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