Grabbing the Bull

Emotional ...tick......tired....tick ......had a weekend at a groundbreaking festival for health well being and cancer patients big tick.

On one hand I have the NHS funded by a government that seeks only to satisfy their own pockets leaving smaller hospitals in tiny towns with bugger all to provide their patients with.

On another hand their is the mentality of individuals that are employed into a low funded system, some of which have to have big ego's to survive and are only interested in covering their arses.

I also have month on month of ACTUAL PEOPLE with the same disease as me, seeing the same doctors and the same clinical ego's dying, one by one they die, they follow the entrenched path trodden by patient after patient in a system that is failing through no fault of the qualified medical professionals who have spent zero hours studying the matabolics of cancer moreover the holisitic nutrition (check out these blue zones  that are being researched for the health benefits of their daily nutrition and low cancer rates The five blue zones are as follows:

• The Italian island of Sardinia.
• Okinawa, Japan.
• Loma Linda, California.
• Costa Rica's isolated Nicoya Peninsula.
• Ikaria, an isolated Greek island.

there is also the effect on the mitochondria and other such stuff and where funds are not there for valid trials and ACTUAL CHARITIES are having to step up to the fore and fund research with strict criteria....and on and on it goes.

On the other hand I also have my life and my family, my friends and my brain and my thoughts and my limited funds with even supplements involved in managing the metabolic approach range from costing £25 for one months supply of just one supplement and that's just one component to the multi faceted approach and then  to go to Germany for targetted chemo and hypothermia ranging from £6000 per week to have a very lovely German Professor manage your cancer in the manner that it should be managed through an NHS system if it were to work effectively and with a patient centered approach.

I am just happy that I have met the people I have and that I have faith in the connections I make tangibly and otherwise, I know that I have the inner drive to nail this and that is entirely what I intend to do, I just wish that those who have lost their life and are currently losing their lives could have had the healthcare system that it should be instead of as I was essentially advised by the chemo nurse on my first infusion for secondary breast cancer to ' eat doughnuts to avoid losing weight'.

My oncologist knows that I am on the brink of referring myself to another hospital in London and it is not that I don't respect her ...far from it she knows why I am thinking of doing it...... and she acknowledges that, she has advised me to stay on current treatment and I respect that it is working and I should stay on it. I have tried to get a DNA profile through a research project at Queen Marys called the 100000 Genome project on the NHS and through a private company whereby my own DNA will be profiled (post bone Marrow Transplant as DNA is now squiffy)  and then my cancers DNA but she has to save her own arse as far as funding goes as there is no ACTUAL reason for her to do it all the time my current poison is working, she knows why I am doing it for my own future treatment......BUT the lectures I have attended have suggested that the answer is not in the DNA but more the metabolic landscape and the epigenetics.....therefore I feel my path unfolds in the assessment of these areas and that I need to support my current treatment from the landscape perspective and spend a vast amount in supplements, and hyperbaric oxygen and nutrition as well as off label drugs such as aspirin, anti inflammatory drugs and reducing glucose levels......

It is soooo confusing, I do whole heartedly respct my oncologist, but having seen the aftermath of my clinician who is only interested in her status and the amount of 'Scientific Background' she has, (she didnt feedback to my oncologist my latest pleural pain as she probably felt it was anxiety based.....a very very familiar story at the cancer awareness lectures a common theme amongst patients that our symptoms are 'anxiety' based to the point where the author Fi Munro was dismissed for around a year before she was finally scanned and given weeks to live on the findings of her metastasized ovarian cancer, her book....... love light and mermaid tails)  The ego of my clinician and her desire to be 'in control with her science and save money' I fear is at a point of no return .....I feel a turning point is on the horizon............

Grab your bulls ladies.......

Finding the 'Joy'

This weekend I am going on a 'healing' retreat at my buddhist 'home' down in Hove, where a lot of letting go, reading and contemplation takes place. Where the mind becomes light, and the love for living beings bubbles up like a soda stream of divinity, the new and improved soda stream mind after an injection of buddha bubbles!!! Bliss.

Recently I have been looking at some artists and sometimes they seem to embody how I feel regarding all this 'stuff', the delightful (said with a Jools Holland Voice) 'Florence and the 'Machine' I adore her abandonment to convention regarding performing her songs. https://youtu.be/5GHXEGz3PJg

 Also Bjork who just becomes so weird and obscure with her current album Utopia it's genius and is almost like 'the future' according to Shakespeare and Orson Wells with a flurry of instruments from the 1700's. https://youtu.be/RIGgn1s3AvI

Aaaaaaand If you think creativity is just set aside for humans I am sure you may have seen this beautiful work by a creative puffer fish....https://youtu.be/B91tozyQs9M

And finally......Ken Robinson on Creativity in Education and the importance of it, he is brilliantly funny https://www.ted.com/talks/ken_robinson_says_schools_kill_creativity

So I find many outlets and 'joy' in so many different ways, by changing the trappings of my mind, but I have to say I am not a talented artist by any means but I find 'Joy' in the creativity of others and the messages they send.

The Secret World of incurable cancer

I know my posts have taken a dark downward spiral. I apologise to those who expect jokes, or positive 'life is good' talk. My blog does what it says on the tin, it's honest and hey folks, its a blog about stage 4 cancer it's not all sunshine and rainbows you know!

I am a member of various groups and forums and i recently attended a breast cancer conference, run by breast cancer care, specifically for younger women.  It was a great experience to meet such powerfully heroic women at varying stages of this catastrophic disease, who all continue moving forward the best way they can. Since this conference ladies have actually died, one was a music teacher who was still working as she loved her job but became ill with pneumonia she posted in the last days of her life how sad she was that this illness was slowly stopping her from doing what she loved she had two young children. Another lady who i remember was at the fore front of our alcohol fuelled saturday night thankfully survived 3 heart attacks, fluid on the lungs and heart but is posting from her bed that she is still alive....but very weak........


 i feel i am in a secret world that only people with this disease understands and those are the people that have to 'get on with it' while they struggle for breath because the NHS cant keep them in hospital and the district nurses are too busy.....thank goodness for charities and the hospices who, like winged beings fly in to assist and to be 'there' making sure you are comfortable even if that means being drugged up to the eyeballs for as long as your body will stand it. 

They say we have come along way with breast cancer....survival rates are better for sure but secondary breast cancer is not moving forward fast enough the drugs, while keeping people alive slowly destroy what healthy cells are there, complications ensue, side effects, but we carry on....we keep going until the body slowly gives up....it has been nearly everyday this week that my phone has pinged from the breast cancer forum, there has been alot of bad news and i cant help thinking the destruction of the NHS is making it worse. It is hard when you meet these women face to face and hear the red tape that the trial doctors are faced with, women were pleading to get on trials that were teetering on opening but these  women had been given 3 months to live they didnt have time to wait......i am trying to look forward to things, to make the most of my daughter for as long as i am me,  even on casualty on tv an elderly lady had mets to the brain....the blood brain barrier prevents mets to the brain being treated by chemo in most cases, she was no longer her and was screaming like a banshee. I feel i am just placing my bets. Dont worry readers.....i have a retreat coming up soon and my father has got a gorgeous place by the sea for me to escape to. Lots of fun things planned with my daughter too. There will be lighter posts, it has just been a very dark few weeks and witnessing firsthand someone in the last two weeks of their life was a very upsetting experience. I know there are wars and bombs and dying children, i just cant bare this unneccesary suffering, we should all be able to have choice and be free of suffering in any form. I wish all of these brave women got the recognition they deserve for what they have been through, seriously you wouldn't believe what becomes 'new normal' in cancer world "ooh finally got my lung inflated again so i can breath abit easier, night girls thanks for the support' and "just had 2 litres of ascites drained today feel so much better, hope you are all good" "hi girls apparently i nearly died twice, sorry for the short post but I am very weak, thanks for your messages".........

a-ha - Take On Me [ Live From MTV Unplugged, Giske / 2017 ]

Another lady from my supportive secondary breast cancer group is dying. She is in a hospice now, it has been a long process for her, of feeling ill, not being able to eat and having drains put in her nose to relieve the fluid build up from liver ascites.

I wish i could say everything has been done but it hasnt. She went two months with bowel symptoms before she was even given a scan. This makes me very angry and i hold the tory government entirely responsible for slowly removing funds. They have alot of blood on their hands.

I wish i could say that her death is dignified but i dont believe it is.

With the drugs available the law has got to change for those suffering with terminal cancer, it is just simply not humane to allow a slow death to happen if the patient has had enough. I have to say with respect to my friend i would not want my family to witness my slow decline like that.

Someone has to do something. All i can do for her is meditate and try and send her peace and an end to her suffering.

Death, Death, Deathy Death

A great Article  a friend posted on facebook

https://motherofalllists.com/2018/04/20/what-death-has-taught-me/

Every Little Thing.....

Everything She does is Magic (re written!).

Every little pain she has is cancer
Every little ache there's something wrong
Even though my life before was magic
I just have to carry on

Do I have to tell the story
A thousand scans since we met
The beast is always lurking
With a constant ghastly threat

Every little pain she has is cancer
Every little ache there's something wrong
Even though my life before was magic
I just have to carry on

I resolved to ruminate on this, a thousand times a day

and pray that I can sort this out in some new fangled way

But my silent fears have gripped me, before i reach the door

and once again I ruminate, yes, there's always time for more

Every little pain she has is cancer
Every little ache there's something wrong
Even though my life before was magic
I just have to carry on

Oh yeah oh yeah oh yeah 
Every little thing, every little thing, every little thing, every little thing 
Every little, every little, every little, every little thing 

Chemoooo, chemooooo,  chemo chemo chemo chemo