Final Instalments

It may sound trite, and a little presumptuous, but given my current ill health I need to clarify some important points of my blog during an interlude of lucidity. My Oncologist has told me to get my affairs in order, ( which I did months ago). They also told me that any treatment I have now is unlikely to work, but I have gone a head with the trial until my health prevents me. I went up to London to participate but it took all my energy and I have struggled with sickness and weightloss.

I want to reassure the readers of my blog that I am so grateful for the NHS and that while I slate the system and some of the restrictions imposed by the PCT's we are still very lucky as a country to have this oppoprtunity for free healthcare and I for one would have been gone years ago if it wasnt for the new treatments I was given as a child. So thank you NHS. You saved my bacon for many years and allowed me to have the beautiful daughter I have today.

It is apparent however that I am now coming to the end of my cancer journey, talk of syringe drivers and daily district nurses are all leading to the final outcome. I am struggling to be mobile now and am very weak, the sickness has been unbearable with very little relief, stripping me of my dignity and the ability to interect with people. This morning on this winter solstice I have awoke with some strength and have not yet been sick.

My gratitude to the friends and family that surround me like a cushioned circle of love right now is what keeps me going. My mother has been constantly by my side and the love I feel for her and my family unfolds like the ever expanding universe, I couldn,t do this last bit without them.

My Daughter is with her father most days as I have been too poorly and not really lucid she would have found it distressing.
I am overwhelmed with gratitude for my life and those in it, for the beautiful world we live in and hope we all do everything we physically can for this beautiful planet. I beg to my reaaders to do all that they can for this precious earth.
Gratitude for my beautiful loving family who inspire me everyday to be a better person and to value who I am and to be kind to others. As well as those steadfast friends that I have that follow me round with a safety net waiting to catch me.

Finally I am glad to have found solace in the teachings of Buddha too, just saying his name or seeing a picture brings me calm and serenity and perspective. I relise we do not need a symbol to manifest our own spirituality but for me Buddha embodies all that I feel is important and to him I am also very grateful. Love and acceptance is the answer to everything for me at the moment. It may change daily.


 I am now going to sip a drink from the gods, known as, flat diet coke with ice, I dream about times like these, these days, the cool cokey taste, a pleasure I never thought possible.

Bored of the conveyor belt of Cancer

BOOOOOOOOORRED.........I am so bored of cancer now and the ensuing contentions that stem from it.

The amazing professor that offered me a life line on the end of the conveyor belt of cancer basically let go of my hand (see previous blog post). He watched as I fell into the dark empty bin my arm reaching out to him grabbing air as I went. He just watched, like a small child watching a tv show, uneffected, lying on his stomach hands cupping his head gazing down at my descent, probably got up afterwards, brushed down his trousers and made a cup of tea......

Having been very helpful and supportive and positive offering to cut bits of me out and analyse them he then refused (or rather ignored) my request for a biopsy on my liver to sequence the cancer which he had previously agreed to, I just never heard from him again......and for him....that was ok.

I get this increasing feeling that I am just one of many many many many cancer numbers.

I went for a private second opinion in Harley Street, they were great and advised the next chemo up for offer by my NHS team. Eribulin, was a good one and that she agreed it was a good option. She also put me in touch with a Private Research Institute that were trialling a new targetted therapy for a specific tumour receptor. She also reccommended I be tested for the BRACA gene (which should have been done at the start of my treatment before commencing chemo back in 2016 as any positive results could impact on treatment options) I am still not sure why this test was not carried out as my cancer 'team' were aware of my families history of breast cancer on both sides of the family. Anyway, I think it is safe to say that should the biopsy I am having done next week in London come back positive for the BRACA gene, I will most definitely be seeking legal advice being as I am now on my 3rd line of treatment and have had constant progression.

The lack of respite in treatment now is really getting me down, I hardly have a life outside of the hospital these days, blood tests every week chemo for two weeks then one week off but still have to go in for a blood test on my week off.....I try to be positive but some days, like today for instance, I am still in my dressing gown having managed to do the basic of house duties, I feel my energy depleting and I can't be bothered to resist it anymore. But I have managed to carry out some much needed Cancer admin today which will hopefully be of benefit to myself anyway.

Also the hospital refuses to scan me using an MRI. As I have mentioned before I had a bone marrow transplant as a child which resulted in me having my lifes dose of radiation over two weeks in 1988. MY LIFES DOSE!!!!! 1400 msv thats alot of radiation.....Everytime I have a CT Scan that is 7 years of natural radiation in one hit to my abdomen!!! I have had loads and always on my abdomen and guess where all the progression is? I have requested MRI's each time but to no avail and now I am having to consider paying for an MRI to avoid unneccesary exposure to radiation my body just simply should not have when there are other options available. The hospital refuses to write down in an email the reasons why they will not use an MRI, they know that what they have been telling me is essentially, just aload of 'bbbbb......'brush off'. The reason is the NHS can't afford the extra time it takes to use an MRI! are my best interests at heart? are my daughters?  NO. They are meeting targets and deadlines and saving money so that someone with an over inflated ego can get some kind of prize for being efficient and get their face put up on some staff recognition wall. They put me at risk of further cancer KNOWING that an MRI is less harmful. Does it matter if I die because I have been exposed to too much radiation? Well there is no evidence is there that, that is what caused the progression,  that's their get out clause but when you look at the physical amounts I have had to my body and where the progression has occurred you don't need to have a PHD to realise that it is not good I had fractioned doses of 1400 MSV over 2 weeks in 1988 and have just found this info online A cumulative 1,000 mSv (1 sievert) would probably cause a fatal cancer many years later in five out of every 100 persons exposed to it. * There is documented evidence associating an accumulated dose of 90 mSv from two or three CT scans with an increased risk of cancer.14 Mar 2011.. so 2 or 3 CT Scans are a documented risk to anybody even if they have not had their lifes dose!!!! so I die. and that's ok because the theory is I was going to die anyway so they don't need to be cautious.. it just happened abit quicker perhaps...and that cancer conveyor belt just moves along and someone on a breast cancer forum recognises that I have popped my clogs and fallen in the dark cavernous cancerous bin and I have now gained my breast cancer 'wings' and I become an 'emoji' and get more facebook ' sad face/ heart likes' and comments than I have got my whole life.....and that is it and off I trot in my wicker basket forever in a field somewhere, probably glowing at night and perhaps a farmer will wonder why nothing ever grows in that particular patch.....

I am trying to focus on what little hope I have got left....... honestly I am, which is of course the trial I am being assessed for, they are looking into the MRI assessment procedure for me as oppose to CT During a trial it is usual to have 15 CT scans...I think we can safely say that would finish me off....  They have informed me I should have had further biopsies on the NHS to check the receptor status of my cancer, it is standard practice in most hospitals, the Dr I saw swore about the fact I hadn't had this basic protocol. So I just fold my arms on the table and feel like just putting my head in my folded arms saying 'What is the point?'                     While he stomps down stairs assuring me he will be writing to the hospital......................................... I focus now on London, the names I have been given the emails I have where I can ask questions and am not made to feel like an insolent 5 year old for asking them as I am not 'Towing' the line. I continue to take my metabolic protocol (metformin, statins, antiparasitic and antibiotic) to try and starve the cancer. I hope it is doing something, I have had no ascites for over a month now so something is doing something.........Someone the other day told me that a positive mind can really make all the difference and that I should be positive, perhaps they are fed up of looking at my glum face.........I have also been told to be 'brave' and to stop getting upset..I have learnt it is not convenient to others to be upset and is apparently a sign of weakness........I will try when I can be bothered and perhaps I can do some kind of cabaret when I am feeling abit better, or maybe I should just shovel my bodyweight of anti depressants in my face. I forget that I should only talk about nice things, unicorns, rainbows, that kind of stuff, I should be cracking jokes all of the time to keep everyones morale up, or perhaps I should post pictures of my smiling bald head and skinny body giving out thank you cards to all of my cancer team for all of their hard work and compassion and for caring so much about my daughter and I .................

Bringing out the big guns

Soooooooo, it's been a while.

Alas the news is not good and progression on my liver is abundant, over 12 new lesions, thickening of the omentum inline with omental disease and a good dose of moderate malignant ascites for all of my organs to swim about in. Bony met has become 'bony mets' on the CT report with no explanation really as to whether the one has become many, an assumption can be made regarding the use of the english language however............. Apparently it is not too important compared to the soft tissue major organ progression that seems to be having somewhat of a cancer party in my abdomen. The next line of treatment is a chemical concoction of the name Eribulin/Halaven. I tried not to think of those gone before me on this cancer treadmill, following the same protocol, like some 'dark' production line of doom.  I try to remember all of our journeys are different, but regardless the protocol's seem to remain the same even though the humans are not.

My oncologist didn't feel my abdomen but told me if the fluid became too much they 'could' drain it. I told them I had booked into the local hospice to have it done, which they agreed would be a much nicer option!! My team also told me that from now on the success rate of the chemo is reduced by 20% and that this next treatment would be my second to last option. I told my team that I had booked a second opinion at the LOC and have a liver appointment with the professor I saw in 2016 at Kings, who has kindly responded to my pleas of another biopsy for the purpose of sequencing and putting data forward for the 100000 genome project. I had emailed him out of desperation as part of my search for a new kind of treatment, my BCN had told me he had retired but it turned out he hadn't. I reassured them that it was just for my own peace of mind that I was exploring every avenue I could,  and from every angle. I think they know now that I am just going to do what I want regardless of what protocol is to be followed.

The LOC consultation was a great success, the specialist confirmed that I was receiving the correct 'protocol' of treatment and that she would have offered the same, she also reccommended a BRACA gene mutation test and a definite drain of the ascites to make me more comforatble, she estimated from the feel of my abdomen that 3 litres were lurking in there. The doctor also put me forward for a trial at a private research centre of which I am now waiting eagerly for a slot for. So a chink of light to cut through the enveloping darkness. 

So after 24 hours in the wonderful  hospice being drained I began my new chemo, a chemo designed to create the image we all associate with cancer, this is by no means an insult to the decades of research that goes into cancer drugs, but they all have there delightful side effects, hairloss, sickness, fatigue, pale skin. So the next phase has begun, my first day or so included vomiting, pain, fatigue sleeploss. Morphine and anti sickness drugs in hand saw me through.

Today though,  I sit here, having spent the morning in London after being given what looks like another slither of hope from the kind professor who wants to help me get a targetted individualised therapy. I am beginning to dare I say, come out of what seemed like a very long dark tunnel from which I thought that perhaps there was no return this time. A prospect of which I found deeply upsetting as the timing regarding my daughter and her starting secondary school would be too much for me to bare at this point.

My professor is going to speak to his colleague and friend at the LOC to get some advice as to the best way to proceed, we are talking big big help from big big people on the cutting edge of treatments for cancer, sequencing and analysing genomes and DNA, seeking the yearned for answers, like a droplet of nectar in a vast expanse of desert. There is no 'protocol' here, this is the land of 'pushing boundaries' where the sea's of change flow.

 I just have to cling on by the very root of my fingernails in the hope that I am in the right place at the right time, for the stars to get into alignment and for any potential magic to happen. I am beyond grateful that this superbrained man who has lived his life to save others has spared me some time to look at my case and to step in on that 'dark, dark' conveyer belt of doom, reaching his arm out to me as I approached the terrifying 'drop' into the cavernous bin of no return, there is always a chance he could let go, but for now I grasp his hand, like a vice, eyes squeezed shut, blind, blind faith in the essence of life.

Fun & Games

Sooooooo


Anyway, I am now eating my words as we speak. The hospital has pulled out all of the stops to scan me as my ongoing abdominal issues (last two weeks) are now sounding alarm bells. The very amazing breast cancer care group I attend locally is chaired by a qualified counsellor who works for a Kent Hospice and I believe my 'offloading' the other day at our group meeting may have caused some concern and the resulting ripples have perhaps caused some action. Today I have had the local hospice phone me to see if they can help and I have had an 'emergency CT Scan' and my chemo has now been cancelled for a week, big red writing flashed up on the Secretaries screen at the hospital today, notifying her that everything was cancelled until further notice....due to me and my inflating stomach......


I also have been approached by the professor who led my Liver RFA in 2016, I had emailed his secretary in some blind attempt to see if he would give my liver a fresh new biopsy for the purpose of profiling it for the 100000 genome project as my clinician and oncologist told me flat outright that they would not get involved, they even told me that the professor who treated me had retired!!. Now I am obviously considering this approach to cover any potential progression as my health history as I have mentioned before, is not great as I have previously had whole body radiotherapy in 1988 and a considerable amount of toxic chemicals pumped through me, therefore I am considering alternative DNA based options as well as following the metabolic approach laid out in Jane McLellands book 'How to Starve Cancer'. She actually dismisses the DNA targetted approach and lays caution towards biopsies so I am literally looking at the polar opposite ideas and hoping that one works.

The risk with a biopsy is further metastasis, cancer cells leaking into the blood stream, but, what if the cancer has become prolific anyway due to chemo  mutation or aggressive growth....She also reccommends anti inflammatory drugs when having a biopsy or surgery, both of which I may have if my abdomen proves to be host to a tricky resident.

Bascically if my cancer has progressed my options are now limited to aggressive chemo only as I am unable to have radiotherapy. But I am trying to extend my options with a DNA profile and by doing all I can with supplements. I am also considering getting a gut microbiome profile so that I can replace any missing bacteria from my gut, this can be done by post within 6 weeks.The best company appears to be ATLAS. Although by getting a consultation with a specialist I maybe able to get a profile quicker but it would cost considerably more.

For now I am looking at doing all I can with my daughter, family and friends and I  have been gifted a holiday which I am so looking forward to!! particularly the en suite hot tub!!! I have been so lucky this summer to have spent an amazing holiday with kind friends who went over and above their duty as friends by going ahead and  hosting and make me feel comfortable in a house they organised and in a place where all of us old friends could get to gether and I have been camping with friends and have a festival to look forward to where I will be holding a workshop on organic skincare to keep my soul amused.

There is life in the old dog yet.

So.........Bazaarly for some weird reason I have had Paul McCartney singing in my head, his blackbird song.......https://www.youtube.com/watch?v=9l5L34VqzlU

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

Buddhist perspective on death

A video for your pleasure if you have a spare hour it is interesting to listen to, I could listen to buddhist monks all day long talking with their wisdom and experience, always in an uncomplicated compassionate and often light hearted way. Having returned from a 3 day Buddha Amatayus retreat. I have been immersed in intense meditation and prayer solidly, interspersed with indepth conversations with like minded people, and the imparting of wisdom from bodhisattva beings, young and old, nuns to drug addicts. I have come back feeling free and feeling the warm buddhist arms surrounding me, a nun approached me regarding my health, she took my name and told me that it would go around all of the temples in the kadampa tradition and that the monks would develop 'powa' through meditation for me, if you are interested in Powa and bodhicitta and creating Darma you would need to read about it as I would be no good at explaining or go on you tube and listen to monks talk about it. I was extremely humbled to say the least as she then proceeded to thrust an organic chocolate bar in my hand for the journey home!  There are links between science and buddhism regarding death and to be honest if you really want to get into it quantum mechanics, energy waves atoms and all that malarkey. Death is part of life and this is a big part of the buddhist philosophy so here is a very honest video from an experienced monk (I am sure there are many, some with the Dalai Lama on youtube)  but I think this guys experience is quite beautiful. https://www.youtube.com/watch?v=BZZupDuprhU

New Drug Possibilities Perhaps?

Oooooooh have found an article on a new treatment drug

JPC11..........apparently can be used with  possibly aspirin??? and is a nettle derivative.
http://emjreviews.com/news-updates/a-natural-substance-could-provide-novel-cancer-treatment/

Something to pop in the brain bank for future reference perhaps........fingers crossed it won't be a first point treatment...

Simples

Latvia happened, although no great revelations occured. Rigvir costs £6,000 to start, no great evidence of success, it's a treatment with no guarantee's with no real data from the clinic to support the fact it will do anything, however there have been success stories but, alas it did not to quote a friends phrase ' blow my skirt up' TBH I am angry that I spent alot of money going there and getting a treatment plan, however the time spent with my family there was very enjoyable and precious.

So here I am on Capecitabine for the rest of my life. If it stops working perhaps I will look at Rigvir again, in desperation during a rest between treatments perhaps.

The data from my CT scan reports confirm that I am responding to Cape and the cancer is shrinking, but we all know the nature of cancer and it's hatred for chemicals and the potential to mutate to continue on it's mission to take over my body (which is why I am sure new wonder cancer drugs are for 1st use only), so I have to live, day to day, wondering again,  and trying not to contemplate my mortality on a daily basis. I have to live simply, but amazingly, trying to avoid edging my way to the scrap heap in a mass of mutated cells, .

 I have to grasp every moment especially with my daughter. I have to be practical too, and sensible.

The inner me wants to run away as usual carrying my daughter with me and disappearing in our caravan on an adventure into the wilderness, to make things out of sticks and paint our faces with biodegradeable glitter and forget about cancer.

I have a new friend, who surfs, and so thermal wetsuit in hand and a mad inclination to get in the brine and make a complete idiot of myself trying to stand up on some fibreglass plank twice the size of me, I embrace the need for experiences of the nature kind once again and for feeling like I am a human and not a cancer victim. So I am also off to see the northern lights and then to Madeira for some sun in the springtime. Magnificent planet and universe I love you.

I have been watching a box set on iplayer called 'Hard Sun' I can recommend it, it is a pre apocalyptic drama where earth has 5 years to survive ( I can see you rolling your eyes) the end is due to the sun sending out some deathly solar wind. WELCOME TO MY WORLD PEOPLE!! My solar wind is of the cancer kind, like millions of other people. I am thankful that I am still breathing still able......I have to stop questioning in my head, (what will it be like, will it hurt, will my family see awful stuff, will i struggle to breathe, how long have I got....etc etc ) and just get on with it. I am just hopeful that we can get rid of this current government before they destroy the NHS and millions of lives with it. The Tories could be the solar wind of our country reaching out with it's spindly death ray. I have nothing but contempt for those foolish enough not to see what is happening there and who continue to vote for this car crash of a society believing that 'I am alright jack' will protect them....foolish beliefs.....a private healthcare system governed by profit will reduce quality and put peoples lives at risk. I was happily offered immunotherapy in America to the tune of £30,000. Turns out immunotherapy would put my life at risk due to the bone marrow transplant I had as a child. But when you are talking lots of money, the so called professionals don't tell you that, or don't investigate the risks to you as an individual, you are paying for a package, like a holiday, it is down to you to take out the insurance that covers their arses....

But for now.......(and breathe), I am surfing the waves of my mind to try and come to terms with my mortality. As confucious also said we have two lives, and we only start living the second when we realise we have one...........True Dat.

Latvian Adventure

So I am counting down the days until I arrive in Riga, Latvia,  to investigate Rigvir viral therapy. My faith in chemo this time around is dwindling and I need a shaft of gallant light to shine on a chemical free option. The light in question is glistening in the Baltics, beckoning me like a chalice of magic to come and try....it could end up like a chalice offered by the 'cure all' circus fellows promising an elixir of endless life, but at the very least, a distraction from my current concerns.

I am currently wrapping myself in a blanket absorbing all comforts before I rejuvenate my being into some kind of positive action, directed and defiant against cancer. I seem to be letting the blighter win at the moment, my energy levels sunk into an abyss of nonchalance and minor despair.

A friend from my breast cancer group has just run 5k and got a certificate. I thought to myself, I should be doing this, I should be stepping up and pushing myself, a couple of years ago I completed a 10k run and wanted to go on to do the half marathon but got side tracked with uni and immersing myself in study.

I want to pick up that baton though, instead of staring at it from a distance.(of around 10k)

 I also saw a Macmillan Nepal trek advertised, which really peaked my senses. I am not sure I could raise £4000 to go and do it though and if I did there is no guarantees I would be well enough this time next year...but I yearn for adventure, to be up a mountain, trekking for a purpose. Last time I was in Nepal it was 1997, but I found it a magical place, of fresh mountain air and spirituality, friendly faces at every turn (apart from when I saw an old woman kicking a puppy against the wall of a temple, I sank down in my air conditioned bus seat and zipped my fleece up to the eyes, pretending I hadn't seen it). People though, were raw and real, mostly smiling, welcoming, humble.

The experience I remember very vividly was seeing the living goddess Kumari in Durbar square Kathmandu. A child....taken from her parents at around 3 years old she is thrust into life as a living deity, as the incarnation of Taleju, (although I thought it was the incarnation of Lakshmi, but wikipedia begs to differ). Her feet not allowed to touch the ground as she is carried everywhere on a sedan chair. As I looked at the this goddess through an ornately carved window in durbar square, her eyes heavily made up, she glanced out at her adoring sentients. A sadness almost in her eye's, she is but a child, only allowed to play with certain caste members of her age. Her elevation to deity, coming at a price, as when her period comes, the goddess incarnate is said to leave her body and she then is ejected back into society.....shunned as an EX goddess, anyone that marries her is said to be cursed and doomed, therefore a solitary celibate life for the ex goddess.

My friend and I debated heavily on the humanitarian aspect of this child deity. My deeply rose coloured  spiritual spectacles remained dedicated to the holiness of the goddess for those that worshipped her and the whole cultural meaning, but on reflection the unimaginable magnitude and impact on this little childs life, both an honour and a curse in equal measure.



No Nepal for me right now, but instead I look forward to Latvia, a little adventure encased in a nugget of hope. Hope that maybe I can start to think of treks again, half marathons and the like......

Letting go of 'The Fear'

So the last couple of days have been interesting. I have defined this secondary breast cancer journey, like most people in my position as a roller coaster for want of a better analogy (as I think that one is possibly over used). Sometimes I feel like I am on the verge of death, not as in my symptoms but in my state of mind, the not knowing when or how it will happen but knowing that it will be sooner rather than later, perhaps it is a gift to be embraced, the 'knowing' bit, the 'knowing' can alternate between extreme fearlessness and excitement about the fact my subconscious is letting me pursue my every whim and desire, without any restrictive containment of 'lots of time', and extreme despair of how I cannot control the progression of the cancer or the ability to stay on this planet for my daughter to watch her grow up and all that, that entails. When I visit my oncologist like I did the other day, she manages to inject me with some much needed fearlessness and hope again, it hasn't gone to my bones, although my joints look abit inflammed and some little thing on my jaw but they are sure it is nothing, I avoid letting myself create images of some a jaw cancer ravaging my face. She also confirmed that there are some other treatments in the arsenal and that on the vast spectrum of death by secondary breast cancer, I am still teetering at the early stages of that spectrum, but I know this can change on a sixpence as it were. This injects me with the permission I need to get 'experiencing' and reconnecting with people again with what appears to be no boundaries. I am not even afraid to approach celebrities to try and raise the awareness of secondary breast cancer, to try and fund some much needed research as breast cancer funds get lost and only a tiny percent. I think even 7% of funds go to secondary breast cancer...this is quite simply not good enough, it is the final curtain in the breast cancer world and yet it gets the least funding? It is hard not to dwell on the big pharma conspiracy theory as nothing else seems to explain why the funding and the research is not resulting in any 'cures' just 'treatments....that prolong your life....but you will need these chemical treatments to live'.....I also find myself wanting to get back to nature as much as I can as if it has some kind of answer for me, like I am reconnecting with some kind of life force in preparation for what lies ahead , or to try and live as hard as possible. I have booked myself into a fire yule ceremony on the 23rd of December, with lots of other earth seekers. I am looking forward to it.....some real earth connection stuff maaaan.

Holding back the red mist

I am trying my best to be a kind human being. I think I am mourning my old life to be honest and I find myself taking it out on innocent people, old friends. Some of which just do not know how to communicate with me. I contacted an old friend recently on Facebook who would always open her heart to me and we would have honest chats. I began to talk about my health and concerns for the future and she just didn't reply...infact she deleted her profile on facebook so that I couldn't contact her. I spoke to another old friend on the phone who had phoned me, a mutual friend was in the UK. Never once did they ask how I was, what my health was doing at the moment, despite the fact they know I am ill. I can't pretend it doesn't hurt, and I am sure I am just as bad at keeping in contact and asking about others, perhaps I am being too self centred, but I feel like I am allowed to have a bit of a free reign regarding wallowing in my own self pity right now. I am lucky I have new friends and wholesome honest people in my life and some strong old friends who still manage to put up with me and treat me like a normal human being not some kind of time bomb waiting to go off in their faces.

Some women I know have even been diagnosed with breast cancer in the past and know that I have breast cancer but they have not once contacted me to see how I am or to offer their experience, when they were having a tough time I dropped cards to their house all those years ago. I guess I am just not 'required' in their life, or do not frequent the correct social circles, attended the right school or class system (yes it does exist I see evidence of it everyday), I guess we all have those that we are drawn to but still it still leaves a bitter taste. I told the old friend I was on the phone to that we should really meet soon, they could have met me that night if they wanted to but they just agreed and said they were heading in to town at that point in time to see the same old faces they always see, they know what I am getting at, but, their life is either too busy or they just don't know what to do or say.  I have chatted to some ladies on the secondary breast cancer forum and it seems it is sadly so common for us, infact it has been a very busy thread!!, people shun us, whether intentional or not, I just don't get it! it doesn't compute with me, I find I want to help and talk to total strangers when I meet them and they tell me their problem or diagnosis, I wouldn't dream of running a mile. Speaking to others about it certainly helps me realise it isn't just me and it is a phenomena, however it also shows me how I could have made more of an effort with some people in the past and perhaps that is why they have chosen not to get 'involved' with my current health or listen to me whining on now, perhaps they think that boat sailed years ago when I had my chance.....I think I am just thinking too much. So many components to the experience of cancer I guess I just have to cut off those little bothersome attachments to what I think should happen and just accept my current path and those lovely people who are with me on it and offer genuine love and support as well as those yet to come into my life. I am lucky to have those people with me on this journey and that is the main thing and I am genuinely thankful for that....

The Terrors

I realise family members read this and I am sorry if my honesty is abit much sometimes, but that is me I guess!!!

I think the most awful thing about Secondary Breast Cancer is the slow unknown progress of every little pain, as cancer moves it's way through your body. Sometimes it is just me being completely paranoid, but other times I know, that it is the cancer making me feel this or that. Little jabs in my liver, little pains in my neck, little shots in my abdomen.

 I know there are people far worse off than myself but right now I am having a bit of a self absorbed pity party. 

My latest CT result showed rapid progression on my liver having not had treatment for months and it has now spread to the peritoneum which is the fatty draping that covers your intestines and colon like a curtain. Also there is trace in Left nodes on lymph gland which hasn't been mentioned before....I have started Capectabine an oral chemo therapy, but am on an extended break due to a heavy cold. Back on it Wednesday after a bone scan Tuesday to look at why I am getting pain in my neck. I have an overwhelming sense of doom but I am trying to maintain some kind of hope. I am looking at flying out to Latvia with my mother and brother to look at virotherapy very soon while I am well. 

My oncologist seems to suggest if Cape works though it will work on all the cancer so YIPEEE but.....if it doesn't work there are options, but the options are far less ( according to a very bleak registrar we had the misfortune of talking to). A friend from my Cancer group talked about a new hormone therapy called fulvestrant (faslodex) that we can go on but will cost us £680 per month!!!!!! So this is what is happening to the NHS bit by bit this government is privatizing our health care system under our very noses, if you voted conservative you should be ashamed of yourself!! it is people with cancer that will suffer the most. We need to campaign against this it is so wrong, and while some of you may be fortunate enough not to be effected by cancer, there is a high chance you will be in the future either directly or indirectly so you need to consider this regarding supporting the NHS through your political voting and raising awareness.

 I am not looking forward to approaching my oncologist with my proposal of virotherapy, it is going to be tough to get their support and I may have to implement a legal waiver but they may well not treat me if I go abroad, I have faith that i can get them on board though, one way or another. Rigvir is a very safe therapy. They just don't know anything about it!! which to be honest surprises me, when I worked in education I was constantly looking at different countries and the way they do things regarding the education of children. I would of thought as a healthcare professional you would be interested in abroad too, to compare and learn perhaps? ( I am being very arrogant and presumptious, I am sure they do) My Macmillan nurse did not know what I was talking about at all, but she claims to have a vast kitbag of science based knowledge to draw on and works closely with the profs at The Marsden, but only finds out about bad outcomes regarding treatment abroad. The whole healthcare industry is led by very bias research that mostly comes from pharmaceutical companies peddling their toxic wares. 

I am on the highest dose of Capecitabine and will keep going until the side effects become so bad that I will need to lower the dose...sounds great doesn't it? Side effects include the possibility of the skin on my hands and feet coming off and cracking open, it started to happen at the end of my first dose of treatment, it was sore to walk....This is the reality of cancer, toxic toxic toxic kill it with toxicity...until you can't take it anymore....this hasn't changed for over 30 years....that can't be right can it?

My plan is to have a consultation in Latvia and then if I go ahead, I will crowdfund for the treatment costs, which could run into the thousands. My kind friend has set up a crowd fund page for me and it is ready to roll out when necessary, i just hope I can raise the funds...

Anyway mean while real life chores continue ...I have to tidy the house after a 'pink' cake sale yesterday, bulging charity boxes need counting, which is so nice and makes me feel very humble and grateful, there is glitter everywhere....but it makes me smile as it is my daughter that has sprinkled it around the place...my daughter....constantly on my mind and about to get a diagnosis for an ASD finally after years and years of fighting for it, but finally in time for secondary school, she will go armed with it to support her through 'those' years, which can be difficult for neuro typical people let alone those with an ASD....I could rant on here for hours but I must go and be productive, thank you for listening interweb xxxx

Inspirational people

I can say with all sincerity that mindfulness and buddhism has had such an influence on my well being and my desire to share a life of love and compassion and it has perpetuated into a ball, like a giant snowball, descending and gathering speed getting bigger and bigger, I have picked up people like snowflakes, that have stayed with me and have guided me into fulfilling directions.

This phenomena (my word of the moment), continues all the time I 'let go' and don't over think situations and just be guided by what feels right and surrounding myself with those that feel like they belong with me on that journey.

Since my diagnosis, I have let go of all expectations of my future and have just followed like a meandering stream, where my heart takes me.

By doing this I have come across some beautiful people, it's almost like in the 'Matrix' when Keanu Reeves suddenly realises that everything in the world is Binary code. (well it's not quite like that but I am feeling full of mataphors this evening)!!

It's like everything has a message for me, to follow where my heart takes me and that is what Cancer has done for me. I am sure it has been said before by various people (cancer whisperer springs to mind and others) but Cancer has in effect enlightened me.

The amount of supplements that I am taking and turmeric and drinking water I have slowly come off of my anti depressants and am now 'freestyling' and I feel so on top of things and so energized and empowered. I now have a gentleman who is very interested in me (which seems like a miracle given my diagnosis) and I have 'actual' people who are interested in my business concept and ethos and want more of my products and want me to do talks and workshops, it is my passion and my passion is spreading and the people I have met are supporting me and want to help spread the word. I can't tell you how rewarding that is, to think that people want to learn about making their own environmentally friendly skincare, and who want to buy more of my products and who actually think they are great. I have to really sit down and make the most of this situation and focus on how this could work and perhaps as a collective we could make a difference to the skincare industry, and the environmental impact of packaging. Exciting times.

However, this morning I was a mess, I went to look for secondary schools for my daughter and I became emotional, the fear of not seeing her grow up is immense....but then this afternoon the smallest of deeds, an act of kindness from one of my customers turns my cancer filled world around and shows me a much bigger picture.

OM to that I say xxxxx

Let the good times roll

So today is the day I pick up the drugs, the chemical drenching to throw down my gullet with gay abandon. I have made a strong eczema cream using colloidal silver and liquorice root. It is poised ready to prevent my hands and feet from getting sore and cracking due to the capecitabine. I also sent the very difficult email to my university acknowledging that I will not be returning to finish my degree. A small reminder of a life I was going to lead, the excitement of studying and working towards an interesting new career deleted like an old document.

From the ashes I focus on a business idea for earth and body friendly skincare and trying to save the planet lol!!

Also when you have a diagnosis such as mine you also have to navigate how those around you deal with it (I have to be careful what I say here as my mum reads this!! Lol) my father decided it was not suitable for me to go on a date as it would 'compound my problems' ......aka 'i want to wrap you in cotton wool' I told him I am 42 and not 70 and that just because I have cancer it doesn't mean I have to stare at the same 4 walls until I slip off this mortal coil.

You have to grab and squeeze every last drop of fun and happiness out of life and some people find that hard. Cancer has a big reputation for projecting images of gaunt bald people waiting to die. Inside those images are people, souls, beings, humans who want to live and who have strong wishes to live harder and stronger than those sentient beings walking in blissful ignorance of when their particular number is up. They want to put on Anna Matronic at midnight and dance around the kitchen sometimes, they want to buy a bell tent and convert a van into a camper so that they can run to the sun for holidays and festivals where more disco dancing may actually happen. To share happy memories of adventure with their daughter or whoever else wants to be part of those. You cannot put them into a box and label it 'cancer' and put it on a sterile shelf with dusty photo's of a previous life. It's a new life with no shelf in sight. There will be a time where the gaunt image appears but that is what it is, an image,  inside the disco will be playing and the sun will still be shining brightly.