Still waiting....

So, it has been a while since my last post. we have taken in our new family member, our new puppy, she is a cross between a chihuahua and a terrier, she is teeny, but already the centre of our world. Suddenly i am reminded of what it is to have small needy being, a new baby to attend to. The distraction occupies my mind and distracts me from the continuing anxiety over what is going to be happening to me regarding the proposed liver treatment. Whether i will have surgery up at Kings in London or whether i just get zapped in Maidstone....it is looking likely that the surgery is on the cards. It seems everyone involved in my case has decided to go on holiday for a week and so everything has been set back, but two meetings have taken place at kings and the outcome should be known to me by monday next week . Meanwhile I am necking turmeric and dandelion root as if it were an olympic sport hoping that I am containing the cancer or at least doing something to stop it doing anything scary.

The cuddles with our new little arrival have been most welcome as I have found myself feeling uncertain again about the future, and I have to confess i am scared about having major surgery on my liver, so close to my ahortic artery. Having the cancer so close to a main artery is also scary as it would be a super highway  to the rest of my body and therefore needs to be removed pretty soon if possible in my opinion.....mind you what do I know really? i have to trust that i am in the right hands and something will happen for the right reasons and I need to keep a cool head and get on with it. I am going to hospice in the weald tomorrow, for reiki, I told them i have a puppy and may have to leave her in the car, they told me to mention it to the lady I am seeing as they may well invite her in for a cuddle, as they love having dogs in the hospice. an amazing place, so kind to think of that so that I dont have to cancel my appoint, if our pup can bring some enjoyment to others that would make me feel so happy and less guilty for leaving her and for indulging in reiki for me..... Just want the dates of the op, feel like i am treading water.....major op....perfect time to get a puppy eh????

Creative Expression Workshop

I have just come back from a 'creative workshop' at Hospice in the Weald. I have to confess I was abit apprehensive as I had read in some forums that some people felt art workshops were abit patronising and involved sticking on pom poms and the like.  I was pleasantly surprised. There were 3 of us of varying degrees of wellness.  We all had a great time, we didn't want to leave.....Experimentation was had by all and none of us had similar interpretations of the art we were copying. We used oils and water colour.

Every other Thursday I have reiki there too, in a beautiful room that over looks the well kept garden.
it is my spiritual fix, and helps me to calm right down and enjoy the warm therapeutic process while i spiritually geek out with a similar minded lady.

I am going to take my daughter to a creative session on saturday morning, the atmosphere there is wonderfully homely and welcoming and while everyone of us knows what a hospice is there is not a maudlin looking person there.

Here are my pics ( we had an hour )from the session today watercolour tree and Poppy interpretation of Georgia O Keefes Poppy, not finished (bit of a coincidence we were using a poppy)....go there....it's a great place well deserved of the charitable funding that so many people work hard to raise as well as the countless volunteers on hand in the building.
love it HITW.

interesting article that says it all.

I have always found there is something about the pink fluffy brigade despite all the good that they are doing, slightly irritating. the little pink ribbons etc etc 'hey pink sister' etc etc running in mini skirts and fluffy hairbands. it sounds awful doesn't it. This article leapt out at me and reminded me why it is so important that breast cancer research gets the charity funding it so desperately needs, particularly secondary breast cancer. Secondary breast cancer seems to disappear under a giant umbrella and the general public don't seem to hear of it they just hear the words 'breast cancer' in the primary sense which thankfully is becoming more and more treatable. The umbrella however is giant and contains many variations regarding the severity and treatability coupled with each individual body and tolerance to drugs etc.

I asked my oncologist what she thought about me going to Latvia should the cancer return, she said 'You have to ask yourself why if the treatment is so good we are not doing it in the UK'.......i stopped myself from blurting out 'because NICE and the pharmaceutical companies don't want to lose business perhaps?'........this article explains some of the problems in this country, the backhanders that no doubt are going on behind closed doors. conspiracy theory? Absoloutely, because conspiracy is exactly what it is. The other countries within our sacred EU are way ahead in treatments for cancer, people don't believe me when I say this, they think i am being negative, it is true. I am so pleased that i watched the online documentary The Truth About Cancer with Ty Bollinger. While most of it was typically american in it's oTT production it opened my eyes as to what is out there around the world and how as cancer patients we really can help ourselves. The ever declining NHS due to the Chomski derived theory that you just need to stop funding something to take it out of society and the Tory desire to get rid of it to their own ends is further fuelling my fear for the future as an unemployed single mother with an incurable cancer. I have to think very hard about my plan B's, I am even considering moving abroad to be honest although i know that is just pie in the sky as my family are here and my mum is reading this hahaha!! But seriously, it is a concern, more charities will be leant on to support those in need, places like Hospice in the Weald and the Pickering Centre will become places that pick up the slack from the patients abandoned by hospitals. It is down to us, the people to vote with our hearts and to support these charities, the wonderful work of MacMillan that provides invaluable service to people like me are so worthy of every penny and if gratitude could fund I would be opening a giant Macmillan Hospital. Vote Labour in the next election for the NHS that is the only way we can save it. Anyway please read this article and you will see why Latvia is in my plan B. http://www.telegraph.co.uk/wellbeing/health-advice/the-words-secondary-advanced-and-metastasised-need-to-be-as-well/

Bang and the dirt is gone

I think i have given myself artistic license, it hasn't totally gone, there is a tiny scrap of evil cell based carcinoma left. I saw my oncologist today and her usual radiant smile had gone up a couple of notches and my mother and i were concerned that she may actually explode in an intelligent cloud of smiley science. she was very pleased with my MRI results and suggested that RFA (radio frequency abalation) could well be possible. When i approached her on the subject of the Ultrasound doctor saying it had not shrunk anymore she raised her eyes and exclaimed 'i wish he wouldn't keep doing that'!!!
Apparently the fact it hasn't shrunk could be a good sign, in the respect it could be scar tissue from the cancer which is why it is not shrinking further, but the liver has....(or could it be the turmeric? ;))....

So now i clutch in my dirty mits a prescription for letrozole (yes i will be googling this regarding opinions and scientific evidence...) which apparently will attempt to keep the cancer at bay in a hormonal way.

I have been referred to a liver specialist for consultation regarding surgery and I am meeting with the breast surgeon next week to discuss surgery too.

So all in all....a positive day...she said ' it is the best outcome we could have hoped for' words i won't forget for a while.

I feel blessed i feel I can plan again, my career whats next? watch this space

Strangely, Oasis has come on the radio singing ' I am gonna live forever'....if only that were true but currently i feel like a cat with nine lives.

Next Phase

I had the ultrasound and as mentioned in my previous post, the tumour has stopped shrinking. Today I went to have chemo they told me that my oncologist had cancelled it.....I am guessing as there is no point.....it has stopped working so there is no point in putting me through the last two chemical dowsings.

So now I have to wait for the MRI results, I don't hold out any hope regarding the effectiveness of the chemo. From here on in I am trying everything but chemo, I will ask for any targetted treatments if I can have them, i will investigate Rigvir further, and try to think of how I can raise £8,000 to go to Latvia.

The problem with chemo is, as everyone knows, it destroys the healthy cells and can actually make the cancer worse in my opinion as the cancer mutates and becomes more aggressive. I have seen it happen to people I know, you think you are in the clear then bam, it's back and twice as bad cue a more intense chemo and so the cycle begins. I was lucky as a child, I believe my current cancer is an after thought post radiation in 1988. I could be wrong but 25 years post full body radiation, they say 25 years is when tumours can come as a result of the radiation treatment and that was back in the dark ages of radiotherapy in the 80's when doses were probably alot higher, now it is more targetted and less aggresive.

I  need to really get on top of keeping my body as alkaline as possible too, which will involve bicarb of soda and MSM. Cancer cannot thrive in an alkaline environment. Anyway I must go and phone my macmillan nurse and find out if i have an appointment for the MRI results. I am so tired, I just hope my energy starts returning and the tiredness is just a chemo side effect and not the cancer. I am trying to stay positive and have hope in the alternative strategies and surgery. Chores beckon me now, and reluctantly i must follow that calling. 

Keep on going.....(Hope in the green stuff).

Hi it wasn't my last chemo.......I cant count.....or remember..... not overly useful with shops or credit cards.......  So today i had my third to last, which again knocked me out abit due to the heat i think. I also had an ultrasound scan on my breast, i asked if he could scan my right breast too, just to be sure. Kindly he swept over the whole chest area for me to put my mind at rest but....he took a photo of something on the right side, he just said 'just taking a quick photo' .....thanks Mr Scan man like that doesn't worry me!!

Anyway, the cancer hasn't changed.....I was abit disheartened, it has stayed the same after all the fasting and turmeric and alsorts along with chemo although it had shrunk with the first round, you see as soon as the doctor said my hair is growing back because my body it getting used to it, alarm bells went off in my head ' perhaps the cancer is getting used to it too' I pondered....the little blighter is still there, it dawned on me tonight tough I hadn't been using as much frankinsence oil with Cellfoods oxygen cream....

.(why don't I just shut up) I hear you cry....perhaps i should. Have I seriously fallen into the 'woo woo' trap or would it have been worse? needless to say after that I went to smiths in the hospital and stuffed my face with loads of 'graze' snacks, sod the fasting I then bumped into a uni friend and her daughter so i drowned my sorrows in a vat of decaf latte at costa with them (sod the green tea). We are meeting up next week for lunch, she reckons she is going to make me a greek salad, but I am dragging her up the pub :)

So what now? i am hoping for an op on my liver and they may do breast now i am guessing. Then they will try and keep me in remission, if I get there, with a load of drugs of some description.

Latvia is getting closer, chemo is so awful, it damages the healthy cells while the blinkin' cancer sucks it up and evolves. So my mind is gravitating on going abroad where chemo is a thing of the past and targeted therapies are commonplace in europe...lets hope they don't kick me out onto the brexit train ....... My mum even said she would make it a reality, but I would rather crowdfund myself if i could, or try and raise the money. My mother has enough to deal with without me bleeding her dry.

I actually went to a traditional fortune teller on Hastings Pier who said, 'You must accept an opportunity to go abroad' (before he knew my diagnosis). You know me 'woo woo' is my middle name.....

In other news i have located a good source of CBD oil the company are being great to me and will hopefully keep me in regular supply. I have been reading so much about the positive effects of this, I have even spoken to a 65 year old lady in scotland directly who has it and she told me while she was off chem she took it and the next MRI showed shrinkage of the tumour. She was nothing to do with the company and someone i met. If you or anyone you know has cancer i would highly reccommend the CBD Brothers. https://cbdbrothers.com/  the oil really is of very good quality compared to some of the online rip offs you see, just looking at the capsules and smelling them it is clear it is not fake. I have to add the oil is perfectly legal in this country and imported from holland hence the quality. The company recently got a government licence to grow in this country too.

Finally My lovely girl is away with her father for a while and I am off to a festival!!!! I am so excited! going with my beautiful trailer and a rather annoying awning that is a nightmare to put up as a single person, I am hoping for helping hands, i am sure they will be a plenty it sounds that kind of place.

I will whirl like a dervish while i am there, clutching my oil and looking to the universe to give me some luck, positive energy, healing, whatever positive outcome it can organise for me and my family.

Last One

Today is the day........last Chemo, 18th dose of Paclitaxol, I feel abit numb. I thought I would be elated but recent experiences have dampened my enthusiasm and elation. I am sure I can dig out some champagne imbibing joy from somewhere. My final scan is on the 25th of August. I am off for another trip tomorrow post chemo. For a few days and then down to Devon. I send love and thanks to all of those who have supported me, I know I can be a drama queen which can be annoying but I genuinely thank those human beings who stick with me and ride through the annoyances, the true friends that know me and let the other stuff slide. Thank you x a million times thank you from the bottom of my heart x 

It's unfair

This post begins at the top of a cliff, lower coastguards cottages, Fairlight. The mist has enveloped the views, the roads the sea, mist has spread it's damp elongated fingers across Sussex,  drawing a veil over the wind swept coastal world. I have come for a holiday with my family, having just been to another Breast Cancer Support meeting. The last one I attended was in May. I met a great lady then, intelligent funny and with the same diagnosis as me. On the same drug, lived near me had same consultant, a few years ahead of me but we chatted away. We also do ear accupuncture together, she always looks so great and well dressed. Last time I saw her was 3 weeks ago. She walked into the meeting today and I hardly recognised her. She could barely walk, she used a walking stick and her face had drooped onseside, One of her eyes was barely open. There were no brightly coloured dresses, no make up, to say it was a shock is a massive understatement. I couldn't take my eyes off of her despite trying, I hope she didn't feel I was staring.

She was the first one on the group to have the onus of  'Where I am now'.... which opens our sessions together it was plain we all wanted to know what had happened to her in such a short space of time, in good humour she let the story of her not being able to put her lipstick on flow, getting her and her husband lost while they were on holiday because she couldn't read maps, little signs that something was not right. She believed she had Bells Palsy or the beginning of it and as she explained how the onc opened their meeting post brain scan her voice started to waiver and the humour left the conversation. Her cancer had spread to the meninges, the tissue that covers the brain and spinal cord. She had literally gone from fine to this in the space of a few weeks. the doctor had given her weeks to live. the humour returned as with a wry smile she said 'i don't know how many weeks ago that was now' . she told us how she had done an orienteering walk in the lakes post diagnosis she said it took all the effort she had to put one foot in front of the other with the help of her daughters and husband but she did it, she kept on going, climbing hills, walking miles she made herself do it, and her family helped her. she told us, she wasn't scared, or afraid of dying, just of the not knowing when it would come.

I sat in this meeting looking at all of these amazing women and the ability to laugh in the face of such adversity, the strength that each and every one of them had. The ability to keep families together and keep on doing, and living as hard as they could. We spoke about bucket lists. What was on each others bucket lists, what did we want to do with ourselves. I am probably not supposed to talk about this in a blog as it is a private space for us, but I think people should know how brave these ladies are, how strong and powerful they are and they keep going and not fall to pieces, to keep humour and honesty alive. I want to visit my friend in the hospice and spend time with her I know it won't be maudlin, I want to help to do something. It is just so unfair, very very unfair, such wonderful inspiring women struck down by this cruel disease. The double edged sword of monthly meetings brings sadness as well as hope. So many peoples lives extinguished by their own mutated cells. What causes this mutations? Well I bet your bottom dollar there are some chemical reasons on this planet the harm we do to our environment the food that we eat....all of it could be responsible for the premature end to such precious lives. please think today about your problems do you have good humour and ride through them, I know i don't !  Think of my friend, the amazing woman she is, climbing mountains refusing to give up and making everyone laugh in the process.....

https://youtu.be/3oiOMN2NVVM

So more happy, positive vibe channeling gathering strength from nice people and the thought of all the little trips we have lined up in the van of adventure. When we stayed at Bedgebury campsite Poppy didn't want to leave it wasn't too busy, had loads of bushcraft at reasonable prices, had children to play with, and a little shop that sold giant bubble mixture, tattoos, and the ABSOLOUTE CAMPING STAPLE of marshmallows.

I know that we are going to stay in some lovely places this year, and this is where I am firmly placing my head from now on. I am keeping to my ketogenic diet as much I possible (except weekends....weekend is naughty time....the empty pots of Haagen Daz salted caramel will vouch for that) . I have however managed to find a coffee alternative that just tastes like weak coffee it is called 'Orzo' the fact that it is 'Italys' favourite alternative coffee was enough for me, it is toasted barley, it's not bad but I would reccommend stewing it as it is quite weak. (says the expresso drinking queen).

I am meeting a friend I havent seen in a while in canterbury, I love Canterbury, the restaurants are fabulous and I live the 'grown up' uni vibe there, abit like Brighton in that sense. I want to see the people I love over the summer, it is so damn tricky to fit everything in! summer holidays I am sure have some weird unexplained scientific time shift into supersonic mode...it goes too fast and I cant seem to fit everything in! 

Had chemo today, out like a light, blissfully letting my head swim amongst the itunes meditations, dipping in and out of consciousness while the antihistamine switches me off. I had ear accupuncture yesterday in maidstone with the lovely fellow secondary breasties. Again off to my meditation land, ear accupuncture is said to help hot flushes and menopause symptoms, as well as lots of other symptoms. I am also going for reflexology at the Pickers Friday. The people where I live are amazing the local preschool had a fete and raised £800 for the Pickers and a lady in the village is holding an event too to raise money for the miracle working place. Pickers deserve every single penny raised for what they do to make such frightening diagnosis and prognosis so much more bearable. Contact me if you want to attend a fantastic tea party with Fizz to raise money for the Pickering Cancer Centre in Tunbridge Wells and good cause and a fun event with lots of delicious pofessionally made cakes too!! so comment if you are interested, It is being held in a manor house with beautiful gardens.

Happy place is here as is summer so come on let's enjoy.  Love where you live I sure do....'ooh look, another sunset over summer fields while the stream meanders at the end of my garden' perhaps hammock time again to imbibe that vibe of gloriousness.

Fed Up

I have had enough. It's crazy, having read other blogs relating to cancer I felt there was a theme, a time frame, when the depression set in and the 'fed up' just oozed out like a 1950's horror movie, blobbing, and flowing a black glossy mass of feeeeeeed uuuuuupness. I feel I am there and that time has come.

It's been going on a while now, this new reality or new 'normal' I have met it  after the initial shock as anyone would, but I am bored now I  go every week through the same routine blood tests, chemo school run, blood tests, chemo school runs....and so it goes on, I want my hair back, I want my life back, I want, I want I want (what is wrong with this attitude?).....

My daughter has Autism, she is on the autistic spectrum, ASD, aspergers, whatever you want to call it. it is amazing how people get funny when you try and put it out there like you are a bad parent for drawing attention to it, like it is something that should be just 'accepted' by society, IF ONLY IT WERE THAT EASY. It's not about labelling it is about providing care instructions, giving the child coping strategies, to be aware of their own struggles in an  environment within which my child can progress for the future and have support in secondary education when teenage mental illness is linked to failings to recognize the needs of autistic children in primary years particularly in girls, who can be more emotionally vulnerable in this transitional time and who can, as most ASD children can suffer from low self esteem as the innocent primary years make way for teenage anxt and competitive friendships and peer pressure.




I want to run away.......far far from here, where unicorns gallop and fly, and rainbows lead the way to a happy adventure, where my daughter and I don't have to fight, cliche as it sounds but that is all i seem to do, or have to do, it is a MASSIVE cliche, fighting, battling, school, ex.....although my ex is a decent sort and it is very amicable I am very lucky, anger and the bitterness of holding on to the past is never a good thing, as a buddhist quotation suggests holding onto anger is like holding a hot coal in your hand with the intent of throwing it at someone else, the only person you are hurting is yourself.....I need to remember this as right now I am looking at the head teacher of my daughters school and my hand has disappeared as the coals burn their way up my arm......I am monumentally fed up.

Stupid bloody 'new' normal, I didn't ask for a 'new' normal, I was quite happy with the 'old' normal....can someone rescue me please, so I can have a night off of fixing a broken sink as well as myself and my daughter.

Please? Are you there in you shining armour? ........or is that un pc.....

Hideous 96 hours of tummy hell

I have always been a food lover. Since I was 5 years old and my Italy dwelling Uncle fed me blue cheese and red wine at meals in my own baby wine glass. Together with the most amazing canneloni cooked by his Italian chef boyfriend, I will never taste such canneloni again, I can still smell and taste it in my mind it was a dramatic life changing blissful experience. My mum fed me good old fashioned 80's healthy food minus the pop tarts although it was a treat to have a vesta curry or paella, the paella was my favourite and to this day I still get some as a treat for lunch and reminisce (although weirdly it doesnt taste quite the same, I am sure by law they have to change some of the ingredients for health and safety reasons!!!).

I am fasting, and it's an extreme one.

Everything looks like food, people are walking steaks everyone is lucky to still have limbs in tact, on facebook I have drooled at homemade birthday cakes covered in chocolate, watched Poppy not eating all of her tea of sausages mash and peas and carrots desperately trying not to cave.

 It is Wednesday and I haven't eaten since Sunday and have just imbibed water with a clear white Miso soup in the evening as a treat!! I have still been taking the supplements though. so I hope that doesn't damage the ethos surrounding this dramatic non eating experience..

Basically I have been reading research. A couple of friends had pointed me in the direction of fasting as a means to increase the efficacy of chemotherapy. I shall attempt to put the articles in the links list on the right of my blog.

96 hours is the optimum BEAST of a fast, you have to be healthy to attempt it. So there was me thinking, yea I can do that, I mean it's not like I am tired already (!? chemo is messing with my brain) So I decided just like that to drop the food and go for it.

So with water bottle in hand I have supped like a starving calf at their mothers teat for the last few days trying to forget about the intense hunger pangs, trying to convince myself this is for the greater good, to get rid of the damn cancer in it's entirety by knocking out my good cells so they become dormant so that the chemo focus's on the still 'doing stuff' cancer cells.

Today after chemo it was the closest I have come to caving, I could barely walk up the stairs fom the chemo department I had to stop halfway up I shuffled into the shop and went crazy buying alsorts of goodies from  grazes range of delish nibbles and shoved them like a mad woman in my bag. Laura the nurse on Hodu, when I told her what I was doing said 'yep, you are a nut job' Hahaha she said she would be interested to know what the outcome is, infact lots of the staff were interested to know, some of them warned me there is not much of me and this is probably slightly insane, but one of the nurses is doing rammadam so we talked about how he deals with the fasting thing, he  went into great detail about the roast lamb he has after sunset.....hmmmmmmm cheeky :).  Alot of what I have been reading has been talking about the array of health benefits. I remember watching a documentary where a doctor did the 5 -2 fasting where you have 500 calories on the 2 fasting days. This sounds much more sane and has alot of benefits too. If you have had cancer it could be something that helps  to keep it at bay for the future.

After my father drove me home and helped me into the house as I could barely stand I slightly caved and drank a whole pint of milk!!!! ( I usually hate milk on it's own). Then slept for most of the day.

After the fast I am embarking on the Ketogenic Diet, cutting out carbs as carbs become sugar in your body and sugar is a big no no for cancer. I have invested again into another purchase for the ever bulging supplement cupboard Organic Stevia a sugar substitute which has ZERO sugar in it and is very sweet. It is basically a leaf and I have actually bought the seeds (bulge bulge) to grow my own and dry the leaves to make my own stevia sugar. Agave and Date syrup are also good substitutes but still have some sugar in although nowhere near the sugar that refined conventional sugar has. I made my own elderflower cordial with flowers from the garden and the recipe required 1KG of sugar 1KG!!!!!! instead of this I used 4 tablespoons of Stevia and the result is just as sweet! my daughter has it with fizzy water and she says it tastes like lemonade she cant get enough of it!! This makes me VERY happy. I want to attempt Elderflower champagne but am not sure whether stevia will turn into alchohol........hmmmmm.

Anyway I have come this far and I will continue to the end of this fasting marathon but man, I realise now what some of the refugees have had to go through, this is the last time I do this one, a much less aggressive number next time and what will I be doing this weekend after I have been gnawing my own hand off? Cooked breakfasts, roast dinners, snacks, food food ...........food glorious food.........................If only everyone had this option....

more sleep please

So my caravan was collected on an adventure to Derbyshire. It was frought, but we all arrived in one piece. We were stopped by two people on the same day wanting to know where I had bought it, much chortling occured on the M25. Overtakers couldn't quite believe what they were seeing as my vauxhall corsa sailed by towing a miniature caravan...it is cute beyond belief, I loooove my baby and want to keep her safe, Myrtle seems to suit it as a name but Poppy insists on cloud fart.....or pooh butt....

In other news, I had my oncology appointment today post MRI and Ultrasound, as I think I had mentioned in a previous post, the initial disco dancing regarding no evidence of disease i felt perhaps may have been presumptuous given that the liver biopsy indicated one lesion measuring 10cm which would'nt have shown up on a CT scan as it is different imaging to the Ultrasound used in the biopsy. I requested an ultrasound through the Onc's secretary and explained why and a very thorough MRI was carried out. As expected, the onc explained that the lesions were still there but had responded to chemo( good job I sent email or I could be celebrating no evidence for the next few months/years!!), she didn't give me precise sizes she said thay had reduced in size. Upon my request she had also checked regarding the Radio frequency Abalation as they know I am not chemo's biggest fan and any targeted treatment to me is a better option. She explained that the lesions are right next to a main artery to the liver and another *important* exit . Just my luck, i remember the very talented (and extremely good looking) surgeon in the biopsy reeeeeeeally not wanting to do the biopsy because of this and the risk of damaging other organs as they are also near the gallbladder. So the final culmination of the meeting led to the agreement that due to me being halfway through chemo i am to continue and hope for further shrinkage if the one near the artery disappears they may look again at frying  (do you want bacon with that?) eeeewwwwww.....

I feel abit numb, abit deflated, abit sad, abit sentimental, abit like this is now real and my new normality and the novelty has very much worn off. I am also very grateful that the chemo is actually working and really i should focus on that. As a child I was in remission after the first round of chemo, i guess I was holding out for a similar situation sub conciously . Also the chemo is really doing it's worst now I am finding it hard to do as much as I was doing last month, the onc told me to expect this to get worse.....this is like a red rag to a bull so I am implementing chi gong as of tomorrow...and more protein energy balls...raaaaaaa chemo why you little grrrrrrrr. I also have the beginnings of neuropathy in my toes and one of my fingers, they are going numb but I guess I need to crawl to the finish line ....in another 3 months......
I stupidly watched 'Holby City' tonight, tears streaming, the storyline re Arthur has been sad (and has a lot of artistic licence) but  it was abit well, close to home, my mum won't watch it, I also watched 'Cancer and me' documentary and depressed myself even further.

After Onc appointment, I got home and found a message from a support group asking me along for a girls night out....I sent them a big fat 'YES' I need a night out, i need to dress up and get out out!! I am keeping my eyes open for local festivals to take 'Myrtle' too and fun things for Poppy and I to do with her I would love to do a survival skills course with Poppy or bushcraft or something I reckon she would be good at that.

So I am off to bed, today the steroids were given at 4pm roughly and i will struggle to sleep....looks like a nightcap of valium tonight then *Soft music plays -'why do birds suddenly appear, every time you are near' little glittery sparkles surround my head *aaaaaah ahah ahhhhhhh close to you*  aaaaaand relax........

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.....

Ty Bollinger

So....Ty Bollinger is an american who has spent years researching cancer, alternative treatments and flying the big pharma conspiracy flag. I have to confess I was sceptical, I am not sure how I got hooked into his online docu series 'The truth about cancer' I must have clicked on something somewhere, most probably facebook. 

Initially, the americaness sort of reminded me of the charecter in Donnie Darko played by Patrick Swayze, claiming to be a healer in an over the top evangelical way, waving his hands to the sky and claiming god had put everything here for us to use. The docu series itself has elements of evangelism, but it has piqued my interest.

Each episode is 1 and a half hours long and travels the world speaking to various doctors, specialists, professors, homeopaths, juicing queens.....all of whom are offering the latest in alternative treatments, nutrition and magical cures. I have watched 5 episodes so far.

Some such as homeopathy, i don't even bother to watch and fast forward through, i know homeopathy is not for me as it just doesn't make scientific sense. So far though, the revelations that have caught my little eye is the clinic in Mexico, a viral therapy in Latvia and Denderetric cell replacement in Germany. The diet advice has been interesting too and I have bought supplement after supplement on Amazon that has been recommended, where I have thought that the claim makes sense. it's like a 'cure your own cancer' pick and mix.

I would recommend to anyone with cancer in their lives to watch this series with an open mind, bits of it may not be for you, but ideas can be cherry picked and seeds can be sown (and sprouted and consumed.......... broccoli sprouts.......very good apparently)

I am just thankful for any sensible offers of hope from sources that don't involve chemo or radiation. The supplements I have been taking may or may not have been responsible for my 'normal' white blood cell count, but that is what i have had throughout my treatment so far, with little or no side effects the only side effect being lethargy. I feel good, when I start to get indigestion or something i alkanise my system naturally.

With the meeting with my macmillan nurse around the corner I am now going to be taking a new list of supplements for the pharmacy to check out and also questions involving alternatives to chemo, as more and more I am questioning whether there are better treatments available that don't destroy the healthy cells of the body vital for absorbing the good food needed to heal. It makes sense with the turmeric I have been taking that my WBC will be good and that my red cells may go down, which has been the case for me. I am now taking feroglobin to boost the red cells, the only thing is it has leisin in it which I have heard is not good for chemo so I do need to make sure what i am doing is of benefit by getting feedback from the pharmacy.

So the research continues......along with the formulation of a business idea, if I am going to be kicking around for abit longer than I originally thought I need to start thinking what my career move is going to be. Interestingly, with this diagnosis, with the mindset that goes along with it, the liberation of the mind to remove the restrictions that we place on ourselves, my idea of a career has changed completely. Yes I am making future plans, yes I am taking control of this....I just need to win the lottery.....

por favor me hacen bien

Well it has been a while, mostly because there has been nothing to report, except the daily weekly grind, and peaks and troughs of lethargy. I have been concentrating on my daughter, who has needed extra support. I have had to have an occupational therapist to assess her as it is believed that she has sensory processing issues, and I believe this is causing her anxiety at school, so it has been a costly but very worth it venture and we should be receiving the help that we need now. Anyway back to the blog......


I had my 6th Taxol Sess, (notice I am down with the 'cancer' lingo ) this time was really ok,  I slept in the clinic and listened once again to my healing meditations. the staff are lovely but forgot to give me my steroids ( to stop a reaction to the chemo) luckily I remembered before I left the hospital and was able to get them, before I was taken home where I could collapse for the afternoon. my daughter and I have been nurturing our vegetable seeds with great vigour and she has enjoyed watching her pea shoots and rainbow chard shoot up, she has been checking their water and we have been discussing what the next stage is. It really warms my heart that she is getting involved with this I am determind to teach her how to grow food and look after the planet. We are going to do a beach clean on Sunday, to rid the beach of plastic, it's an event organised by the 'Surfers Against Sewage'. Plastic is a real problem in our seas and some of it that gets washed up dates back to the 60's and 70's!! imagine what the future holds regarding that.....Anyway sorry I am obviously going of on 'daughter' tangents today...back to cancer .......

I watched a documentary today called 'The Truth about Cancer' it was interesting (american) and gave great history regarding big pharma companies and the FDA in America, there is a vast conspiracy and the film explained all of it and where it had all come from, dating back to the second world war. It also travelled the world to interview nutrionalists and herbalists all who have Phd's and have studied cancer and alternative treatments. Some of it I lost interest in, but I guess it is part of a series of online films and it needed to lay the foundations for the rest of them. I am sceptical about totally going for alternative therapies but I definately see the place for nutrition and scientifically proven supplements. One thing the film threw up was a clinic in Mexico that specialises in alternative treatments, the laws there are relaxed and really exciting treatments can be tried. They have had amazing success rates, there is however a risk, you are trusting the doctors but in my mind I would be very willing to try this approach having had my life dose of some conventional treatments as a child. So I am investigating this, I have sent off a form for a free treatment plan (before the big bucks start getting mentioned). being a stage 4 cancer patient, I am doing everything I can to be around for my daughter as she grows and the idea of flying out to Mexico to be 'fixed' with natural stuff is quite appealing....The finances won't allow I am sure, but perhaps I could jump out of a plane and raise some funds....

I have a clinic appointment next week, I hope to find out when I will be scanned, as I am becoming anxious to know what is going on with the cancer blighters.

I have been monitoring my bloods weekly and keeping a record. My tumour marker went up from 11 to 13, which has spurred on this surge on new information regarding cancer and the formation from stem cells and how chemo works etc as it could be quite possible in the words of Richard Ashcroft, 'The drugs don't work'.....

Chemo number 5

https://www.youtube.com/watch?v=YeqOLxRDsV8


Yea baby! Chemo number 5 on a mambo tip. It feels good to be heading towards the end of this first round of 6 chemos before my scans. Yes I am tired, the accumulation of chemicals in my body, leaves me drained. Today was chemo day and I plugged myself into a healing meditation on my phone, the anthistamine makes me very tired, and so I was taken away into deep meditation very easily, I was completely somewhere else until the poignant moments of the visualisations.......I do however have this deep fear that one day the whole ward will be treated to Kelly Howell and her american visualisation programming for the mind when my bluetooth fails. On my 40th birthday party I stupidly allowed my daughter freedom to choose from audio files to play on giant party speakers.........yep you guessed it all of a sudden I heard the dolcite tones of my meditations come swimming over the airways....and like an episode of 'Miranda' I went bounding over in slow motion to turn it off, cocktail in one hand index finger poised for sudden button pressing on the other...........

Most of my fellow patients in the HODU (haematology, oncology, 'something' unit) are much more interactive and chatty and probably wouldn't appreciate being taken up some remote mountain (probably in tibet) to discover a round building where they can go in and sit in fur rugs and make affirmations about getting well while balancing various crystals, they would rather have a cup of tea and biscuit and chat to each other or read, and why not eh?

Last week I nose dived after chemo number 4, and this week, I certainly made good relations with the sofa again, covered with a fluffy blanket I was acutely aware that I was becoming familiar with the schedule of the daytime tv....and the bombardment of various hunts, various quizzes...but mostly hunts....lots of hunts and auctions of lets face it...quite alot of tat, and there is only so much tat one can sympathetically look upon with an enquiring mind,  and anything that starts with people wearing t shirts and some naff music...its enough to make your toes curl...sorry bargain hunt.*cringe*.

Anyway, I have decided on my next cancer curing adventure, literally I had read online about choirs being immune boosting and helping cancer patients, to be honest who cares if it is, it makes you feel good, especially when they are joyful fun songs, Stevie Wonder, Funk, soul, Harmonies, Folk, I would be so up for that!! It would be lovely to sing together with people to music. So I have put it out there locally to see if there is anything like that or if anyone would be interested in starting one. I can't sing for toffee, but what the heck I say. As I typed it into facebook, the item came up on the news and how research has revealed the benefits of choral singing. So if anyones interested? let me know!! Would love it if musicians joined in too. Talking of choirs....I love the Spooky Mens Chorale, if you get chance to see them please do, they are brilliant and talented and very funny...Bah'ri Gibb

The 'D' Word

It has been a day of trying to keep my daughter away from the dreaded screens. We managed some time in the garden to plant seeds and prepare her raised bed where she is going to grow strawberries, peas and rhubarb chard (her choice)!. it was lovely in the sunshine, at the bottom of the garden by the river, and with the new shingle for the veg area, it was like being by the sea. I have no car at the moment, so we have been unable to get out and about, so we are staying in and within. My daughter is growing so fast, she is becoming more independent, she is even doing things I ask her to do when normally I would get a mouthful or a sorrowful story of how tired she is! I am so proud of her, as I watch her grow, she is her own person and she is growing into her skin.

At intermittent times I perused facebook, as you do, I get regular feeds from various secondary breast cancer forums which I like to keep a breast of (fna fna).....mostly you have loads of positive information and shared experiences, encouragement and support, I am not overly vocal on them, I shared an 'anti cancer smoothie' book on one once and it was met with a lot of negative comments confusing my post with a claim that the smoothies were going to cure cancer and that I should not give people false hope. So I decided not to post anything further but would just support and listen and not force anything onto people. Today a husband posted, saying his wife had died and he wanted to let everyone on the forum know.....it resonated with me, and made me feel an acute sense of what all of us women in this situation are going through. It was a reality check, yet again. The fine line between life and death in the hands of mutated cells and how prolific they have become.  I currently feel well I am dealing with it, but today I felt vulnerable, I have no car and I guess the thoughts after a day with Poppy and reading the husbands post got me downward spiralling on the notion of the big 'D'. Ronnie Corbett died today, another face , a person from my childhood, always there in the background of our family life, sitting around on a Friday evening with my family and my grandparents eating crisps as a special treat and watching the two Ronnies together. Offering around liqourice alsorts inbetween comedy sketches...

It has been a year of losing many childhood humans of light entertainment and the music business, people that have weaved their threads through the fabric of my and so many others lives. All of them travelling the road of the big unknown 'D' word, reaching the end of their sentience. David Bowie of course, writing an album in the last year of his life, knowing it would be his last. When I was first diagnosed, I listened to black star alot, it was a real work of art, a communication of what it was like to live in the shadow of death, 'I know something is very wrong, the pulse returns the prodigal sons'-I can't give everything away- Black Star. It was a real testament to a great artist and I love the way it trickles quietly beyond his grave, over the radio waves, becoming more mysterious and more magical everytime I hear it.

Video to Black Star


Then this mans wife...who fought to keep hold of her time on this world, her story I am not sure of, but I am sure she had days of darkness and light, that perhaps those that's light is extinguished suddenly don't have, they don't possess that knowledge that she has, she lived with, and counted the days, the hours, not knowing, being afraid of what is around the corner, or perhaps she lived with gay abandon, sticking two fingers up to it and doing everything she wanted to do and loved to do.

For all of us sentient beings, young and old rich and famous, it comes to us all, but being diagnosed with cancer is a cruel time bomb but it can enhance the senses and give you sight you never had before, Oh, I'll be free
Just like that bluebird
Oh, I'll be free
Ain't that just like me? - David Bowie -Lazarus-Black Star

RIP Joanne Hodgkinson.......

and she's down

Round 4....I have come down with my daughters bug before I had even got to the hospital for the fourth round of chemo, throat, tiredness, cough. I had, had a week off. Which was nice, enjoyed drinking lots of real coffee and wine!! (I try to be good while on the chemo...I lay emphasis on the word 'try'!). My legs had started to have that weird heavy feeling that they warn you about with paclitaxel. Tingly feeling in the feet and hands could all be a sign of the onset of neuropathy, a condition that could leave permanent nerve damage so I have to be on guard for symptoms of this, should it happen they will reduce the weekly dose, unless it is really bad in which case they may have to look at other options. 18 more chemos to go......

My oncologist confirmed that after the MRI and CT they will then exaamine whether they feel they can move on to microwave abalation (YAY!!) In a weird masochistic way I am hoping to have the little cancerous so and so burnt out of me with what I imagine to be a life saving magical probe thing, delving into my liver like some kind of superhero, flames at their heels as they nosedive through the damaged tissue. Rather than drenched in more energy zapping chemicals, it is indeed a blunder bus approach but I do of course see the reasoning behind it, mopping up every little tiny so and so hiding in the nooks and cranny's of my being drenching them with poison, and hoping all of the goodies don't suffer while the baddies take a proverbial kicking. I will then look to have the 'Knockers' chopped off and some decent puppies in their place......eventually. It's the liver though that can be a spanner in the works. Thank goodness it is a big hulk of an organ, but I worry that the 'met' (cancer speak for metastatic cancer) is very close to other organs.

This time it got me, I was exhausted, I just wanted to curl up into a ball and sleep. My mum thankfully made us lunch and gave us some food for tea. I won my 'good mummy' points with P at the weekend, visiting farms playing egg hunts in the garden, now it was time for me to crash and burn as far as the mummy of the year award was concerned...... I lay on the sofa and fell into a deep sleep, unable to move from where I was, unable to summon the energy to raise a an eyelid let alone a finger. I looked in the mirror.....time to up the anty on the complexion hiding front, finally my face was taking on the famed 'chemo grey'.....I look shit and feel like it too. The bloods came back and were good my white count good, red cells, good, platlets good, everything came back great. I put it down to the strict intake of copious amounts of vitamin supplements and weird algae stuff. I always take a photo of the blood results on the computer screen, and despite them not mentioning, I always look at the tumour marker result. Last week it was 11 and this week it was 12...I asked them about it. CA 125 is what I need to be looking at so I googled. Obviously I have had a week off and I wondered to myself if this had made any difference, a small increase is not a reliable indicator that the treatment is not working, (apparently...according to google). It sort of hosed on my furnace though, I started to realise I can't control it, despite all the hideous dandelion root tea, the 40 degree 'hot' yoga sessions this one is out of my hands, no meditation and no chakra cleansing, is cutting it. I have a disease that has a mind of it's own, cells of it's own not related to me as I know it. Time to bring on the big guns, The bold claim of cancer curing involving biscarbonate of soda MSM powder, (see side bar of links) manuka honey..I tell you what bicarbonate of soda is all you need for literally anything from cleaning your oven to curing cancer! I have decided I need to buy myself a barrel of the stuff......if only it was that easy......I am not giving up though.....oh no......I will get up everytime, it may take my body but it won't take my mind, it is so important to keep a calm mind throughout this whole process. Easier said than done sometimes. The MRI is drawing ever nearer and here lies the truth of whether taxol is working or not and here I have to place my focus....(still will be looking at tumour marker next week though!!) :)

The Monkey

The tattoo arrived!! I am so happy. It is just what I had hoped for.and I cant wait to get it done, I just have to decide on the colour, it is not going to black as that's not good according to my reliable source.

Sunday I had 'Hot Yoga', when I booked it, I thought to myself, i would enjoy the yoga and more importantly yoga nidra, 1 and half hours of deep meditation (i.e. smothering yourself in a fluffy blanket, fluffy socks a hoody while lying on your yoga mat and being verbally pursuaded by the designated yogi into a deep, deep relaxed state equivalent to 6 hours of restorative sleep) I guess I hadn't focused on the 'Hot Yoga' bit..........It was a bit of a shock..an hour and a half of intense yoga in a room of 40 degrees. Phew...any chemo residing within my weasly frame was wrung out like an overly used flannel, cascading on to the floor before I even had time to reach for my towel. One gentleman, had to leave the room as he just couldn't take it any more. I began to think to myself that perhaps I wasn't being sensible, but I persisted anyway, contorting myself into poses and aligning my chakras, intent on 'doing myself good'. The 'nidra' was most welcome, and was possibly the deepest relaxation I have ever felt, time became an elastic band that stretched to an hour and a half but the band itself felt like a blink of a very weary eye.....I survived anyway and walked like John Wayne back to my car.

The following day I was zapped completely, reflexology was blissful and my muscles were like butter,  Miki was so positive to me and gave me such positive thoughts, she told me that she felt my mind was calm and that I had no energy blocks .....(well no energy whatsoever I think lol) I told her I felt calm, and thanked my beliefs for that, it is a cliche, that in times of serious life situations that our individual faith or belief comes to the fore. It may not be the same for everyone but for me I am a spiritual person, and while I don't believe in a God, I have beliefs, beliefs of the mind and buddhist philosophy as well as nature and scientific research and evidence based knowledge. Some may say you cannot be spiritual and scientific and must always search for facts and believe in nothing else, the fact is my approach works for me, it gives me hope, optimism and a place to go to heal my mind and I am so lucky that people accept that and don't feel the need to criticise what gives me solace in this stage of my life.....

Stage 4......why would you really ?

Today I went for my onc appointment, I completely forgot to ask her about the PIP form and what she thought (benefits) I was too busy telling her about my tattoo...she said she fancies one too and wanted to know more about it. She told me that she thought I was doing well and we will continue as planned up to the MRI and CT scans due end of May, which will be the point at which I will know what has happened to the cancers, whether they are taking me over or they have started to disappear. Everyday, I have either diagnosed myself with the next place it has gone to...... or some other hideous ailment.

Anyway, meanwhile back on the ranch in the village where I live and everyday life...my daughter is ill again, it has been going on since January and I know that her emotional turmoil is manifesting itself and it could well be creating some of her illness, but her temperatures are back and she is so lethargic, her glands are up and today I got a blood test for her to check everything is as it should be. I am worried about her, she struggles with emotions sometimes at the best of times and she holds on to information and analyses it over and over again. So i know from the constant questions she asks how it is constantly on her poor mind, I explain it all the best way I can, we read books but she see's through all of that and wants to cut to the chase, she was fine at the blood test, the worst bit for her was the torniquet she didn't like it restricting her arm.

On our return home the front door had decided not to work, this was after the car also decided not to work, so we sat waited in the car for half an hour to be rescued by my brother and my mums husband breaking into the house....it is the year of the monkey, I have had enough of this particular one, I wish he would go back to where he came from and monkey around in another part of the jungle.....

Steroid Stress

I think I have just about managed to have a go at anyone and everyone who have come within a 5 mile radius of me today. I have had no holds barred anger...I don't know whether it is me getting angry with the cancer or  it's the steroids I am on, thankfully I am not on them now for a couple of weeks. I take them to stop any reaction with the chemo. But boy am I pissed off!!! (it doesn't help that I have zero oestrogen too) I have no tolerance for anyone, I think I need to crawl into a little box for a couple of days labelled 'Mad Bitch DO NOT OPEN'....no such luck. I have to get my finances sorted tomorrow as my student loan is no longer valid, my daughter is ill with high temp, so I have had little sleep, she has decided that she is going to regress in the toilet training department too. I know it is probably the stress of what is going on for her too, there is no way I couldn't have told her what is going on but I know she is taking on every minute detail and analysing it and it takes alot of her brain space. I wish I could make it easier for her instead of being the grumpiest mum from hell!

I really could benefit from a punch bag at the moment, I think I might go for a run tomorrow until I can't run anymore, I don't have my girl tonight or in the morning, so a run, some hitting of pillows, some saying of angry words some qi gong then I have a course of yoga nidra at the weekend I will recover some serenity and grown upness ready for my daughters return....still no sign of tattoo however.........they were compassionate and friendly in the end though and have refunded me and are still sending the tattoo design.....

There is hope for kindness, someone will always be kind that makes me feel better. I feel like such an attention seeker, blogging, raging with everyone, posting cancer on my facebook every 5 minutes cancer cancer cancer, daughter talks about it non stop, I am sure people get bored hearing about it. thank you to those that don't. I raise a glass to you reading this....it sucks the whole business and I appreciate those that 'get it'. The Pickering Centre for instance, working tirelessly to help and support people like me they are truly special people who really do know 'the score'. Feel better already for blogging. Thank you to you bloggee for listening you 'get it' x

Zzzzz

I have got off pretty lightly so far regarding the possible side effects of Paclitaxel. I have had no anti emetics, and have managed to fend off nausea. One thing I am noticing though, is a sudden onset of the 'wearies'. I didn't have my lovely girl this weekend so P and I were out in the garden clearing and shredding. it was a beautiful day in the sunshine with a brief trip to the garden centre to get seed trays and other garden paraphernalia. We got alot done and it felt good to spend the whole day in the sun, listening to the birds and the river and doing my G.I. Jane bit in the open air.

As evening approached I realised that the 'wearies' were setting in, naturally this is great being evening. The problem is I am then waking up at 4am, this seems to have stuck and has become a feature of most mornings. So today, Reflexology day, hooray, a nice long crystal charging relax and lymphatic system cleanse....I was to meet my friend (with a short term memory due to a brain injury) after my blood test at the hospital today, i forgot to check the appt had gone in her diary........I had forgotten my phone too......recipe for a 'no show'. Ho hum, then having trapsed to and fro town endlessly, I showed up for the reflexology, which had to be cancelled (no phone, so no message received.....) by this point I was ready to drop and wished I could rewind to the morning.

Homeward bound I am greeted by a sea vegetable gift from a friend in the village hanging on my door, perfectly timed and made me smile, then another greeting by a student finance letter, insinuating I may owe them money.....now the form filling begins, changing benefits etc etc....just as the lovely government is looking to make cuts to us folks with serious illness and disability.

Can't wait for my girlie tonight I need a cuddle

Where's my bed......I maybe gone sometime......