is also up in the air it can make for quite a hard time.  I have loved this summer and I was so sad and reluctant to see it finally leave. I dug my heels in as much as I could but I couldn’t stop the season from changing and now here we are almost at the middle of October.

I feel unsettled, unnerved. For canSer patients control is something we so desperately want yet it feels like I have less and less control over my life and this disease than I ever did. I’m not saying there is no control over my disease at this point but I feel I’m teetering on the edge of a cliff. Everything is so nearly going to crash around my ears and there is no way I can save it

What do I mean? Well physically I am out of control. I have not managed to gain control of time management so feel like I am bouncing from one wall to another trying to get ‘everything’ done. What is everything? Normal day to day things plus a bit more….. I haven’t managed to get my groove back with my morning rituals yet. This is not good.

I haven’t been feeling my best since I went to have TACE last week. Obviously I am not going to feel 100% as it is chemo but I have felt really cold. So cold I am wearing layers in bed and gloves in the house during the day. I simply cannot warm up. I am anaemic so that’s not helping. Feeling unwell has meant I don’t want to exercise and actually couldn’t after having surgery. Exercise would in fact sort the cold issue out, but there is that chicken and egg thing. It’s mainly due to anaemia and my blood count being so low. I just stop talking about it and do it. Get that blood pumping around my body.

Treatment at Prof Vogl’s last week was good as always. As ever things are never the same twice and this time I had the surgery on my left side. Maybe I am more sensitive but it hurt more therefore the Prof gave me more anaesthetic, leaving my left leg really numb for much longer than it should.

I did collapse at one point in the hospital corridor. I couldn’t feel my leg at all and it went from under me and I went down like a ton of bricks in a heap on the floor. It didn’t hurt at the time but later my knees, ankles and feet were really sore. Now it’s just funny to think of me in a heap… So very Del Boy!

I’ve been well looked after by my Bear since then and over the weekend but the usual side effects come and go. A bit of nausea, sickness, feeling generally low and we all know what that does, sadness and fear creep in. Sleeping is still a challenge as I still have the cough. The cough is due to a tumour on touching my bronchial tube. Now this could be inflammation from the tumour that was ablated in August but either way it worries me and it’s really annoying. I have to sleep on my back so that I don’t get irritated by it. This is not good sleep. Too many dreams and weirdness happening.

See there it is- weirdness again. Even X Factor is really weird this year!

So there is the physical side of things. Mentally I am all a squiff. I can’t focus on what needs to be done. One day is good the next is all over the place. I have no desire to think about holidays or Christmas. I just want peace. As does my Bear. I worry about him and how he feels as life is so very difficult for him also. Work has its ups and downs and things can feel like they are ganging up on one. It’s finding a fine line. My list of things to do keeps getting shorter then longer and this is the same with trying to have a balanced and healthy life.

We keep putting so much pressure on ourselves to maintain a happy, memorable life but the truth is it’s not possible to live like that. I am desperate for some time out. I know- that’s coming from me! But what I mean is- time out from myself and my thoughts and my fears for the future.

I am so aware that with my bloods being low, that infection is very easy for me to catch. And I also know, that is when life can ebb away like a tablecloth being pulled from under the crockery. It’s so fast but then it’s all over. Obviously I don’t want to be ill or die. But I do need some normality and I am just not feeling it right now.

I am certain every canSer patient and their loved ones wishes for normality.

I know Bear is desperate to have a quiet time going into autumn and winter in his home life, his mind-set and his business. We so want to have it all but we can’t.

I know I am rambling but this is how my head is. I feel tired. My body hurts. I don’t know why, as I do rest a lot. But I don’t have routine and focus. I have not been listening to my ten point plan. I need therapies to help with the unloading. I need mindfulness for my sanity and clarity. I need focus so that I can help in business. I need happiness and laughter as it is so healing. I need good nutrition to heal my body. And I need to love…. This never goes away but maybe it’s not shown as much when I am fearful.

 

Treatment still goes on. I am having a scan at the end of this month then I am off to see Dr Nesselhut for more immunotherapy. There I will discuss and maybe book for photodynamic therapy- finally.

Prof Vogl keeps talking about me having a treatment holiday. I don’t really know why. He doesn’t say much. He did show me images of my lungs before I left last week. The one that was ablated is necrotic and visibly holey in the middle. I so hope that it stops growing now. The left lung has some very small tumours and he doesn’t seem hugely concerned about them. I wish they would all just stop. Give me time and let me have strength to carry on. Other than my cough and low blood count I am ok. I don’t have any other illness and nothing should hold me back from having a very active and happy life.

 

Today is mental health day. For us survivors and those close to living with terminal illness, mental health is something we all have to deal with. Life is so very weird and is getting harder and harder to keep normal and un-weird! I’m not sad. I don’t feel sorry for myself. I just feel weirded out by so much stuff. And that is all to do with my head, first and foremost. Can I have a new one please?!

 Now my website has been saved by the brilliant Laurence Caro; https://www.carocreative.uk/, I will be going back to my ten point plan and starting a fresh. I need reminding- as habits need forming again.
If you wish to join me then click on the link;
https://www.triplenegative.co.uk/ten-point-plan/

 

If you feel drained by this blog I apologise, but I know that the Universe is in a pickle at the moment . We’ve just got to hold on until it settles down and try not to be weird.

 

One final thing- It’s Breast Cancer Awareness month and our lovely dragons are in the pink showing support again…. What are you doing to show support?14606518_1126236044141108_6150083754488454713_n2

 

Love you all. X

 

 

 

 

 

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

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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

Scan results & squeezing everything out of life…

The weeks are shifting at such a high speed. It’s now 2.30pm and I haven’t had anything since breakfast. Life is simply skating by. I am very busy with trying to help arrange Pete’s office move and refurb of the new premises. This would be so much easier if everyone wasn’t on holiday but I suppose it’s that time of year. My head is full of stuff that needs to be done and has been done, but have I done it properly? Pete is also maxed out with a million things yet we still find time to have some relaxation an fun at weekends. Luckily it has felt like quite a decent summer here so far. Last week was like being abroad again and after doing house chores (there’s always plenty of them) we sat and relaxed and listened to the cricket. Go England!

Friday Feeling

For anyone that doesn’t follow me on Facebook, I decided to spread that Friday Feeling and had a little dance to  ‘Can’t stop the feeling’ by Justin Timberlake. I hoped everyone would love it and that some would do their own happy dance and share it. It really made me smile and I think it may have brightened up the day for others! Here is the link to the little video. I hope it works! https://www.facebook.com/TripleNegativeBreastCancer/videos/1077587782339268/

 

Health wise I am feeling pretty good. I feel tired some days and listening to my body take myself to bed early. The next day I always feel so much better. I can’t explain the tiredness other than simply having off days. I can only assume that my bloods are low as I am on capecitabine. I keep cracking my head on things- being clumsy but the worst was finding a large spider crawling up my leg after my shower yesterday! I was bent over cleaning the shower at the time, saw the spider screamed and then cracked my head on the shower controls. Ouch! That really jarred my neck and I had neck ache all day. I went to bed early and felt just fine this morning. Clumsy Claire….

Treatment

I have things booked this month. Microwave ablation for the largest tumour in my right lung to be burned. I have to say I am a little apprehensive because of puncturing my lung and it has only really just reflated. I am not convinced a new tumour as Prof Vogl says especially since having my scan results.

I have also had confirmation from Dr Nesselhut that he has bought the PDT machine from Dr Weber and will be able to offer that treatment to me now. However despite as many emails that I send asking simple questions about the procedure and trying to tie it in with my usual appointments I never seem to get the answers. Now they want me to go over, pay for more DC therapy then discuss it with him. What? I am not going all that way, paying thousands of euros to discuss the treatment with them. Honestly do they think we can drop everything and have a never ending money supply? I am now in the process of trying to organise a phone call or skype or something. It must be easier that way so I can make an informed decision and when it’s right to do if at all.

Scan results

I had a CT scan at the end of July and this week I was emailed the results. If I seem very low key about it, is because I am. The results were pretty good really. The largest tumour I have been having TACE on has reduced in size from 50mm to 23mm in one dimension but only from 56mm to 40mm in the other dimension. That’s still amazing but the scan I had here in the UK pretty much says it is the same tumour from January that was ablated. Or so they believe.

No matter what, there has been a big reduction since my last scan of that tumour. It is actually shows cavitation again. They state the lung has recovered from the partial collapse.

It says that the right lower lung lesion is stable at 24mm and the left upper lung lesion is stable at 24mm. Ummmm I didn’t think I had one in my left still. No scan has mentioned that for nearly a year or more! Well at least that is stable. You can understand why I haven’t been leaping around in joy about these results.

I also have a precarinal node which has grown slightly since my last scan from 14 x 16mm to 20 x  16mm. Bugger. However all the other lymph nodes have all reduced to a normal size again! Yay!

Some more good news is that there are no new ones anywhere else and the tumours in my spine are still sclerotic (dead) No collapse of the spine anywhere and no new lesions in the bones.

Overall a pretty good scan result I think. I am not leaping around but I probably should be. I feel great. I haven’t got any symptoms. The rib pain I get now I just deal with and I can live with it much easier than I previously did. I am disappointed that there are still active tumours and ones that had gone, have not. But as said no symptoms and no new ones. I have to take any positives.

I so wish I could have the results that say there is no evidence of disease. I have only ever come close to that once in 2013. But it soon picked itself back up and carried on growing and spreading. I only dream of getting back to that state. I really hope I can and I am doing all I think I can to do that.

 

I am scared about the ablation again. Not having it but how it will affect my lung. I need to fly home this time and I just hope it is safe to do. Here in the UK they told me not to fly for a few weeks, but in Germany they seem to think there isn’t an issue. Argh, who to believe?

I have to make my own decisions and go for it and I really don’t want to stop now. I have got to keep on top of this and keep batting it back. It’s hard to stay focussed and it’s hard not to ask questions and talk to Pete and others about it all the time. At least all the busyness recently has taken my mind off of it, a little bit.

Today I am getting all sorts tied up. We are having a last minute romantic getaway together. A lovely short break with the Bear. It probably isn’t the best time but I am really happy to be going somewhere warm and I plan on trying to chill out as much as possible. It may not be that easy where we are going!

Anyway it’s to sign off and have a magnesium bath and coffee enema.

Muchos Love to you all! Mwah!

 

 

Four Years? Here’s to the next ten, no twenty….

This weekend was a big weekend for Bear and I. It marked 4 years since I was diagnosed with incurable cancer and was given a limited life expectancy of 6 months. I don’t like to think about the dates as being really important as then cancer defines me as a person but it popped into my head whilst I was writing my to do list.. (I know, so rock and roll eh? Having a list for the weekends. Poor Old Pete, jobs lists and things-to-do never end!)

Once we got our jobs done Saturday morning we met up with our friends and decided to have a little celebration of the four years milestone and to revel in my most recent scan last week at Prof Vogls. Champagne flowed, possibly too easy, as well as the Cosmopolitans, but as usual we laughed for hours and ended up staying at our friends for the evening. (A few too many to drive home! Oops.) I fell asleep by 9.30pm- again how rock and roll am I? I wasn’t the only one, picture evidence below!

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Yesterday we felt a little bleary eyed but after a fantastic breakfast (thank you Louise!) we came home and were going to have a lovely relaxed day. And do you know, it was a perfect day. Despite feeling a little bit worse for wear and hugely tired, the sun came out. I got Pete onto a sunbed and listened to Wimbledon whilst we drank plenty of iced water.

On my ‘to do’ list there was one job that hadn’t been done and that was buying a ‘love seat’ for our garden. I had wanted it for a while and we decided we would go to the store and buy it, but wouldn’t assemble it that day because we weren’t in the right frame of minds.

 We got to the store and the only one left was the display one. Great, we got the last one. Even better; they gave us a discount AND it was already assembled! Boom. How lucky we are! We walked back to the car and a kind man offered to help Pete get it into the car. (We hadn’t considered having to put it in the car whole!) With a bit of jiggery pokery we got it in. What a nice man!

 We couldn’t believe how lucky we were and what a lovely day we were having?! You know, it’s the little things that make this life feel rich and full.

 Once home and in the garden we were very chuffed with the outcome and rested in the sun for the remainder of the day feeling massively grateful. I love it when things our way.. Life feels such a struggle at times but when the Universe aligns and small things come together it really restores our faith. We thanked God, the Universe and I had a lovely sleep last night.

 Ah…….

  Lots of love and happiness to you all. X

 

Happy, happy news.. I’m skipping with happiness….

My oh my. It’s Thursday already! Only this time last week I was relaxing and having a spa day nattering away to my mum hours on end. What do we talk about?!

Then our world kind of fell apart on Friday morning with the news that the UK have voted to leave the EU. This was not my vote and was not what either of us wanted. In fact we were devastated by this news. I hate change and feel that we have worked so hard to be part of the ‘club’ for so many years why would I want to risk all that? I need to travel freely across Europe. Within hours the news had spread throughout the world and our currency had crashed to an all-time low. Not great when we were heading to Germany for treatment the very next day.

Fear was what came flooding in for both of us and the uncertainty even a week on hasn’t changed, in fact, I am even more scared. Our country may have its credit rating reduced and all the countries within in the EU feel very unsettled. The list goes on as to what the negatives of leaving EU are and of course we are losing our Prime Minister as he resigned the very next day. Such a sad time for us Brits. Hate crimes are on the rise and immigration issues are all the talk right now.

It was almost like being told I had canSer all over again. It took me ages to calm down and not be hysterical. Life is so uncertain for normal healthy people then there are us survivors living an even more uncertain life. Now nothing is safe, secure or happy here. But as true Brits we have got up, dusted ourselves off and crack on like we always. Living each day as it comes.

We arrived in Germany a few days early ahead of treatment and decided to stay in a beautiful place called Baden Baden. Baden Baden is very well known for its natural thermal baths. Following my new found love of having treatments and going to spas Pete thought it would be nice to relax here and be healed by the earth’s natural springs. Caracalla Spa was eye opening. I have never been to such a vast spa full of pools that were very hot and freezing cold, massaging jets but mostly warm and comforting. You could taste the minerals in the water. We had aromatherapy steam baths, a brine salt inhalation and laid under infrared lamps. I was like a kid in a sweet shop. We stayed there for 3 hours! I felt wonderful. I would go there every week if I could! I was surprised at how I liked the freezing cold pool. It was so invigorating….

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From there we drove to Frankfurt where I had to TACE again, my second treatment since May with Professor Vogl. This time I wasn’t forgotten although I did lie on the table waiting for anyone to come for about 45 minutes! Haha. I was relaxed. They were already ‘feeding’ me a drip of the ‘cocktail’ I love so much. Prof Vogl was chirpy as usual and asked what we had been up to. He said there and then that my scans were looking good and that there had been some reduction but he would tell me everything later when I saw him after the procedure. We also discussed Brexit and he said it is very sad for the whole of Europe. Germany didn’t want this to happen. He was very concerned about right wing nationalists and the trouble to come.
Once I saw Prof Vogl later- he showed me comparison pictures of my scans from last month to that day. It is astounding. He said he had never seen anything like it and that the large tumour in my lung has reduced in size by about 45-55%. He said the lymph nodes were obviously reduced if not gone, especially as my cough has gone and the wheezing no longer occurs. The picture also shows (the image on top) where my lung was collapsed and now it isn’t. I told him I haven’t had any treatment elsewhere. He said he could use me in one of his medical papers. Wow….

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I told him I was feeling stronger walking up hills and generally feeling pretty good. I skipped out of his office and showed Pete and our new friends from Canada the images. They were amazed. Pete  and I were overcome with happiness and we were delighted that there has been such a reduction in such a short time. I have booked for my next visit in a months’ time. I am over the moon and on a mission to stay well. I am to continue taking capecitabine as a low dose between treatments. When I arrived I home I thought I would share the news with my oncologist here, Prof Harris. He replied to my email and said, ‘He was very happy and has never seen anything like that before…’

My thoughts do go to, ‘How am I going to get rid of it completely’ as it seems that when I do stop having TACE which is low dose chemotherapy, it returns. This time it increased very quickly. I did ask Prof Vogl If he thought the reason for its rapid decline was due to the microwave ablation I had in January as well as the TACE. He said it definitely would have something to do with that. Ablation doesn’t work immediately and continues to work over the forthcoming months and years. He says that when we meet next month we can see  how it’s going and then make a decision on the next step, whatever that may mean.

I continue to live healthily. I am working for Pete at the moment and it is time consuming but it has given me a new lease of life. My mind is feeling sharper and I am trying to stay focussed and not get stressed. To be honest, the only stress that there could be is not managing my time correctly. So sitting on my desk are lists of things to be done. I will get them done in order and multi task as best I can. She says…… I am a bit out of practise!

So life goes on… A lot of exciting times ahead, socially to look forward to, and also continuing with the search for a cure or at least a treatment for us triple negative breast cancer ladies. Today I have posted many links to research on Facebook that Pete has found and shares with me, and then I to you. My Bear is a machine….. I don’t how he copes with everything on his plate, yet he does. We both dig deep and support each other and all I know is that every day he brings me a mug of hot water and lemon with an apple (cored- he knows I don’t like the pips- He says sayings are there for a reason- ‘An apple a day keeps the doctor away’). He leaves it on my bedside table, gives me a snuffle then off he goes at 6am to the gym followed by his day at work plus many other commitments.

I have said it over and over…. This life is nothing if you haven’t got love. By that I do not mean having a partner to love you.  I mean love from every single human being or pet (Fur babies are just as important as people, you know!) Bear and I are just very lucky people to have each other. But we are rich with love from our friends, family and supporters. I am overwhelmed as usual for the love being sent our way with this happy news.

So….. Life is good. Life is ever changing, in every aspect. Hold on to the seat of your pants, it’s a bumpy ride!

Love and Light All.

X

 

 

 

What a month it has been…

As I sit here I am all confused as to what has happened in the last month!

Life is always busy in the summer months for Bear and I. My birthday, his birthday, friends and family birthdays, our anniversary, along with trips for treatment, work is buzzing for Pete and so much more.

This is a not a moan!

Since I last wrote we have been back to see Dr Nesselhut in Duderstadt, Germany. There I had my usual treatments of bloods taken for next treatment, oncothermia, an infusion of nivolumab and a DMSO shot (which I found out not only acts as an anti-inflammatory but also collects metals that may be floating around the body.. It hurts for a day after!), a shot of ipilimumab and then the vaccine using my dendritic cells.

It went swimmingly and as usual seeing Dr Nesselhut senior was a real treat. The discussion naturally went to Brexit and how we are all shocked by it. We also discussed Dr Weber and the photo dynamic therapy using infrared laser treatment that he offers, recommended by Dr Nesselhut himself, to work alongside his treatments.

I explained to the Doc that Dr Weber hadn’t replied to any calls or emails since my first one. It turns out that Dr Weber has been attending many conferences and is currently in Dubai trying to get his qualifications there so he can treat there. Well what about the about the patients in Europe who desperately want his help? Or is down to money? The fact that he could make so much more money over in the United Arab Emirates must be a draw for him. Now it all becomes clear…. Dr Nesselhut said that he will buy the photodynamic machine and he will offer the treatment instead of relying on Dr Weber. Well that would be great and it would be very useful for us not having to travel anywhere for it. It turns out that Dr Weber actually manufactures the machines used for this therapy as well! PDT (photodynamic therapy) has been prevalent in the news recently with new drugs to use with it. It seems really exciting and positive. We will be pursuing that treatment further. I have been told to wait for a call from Dr Nesselhut once he has purchased it… I couldn’t wait so I have emailed! Haha….. Dog with a bone…. Or as I prefer, kitty with a ball of string! Not the same eh? Haha..

We returned from Germany only to return to the airport a day later, but this time for fun! This year marked my Bears 50th Birthday! We wanted to do it surrounded by friends and in one of the most beautiful locations in the world, the Riviera on the South of France. Bliss.

We stayed all together in a villa with a stunning view of the sea and Roman Abramovichs’ yacht. (It is enormous.) We laughed, lazed, snorkelled, had an evening in Cannes, a day in Monaco and the best day celebrating Pete’s birthday, on top of the Fairmont Hotel in Monaco overlooking the hair pin turn of the Monte Carlo Grand Prix course. Its stuff only dreams are made of! Whoop!

It was emotional (Pete did one of his speeches again- got us all crying as per usual), enlightening and also life enhancing. I felt so happy and enjoyed every minute of it. We want to thank everyone that made it an awesome time. It couldn’t have gone better.

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Whilst we were there our good friend, Martin decided to #bravetheshave. He wanted to raise money for our chosen charities in honour of me, and shave off his hair. Now, it may look like he didn’t have much to lose (Sorry Martin!) but it was still such an honourable thing to do and by golly, he has been supported by so many people already! He has raised, so far, over £1000! We almost to the grand total of £45000 in total that we have raised in the last four years. This is sensational and I cannot thank you all enough for being involved in the fund raising over the years. Just as a reminder the money doesn’t go to me but to Breast Cancer Now and The Cancer Vaccine Institute. If you would like to donate here is the link to my page;
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=makingtriplenegativeapositive&pageUrl=2

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I don’t feel sad to come home as I was broken from not sleeping very well plus the partying took its toll. Haha. I am getting old! There was only awful moment and that was the Nice disaster. It sent chills down our spines as we had only passed through there earlier and we had been watching the fireworks on the coast from our villa that night. The next morning we messaged our loved ones to put their minds at ease and let them know we were all fine. Our wonderful friend Patricia Messenger did a live broadcast to her radio station in Cork, Ireland on the Friday morning. There was deathly silence around the pool as we listened to her account of what had occurred. So very sad.

We left on Saturday and all said our sad goodbyes. Then we met Jon Snow, the news reporter, who looked tired and bewildered. He discussed the events in Nice and said they couldn’t show any images as they were so terrible. He was on his way to the US to meet with Donald Trump. Two disasters so close together, poor man. Haha! Funnily enough, I ended up sitting next to him and what a lovely man he is. Then as I glanced behind me the celebrity chef Rick Stein was sitting there. Then when we collected our luggage and hopped into an elevator Rosie Huntingdon-Whitely (Jason Stathames fiance I believe?) was stood there. Err what a random day. It was so funny and made coming home so much easier.

Being back we have been up to our eyeballs multitasking. The days fly by which is why I do not write as often. I hate to say it but I simply do not have the time! I am back trying to exercise and attended my yoga class for the first time in a few weeks yesterday. It’s all a bit sore today, a good feeling, to know I am doing something.

Yesterday was our wedding anniversary. 8 years! It has flown by like a blink of an eye and feels like it was only yesterday. We didn’t do anything special for it. There was no need. We just told each other how much we loved one another and held each other close. The best snuggles in the world. Life doesn’t get better than that.

Sadly this Friday we are attending a funeral of a very close friend to Peter. Peter had cared for this elderly gentlemen for almost 30 years and we both spent many hours a day doing everything we could for him. As time went on he lived in a care home and eventually passed away peacefully at the ripe old age of 93. There is a lot to be done when someone dies, so this is now also something we are dealing with. It’s totally new to us and we are working our way through forms and government requirements which is time consuming…. Not enough time in the day sometimes. But we will get there because that is what we do. Never stop, life never stops and neither do we.

We leave for Frankfurt on Monday for more TACE treatment with Prof Vogl. I am still feeling well and the lungs are feeling good apart from feeling tired and sometimes out of breath. But there is no wheeze, no clunking inside the lung and I still do not have a cough. This feels good.

 

I saw Professor Harris yesterday and asked why I had only received an appointment for a CT scan next week and not an MRI scan for my brain as usual? He said as I am not having treatment on the brain and there are no symptoms he doesn’t feel that we need to have them so closely together. He was reluctant to tell me and said that he would ensure I could have one the next month.

I really like the Prof, he is honest with me. I asked him if he would prescribe me the capecitabine chemo tablets that Prof Vogl recommends I have in between his appointments. I would rather get them free on the NHS if I can, rather than pay privately abroad.  He said, again reluctantly, that he couldn’t prescribe without a letter from a professional, therefore I need to ask Prof Vogl to write me a letter. Done. It’s been sent already.

Prof Harris also said he was amazed at how I am responding to the same treatment I was given by Prof Vogl last year as he said that I had had progression recently. He said someone like me who has a few tumours, and not twenty scattered in the lungs, for example, is known as oligometastatic.

That’s a mouthful I thought! He explained that people who are oligometastatic generally can treat their tumours individually and have specific treatments for said tumours and survive longer. On reading more about it last night Pete discovered that there is some research to prove that someone who is oligometastatic might possibly be able to be cured! What????? I cried! Now this is great news and gives me even more hope to kicking this bad boy in the butt.

Phew, that’s a lot that has been going on and the next few months do not get any quieter. Just the way I like it.

Over and out! X

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Let’s Keep It This Way…

Don’t you just hate it when people that write blogs tell you that they are writing sitting stretched out in the garden in the beautiful sunshine? Maybe just a little bit? Yeah sorry about this… I am currently sitting stretched out in the back garden soaking up some rays I am a sunflower. 🙂

Now it probably sounds like I sit around all day doing nothing but not so! We have so few good days weather wise, I’d like to make the most of it. That’s how lucky I am. And I know it. I do however keep busy. I’ve already painted the front of the garden cabin, done washing, emails and my rituals. I do have plenty to be getting on with but it can wait! Woohoo! That’s under my husband’s orders. My wonderful husband.

I am feeling really good right now. Vogl told me my cough would subside within ten days of having TACE. I didn’t quite believe him but with a positive mind, he was right! Ten days was last Friday, my goodness, it has gone. Well near as damn it. Now I cough rarely, actually mainly in my sleep. But it has gone. It feels different. I still wheeze a little but I’m so confident the affected lymph nodes have reduced. Now my lung needs to reflate and the naughty bigger tumours- do one!

Considering I am taking capecitabine (chemo) and have had TACE (gemcitabine and cisplatin) I am doing really well. I sometimes feel tired but mainly at times of the day when everyone feels a dib mainly. I’m over the sickness, nausea, and weight loss. I’ve been sick a few times but I don’t feel ill. My relationship with food is back to normal and I feel happy.
This weekend, just gone, was so good. My bear and I did chores, pottered and had spontaneous meetings with friends and then the best day of sun in our garden. It was like being on holiday. We had such a simple, no frills, fab time. We sat until the sun no longer shone and we felt hugely grateful listening to music and just loving each other. It’s fair to say I know how lucky I am and how I love my life.
We spent time going through our holiday photos and reminiscing yesterday. Pete pointed out how canSer really has given us such a great life in many respects.  We would never have travelled all over Europe, to obscure places. We are truly thankful.

 

On TV last week was a programme called The Big C showing gritty stories of canSer survivors and their treatment. Pete wasn’t sure if I should it. But I did. It was really good and very insightful but heart-breaking too. It was so interesting watching a lady who has had canSer for twenty years! I nearly fell of the sofa. Even all that time on she struggles with the fear of death. It never gets easier and no one can ever be complacent.  That’s what I have been taught. Until that cure or treatment to stop triple negative breast cancer in its tracks I have to constantly keep on top of it. That’s life now.

I’m booked to return to Prof Vogl for TACE this month. Now I need to book to see Nesselhut.  Instead of NDV, which they no longer provide, I will be having echovirus. Here is a link to information on it, although it is called Rigvir. http://www.hope4cancer.com/treatments-a-therapies/rigvir-virotherapy.html
I am still contacting other doctors and awaiting replies. Dr Weber as recommended by Dr Nesselhut has replied and provided some information on his treatment PDT using infrared laser therapy. It seems really interesting but I need more detailed information on how he would treat me.

 

I am well enough to exercise – not much cardio, just weights and resistance plus yoga. Exercise is uber important for all us TNBC ladies. Well actually for every human being but you know what I mean ladies? Shake that booty and get the blood flowing. My mum started clubbercise recently and absolutely loves it. 66 years old and shaking her thang with glow sticks- Love it! Yesterday I meditated and practised yoga as well trained in the garden. I think I am getting stronger. I know my mind is feeling better for it for sure!

Life is busy at the moment. I feel great. I am doing more and my mood is really buoyant. I’m helping Pete out with a project and although I don’t want to get bogged down- I am really enjoying being involved.

I know it sounds morbid but Peter and I are planning our funerals. We even suggested it my mum too. We want our plans on paper so our next of kin do not have to worry about the details. It isn’t as easy I thought it would be, and although quite a sad exercise to do , it is really empowering. I have no intention of going anywhere yet and neither does Pete. But it should be done for the sake of the others who care about us. It really has had me pondering on things I have never considered and I have no idea what I want? Burial, cremation, where, hearse, horse and carriage? It’s liking being asked what my favourite track of all time is… almost impossible to answer. (It may not be the one you all think friends!:))

It is fair to say I am truly happy right now. I am in love with my Bear more and more every day, if that’s even possible. I love our home and all its quirks, especially the Drayton Dragons, making our neighbours smile with their changing themes every month. (Here’s this month’s new theme…. June is the month of Wimbledon tennis tournament…. Hahahahahaha. I love our friends and family. I wish I could see them more, but who doesn’t right? I love my body and all its scars, wobbly bits, wrinkles and every little ache, pain and twinge. It keeps me strong and I am getting stronger.

Let’s keep it this way, Hey?

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Life Your Life, Be Free….

Live your life, be free.

I want to write more often but life is so hectic! I have gone from doing very little and feeling lost at times to now doing so much I am having trouble getting time to do everything. June is always busy due to it being my birthday and even though I had intended I wasn’t going to make a meal of it this year, I kinda have!

A few weekends ago we had arranged for our friends to come and stay with us. As it was technically my birthday weekend we invited more friends and made a mad weekend of it. We set up a party/relaxation zone out on the decking where we hooked up the tv, stereo et al. England rugby and football were playing so the boys were happy. The girls snuggled up on the sofas trying to avoid the rain and the kids ran riot. One of my favourite moments was when I appeared wearing a Chewbacca mask just like the one the lovely lady wore in the video online that went viral recently. The kids were not impressed and I made them cry! That’s standard in my house it seems. Haha. 13418837_10153675512607061_7837899092043083749_n Pete cooked the world’s best paella and we were all had a whale of a time.  The next morning we were a little sore headed but it was worth it. Our house was like a bed and breakfast, full of people and fun. We loved it. That was my first birthday celebration.

This weekend Peter and I went to Cornwall to the amazing Scarlet hotel for the third year running as my birthday treat. We love it there. Come rain or shine you simply can have the most restful and exhilarating weekend break. We attempted to surf and body board again, sadly, not very well but the water felt amazing and cold. The sun came out on Saturday and we took advantage of it by resting in the grass outside of our room. I had some therapy which I was longing for. I had an Ayurvedic treatment called Shirodhara which involved pouring hot oil on the forehead over the third eye. I felt like I was only there for ten minutes but an hour and half later I drifted back to my room. The sound of the waves, the smell of the fresh sea air gets me every time. We both simply felt so much gratitude and love. I cannot wait until next year…….Big sigh.

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Treatments coming up

In the next few weeks we will be returning to Germany for another TACE procedure with Prof Vogl as the last one has been hugely successful, from what I can tell.

The uber annoying cough has gone completely. In the last few days I have even noticed the whistling and wheezing from my lung subside which makes me think that the lymph nodes are really returning to normal and maybe the lung is reinflating. I can feel some clunking in there but who knows what that is without a scan? I know for certain my walking up hills and stairs has definitely improved and this can only be from my lung allowing more air in, plus exercise improving muscle tone, therefore improving oxygen in my body. This is a huge relief, for me but I think more so for Pete as he could see the discomfort I was in.

There is a BUT though. A few days ago when my cough was 100% gone I started getting pain my ribs and chest again! Nooooooo! It’s so unfair to go from one pain to another so quickly. It seemed so unfair. I wondered had I over done it on exercise as it was so painful. I couldn’t determine whether it was muscular or nerves again. Then Pete made a really good point. He said that the cough went right before the pain in the ribs started, therefore surely that meant my lung was reinflating and causing contact with those nerves again. That would make so much sense.  It was causing issues (and tears) for one day. Now I am getting more mobility and I went in the sea without too many problems. It’s there, but I am not letting it hold me back (and hopefully not moaning too much to drive Pete to distraction! Haha)

 

In a few weeks we will be returning to Dr Nesselhuts clinic for my next vaccine and complementary treatments. I have been informed that NDV will not be used. It is always worrying when things change but I am hoping to speak to him tomorrow to find out more details on how they will prepare my dendritic cells as they are not priming them with NDV.

 

What’s new?

Research has been interesting lately. There has been many new things popping up which I try to post on my Facebook page for all to see and share. The newest development we have seen is photoimmunotherapy. This is essentially using photodynamic therapy (PDT) and combining it with immunotherapy and targeting cells. This is something similar to what Dr Nesselhut had suggested to me by seeing Dr Weber who offers PDT. Sadly I am still trying to get Dr Weber to communicate with me. Another phone call to make.

 

To be honest, that is a real bug bear for me. I find it very distressing that doctors; professionals whom we rely on and need advice from, simply cannot be bothered to reply or contact us. We, as survivors, need rapid response and actually, any response, all of the time. I cannot tell you how many emails I have to make, phone calls and general prodding I do to get a response. I believe this is why so many canSer patients give up. It makes planning treatment and knowing what the next step will be, so hard. If only there didn’t need to be a next step. But there is a need. It doesn’t stop or at least it hasn’t stopped for me yet.

 

I need therapy! You all know that anyway!

I thought to myself the other day how much I need some therapies. Relaxation for the mind and body. The treatment at the weekend helped and this Thursday celebrating once again for my birthday, (Yay birthday mardi gras!) I will be having a spa day with my mum. I am so looking forward to it! Spoilt but needed. But other than going to yoga for an hour once a week I need regular treatments again like I suggest in my ten point plan. I love being given referrals. The problem is most of them are miles away. I will get back into doing something regularly when my hectic life will calm down.

 

Not only are we busy with keeping me well, Pete has to run a business. Not an easy thing when you are not around as much and also in today’s climate. He is going to be relocating his business which I am helping with. There is so much to be done and currently I am not hugely stressed… much! It’ll all sort itself out… eventually. I am enjoying it and it has given me focus but I do not like getting up early to go and meet contractors! Haha!

 

Additions to Supplements

I am so oversensitive about my body. I feel aches, pains and changes and this can be quite difficult to live with. I feel pretty strong and healthy right now. I have started taking Flavon supplements which come in a sort of jammy /gel format. I take the ‘Green plus’ and ‘Max plus’ and ‘Joy’ currently.

Here is the link if you are interested in looking it up. It’s suitable for everyone, not just canSer patients and even children. I have Pete on it too and I hope for it replace some of the supplements I take via tablet form. Plus I want to increase my green vegetable and superfood fruit intake, this helps me do that without the need for tonnes of fresh fruit and veg.

http://healthwithflavon.com/

 

Smooth operator

Recently I have been using body cream by to get my skin super hydrated. I use products that are free of everything nasty so have been using a body lotion containing shea butter and coconut oil by a brand called Jason. Not thinking much of it I used it daily and have recently noticed that it got rid of a random rash I had lingering for months, plus my mastectomy scar has almost disappeared. It has never bothered me it being there but I have really noticed the lack of it. It’s amazing! I would highly recommend it; http://www.jasonnaturalcare.co.uk/coconut-lotion/

 

 

Phew… there is so much to recap on and I forget what life has given me in the last few weeks that have passed. I sometimes wish I could put my thoughts down without having to sit at a computer and type- That would take away the element of journaling that has been so therapeutic for me over the last four years. The biggest feelings of love and gratitude continue to envelope both Pete and I and we wish we could live in this bubble forever.

 

Today is the longest day and the official start of summer, (despite the lack of summer temperatures and sunshine). There will be a strawberry moon too. I hope to see it and enjoy every minute with my Bear.

Light and Love to you all! XX

 

 

 

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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