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