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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