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