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......

The Battle of the Buddhists

The tattoo saga continues..............so I basically made an order for a Sak Yant tattoo for protection as designed by a genuine buddhist monk  (yeeeeessss i know....I am a mug......) the company who organises this is based in the Netherlands....(of course where else would they be....)  Here is their site http://www.thaitattoo.nl/indexeuropa.htm. Now in my ignorance and sheer desperation to be protected I didn't notice the lack of contact details and general assurance regarding the trustworthiness of the company providing this very buddhist compassionate and protective tattoo, being interested in buddhist philosophy myself I went with the whole buddhisty trust thing which to me is like an unwritten contract.....silly me.

Having parted with my money....I waited .......and waited.......finally I email to find out what has happened to my design, an email came with tracking information, with a despatch company that has no contact details....hmmmm....when I saw that the design had supposedly been delivered on the tracking info, I contacted the company by email to explain that it hadn't been. I was met with an onslaught of very grumpy abuse accusing me of trying to con them out of a design !! I actually was aghast, particularly as the whole ethos of this is buddhist and yet the company was showing no buddhist philosophy in their dealings whatsoever.........

There was nothing else for it, I had to play the cancer card and hope that they would see the error of their ways. I also raised a dispute with paypal as fortunately I paid through them. 

A very apologetic email came through and offer of a refund and free protective yant.....if I cancel the dispute on paypal as apparently the company can't refund me unless I cancel the dispute........eeerrrr no, this is not correct and on investigation paypal suggest you wait until the refund has gone into your account before cancelling any disputes. There should be no problems refunding on an open dispute. 

I am sad about this, I can be accused of rose tinted specs I guess, but it is still very disappointing when you come across businesses that thrive on peoples hope and rely on that to make a buck. i can only hope that Karma reimburses them. So I sent them loving balls of light and an email, and just hope that if my Yant does arrive it doesn't include some hideous curse!!

Ooommmmmmmm

Whats Good Enough for MJ (and some useful links)

Yesterday I had my port fitted, typical me I knew it was a procedure but hadn't read up on it or contemplated that it might involve a wee bit of sedation....turned out it was actually a minor op and luckily my lovely man friend P drove me and took care of me. The surgeon was such a great chap and told me not to worry as they were going to give me some mighty fine drugs, a drug infact that Michael Jackson had on a daily basis Propofol, it was administered to him by some medical clerk or something that would not be allowed in this country as it is not to be used outside of a hospital environment. I tell you what.......I am not surprised he moon walked everywhere, infact I admire him, I could barely stand up afterwards I had to be wheeled out of theatre in a wheel chair . The port that was inserted into my chest means that I do not have to obliterate my veins with chemo on a weekly basis and instead have a little rubber dome under my skin that is connected to an artery near the heart that pumps it round my body in an efficient manner. Clever......... science does it again. Considering when I was a child I had a massive dangly pair of pipes hanging out of my body which had to be flushed and cleaned regularly I looked like a kind of cow hybrid, the under skin dome is much more practical and doesn't have to be cleaned every 5 minutes.

So after my port I gathered more organic produce from waitrose (spent too much of what I cant afford) along with organic seeds for my raised vegetable beds in the garden, my brothers and I have been clearing it and levelling the end by the river I can't wait to get going with it and will be filling the windows in the house with seedlings this weekend. :). 

Today was spent making Granola and preparing meals. Taking it easy but trying to get out and about.

 I have decided to try and do some Qi Gong in the mornings in order to get the old joints lubricated, this is supposed to help cancer patients apparently. they hold sessions at the Pickering Centre but I cant make the day as it is chemo day, so I am you tubing some workouts here is one.........: https://www.youtube.com/watch?v=zzD4svzG9js.

Also while I think about it here is a link to some interesting information and personal research on cancer and maintaining health during treatment as well as preventative measures: http://www.davidpassmore.co.uk/dealing-with-my-cancer/4570639394

 I think after my rude health this week a bottle of prosecco is in order tomorrow. 

The steroids are wearing off this evening bye bye housework......and relax

GIVE ME MY TATTOOOOOO

RRRRRRRRAAAAAAAAAAAAAAAAAAAAA!

This is how I feel right now, despite copious crystal charging and chakra cleansing at reflexology today. I was very much pinning my hopes on having my tattoo in my grubby mitts by now, i am sincerely hoping I haven't been conned as the delivery company doesn't seem to have a contact number and pessimism has suddenly taken me over and removed the rose tinted 'Aaaaawww my own Sak Yant designed by a real life buddhist monk' specs. Silly silly me, but not surprising at all, I am a sucker for this kind of stuff. I just hope my pessimism is misplaced and my protective tatt is winging it's way....I just hope the Thai script doesn't actually mean 'your bum stinks and you look like a warthog' or something equally of amusement to my daughter.

Anyway, so, I am BALD !! ish....shaved bonce.

I channeled my inner punky Sigourny Weaver, my daughter just laughed at my baldness, I actually wanted to keep the mohican and invest in some patent purple 18 hole DM's and really get into the punk vibe I would love it, it conjured up the rebellious streak and freedom of expression you get when you are 18 just discovering what makes you tick and pushing the boundaries, not caring what people think and having impromptu adventures. I had secretly worn a Sigourney style vest top under my top to remind me to get into the 'alien' bashing ethos, (alien, obviously being cancer, and yes....well you see where I was going....bit lame/crass....I liked it though :) it was liberating. I reckon I could just about don a combat miniskirt and stomp about town throwing wildflower seed balls at people for them to plant......A punk eco warrior that's what I could be 'Plant wild seeds for the bee's you bloody bastards and stop using plastic stuff, save the planet rrrrrraaaaaaaa' It is all in my head....instead I will very quietly wear my wig under my hat and carry on as normal......or will I? ooooh too tempting to be bald and eccentric........

Turmeric is where it's at

My hands are bright yellow and stained with freshly grated Turmeric, vegetables are strewn across the kitchen, ginger roots everywhere, apples tower in the fruit bowl, the pears still with their leaves are scattered across the worktop, all these organic morsels are supposedly going to cure cancer or work with my treatment (Paclitaxel) the apples are particularly good for Taxol....(apparently) I have also stumbled across some very bold claims on cancer curing diets here's one http://www.life-saving-naturalcures-and-naturalremedies.com/natural-cancer-cure-tumeric-ginger-cinnamon-MSM-honey.html  

I feel I have become my own project, my brain still in Uni mode and in sheer desperation to hold on to my life with my daughter, but I feel guilt as my obsession in my new found life saving project has taken over and I feel I am not giving my daughter the time she deserves.

So far the treatment I had went ok, I have had no anti-sickness drugs, just steroids. I feel abit tired and if I do lots of stuff I have to sit down for a while, usually cuddled up to P while she plays on minecraft. I am determind to pull myself together though and get outside this weekend and do things and feel normalish albeit with a bald head.....the head shave is on for Saturday....high tea afterwards....I just want to make that leap before the treatment does it for me (*Control Freak Alert*).

I have been overwhelmed since my chemo started at the sheer generosity shown by the local people in the village where I live as well as other friends from all over, I have been finding things on my doorstep, in the post, on the computer screen messages of love and humour and warmth, offers of help. Someone sent me a bracelet and I don't know who it's from!! aarrgh. I am trying to keep up with thankyou cards. It makes me want to cry with gratitude at the wonderful beauty of human beings in times of crisis or hardship, how we want to help each other, be there for people, be a prop, a beacon of hope. Some people choose not to acknowledge, maybe even find it makes them angry perhaps? or turn the other way on the street, I understand that too. I chose to be open about my illness where some keep it private. I am open that is who I am, I maybe quiet, I am not the life and soul of any party, but I am honest, and open with my daughter too. She has talked about nothing else but cancer at school, it has become a big part of both our lives, I am worried that she talks too much about it, or maybe I do? I guess it disappears into the background the more we get used to it? I don't know....

I still find it hard to get my head round where I am with this, I feel ok at the moment I know my immune system has probably gone down and every now and then I get a twinge of nausea. But essentially everything is as it was, I am me as I always am, but I remind myself to really live and do all I can to ensure I can...(this is where the raw turmeric comes in)...I have made a pact to do fun stuff I have booked tickets for a stand up comic in Brighton and am looking forward to some yoga nidre in a couple of weeks. Depending on how the next few weeks go I may promote myself from walker to jogger...I have a feeling that tiredness may become a more intense feature though but I have hope. I am guaging my health on my ability to throw some dance moves in the kitchen, I managed a great routine to earth wind and fire this morning yesterday was 'Uptown funk'  which was truly something to behold, I put my all into it. Funk seems to be doing it for me at the moment. Earth wind and fire resulted in me having to have a little sit down for 10 mins to revive myself though this morning so from 'Uptown Funks' 10 out of 10 I reckon EW and F had gone down to a 7.......on the funk ometer. P and I managed to get down to some folk last night though, which mostly involved jumping up and down.

This is my new normal, my new project, thinking more about what's important, while I miss the constant work of my old life in the final year of studying Education and Wellbeing at the IOE, my priorities have changed, health,family, love and friendships in no particular order (although the health one is sort of on my mind ALOT)....

We have lift off

Today is the day.......slept surprisingly well, it must of been the reflexology and nail painting yesterday,calming the mind in preparation. Miki, my soon to be regular reflexologist was interested in the fact I carried around my healing crystals since my diagnosis, it was a beautiful sunny day yesterday and she told me to wash and 'charge' them on a window sill in the sun. I guess it is the equivalent of a mobile phone charger for 'vibes man'. She was brilliant and told me tales of the country where she is from, Japan. A place I have always wanted to go. She could tell from my feet that I had been a runner and said that it was a good thing....well I will take that, anything 'good' is double good for me right now.

Alas my crystals remain 'uncharged' and it is raining cats and dogs today, BUT, my tattoo design is imminent, the arrival is due between 9 and 10 today. Hooray!!

My darling girl has been so worried, it has broken my heart  her concern for me, but I have to say her teacher has been great, not to mention the school mums who are helping with pick ups and drop off' s with a rota in place implemented by a dear lady obsessed by spreadsheets :). I feel so grateful to every single person who is helping me right now, it's amazing the difference it makes to one's stoicism when faced with the prospect of having a hideous amount of toxic chemicals pumped into my weasley little body. I have my lovely chemo buddy coming with me who is switched on and will be my brain if I go to jelly and forget my name and date of birth.....

So onwards upwards....let the cat see the mouse.....may the force be with me ...........and I shall indeed kick bum and all that.

om. peace and do the fandango,.......