2015 Bring it on!

Todays’ New Year’s Eve.and thoughts go to.. Will I be here next year?

Will you?

Does that sound negative?  Depends on your frame of mind.
I have just spent the day on holiday in Antigua with my man and strangers. I laughed, contemplated, was just pain lazy, and looked dreamily at my bear hoping for many ,ore days, years like this.

I don’t feel sad. I feel over overwhelmed. I’m not scared of dying. I’m not sad if I died and had no more. But I be sad not spending every waking hour with the love of my life and the opportunity of what could be. Wouldn’t you?
We chatted over our extensive Caribbean lunch about what I am afraid of. I’m afraid of pain and not having quality of life. Pete pointed out that as long as I felt the most love and that as long as I wasn’t really struggling for breathe for example that every single living moment was worth it even if I was bloated on steroids and riddled with tumours.
It doesn’t matter any way. I keep having dreams or even lucid dreams of someone with powers looking at me and seeing inside me and seeing the cells of cancer like those sea particles that light up like luminous fireflies. They can see them leaving my body.

I have to be honest, as usual. I haven’t felt well. I’ve experienced sickness and giddiness every day. I’ve been sick most days and I’ve been off my food. It’s boring really. It’s upsetting not knowing why. But today has been good. I haven’t been sick. I have felt giddy but not too bad. I have been good not drinking alcohol and eating healthily, as I can.

So today is the final day of 2014. I’m not the sort to dwell or to plan huge for the future. I always have to lot to reflect on and be grateful for and I love planning for the future.

I’m sat here on our balcony, welling up with tears again. Goodness knows I’ve been doing it for days.. Tears of happiness actually. I have had a few secret cries through despair but I didn’t want to stress Pete anymore than I have . He already worries and loses sleep every time my head hurts and sickness occurs. We try to turn a positive spin on it but fear creeps in and the impending doom lingers over our heads. But todayI feel better again. I have stopped the supplements again. I can’t stomach them. I feel rank. Full stop.

Right now the sun has set and I’m hoping the little Mosquitos bugger off long enough to enjoy my time listening to Joni Mitchell and dancing with my Bear in his arms.

We’ve had a great afternoon shaking our booties to some dodgy tunes, swimming in the sea, bouncing on a sea trampoline and eating in the best restaurant on the island. The kindness, happiest people are here. I’m filled with love and in fact we spent the afternoon on Jacqui O’s Love Beach. Couldn’t have been named better.
So what does tonight bring? Australia are in 2015 and the UK are not far off it.
We are hours away and as usual I could easily go to bed.. Sleep and me are still best friends.

We will spend it on our own. No need for anyone else. No frills, spills or gimmicks. I only ever want to be near my favourite people. My favourite Bear. The rock, my love and my one who will continue to carry me through the tough times ahead. We still believe I will be NED.  We still think our own baby is possible and we will carry on living like there is no tomorrow.

Let’s face it do you know what you would do with you last day on this earth?
Today could be it. I’m not sorry. I never will be. I cry a lot.

I cry because I can’t believe I’m so lucky. I cry because I will miss it all. I cry because I have so much to give. I cry because no one knows how good life is if they haven’t lived in my shoes.
So what’s next?

The usual. Continue doing what I’m doing. I may have been off the radar a lot but I don’t feel like journaling when I’m ill. I don’t like to draw attention to illness. I don’t want you to have to feel sorry for me. I’m not asking for attention. And I know it can be boring and depressing dragging on about my minor ailments.
My biggest hope for 2015 is to feel happy, healthy and full of beans! I turn 40 in 2015… Not older but much wiser!
We have lots of things we want to do and I’ll reveal them once we have mapped them out over our bottle of champers later tonight.

But right now, I want to say 2014 has been immense. Better than expected. Despite the brain tumours, the surgery, the numerous vaccinations, the disappointments and let downs,  the highs, the lows. What stands out? My support.
My wonderful friends, my supporters from all over the world that give me strength to keep going, my family who are in pain too and my ultimate, 100% Rock of a husband, Peter, Bear….. Life doesn’t get better than this.
I’m never alone. And I can’t thank you enough for that.

Life doesn’t get any better than this. But if it can please God please make 2015 our year! Triple negative gals need a bloody life line.  And if 2015 isn’t the year this happens just know that I’m not going anywhere without a fight!

2015- bring it on!!!!!

PDL1 negative….

The weekend is looking exciting with German Christmas markets to enjoy. The only issue is a storm heading in to cologne.. Boo…
I have received confimration from St Barts that my tumour sample does not express the protein for pdl1, however they are still interested in me going to see them next Thursday as I may be able to get on the trial anyway.
I can’t decide if I feel sad or happy? I looked at the info online and it isn’t necessary a bad thing that I may not express the protein. It’s so complicated it makes my brain burst but all I know is that it is still potentially a really good option. What bothers me a bit though is that if I get all the way to St Barts next week to be told no. I don’t relish in the thought of getting up at the crack of dawn, fighting for a seat on the commuter train, if it arrives on time, waiting for ages to be seen at the hospital to then be told no. They may not find quite such a happy go lucky girl if that doesn’t happen. But I guess if I do make the effort I can plead with them and try to change their mind.
They have asked for copies of my scans and reports which the Churchill have done for them.
I hope they don’t just read the summary of the reports which never really summarises what the prof tells me.
Who knows? This one is on the lap of the gods… What will be will be and then I will make my plan based on the outcome.
For now I know I have a few days of intense treatment and hope that my scan after this will be even better than last weeks.
Let’s hope if they are down by 50% then we can be down by another 25% or more. The largest tumour in my lung is now less than 3cm and the lymph nodes are less than a 1cm as are the ones in my brain. Tiny…. Tiny, tiny,tiny.
Today we hope to dodge a storm that is descending on Germany and make our way to Cologne.
We have also been sent some really interesting information from our friend in Australia regarding timings of treatments and immunotherapy. He has suggested I have a certain blood test three times per week prior to the trial drug being administered. I will have to speak to all the doctors regarding this but mostly the ones at St Barts as this could really assist their studies.
I am intrigued to know if success is due not to just the treatment but when a person responds to it.. It could solve the questions as to why a year ago I was practically clear of canSer but despite all the efforts this year it has increased and spread?
Yesterday I got a bit down and was questioning my body.
I don’t understand the why my body is anaemic and why my my platelets are so high making my blood sticky and therefore a risk of thrombosis?
I had a chat with a doctor from the care oncology clinic and they’re not too concerned as to the levels and said they are not that bad… Ok that’s good.
Regarding the anaemia though; I looked at when the levels started changing and it was around the time I stopped juicing. In my juices I always had a high level of vitamin C and green powders. This could be one reason why my blood is less oxygenated and also why I am losing iron. Or could it be the enemas? It’s time to start monitoring now I introduce these elements and changes into my life.

I am also intrigued as to why the tumour markers are dropping.. I mean this is great isn’t it? But what am I doing to make this happen? And if I get below the normal point does that mean that canSer will stop growing and spreading?

Sometimes having too much knowledge is a hindrance. It is for me anyway. Ignorance is bliss!

Today my face looks puffy again. I think so anyway. My appetite has changed and I feel full and fat. My weight however was the same as normal when I went to hospital on Tuesday. It’s so strange the effects of treatment and medication on my body.

Anyway happy Friday everyone and keep warm and stay safe in the crazy weather we are all having.

Xx

Side effects again dominating….

Last night I had the second il2 injection of round five. I tell you, the side effects get worse. By 8pm I had full shivers and felt rubbish. I gobbled up paracetamol again but they didn’t have the same soothing effect. I went to bed in a pickle.

Thankfully though I did kind of sleep. I slept on my back all night so I know I didn’t properly sleep but at least I felt rested this morning.

The cat was very happy though. She snuck in before we shut our bedroom door and she slept on or right up close to me all night. At one point I heard her drinking from my glass of water on my bed side table! Lucky I didn’t need any then! It must have been a cold night, that’s all I can say, because the temperature I was kicking out must have been up there. I got out of bed this morning very red faced and felt urgh…

It took me hours to sort myself out this morning. I have also been struggling taking my supplements and medications. I am not sure if it is a mental block but I really am off green juice and supps combined. It’s so weird how things change. Only a few weeks ago I really felt that taking my supplements whilst drinking my juice was a great combination. I felt energised and at ease. Now I regurgitate every time I try to take them. Even my reishi powder and oil made me vomit. It’s so unlike me. Thinking about it now is making me get all watery in my mouth. That’s a bit of a pain as its time to have my evening round of meds and juice.

Today I have been organising for going away. I have been trying to get last bits of washing done and cleaning the house so it’s nice for our return. I have also been emailing doctors and organising appointments for when I get back.
I emailed Prof D regarding getting a prescription for mebendazole. He has referred me to another clinic that uses it and says they should be able to sort me out. I contacted them and they say they would be able to help. Yay! But I need to have a consultation and then a follow up appointment costing £400 and £200… Boo!

I feel quite excited about being away. I want to spend some time thinking about the next quarter of our year. I am nearly finished with the health coaching course and I have plans to get in order. I want to have some new goals and feel fired up and ready to go.

One of the lads that did the Colour Run with me at the weekend has made a video. This really cheered me up today… I hope you like it…

It’s all about the money…

I have been having such a lovely week. Slowly clawing my life back together again, I think.
I have exercised these past few days and boy do I feel it. I mean, I am doing light exercise; 20 minutes of yoga and then some boxercise. I am aching all over! I didn’t realise how unfit I had become! But it’s good. I need to get stronger and fighting fit.

I still look pretty scary. When at home I don’t wear make up and with my very pale head which is lovely and shiny since Pete shaved it for me, I have huge bags under my eyes… Thankfully I am still decreasing in the puffiness. I am now only taking half a steroid daily which amounts to 1mg.

I had an email yesterday from Prof Harris’s secretary telling me he will book CT scans for me prior me seeing him in December. Actually I had a really nice surprise. I am quite demanding and do really keep on chasing things when I want something. The secretaries do get bombarded with all my emails and requests. Yesterday this particular secretary said that she thought I was really sassy and inspirational… How nice?! I replied and said, ‘Not really. I am simply trying to stay alive and have the best life possible.’  It bought a smile to my face though.

The trial secretary at St Barts has emailed me to say that she has had contact with Oxford and hopefully my tumour sample is being sent down today. It then need to go to US to be tested. Boy, these things take forever….All this to find out if I am eligible.

I’ve been having a little dance today around the kitchen. Pete is an avid listener of music and at the office he plays all genres depending on his mood. He has started sending me playlists to play every day whilst at home. I love it! I have been having a good old shimmy. It’s funny as I was feeling a little rough then the music came on and my booty shook and the sickly feeling went away.Tongue outI’d highly recommend it!

When we got back from Germany last week, I was met with a letter on my doormat from a debt collection agency. They had been instructed by St George’s Hospital in London?! Apparently an invoice had been sent to me on the 24th June for the ablation that I had and I hadn’t paid. I have until the end of the week to pay. I immediately felt stressed. I know what these debt collectors are like. Dogs with bones!

There are two things that are wrong with this situation. Firstly I have never received an invoice from St George’s and secondly, I paid the invoice over a week before the ablation which was on the 19th June. I felt aggrieved that they hadn’t called me asking for payment and they had simply passed my details over to a debt agency. I now have a black mark on my credit rating. Not only that we all know that stress is major factor when it comes to canSer.  Pete said not to worry but I do. It did play on my mind for one night and then I got on the phone the very next morning.
The debt agency couldn’t even be bothered to answer the phone so I called the hospital. They looked at the records and it sounded like pennies dropping. Yes, they could see I had already paid and then they looked for the invoice that I had apparently had sent to me. Ah, they couldn’t see it actually going out. They hadn’t allocated my payment. I did express my concern to the fact that they hadn’t even called me before instructing the debt agency. All the lady could say was don’t worry I will get it sorted and make sure the debt agency are contacted and this is resolved. She promised to call me back. Well she didn’t. I called back the next day and she said she had been busy…. Really… I very much doubt she will get it dealt with and I certain I will be hearing from the debt agency again. I actually look forward to them taking me to court.

With canSer it’s all about the money…. It’s a disgrace.

Whilst in Germany I bought some new supplements from Dr Nesselhut. Boswellia serrata- otherwise known as African Frankincense. Its main benefit is reducing swelling in oedema in the brain and it also has anti carcinogenic properties.

Today, I have been making more of my charity wish bracelets in preparation for the charity ball on Friday evening….It’s getting ever closer and I am really excited to be getting dressed up and having a party with all my almost all my friends! I cannot wait! I am unsure what to do with my head at this stage. Wigs are so annoying and I fidget… Going to have my nails done tomorrow…..Eek!