Back from our exciting European tour…

This is the longest I haven’t blogged before but it has been a busy week. Having friends over last Thursday our little trip and ‘holiday’ started with a lovely meal that evening. Friday morning we had a really early start to the Eurotunnel hoping to hop on an earlier train. Sadly it was ultra busy and we didn’t get to France until about lunch time. We decided this time for our visit to Germany for my treatment that our friends could come too and we could make a little ‘holiday’ out of it. Of course the trip took many hours in the car and I was happy for someone else to be navigating!

We had a day in Brugge where we took a horse and cart ride and climbed hundreds of steps up the clock tower, ate chips and mayonnaise (apparently that’s important in Brugge) and drooled over Belgian chocolate!

The next day we drove to Reims the champagne region in France. Here we went to the Notre Dame cathedral and took a champagne cave tour… oh and drank champagne!

The day after we took a long journey into Germany and stopped in Heidelberg a bustling touristic town and had a break in the sun (albeit fleeting) then we cracked on our way to Duderstadt where we would be for the next few nights. There was a small hiccup as the hotel didn’t have our bookings but luckily they had two rooms for us… phew…

During all of this there was plenty of banter and many laughs. Pete seemed so happy touring around and didn’t once get tired… bless him.  During our visit to Duderstadt we showed our friends around the local town and we made use of the spa… bliss. We travelled to the Harz Mountains, ate German sausage and went back to the river that Pete and I found last August. It seemed different though this time. It was incredibly peaceful with little movement and very little water. Many rocks were exposed so we decided to climb across them and have a little explore. It was here that all the excitement started. I noticed that another part of the river seemed much more energetic than where we were and then I noticed that it had gotten really noisy where were standing.. Thinking nothing much of it we heard someone shout from above but didn’t understand what he said. Then Pete noticed that water was rising and that the channels we had crossed were filling up! Making a dash for it across slippery rocks we made our way back to safety but only just. Pete got a little caught up in it and wanted to save the camera rather than himself! It was exhilarating but scary at the same time! Right before our eyes the river started to fill up. Then the rain came and we got soaked. It was moving being back there again after the year we have had… Pete and I had a cuddle and soaked up the atmosphere of our little special place.

Treatment went well as usual. Dr Nesselhut senior was on vacation so we saw his son Jan this time. He said that since I have been having two injections each time they will run out of my cells and serum to use after my next trip there. Because they hadn’t planned in advance I couldn’t provide any new serum there and then as they needed to do a hepatitis blood test again therefore I have to pay an extra 300 Euros for a donor serum. There are pros to this apparently. It seems by having a donor serum means they have different antibodies which could be very effective when trying to fight infection and of course canSer inside.

I have booked for August as I will now be going Bi monthly. They advised against monthly as this could over stimulate the cells in my body therefore creating canSer and seeing as it is working bi monthly is the way forward then this may be reduced to every three months. They have advised me that I am to provide more cells when I go back in October. This means that I am to have leukapheresis (remove all my white blood cells) all over again. Now I know what to expect I am little nervous! But I have plenty of time before that.

After our two days in Duderstadt we made our long journey back. We stopped off in Brussels the night before last and that should have been a lovely little evening in the city checking out their nightlife. The traffic however had different plans. Our seven hour journey ending up taking eight hours and all of us left feeling very fractious when our sat nav kept changing its mind. Sally Sat nag as I call her let us down… I was actually shaking with stress from it and Pete’s head was going to explode. Luckily for us Pete has a natural homing pigeon programmed into him and found his way round the city despite Sally Sat Nag.

We have driven something like 2000 miles in five days. I felt a bit bad for our friends who were really looking forward to a relaxing time away… I guess it was in many respects… sat in our car driving across Europe! We certainly squeezed a lot into a few days and it was a lot of fun.

I also made the most of our time away by breaking my dietary rules. I ate meat, I ate sweets and cakes and drank alcohol and as fun as it was at the time I feel rough. I did eat plenty of garlic though as mentioned in my previous post. This pleased everyone in the car for the last five days! Ha ha! My tummy has been in a state and I was so pleased to be back on my juice this morning. Yesterday we went shopping and bought a trolley full of veg…. mmmm. Oxygen rich foods that will cleanse my polluted body which has clearly put on weight.

Once we got home we got our lives back in order and Pete is now back at work and I have been back working with my clients. I love normality and I love coming home. Kitty has been ultra affectionate too. Leaving her with Aunty Sarah must be making her feel loved and safe. Normally the cat can be very feisty and weird on our return but she sat with me this morning during meditation, yoga, exercise and whilst I was having my heat and air. Bless her.

I have been feeling mentally a bit weak recently. I am happy and positive but I have been having confused thoughts too. What I want is to be told that I can be canSer free. I know it shouldn’t matter if it’s said to me or not as it’s up to me to keep that thought process but I guess I feel a bit beaten at times when doctors simply say that once canSer has spread from its primary site to other parts of the body it is incurable. I just find it hard to believe. I have read so many stories of those that have done just that; had incurable canSer and no longer have any sign of it in their bodies. I don’t know why it’s bothering me now though. I want to feel that I have a future and can plan my life for many many years…. I know it doesn’t matter as no one knows what tomorrow may bring but for all those with children you plan your life to bring them up and give them the best life you can. You never imagine that you may not be there for them one day. Life isn’t like that. I want to be living for 40, 50 more years well and happy. Its pointless thoughts but never the less I am not in the position that I was two years ago when I had the chance at being fully canSer free…supposedly.

It makes for planning your life and what you want from it so hard. Everyone rests easily or in ignorance that they will have their retirement plan and wherever they want to be all planned out. Most of the time I am like that now but I feel the nagging knowledge that at my next scan everything could be different. Pete just says to enjoy now and not think about anything else but my life has always been about the next thing otherwise what do you do you every day? What’s the point of working and doing courses if you live day to day? I think I need to work on my head and what really makes me happy. Maybe I am forgetting to be thankful and grateful and just really happy to be alive and well right now. I get a bit lost not having any major plans. And always being good and thinking about my diet and making sure I exercise although being really good for me sometimes I just want to forget it all. Just for a fleeting moment. What I need to do is actually just forget that I have a chronic disease. It’s by someone telling me that I have it that I know about it. Ignorance is bliss and it would be so good to not know….sometimes…… I need to read some positive books. Hey ho…..

I have had the loveliest clients in today. They have all given me such a big kiss and cuddle. I feel very loved. It makes everyhting semm worthwhile.I can’t wait for my Bear to come home. More cuddles. X

 

When in Rome…….

The bank holiday weekend has flown by. It’s hard to believe it’s been four days since I last blogged. So much has happened starting with Friday evening.

I attended my friends Ladies Charity Garden party. As it wasn’t very warm it became a house party but all the same it was amazing. The turnout was great and everyone seemed to really enjoy themselves. There were a few surprises such as topless waiters and a pole dancer. That sounds weird but she was so skilful and elegant and the best bit was that she did a dance to a very special song that we call ‘our’ tune (First time ever I saw your face by Roberta Flack) After the dance finished and keeping composed throughout I got to have a go at being a pole dancer! It’s incredible the body strength required. I have to admit I secretly enjoyed it. The evening was topped off by the raffle. I was so excited by this as the prizes were brilliant and all donated by our friends and me. I didn’t for one minute expect to win anything- let alone four prizes! I actually put two prizes back in to the raffle as I wanted others to have a chance too. I ended up winning a night stay at Caswell House; http://www.caswellhouse.co.uk/ and, wait for it…. a pole dancing lesson! Ha ha! I am actually looking forward to it.

We don’t actually have the totals of the evening just yet but I will let you know shortly. I think we must have exceeded £350 which is amazing and all tots up my totals on my virgin giving page which still stands at £6153. I have been selling bracelets still so it will continue to rise.

Pete picked me up after the raffle had finished then we drove to Birmingham where spent the night before our early flight on Saturday morning. I love flying from Birmingham it is such an easy airport, except on Bank holiday weekends! It took us two hours to get through security and we almost missed our flight! Argh! The panic was over as we weren’t the last ones on the plane. The rest of our trip went smoothly. Pete had organised the whole thing to Rome (on my mood board of places I want to visit) and our hotel was immense. Before this we got chatting to an Italian guy who drove us to our hotel free of charge! What a nice guy….

Our hotel was beautiful and we were lucky enough to get upgraded to a junior suite. I have never seen anything like it. It was over two floors with to TV’s and overlooking the piazza outside with a fountain. We had champagne on ice waiting for us and we gladly started our stay with that!

The weather was glorious too on arrival so the afternoon was spent walking from place to place with as many stops along the way in little cafes and restaurants. We visited the Spanish steps, the Trevi fountain and more on the very first afternoon. All that walking makes you thirsty so we finished our afternoon baking in the sunshine in yet another cafe. Here we met a lovely couple from London and Essex. We got chatting and a few hours later we were still there with the sun going down.

We don’t half cram things into our little stays abroad. The next two days was spent walking everywhere sightseeing the usual things like the Pantheon, Coliseum and St Peters and the Vatican. One word – Amazing! And the change in weather didn’t even deter us. In fact it really rained quite a bit but not letting it stop us we bought his and her ponchos! We didn’t look like tourists- much! Ha ha! Throughout our visit we ate everything Italian and I indulged in ice cream and pasta and red wine… it was brilliant. And I didn’t feel guilty despite knowing my CT scan was looming in a few days.

I think my favourite thing was St Peters basilica. I rubbed St Peters feet.  The statue is beautiful and the feet have been rubbed so many times they are worn down. I crossed myself with holy water and we both had a little prayer. On our way out someone approached us and gave us a charm for a necklace and a card with a prayer on it to keep.Every little helps!

Our flight home was smooth and we arrived to bright sunshiny weather which the UK had luckily had a whole weekend of… I was so pleased for everyone that it wasn’t a wash out like our other bank holidays.

Straight home and I went to the back garden to top up my vitamin D levels. (It had to be done!) whilst Pete went straight back to work…. no rest for wicked… or saints for that matter!

Last night was lovely having our first meal back at home and it was all vegan. I miss eating like this and I instantly feel healthier. We had an early night and Pete got up at 4.30am this morning to go to work! I didn’t sleep very well after that so decided that I would spend my time visualising using every last minute preparing for today.

I got back into doing my exercise and other rituals and it feels good to be back. I put on a few pounds whilst away… easily done when all you’re eating is carbs!

Today was my ct scan. The first since February and I have been feeling really confident about it. But then I let my head take over. I can’t help but not feel over confident. I know I haven’t had any sensations inside and feel really well. I hope my gut feeling is right. When I worry I can’t tap into my intuition. My head starts thinking all sorts of things. My ct scan was easy and quick as usual. But the nurse was asking if I was still on treatment and how it was going after I had the scan. It makes me wonder if they see the scan and they know roughly from glancing at it if it looks good or not. It got me worrying that maybe she saw something. I couldn’t read her to tell if it was good news or not. She asked if I would get the results in clinic. I kept thinking why is she asking me this… is it bad news?!

But it’s done now. Nothing more I can do and I have to wait until next Tuesday for the results. Urgh.. A whole week.

I’m having an evening on my own as Pete is out to work at an event and I have got myself as much fresh food as possible. I can’t wait to tuck into it and maybe I will have an Epsom salt bath and neti pot to really spruce myself up and get me all relaxed for a night in front of the box. Ahhh I’m already relaxed…

 

Research Alerts;

I received this info on how researchers have identified a gene that, when repressed in tumour cells, puts a halt to cell growth and a range of processes needed for tumours to enlarge and spread to distant sites. It seemsreally exciting for us TNBC and other breast canSer survivors.

Click the link for more info; http://www.genengnews.com/gen-news-highlights/turning-off-cancer-s-master-regulator/81248318/

 

More news; I’ve been asked if I want to be featured in Women’s Own magazine as they are doing a piece on cancer survivors who have done/are/ doing remarkable/brave things. EEK! Plus Pete and I were featured in The Cancer Vaccine Institutes newsletter featuring my bracelets too. Little moments of stardom and recognition…. Happy.

Hearts for Harz

It’s been a few days since I’ve written my journal. I had a good couple of days finishing off the bracelets. I have mounted them on little cards I designed which have been printed for me and paid for by Pete, however I buggered up and didn’t proof them right and noticed a spelling mistake- argh! I was devastated. Adam who is our friend and works with Pete kindly went back to the printers and told them what I am making them for and they kindly reprinted them for free. I was well chuffed. I never expected that. I’m always overwhelmed by the kindness of people.

I have posted on Facebook that as of Wednesday I am going to be promoting and selling the bracelets. I have had a big response already from interest in people wanting to buy and sell them for me. One lovely group of sisters who lost their mum to triple negative breast canSer are having a fund raiser and want to have some of my bracelets to sell. I feel good. I knew it was a good idea and be known everyone that each and every one has been made with love.

So I am now in Germany, for round two of my vaccinations. But the weekend started on a high before we even left good ol blighty. England won against France at the six nations rugby tournament. That made for a happy house hold.

Coming to Germany is never a hassle except for getting up at 4am to get a 7.55 am flight. By the time I arrive in Duderstadt I am sooo tired. I was in bed by 7.30pm and slept for over 10 hours! Seriously I love sleeping. The beds here despite being traditionally German (separate) have the best mattresses and duvets… Happy cat today!

So what else can I say except since my great news I have been overwhelmed with the support from everyone. Once upon a time I was so negative and segregated from people. What I mean by that is that I thought I didn’t need anyone for support except my man. I never kept in touch with friends and they would come and go out of my life so quickly. Thankfully my true friends are here now and I have never felt so ‘full’. (I have also cut ties with toxic relationships and I feel good about that too)

In the last few days mum and my friend Liz have been putting pictures of me and her on Facebook from our early years mainly in fancy dress, yes, as a hula girl (and a wind up doll- apparently mum did have other fancy dress for me!) I cannot believe how many friends still keep in touch but boy we were cute! Ha ha…

It is seriously snowing here and after my treatment (which consisted of heat treatment up to 42.5 degrees to confuse and shake up the cells and an injection of Newcastle disease virus) we decided to drive to the Harz mountains again for wait for it….. Cafe unt kuchen which translates as coffee and cake. Ok so not part of my normal diet but weighing up the 80/20 rule it had to be done! Oh my, hot apple strudel and coffee.. I was like Hammy from Over the Hedge after. What a sugar and caffeine rush.. I am going to have a crashing low soon I am sure of it! With all the excitement and energy, I have been getting all excited about holidays and destinations I want to travel to. The list is getting longer as well as my to do list such as watching a Shakespeare play in an open air theatre. I have technically done this when I was 11 years old but not as an adult. Also watching opera and more. I’m so excited about the future.

How do I feel since getting the good news last week? Apart from feeling good and initially nervous that what if I am changing things and it may start growing again? I now feel really calm. Not so calm that I become complacent but calm as in being kind to myself. I am still taking everything seriously and I am trying my best everyday but if I don’t feel like exercise or meditation which on Saturday I felt like having a lie in, then I simply go with the flow. That’s one of my affirmations. Let life flow. It’s important for me. Still take every day as it comes and be grateful for every moment on this earth but make plans for the future. I think the biggest thing for me which goes round in my head is that I have the will to live. That’s the most important thing- I have such strong will to live that I actually believe I can beat this. I have a deep feeling of peace and I know I want to be here more than anything. But I do have to say that I wouldn’t be here now if it wasn’t for my Bear. Truly. It’s down to his hard work, his love, commitment and intelligence. Oh plus his skills at driving! There’s no way I could drive in Germany let alone the snow! Ha ha! So that’s that.. All up to date.. Enjoying life. Of course I would love to have the all clear-NOW! But it could be worse and lets face it I get some more time with my boy all on my own.

Tomorrow is vaccination day then our trip back home. Time flies…. But I have so much to squeeze out of life..

Better get planning