If Only.....

I was obsessed with Wonder Woman as a  4/5 year old child, so much so I walked around in red wellies, blue pants (with cardboard gold stars on) and a red vest. A fantastic outfit my mum had cobbled together, she even made me a gold cardboard headband, I stomped about in my wonder woman garb like nothing could defeat me. ( first child syndrome possibly or something :)

I really want to see the new Wonder Woman film to see whether the film has the same magic Lynda Carter had for me. It is great to know it was directed by a woman.

Trouble is as you get older you realise that some things even Lynda Carter can't sort out, I am desperately trying to channel her, polishing my wristbands, practicing my lassoo etc.....

We are all born with this assumption we will live forever, it is strange but necessary, even with a rational mind your very being is programmed to assume you are going to live no matter what.

I am so scared about having chemo, daily until it stops working, it just doesn't sound right, I have been looking at going abroad, at different scenarios, trials everything to avoid the conveyor belt of chemo that is prescribed until the cancer mutates so much there is no more chemicals left to fight it. I have managed to get on a trial at the royal marsden but I have a 10% chance of having the correct mutations in my cancer for it to be treated with new therapies, meanwhile i am not being treated with anything except a list of natural supplements I have managed to draw out of my Lynda Carter style velvet kitbag  such as turmeric, oxygen based cellfood drops various oils etc etc broccoli sprouts etc etc ..... The hospital offered to get me on Capecitabine but if I am going down the trial road I cant start that and it's not something you come off of once you are on so you cant try alternatives.....

I am looking at starting some oxygen therapy soon to try and help myself before I go to the Marsden.

All the time I hear the distant sound of a clock ticking and I swear I can feel every little ache and pain thinking, there it is,  growing again ( in my not so rational mind).

I am sitting here watching 'Spider Man' with all those seventies and eighties memories thinking why can't I have some super powers please, I would be really good and use them for some really good stuff as well as help my daughter grow up....as long as it would get rid of this unacceptable mutation of my own cells, which quite frankly are not quite the superhero type of mutations I once dreamt of....

https://www.youtube.com/watch?v=nx2JdJhAL94

Getting back in the saddle

Had my meeting with the Macmillan Nurse on behalf of my oncologist who is on holiday to discuss my CT Results and moving forward. I was as you can imagine emotional and also angry, not a great combination for me really or those in my path...........I should have had a scan in May....I had told her I was in pain specifically in my liver, but at the time she was more concerned with my ability to cope mentally and wasn't interested in my pain. This has obviously caused her abit of pain now as I am reminding her of this and the fact I have had alot of treatment in the past (again) and that I had full body radiation (again) and that my body and my cells are all abit mutated as it is, hence why I didn't like the idea of chemo as my belief is that it will make my cancer more aggressive.....which I would argue it has, it has been less than a year since I finished my last chemo and it is back where I had the RFA and there are new lesions. The nurse seems to think this is not aggressive. Anyway there was lots of arse covering then we managed to calm down and move forward. I told her I was looking at Latvia and immediately horror stories were reeled out people dying in Germany....etc etc, I also enquired about what I now know to be PLASMA MATCH trial. http://scienceblog.cancerresearchuk.org/2016/10/21/the-perfect-match-making-breast-cancer-treatment-more-personal/.

So I have been put forward for this as in her words she claimed 'I have to win back your trust' I had told her I don't want chemo I want targeted therapies. So the plan now........Plasma match trial ...get on it at the Marsden......then if that fails, crowd fund myself to go to the states for the latest immuno therapy course in California.

Weirdly I had a fortune teller experience recently that said I would do some travelling ....watch this space.......

Getting back on the increasingly big horse, feeling my strength return and the regime of Turmeric, cellfood, hemp tincture, mistletoe tea, dandelion root and frankincense get reinstated with vigour. Drinking lots of purified water and having faith in the universe once more that I will make the right decisions whether the medical profession in the UK like it or not. I have free reign from my family now, I think they understand as does my macmillan nurse now that I do know my body so spookily well, and i don't have time to mess with long term oral chemo treatments, lets load up the big guns and see this cancer outta town.......

Back so soon!!!!!?

This is the only way i can describe where i am right now. A drift in a blizzard of numb ice. The stupid thing is I knew it wouldn't be long before i was back, back harping on about this blasted cancer again. The last few weeks healthy eating has gone out of the window entirely, even forgot the turmeric on occassions, i was making the most of the calm before the storm, before i have to work hard to be healthy again, concentrate on the supplements and do my best. Yes it is back....the letrozole has stopped working although to be honest i am not sure whether i was checked to see if it ever did!!more lesions on the liver, despite the turmeric. i knew, months ago i have been having pain on my liver I even told them about it, but they didn't check it, not until now, infact my gp gave me medicine for reflux (shakes head in despair)!!. I am to take capecitabine, an oral chemo....i am not happy about it, it makes me wonder whether chemo is making the cancer more aggressive as it has taken very little time for it to grow new lesions since my last treatment. So I am formulating my plan B and researching Rigvir in Latvia as a serious option. I may have to look at crowdfunding myself, but I have a strong belief that my chances would be higher with this treatment. My Onc says 'do you not think we would be using it as oppose to chemo in the UK if it worked' I don't buy this for one moment, NICE,  are funding immuno therapy for triple negative BC but not ER+ secondary, it is a postcode lottery of funds, they dont rely on other countries research only their own which is why we have been stuck in a chemo time warp as they won't fund adequate research. I have seen women go down this drawn out path of chemo ville and it never ends well. Short of asking for a transplant i dont know what choice i have. I am going to ask them to scan my brain too as they haven't done that yet, i am worried about recent headaches......... There I was thinking about dating again.....PA! While i lie in bed with my daughter and my dog at my mums house, my family and my friends are all that matter now and once again my world has become very small, a terrain of cavernous chasms of ice, steep drops and little else....I am gathering strength though, I am not going to give up.