Being all zesty, with a squirrel looking at me.. who am I Snow White?

Sunday was my last day with the Bear on my own. We did our usual bits and bobs then as the weather was atrocious we tucked up to watch England beat Ireland for the first time in ten years at the Irish stadium… whoop! I had a happy boy here.

I spent my time pretending to watch.. I do enjoy it but I get so anxious! So I read my book, Honestly Healthy by Natasha Corrett and Vicki Edgson. It was recommended to me by a friend, what a great book. It is essentially a recipe book but it is based on the alkaline diet. The first chapter explains foods and how to eat alkaline but also how to prepare for a cleanse too. I really like it and the recipes are all so tasty looking and great for me as I long for things such as pancakes. They have great alternatives including how to make nut milks and desserts. The pancake recipe will be used tomorrow as its pancake day! Yay! I will never grow up.

I received the magazine I subscribe to yesterday and it has a make over… I was very pleased to see little old me on one of the first pages.. See the picture at the bottom. They asked, what would your life mantra be?’ I replied by email quite a bit of speel but of course they have condensed it… They asked me to send a picture of me being zesty.. So i did! However I felt a little silly to see the pictures that everyone has featured… oh well they shouldn’t take life too seriously. I certainly try not to. The monkeys liked me as you can see!

I have been doing quite a lot of visualising as usual not for very long. It’s like doing exercise and is so hard to concentrate. But as usual my visuals have been changing. My latest ones is affected by the weather we are having so at the moment it has been snowing so the canSer has been freezing then I either melt it break it like ice. I imagine also the chemo drugs taking away the damaged and canSerous cells and think of many white blood cells and dendritic cells swamping the area making it new. I climb the ladder into my brain which is like a control room and switch off the blood supply to the tumours and then switch on more dendritic cells. I then go down to lymph nodes and watch tem function properly clearing away the fluid from around my heart.and if needs be a i get a towel and help dry my heart off too. I like the idea if my insides being more like control rooms.. I don’t feel that I am being cruel by killing the canSer. I feel that they are confused and damaged and need to leave to become healthy cells.

 

This came in useful last night as I awoke remembering that today I had a CT scan. The long awaited scan (or not so long). To be honest I am not sure how I feel about it. In myself I think this is it’s going to be gone and then I realise things are never that simple. Well no point sweating over it I have a week to wait for the results and I so want to have good news. Not just for me but for everyone else! I wonder often if I am just silly thinking that this will go away. It doesn’t for so many other people. Why should it for me? I have been told it is incurable. Why do I think it can be cured? Is it just hope? That is the only thing to keep me going. If there isn’t hope then what’s the point?

Any way the scan was so quick- in and out in less than 5 minutes. So that’s that till next week.

Before I went I called Professor Andrew Tutt who is directing a trial and is a well known specialist in breast cancer including triple negative. The trial he is heading up focuses on triple negative and the immune system. Apparently it has now become evident that the immune system plays a dual role in cancer.  While on one side the immune system can fight the tumour by destroying its cancer cells, some immune cells can support the tumour by establishing an environment that facilitates growth.  This information scares me! What?! Surely not…

The project aims to help identify TNBC patients who are more likely to either relapse or remit by looking at their immune cells and genes present on tumour cells.  They would like to understand how these breast cancers gain the ability to evade the immune system and which molecules in the tumour environment have to be present to destroy these tumours.  They think that this seems particularly important in defining the prognosis in Triple Negative Breast Cancers.

If they can discover which elements of a “successful” immune response (e.g. destroying the tumour) is missing or is not working properly in those patients with a bad prognosis, then they may be able to develop a treatment to help them.  A similar approach has already been very successfully applied in treating skin cancer, whereby a receptor (“antenna”) called CTLA-4 is manipulated with a targeted drug called ipilumimab (anti-CTLA-4) to remove its inhibitory effect on the immune system.  In this study, they will focus on an immunity receptor or “antenna” called NKG2D which has been shown to be important in other cancers.

Currently there is no treatment which specifically targets Triple Negative Breast Cancer. Consequently nearly all patients are treated with chemotherapy and many have an unacceptably poor expectation of survival.  This research project could bring us closer to developing a specialised treatment which will save lives.

The more we learn about this type of cancer, the more accurately they can predict how it will respond to treatment.  This has several implications for improving patient care:

·         It can inform doctors about which patients need drug treatment to get better and who may only require surgery and radiotherapy. This will help to determine which patients need chemotherapy, rather than simply treating every patient in the same way.

·         It is also of psychological importance to patients and their families to have a reliable prognosis as early as possible in their treatment.

·         It may also affect the intensity of follow up appointments later in their care, making sure that we target those who need extra treatment. This will facilitate more efficient, cost effective treatments which is especially important for women receiving treatment in developing countries.

·         Understanding more about how the immune system affects tumour development will help us to develop bespoke treatments for TNBC and potentially other forms of cancer.

I know a bit scary eh? I am of course worried that the immune system is now making it a hospital place for canSer to grow?! But if I think back to before my immunity was shot to bits and still the canSer grew. Surely now that my immunity is better and has changed that it will in fact combat the disease? Oh please.. Surely the fact I was ill a lot and now I don’t fall sick at all must show that something is changing for better inside me?

Well this is the reason for booking to see Andrew Tutt. I want his opinion and what he suggests I do next if needed- maybe my immunity can be tested? So many questions..  Anyway this isn’t until the beginning of March.

A thought just popped into my mind. Made me chuckle. This morning I meditated and it was a particularly good session. I see myself in blackness floating like in the universe and sometimes I go inside and feel the source of all energy as a calming environment. I opened my eyes to see a big fluffy squirrel right outside my back door looking at me! Sometimes I think I must be Cinderella, no, Snow White! Ha ha ha! Cute little squidger.. Off he ran! I felt blessed and he made me smile.

I have today made the first 30 bracelets that I am making to sell for charity. It is going to take a while to get all 500 odd done but I aim to have them done by the end of this month in time for Triple Negative Breast Cancer Day.

 

 

Back from the mountains… bliss

Back from a week in Austria Skiing with my man… bliss.

We used to go annually and as lucky as I am I have been taught to ski by my big bear.. So very talented isn’t he. Year on year I have improved and I must say I am a great skier (even if I do say so myself!).. Testament to the teacher me thinks!

The best thing about skiing is the mountains. (Maybe the après too! ) It is so very surreal being in such a powerfully energetic place. It’s breathtaking and you feel so very small. The environment can change daily from being safe and clear, to a near death experience with no visibility and unaware what is around each bend. I am terrified of the heights and the weather changes and the power that the mountains have over us little humans. Most of all I respect them. They are so beautiful. I love it there.

It reminds me of the best things in life and for a whole week I didn’t hardly think of canSer or remember that I had it. No one would have known and thankfully I felt fit as a fiddle. Not out of breath or anything. Plus I didn’t fall over more than twice. So no bruises or broken bones.. The same can’t be said for my hubby. He did some spectacular falls but then he was throwing himself down the mountain as quick as possible to see how fast he could go! Ha ha! I’m laughing now but at the time I was going nuts!

Being in Austria amongst the mountains where there is summer and winter sports you would think that the Austrians would be healthy. Well they are to a degree clearly. But the food on offer was mainly meat, cheese and potatoes. It was vegan hell! However, being ever adaptable I went for the best and worst options. I had chips, bockwurst (frankfurter sausage to us English people) and a number of undescribeables. I had to eat  something and I love meat even if I have chosen not to eat it for health reasons. I decided it was holiday and a week off after all plus I needed protein for energy and fat for keeping warm! At least I was getting plenty of fresh air and exercise. Ah… fresh air. Again I was getting lots of it however everyone smoked! Plus they do not have a smoking banin public places, so everywhere we went it was smoky and smelly. Gross. Luckily I had a warm coat and spent a lot of time outside except on one evening when a Dutch fella asked me if I wanted a cigarette. I bet he wishes he hadn’t! I told him I had canSer in the lungs.. His face was a picture. I didn’t do it to be cruel…(much- devils horns!) Anyway there are always some negatives to every positive but the positives far outweighed the negatives.

Sleep wasn’t my friend either. I couldn’t decide if it was the energy from the mountain, the food, or chemo drugs that kept me hot and awake every night. I am surprised I stayed awake during the day but it didn’t seem to phase me. Now though I am pleased to be home and have been thinking a lot of what has to be done for charity.

I have received a few emails from Breast Cancer Breakthrough and also Kings College Hospital London where they are running a trial for triple negative specifically. I have been sent the details of the trial and will post on here tomorrow once I have read and understood it. They need funding to continue the study and I am going to make wish bracelets as well organise a number of people to hold events whereby they raise a £1000 each through the month of march.. More details to follow. I aim to make over 500 bracelets myself and have designed cards for them to go on and I will make about 30 a day over the next weeks..

Now I am back I loved starting the juicing again, as well as meditation and yoga. I always come home excited. I can’t wait for the next trip away.. Not sure where yet. I have plans to meet Andrew Tutt and discuss the trial; I have more trips to Germany for treatment planned and have plans as ever to update my house. The fact that I have plans really makes me feel that I don’t have a life threatening disease. I really do believe I could outlive this horror and I so want my next scan to reflect my good health. I have too much to live for. I actually even imagined having my own little snibbler the other day. I have never thought like that but I could see myself with a baby.. with our features and all that love. And if it can’t happen at least I have been feeling like I could. I may ask at the hospital about freezing eggs. It was Pete’s idea actually which really made me feel good. I wasn’t ready when I was asked two years ago. There was too much going on and I felt pretty awful. We just felt that if it was meant to be it would happen.

Pete has been amazing all week too. He is so loving and I really wouldn’t want to spend my time with anyone else. We have fun and laugh so much and now I have a weekend at home watching rugby with him before he has to return to work… Happy kitty.

I returned from hols to a copy of a letter that the oncologist sent to my doctor for their records. It was following my clinic appt I recently had, I stated that I have lung AND liver metastases! And that on doing a physical exam that I am unable to fully take in air in my left lower lung! Pete was not happy about this letter. I know for a fact the oncologist has it wrong. Every scan I have had says that I have hepatic cysts on the liver. This is apparently very normal and of no concern and she also said at the time of my physical exam that she probably hasn’t listened to my lung properly. I really don’t understand why they can fail to be consistent. It really upset Pete. They don’t know the effect something so flippant can have on such sensitive people. I am a highly strung individual and Pete is hugely sensitive and now we are like, a million times more so.. I am never going to understand doctors so I won’t waste my energy anymore on this subject… it was however worth the mention.

 

My mood board needs changing as I am ticking things off like anything at the mo. It’s good. I am fulfilling small goals. It is seven months since I was told I have incurable canSer with limited life expectancy. I am still deciding if is hold have known that info. I hope….. all the time. I think I will live till I am a 100 years old! I have too much to do.

For now I am going to return to my wonderful warm lounge and oggle men’s legs… with my Bear by my side and the little fluffy kitty to keep me warm. Or is it the other way round!?X