Unknown Adventures

So I had my tattoo, I am soooo pleased, especially now as it is healing, the green stands out more. The green is the colour of the day I was born, Wednesday (full of woe, lol), traditional yants have different colours associated with them and are related to the day that you entered into the world of the sentients, my beautiful Sak Yant. I had it done on the buddhist festival of Vesak, the full moon celebration of the birth, life and enlightment of Buddha. Those years under a tree meditating led him to the place his mind had searched for and he at last found inner peace. Where is that place? I have a feeling it is deep inside humans and not in a pearly gated heaven filled with all that we have ever dreamt of, watched over  by a holy figure allowing us the privilege of being there, why live our lives in the hope of entering something we have no evidence of when we can actually revel in the glory of our planet, in the here and the beautiful now. *Here ends my patronising, trying to be spiritual, attempt to be deep, paragraph (sorry christians.....)*. I say this as I have a militant christian uncle who really does live his life for the after life in the kingdom of god and looks upon his life as a contract with him/her.

When I was travelling Nepal was one of those places I fell in love with, the people the scenery it was truly a beautiful place. I can still hear the tiny waterfalls and streams and imagine the sunshine as it hits the water nurturing the tiny shimmers of gold light that emanated from them as I descended the peaks of small mountains. The sounds of unusual birds in the dappled woodland at the foothills of the Himalayas, the magical sunrise of the fishtail peak of the Annapurna Mountain range. The crisp air and trapsing up to view it at 5 am in the dark. I would like to go back there, I am sure, sadly it has changed, not least due to the tragic earthquake that killed 8000 people in Kathmandu, but also I fear that Starbucks maybe on every foothill now.

Mentally I seem to have reverted back to the mindset I adopted when I was travelling, I guess my diagnosis has freed me from the constraints of everyday living and getting older and all the mundane thoughts associated with that, and has allowed me even more, to 'live for the nooow' (to quote Waynes World), (not that I didn't before). While the news of my liver is so good to hear, I am not allowing the shadow of Metastasis, or the words 'stage 4 incurable' any of those miserable words restrict me. It may not be beneficial for my credit card but I have decided as I am not going to be able to go abroad this year, to purchase a tiny teardrop trailer caravan and ;live out a portion of my camper van dreams, so that Poppy and I can go on a whim for adventures together. It is not the high tec camper I dream of with all the  bell tent and the proverbial whistles, but I now own a giant ti pee a portable wood burning stove and very soon a little teardrop trailer :) I had the tow hitch fitted today and am EXTREEEEEEMELY excited, first trip will be booked imminently with friends to Whitstable. Who needs Route 66 when you have the M20.........

Paaaaaaaartaaaayyyyyyyy!!

Yep it's good news, how did you guess!! Shouting from the rooftops as per usual !!! My liver is a 'no trace of disease' zone just listen to the funk in the background........ I am dancing baby!!! (this is the bit when I step outside and get run over by a bus) lol!!!

No seriously, they called me in and sitting there was the registrar (nothing like abit of consistency, but then I guess I am a non urgent case now). *does little on the spot night fever dance*....

She told us the good news regarding the CT (that I had reminded them about as I had not had appt through before Onc appt and so they had to request an urgent CT).  She also told me they want to proceed with another lot of 9 chemo's of which I questioned. I am not sure i want 9 rounds of chemicals pumped through me, just to 'make sure'. Also I seriously seriously think my dosing of turmeric according to my blood work helped, I am convinced. I asked her if there was any alternative we could do without having to use chemo, she mentioned tamoxifen could be a possibility but her view was that all the time the chemo is working is to carry on and drench me with some more (treating symptoms? not cause?) . I asked about my breasts, she had no report of Ct results and my breasts (!?) so she said she would request an ultra sound and MRI. I am hoping they will get on to that and the same results will occur (and of course I will claim it is the frankinsense oil that I have been massaging onto the areas afflicted as well as oxygen gel by Cellfood. (Cancer hates oxygen) and  of course the supplements I have been taking in abundance.

Also the side effects are creeping in, neuropathy in left foot near toes are going numb heavy legs, more tired..... I hate chemo.....it doesnt seem right. Could I put Latvia on my credit card? and go get some targeted  Rigvir and obliterate just cancer cells without damaging any others? anyone got £8,000 lying about? i really really don't want the chemo anymore.....:( Perhaps I need to dramatise the neuropathy abit to force their hand in an alternative action. lottery tickets this week.....I wish this country would hurry up and catch up with the rest of europe regarding cancer.

But for now let's party and thank the universe for the world and all the people in it and lets keep on pushing for a cure I am contemplating contacting Jamie Oliver for a new campaign for healthy nutrition advice for people on chemo in hospitals.....Donuts .......my arse.

Scanxiety

So tomorrow I have my oncologist appointment, she will tell me the results of my CT scan. I am not as anxious as I thought I would be but I know, that tomorrow as I walk into that hospital with my mother it will become real. When I let my mind wander freely onto the path of possibilities it is quite easy to allow the anxiety to become a reality and scenarios of metastasis, options and life expectancy come gushing through like an undammed  river. All of the forums I have looked at giving mets post CT, offer radiotherapy, alternative chemo and similar, all of which I cannot have. So it is like I have jumped a few chapters in the breast cancer book of chemo not working etc to the bit where you are scrabbling around looking for trials and new treatments.

It is hard sometimes as I want to continue the hope and revel in the glory of 'looking well' and having few side effects from the chemo but sometimes I just want to wallow in negativity. Of course you want to tell people how great you feel and you are a survivor etc etc but I also want to square up to faces and say 'you have no idea what it is like'.

My ex, even though I said I will remain neutral and will resist petty snipes of ex, he has no concept of what is going on and as usual manipulates those around him saying how 'well' I am and why he shouldn't have to have our daughter any more than usual. I guess everyone just thinks it is cancer and people can live longer healthy lives with secondaries and I 'look' alright.  I just want to be normal and go back to the 'old' life, being at uni, studying for a career, not some person surviving on benefits, with worrying indigestion having to justify myself to my ex, struggling to get to the top of the stairs sometimes like an elderly woman in her 80's......but then I have to remember, in the guardian there was an article regarding an elderly couple in their 80's that went to the nightclub Fabric and partied until 5 am. I need to remember this when I am struggling up the stairs to my daughters room........

Like my macmillan nurse Clare says 'it's all about up here' as she points to her head. It really is, that is the hardest part and this is what people don't see.

I have hope for tomorrow and the results but then I know if things don;t go to plan and the cancer is persistently aggresive, it will be a very fast process of deciding options. I look wistfully at the care plan the Hospice in the Weald gave me, where you have to decide how things are going to pan out. I will resist putting pen to paper just yet.

 I must get up now, my daughter and I are snuggled in bed she is playing on my phone, perhaps I should not post the negative stuff and should just post pictures of me 'kicking cancers butt' etc etc or perhaps I should not talk about it at all as when you read in the press of celebrities dying of cancer suddenly, the image is painted of stoicism being linked with keeping things private they 'didn't want a fuss', that's very british isn't it? It makes me feel guilty for being open about how I feel and how cancer effects me I don't care if it's weak I don't care if it is seen as attention seeking, it is a big deal, it really is and sometimes it is hard to be brave.

Vorsprung Durch Technik

OBVIOUSLY I am trying to find any excuse to go travelling again, while Mexico sounds blissful and like an oasis of white coated people offering miracle cures at their clinic, Germany is slightly closer. (Although I notice that Rigvir is also in the Bahamas....) Rigvir, my new favourite word. unfortunately the doctors in this country don't seem to be aware of it, they are aware of 'immunotherapy' but only as a treatment for triple negative breast cancer, but this stuff  is across europe and the states like a viral rash. It is as I mentioned before, my alternative treatment of choice.

 http://www.medicalcenter-mommsenstrasse.de/en/the-clinic/therapy-offers/oncolytic-viruses-rigvir - Berlin clinic - Rigvir

I sent a form off today to get some hardcore facts, i.e. the cost factor, just exactly how many readies are we talking here? this is the only block in my path, apart from the fact they may say I am not suitable. I discovered today that there is a clinic in Berlin who use this therapy and so my focus is now firmly placed here. We are fortunate to have a German friend who may help but they are living in Bavaria and I think it may be a trek to Berlin from there!

 I wait to hear exactly how much it would cost to go for this option. I try to steer myself from notions of cabaret clubs, art galleries theatres and the bars of Berlin....and instead of just getting there and back.

Meanwhile back in the bulging supplement cupboards I have added a PH tester ( keeping myself suitably alkalined due to constant indigestion) I test my urine to make sure my levels are within the healthy range and then I take a quarter of a teaspoon of bicarb with water morning and evening if I need to up the alkaline anty. Now, yes I am obsessed and abit neurotic but I have also got some dipsticks to test for RBC, WBC and protein....I know I know, it is crazy but I am treating myself like a machine, and I need to be running at optimum power and efficiency. So everything has to be perfectly balanced.

So my diet is trying to cut out the acid now cant wait for blood results tomorrow ....... I have been taking iron to boost the RBC's so hopefully that will show up.

I have been shockingly tired today I just hope this will not last I have friends over this weekend and one of them has travelled over from France so I must be on top awake form as I haven't seen her for so long and I want to make the most of her.

On a different note of revelling in 'the truth will out', my daughter has been assessed by a speech and language therapist who agrees that she may well be on the autistic spectrum... it has only taken 5 years to get to this point, with her father not supporting my thoughts and instead siding with the school who said there was nothing wrong, I now have in writing by ACTUAL professionals who specialise in ASD  what I have known all along. It feels good to know that I am not mad and that my daughter will hopefully be getting the access to the support she needs and that her secondary school future looks rosier now that her well being is being catered for and allowances can be made for her during these awful hideous stressful tests and exams that give neurotypical children's stress levels a run for their money let alone a child with processing struggles. It really couldn't be better timing for us, a weight has lifted from my shoulders, as I even dare to think about the future. So far, its been a good week, just hope the 9th chemo tomorrow doesn't bring me down too much, I know I will sleep, but I think an extra batch of my protein energy balls maybe required to accompany me !!

Because I can.....

Looking at this picture I think to myself I must get me a long blonde wig. It has been a while since my last blog post, only because it has been the everyday mundane run of the mill attempting to 'have a normal life' kind of time, and busy sorting the garden out. It was my birthday on bank holiday weekend, I had a schedule of plans that I wanted to do. We stayed in a lovely hotel in Rye, drank too much, ate lobster and steak and tottered back, the next day I realised perhaps I can't do that kind of stuff regularly. The birthday had brought nice things and nice people mostly family but it had also bought abit of the duldrums, I had them on my 40th and now they were magnified, so we just sat on winchelsea beach and ate scampi and chips in the sun, that was good enough for me. On Sunday we went for a gorgeous walk on May day we walked four miles in Trosley National Park, wlaking up part of the North Downs nearly killed me I told my friend he was lucky I didn't vomit on his shoes from exersion!! Lol. My 8 year old walked 3 of the miles, the rest were shoulder carries. It is amazing she did that, she is not a child that is out biking or swimming or tennising every 5 minutes she just wants to write books about horses and comics and play minecraft. Between her father and I we managed to get her bike riding (mostly her father) so I am itching to get her out more to Bedgebury, I really don't want her to be a couch potatoe, but her sensory processing has been confirmed by an OT to be needing some assistance and so I have to try and get her out despite the fact she finds it overwhelming. I have a very important report that confirms my concerns regarding my daughter so it will be a big year of trying to compensate for the challenges she faces at school as well as her mother having cancer.

Tuesday I attended my first secondary cancer support group, a group of amazingly lovely ladies of varying ages, and at different stages. they have managed to get funding from breast cancer care to hold free pilates and yoga classes starting in June so I am looking forward to that, hoping they will creep out toTunbridge Wells as they are in Maidstone. we chatted and had a mindfulness session which was great and very relaxing, someone bought up the ridiculous radio 4 discussion on mindfulness causing psychosis and mental health problems. This was a retreat and was obviously in the wrong hands it was held at Vipasna some people have different versions of ' mindfulness', Vipasna is a non verbal retreat. real mindfulness is not complex, it is a mind focussing exercise and eases anxiety. there are loads of simple breath focussing exercises on you tube. You dont have to pay people to teach you to do it.The support group took a turn towards the end, two ladies have been preparing for the worst case scenario as the chemo has stopped working. I felt so helpless hearing their stories, one lady can't move her head because her neck has swollen from the lymph node cancer that is now not responding to chemo, I just felt that this was 'unacceptable' I refused to accept that there were no more options for her, I wanted to throw the viral therapy options in Latvia at her, The Mexican clinic, all the intense diets....something could happen, it doesn't compute that the problem cant be solved. She has kids and a husband, and is about my age maybe younger actually. Another slap in the face and a score for cancer, and another innocent woman that no longer has control on her body or life with the laws in this country as they are. I am going to try and get her email the meets are only once a month...there must be something ......something that can help.

I had my 8th chemo today, I feel very tired, I was knocked out I fell into a deep sleep at the hospital they had to wake me up. I definately feel more effects as time goes on, lethargy more intense, liver pain, indigestion, hope tomorrow my energy returns with the steroid boost.

On the positive I have been looking at my blood results and they are good, white count normal, platelets great, everything great, apart from my red blood count so I am getting some B6 and B12 in the form of Feroglobin again to try and get an increase in the RBC's I checked up aspartate transamin it was 36 and elevated last week.....I increased my turmeric intake due to liver pain and have since found out that this serum is released from the liver due to damage and coincidently the AT went down to 21 this week. I love checking up on my bloods it makes me feel like I have control and can steer things with my bulging supplement cupboard. It could all be in my head but it keeps me busy, I have even ordered some blood checking home strips to check liver.

With the lady with lymph node cancer in mind she said it came suddenly everything was good last year, bloods fab, feeling good no mets......., we are so close to a cure, so close....so close.... and funding for breast cancer has never been so good possibly due to pressure from outside the UK as more research goes on elsewhere with less restrictions on what can be trialed safely on humans. In the meantime if you want to do something whatever it maybe, do it....because you can.....I nearly jumped on a bouncy castle at the hop farm there was one other child on there and I stupidly restrained myself from leaping about on it with her....do it.....