It’s like living in a movie! My fifteen minutes of fame…

Yesterday felt like a great day to start again.. As it were. As my treatment appointment wasn’t booked until late afternoon we decided to take the opportunity to start a fresh and start as we mean to go on when we return home. We spent the morning exercising, swimming and having a sauna to clear our skin, steam room to clear our lungs and cold showers to stimulate our senses! It felt good to eat less and only fruit and then to use the rest of my time reading Mind over medicine. I love days like that. Pete and I had such a lovely time together.. It was a good day.

Treatment went fine. I had Newcastle Disease virus jab and hyperthermia. It is pretty standard and nothing to report about again really especially as I rarely have any side effects.

The day went a little squiffie after that. We decided to watch a movie. Unfortunately for me and Pete it turned out to be a scary movie. Everyone knows I hate those sort of movies not only because I become so drawn into it but I just want to be happy! The only good thing about the movie was Brad Pitt… The repercussions of this was that I end up replaying it in my mind and lose sleep over it. I know it is only fictional but my problem is that my life seems so surreal that I find it hard it to define what is real life and what is not. I simply can’t believe that I have canSer. It’s like someone is playing a really sick game with me. That’s why I can’t differentiate between reality and fiction.

My life feels like one big drama, action packed movie. It’s full of highs and lows, laughter and tears. I just want there to be a happy ending. Well actually I would simply like there to be an ending. Sometimes I find it so hard to absorb.

Needless to say I woke today feeling very tired and anxious. I let myself get all consumed and started to worry about my treatment, what the future holds and what if’s. Silly I know and not helpful at all. Luckily Pete held me tight and told me everything is going to be ok.

Today’s appointments were more significant. I had zometa infusion to stimulate the gamma delta cells followed by the dendritic cell vaccination. As usual the clinic was busy and there is usually a waiting time to see Dr Nesselhut for the vaccination but today there a much longer wait than usual. I understand that things can get delayed but after waiting an hour and a half both Pete and I were becoming very frustrated and nervous. It seems silly especially when we know what to expect but nervousness never leaves you when sitting in a waiting room.

Finally Dr Nesselhut arrived and was a jovial as always. He talked a lot about lectures and new business he is doing around the globe. We tried to ask direct questions about my treatment and specifically for triple negative breast cancer. He says it is all biological and nothing is specific to types of cancer when it comes to immunotherapy that they provide.

We were saddened to know that despite having quite a large amount of blood taken last week that they used it all for the vaccination this time and haven’t kept any for my next visit. Also we were advised that Peter would need to give his blood and cells at the clinic every time and could not have it taken in the uk and couriered to them in Germany.  This simply ends that every visit now has to be for an extended period of time. Of course this is not ideal and puts so much pressure on us. I know it’s a no brained and we will work it out but it would just be nice for things to be getting easier.

I asked Dr Nesselhut how frequent he believes we should return for my next round of treatment. He suggested four to six weeks. Again this needs some time consideration.

On my return to the UK in approximately two to three weeks from now I will be having a CT scan to see how I am getting on. I feel trepidation as I know that immunotherapy can cause the tumours to appear larger initially as they could be covered in dendritic cells not cancer cells. I know that when my oncologist sees this he will assume it is canSer cells and change my chemo regime.

There are so many variables and I have to keep my witts about me. It’s up to me the path I take and nothing is black or white and there is no right or wrong decision. it has left both Pete and I feeling very mixed up. Not only could I be having side effects from the vaccination and zometa infusion I also feel quite emotional, overwhelmed, frustrated, confused and scared for the future. I also have feelings of hope and positivity but boy what a mixed up day.

Today is the first day when we haven’t enjoyed being here. Tomorrow is our last day and appointments at the clinic then we can make our way home. Its like an end to a chapter and who knows what the next one brings.

I don’t want to act like a petulant child but I want to stamp my feet and say I have had enough of this now! But I can’t.. Life and canSer isn’t like that.

There has been some interesting news today though… I appeared in a national newspaper! The article featured me and Professor Dalgliesh from the Cancer Vaccine Institute. It discusses the usage of immunotherapy and it’s success and possibilities for the future… my fifteen minutes of fame. Hopefully it will increase awareness and help raise money for the charity for essential research.

One more night away from home. One more movie night. I have been promised that tonight’s movie is a romantic comedy. I hope so I can’t possibly manage any more emotions!

I have a big cheesy grin and I know how to use it!

I have had a little of bit of excitement today. I had a call to be told that a newspaper may want to do a piece on me… plus I have been speaking to a BBC reporter and telling her my story. It’s not confirmed yet whether I am newsworthy enough but it still keeps me very much focussed on what this is all about. I have just been emailing some information across to the reporters and I am very proud of what the last 12 months has given me. I have just read the visitors page and it’s so comforting to know that I can in some way have contact with so many other people, cancer survivors and the general public. The messages are all so heart warming and I really do feel blessed to have such great support. I don’t think I am inspiring but if other people do then that’s brilliant.

I have also just been looking at my modelling photos to send a few across to the reporter and I recall what fun it was as well as how I dreaded it so much. My friend Lou can vouch for that. I was sending her panic texts from the studio right before I had to strip down to my undies! Ha ha! I am unsure if I will be asked back this year but it was one of those great experiences.

I was asked what my main aim is. That’s a bit of a tricky question because the obvious answer on a personal and selfish level is to kick canSers butt but at the same time be able to share the findings and experiences with everyone who is willing to read about it. If I can share one little nugget of information that helps someone in any small way then I feel I am doing the right thing. On a long term view I would love to continue with this work and will endeavour to spread the word about triple negative breast cancer the best I can. If I do find a cure or something that keeps me living well for many years to come then I will be shouting from the rooftops with a megaphone!

I was also asked what do I think has contributed the most to my current state of health? This is such a tricky question as I believe everything I am doing is contributing hugely. But I do have to say that if it wasn’t for my fitness and healthy lifestyle chemotherapy and any negative thinking would definitely be dragging me down. I have to admit it isn’t easy but life is full of ups and downs and the way I deal with eating ‘good’ foods as often as possible it to be aware and listen to what my body needs. As you know I do like a party and so I know that when I become ‘green’ again that my mood, my sleep and my general wellbeing improves vastly. You can only fight this battle if you are well prepared and that’s what people like me do. I think constantly being on the lookout of ways to make life fun, calm and stress free is up there on the steps to wellbeing. Looking at me I look better now than I have in years. I exercise daily even if it is only for 20 minutes, I meditate and I am grateful every day for the life I lead. Most of all I know for a fact that without my ‘One’ known of this would be possible. Now maybe that is a hard one for me to be able to share because I know I am very lucky to have such an attentive, thoughtful, hard working Bear… he will be blushing right now. But it’s true. My husband is the one that gets me through my dark days and motivates me to keep going. He is the one that says I will still be here in fifteen years, no doubt about it! If you don’t have a Bear in your life then I would suggest you find love in yourself and any other loved one may it be your mum, dad, sister, best friend or even your pet. Love is the most important thing in the world and when you learn to love yourself, love comes in abundance from every direction. I am one of the lucky ones but so could anyone else be. I will be there for anyone should they need my help or just want a smile. I have a big cheesy grin and I know how to use it!

Light and Love. X

Fifteen minutes of Fame

Found out last night that Pete and I are featured in the local newspaper. Pete went straight out this morning and found the article which had been written about us in the Oxford Times Limited Edition magazine. I hope you like it. I don’t think my kitty wanted to be part of it! Ha ha!

We want to raise awareness of this website and hope that we can draw many references and experiences so that it may help people like me with Triple Negative Breast Cancer. If we can get more intel and hopefully achieve in stopping the spread of canSer then we can help many many women before they get to my position.

Let me know what you think and go out and buy it or tell everyone you know and let’s get a huge following and strength in numbers!! Whoop!!