Tuesday, 28 September 2010

I'm feeling lazy this week, possibly because I feel a bit run down, sore throat etc.  I know why, I haven't eaten so well this weekend (missed meals), my sleep has been all over the place so I'm upping the juices today to even things out.


The link above is a brief vlog about pH - easier to digest visually I think?

I see my MacMillan nurse tomorrow, bit daunting.  Dr Tom the onco on Friday - oh what fun.  Next week it's Urology appointment "how can we fix this properly this time without actually giving you an infection again when you're on chemo".  Looking forward to that conversation.

Friday, 24 September 2010

2010 - 23rd September - Birdsong

My Rock told me some time ago, I can't remember if it was before or after we found out about the sleepers/squatters, about a green burial site near him close to Alford.  I'd said I don't want any religious ceremony at all and had looked at humanist celebrants when I made my will 3 years before.  I'd made an appointment to go to see the site but, having been to Woodlands where Bec is now, knew I'd be disappointed.  The site is only 9 years old, a section of an estate where the owner wanted to have a green site.  Sadly it is only a burial site.  Don't get me wrong, as resting places go, or somewhere to visit a loved one it's very peaceful, with a lovely country road encased by greenery as the approach, only a few miles from the sea.  But if it's raining or winter it's going to be a pretty miserable place to be, standing in a field?  I can't make my family and friends do that I don't think.  I want it to be somewhere fairly close, for convenience sake, but I'd really like it to be somewhere that does everything like Woodlands.  Rural Lincolnshire won't have the facilities of a city area like Bristol, I know, but I am looking around at alternatives.

I've spoken to Becky about it, she knows the sort of thing I'm looking for, I just don't see the point in leaving all that trauma of finding somewhere to someone else?  I know what I want, I have the capacity and means to make that happen whilst saving people I care about, who may inherit the task of arranging it, a whole lot of trouble.  I've spent days, if not weeks looking into this non denominational, green burial stuff and still don't have a venue, and I'm not grieving for a family member.  I don't think it's morbid, it's liberating and responsible of those who can face it.  It's not as if by planning things now I'm holding the back of my hand to my fevered brow, head tilted back at a slight angle, wailing "woe is me, I am not long for this earth" is it?  I had to write my will when I was facing major surgery - there was a chance of complications during or after the four hour marathon that was pruning and rearranging my insides.  I had younger children, one of whom lived with me.  Now, how kindly they rub my face in my singledom (only joking loves, or am I?), the three named executors in my will have all married and moved since then.  How rude!  So, whilst I'm about changing those details I might as well add some specifics to the rather general will I made 2 working days before hospital admission.

I've also spoken to Hayley who had another suggestion I'd not even thought of, and wouldn't have if we'd not talked about it.  I told Lady D there will be NO HYMNS, she insists, if present SHE will be singing - that's fine, so long as there are no vicars and hymns she can bring a guitar along and have a little sing song round a campfire with pink bubbles and toasted marshmallows afterwards if that's what she wants.  Still - NO HYMNS.  Hmm, actually that sounds pretty cool!

This week I've spoken to my district nurse, Beating Bowel Cancer nurse and colorectal nurse at the hospital again and gone over my scans a bit more.  My decision (today) is to go ahead with Evil Irene (or as I've read nurses call it I run to the can) and see if I can't hold off the hair loss and effects of chemo with nutrition.  I have a £20 ebay wig now just in case and I bought a hat (subconsciously I managed to buy one similar to the one Bec is wearing on her order of service).  My plan being, I start wearing a hat now, noone is going to think much if I wear one in a few weeks.  Earliest I'll be starting, based on what I know from chemo suite timetables, will be middle of October.  Which means I should in fact keep my hair for my birthday.  Result.  So, I feel an expensive, pampering restyle coming on in to enjoy for the next month or two, maybe more.

2010 - 22nd September - Goodbyes and Decisions

I can't for the life of me remember what I did on Monday, but it was probably dull!  

Tuesday I procrastinated as much as possible, but eventually set off to Derbyshire, the first leg of the journey to say goodbye to Bec.  I stopped off at Grantham Asda, looked at a hat, tried it on when noone was looking and tried to imagine what it would look like on my bald head - and failed.  I kind of have too much hair right now for that level of pretending.  Picked up some dairy and gluten free seeded bread rolls, some onion pate (vegan of course) for emergencies and a multi pack of tissues.  Essential Green Cancer Vixen on the road fayre!  I would have loved to have gone straight to bed when I arrived at my aunt's but that's rude - I mean it was 7pm, I'd not had my nap, (I have fecking cancer which makes me tired) had driven 60 miles.  So I tried my best to join in conversation about old people, people who have almost lived twice as long as I'm expected to (I should reiterate, prognosis schmognosis, I'm not taking any notice of that crap, not that I've asked) - about their trials and tribulations old age brings.  Boo Hoo.  Sorry, I know that's harsh, but I was tired?  

Aunt dropped me at the station, parking in disabled space, despite the 4 or 5 spaces in the next row for non-blue badge holders (I don't get it, really).  I have a badge now, again.  So does Uncle.  Uncle wasn't with us.  I was wearing 3.5 inch heels and a dress, looking "pretty".  Under no circumstances did I look like I was unable to make the 10 metre walk to the train station entrance.  Anwyay I got a smoothie, a green tea and a bottle of water, ate my pear and my 9 seed raw bar (feeling sick at the amount of carbs as sugars but figuring I was still in my 80:20 ration of green/good : bad foods. 

 I read plenty more of my recent Amazon purchase on the train "Beating Cancer with Nutrition".  Brilliant.  The author is a master of the analogy!  He's American so he obviously can't spell properly, but I'll forgive him that (this is where I apologise my American readers, but really, I live near the ORIGINAL Boston, England and we made the language first, you just skipped a lot of letters out of the bigger words, it's cheating).  This book is again backing up all my nutritional advice from Mel, Deepak Chopra's lectures and Canceractive.com amongst others, but none of them suggest I ditch the chemo.  In fact this book suggests that nutrition can make the chemo an easier ride, let the chemo debulk the tumours, and then finish up with nutrition, mentality, exercise etc.  Job's a goodun!  I got to thinking that if my tumours grew that much in 6 months (turns out there was one on my January scan, but inconclusive) then by Christmas they'll be what, 4-5cm in my liver and 2cm in my lungs x however many?  That's gonna make a difference to my day to day life some time soon yeah?

When the train pulled into Birmingham New Street..I got off...dithered, panicked and got back on again - realising I wasn't on the later 1 change route, but the straight through to Brizzle Parkway route (insufficient sleep I'm claiming).  Just in case anyone noticed "that bird with the very red roots, spotty dress and 3.5 inch heels" I got back on in another carriage and kept my head down for a while.  Text Lady D - she was having train trauma too, it was clearly affecting the BBs in a similar way.  Given my Nutrition study, the tears were behaving, not so with Lady D.  My train got to Parkway a couple of minutes before Caz and Lady D so time for another loo trip (trouble with eating so much actual veg as well as juicing - I don't bloody need the fibre mmkay?)  and cue me, having berated the Lady for repetetive eye leakage and ordered her to "pull herself together" leaking at the very sight of the pair of them.  Parker aka a friend of the Lady, had valiantly offered to hand hold and chauffeur for the day in a rather swanky black Jag.  

We arrived as the ceremony started.  The first poem was just the most fitting reading she could have had - I Love You by Roy Croft.  There were no seats and barely any standing room in the entrance so we stood on the stairs so we could hear. The building was stone, painted white inside with windows all around on every wall letting in all the light and the sounds of the birds in the trees and hedges surrounding us.  No crucifixes, just candles and a wicker coffin covered in leaves and white flowers.  It was exactly what I would wish for myself, and have been looking into for the last 4 years.  But this isn't how I wanted to experience it, not at all, never.  Two people spoke about Bec and her work with the Samaritans and as a prison visitor, and her manager where she's worked for 8 years.  To hear more details of what a wonderful, beautiful person Bec was, the huge parts of her life I've never been involved with, made me feel so small and insignificant in her life when to me, she's been a part of my support group, a massive influence in the best ways.  Not a bad or critical word you could say about her, not one.  One of the songs was Little Star by Kelis - I'd given up trying to be quiet about crying and grabbing more tissues by that point.  It was such a wonderful, fitting tribute and I couldn't help but admire Ol and her family for managing to make it so, whilst wanting to somehow take some of their pain.  Ol couldn't speak, but the celebrant read what he wanted to say.  The celebrant had obviously spent a lot of time talking to them about Bec and I wouldn't have been surprised if he'd met her.  He sounded genuine.

We managed to speak to him after the service and give him some hugs, because he's going to need a lot to fill the hole she's left.  He looked so small and lost.  Despite this, he was so thankful the three of us had made it, knowing we'd had to travel, and wanted to make sure I was OK as far as I could be.  I told him I couldn't have missed it. That wasn't an option and the only pain I was in that day was in my heart, caused by cancer, but not my own.

There were baskets of Livestrong bands, I put one on and I hope they are built to last because that's my reminder of Bec, a reminder of another reason I have to stay positive and keep going, keep believing and hoping, on behalf as well as my own.  Her brother and dad and a few other relatives wore Livestrong t-shirts.  Ol wore a shirt that was just, Ol.  Her mum wore blue and purple which showed off her very short (shaved in support of Bec having to shave hers, as did other friends and family) white hair.  I realised my spotty dress, although black and white, and heels were absolutely appropriate.  We wrote in the memorial book, donated to St Peter's Hospice and had a toast to Bec with (non fizzy) pink wine and tea, sat on benches by the pond.  It couldn't have been a nicer day, weather wise, it couldn't have been a more peaceful setting.  Bec's mum came to talk to us, which felt quite humbling, that she knew who we were, as did one of her brothers and her sister in law.  Bec looks like her mum, I could see her in her mum's face and I blurted it out, but rather than upsetting her, she said it was the nicest thing anyone had said to her all day.  I managed a couple of minutes with Bec alone when I went to find an order of service - obviously not enough printed for the people who wanted to, and could make it to say goodbye.  Her sister in law let me have one which I must copy.  I didn't say anything out loud to Bec, there's no need now, she knows. I promised Ol I'd stay in touch and let him know how I'm doing, and he offered his support to all of us, even on such a day? We told him to keep getting hugs, eat properly and other mum type stuff.  Quite how we can keep an eye on him from so far, I'm not sure, but we can try.  

After a drink at a pretty country pub, Parker dropped us back at the station and I started the long, still tearful journey home.  I made it back by 9 and lit a candle of my own.

Tuesday, 21 September 2010

2010 - 21st September - I Needed Time Out

So it was a busy week last week and I finally got my bone scan, which by that point I didn't care about.  I saw my daughter in the morning on Friday, and she helped me find a pair of flat shoes, heeled boots and trainers.  All of which I needed (trainers worn too thin on soles I can feel every tiny stone, heeled boots - heels almost falling off, flat shoes - needed some more rain friendly ones than suede).  It was a tricky morning, in that it was the day after a new Fentanyl patch so I threw up in the morning and felt bloody awful all morning.  Still, we had a couple of hours.  

Beckie picked me up for hospital - had been preparing a green/mango juice to take in a flask to hospital and as I was feeling ill and sweating/shaking, I had to eat something.  (See photo of green drink: celery, apple, kale, cucumber) Fairly uneventful waiting room experience, although did see my favourite colorectal nurse.  I knew when she'd called a couple of weeks before that he was going to recommend chemo, but I think I was in denial about how soon that might be.  I mean I feel fine (when the pain killers aren't making me a zombie), I look fine.  I'm not "ill".  I've been working on my immune system for two months or so and I don't want to poison what I've worked so hard to heal.

The very fact that the main drug I'll be having this time (Irinotecan) is going to make my hair fall out means I'll go from looking and feeling great to looking and feeling like a cancer patient in just a few weeks, possibly less than a month.   Dr Tom suggests I start "yesterday".  Nothing in my gut agreed with him.  I was listening to Deepak Chopra again the other day and one thing he said popped into my head "If you aren't sure whether to follow you mind or your body, follow your body".  My body has no issue with what I'm eating and drinking, I have stopped losing weight, feel more energetic, less weak.  My body's reaction to poison, diarrhoea, hair loss, abdominal pains, vomiting - Lisa's computer says no.  Even my mind isn't convinced this is the right path at this point - here are some of my reasons:

CT (about 22nd July I think) scan showed possible local recurrence at join (ie a few inches lower than where the tumour was since my rectum has gone and it was at the top of the rectum).  The pain is where the original tumour was not lower down, so I think it's inflammation in that area causing pain.

Medical team think - not cancer, just the join.

MRI 25th August - no mention of anything suggesting cancer in my pelvis anywhere.  Where did the "possible recurrence" go then?  Did I get rid of it or was it never there?

Bone scan - 16th September - no report in but to Dr Tom "appears fine".

I say, I'm not ill, I have no symptoms of cancer - he says I am, the pain.  Why am I getting pain if there's nothing there Dr Tom?  "You have cancer in your pelvis" Where, where the hell is it, you can't see it?  You denied it was there even when CT suggested it, now you are sure it is there?  So is this his reason for wanting me to have chemo now?  On 2nd August I wrote down that he wanted a chest scan, to see what is happening in my lungs.  No scan ordered on my chest.  Still none ordered, nearly two months later.  I should have asked if there's been growth from CT to MRI in a month.

So after more tears from us (couldn't really look at Beckie in case that made either of us feel any worse, if that's possible) we discussed waiting.  He said if I leave it much more than a couple of months, something will happen that could make chemo impossible.  Something being brain or spinal tumours - well I know from Peter and Bec that that's what's likely in store for me.  So he thinks that's so close?  Or is it scare tactics?  They said it's my decision, I should be selfish and do what's right for me.  Can I face my children knowing I didn't try the chemo?  I only just started seeing my son again, I know I look so much better than last time he saw me, ill, just out of surgery, depressed - later so close to being suicidal.  

There is the option to just have the 5F Poo (5FU - PICC line again - pump connection Monday, disconnected Wednesday).  Check if it's working with a scan, if not add the (what I'm going to nickname Evil Irene) Irinotecan.

I'd probably have a scan in October as a baseline scan anyway to compare to.  We agreed I'll see him on 1st October and, knowing I have Dublin and Hayley booked for my birthday week at the end of October maybe I'll agree to starting then.

I couldn't bring myself to talk to anyone about it until late Saturday when Hayley was online and I was ready, having bawled down the phone to my Rock who couldn't come to talk any sense into me because he'd got a friend over for the weekend.  The conclusion I came to was - I want to see what the next scan says compared to the first - if there's growth, hook me up to Evil Irene.  If there isn't, surely I am having some effect myself?  It can wait another 3 months?  Or do I just do the chemo to try and shrink them now, and shrink them more myself?

I spoke to D last night - he's done Irene (ha sounds so wrong) lost his hair, become allergic to the 5F Poo and got a constant mouth full of ulcers.  Initially growth slowed, then shrunk and since he's made some positive decisions about work which was making him unhappy and started partying like a "healthy" person, they've stopped growing.  So, on the one hand, the chemo didn't affect him negatively as far as the tumours went (the evil effects are a given) and most importantly his attitude made the biggest difference it seems.  Which is exactly what Dr Rock prescribes (self belief, hope, meditation).  I'm backing that up with the physical stuff - juicing, alkalinity, yoga.  Is the chemo just another weapon?  Albeit one with seriously damaging effects - effects I should be able to counter to some extent with my diet.

Today I'm off to Derby so I can travel on Wednesday a little after the crack of dawn to Bec's funeral.  I believe it's a greensite memorial service where trees are planted instead of headstones.  This is what I have planed for myself (haven't paid for it yet, I'm still expecting not to need it for a few years yet) in my will - just have to fork out for the amendments.  I'm going to be near the sea (and the Rock by chance).  As horrible and unwanted as the reason for going to a green memorial is, finding something positive out of the day: I get to say goodbye to Bec, I get to see a couple of BBs again and see what it is I'm choosing for myself.  

Sunday was filled with my daughter (K) in the morning, wander round shops, feed her ( I had tomato soup from M&S and a small brown seeded roll - about the size of an apricot - first bread in 2 months) then went to pick my son (P) up from his mate's.  Still shocked at his height and deep voice but with my little boy's face, mannerisms and humour.  They both seem really happy in themselves which obviously makes me happy, but now I just like spending time with them, they're not really kids any more and definitely developing their personalities very quickly.  They're fun and they're good people and I don't want to leave them.

The Rock came over, as promised to "have a word" and things, as ever, just felt alright once I'd seen him.  Cocky sod, knows that's how things are, but having a hug from him just makes me calm and happy, untroubled.  So I can't have that on tap or anything more than a hug, he's in love with someone else.  But I get a lot more from him than I've had in most of my relationships and it makes being single and alone more bearable.

Thursday the district nurse is coming back to see how discussions on Friday went (with the whole bloody world expecting that of course chemo is what I'm desperate to do).

Feeling a bit happier now I've voiced my reasons for hesitating out loud to Beckie, mum and Auntie Susan and thanks to Hayley and the Rock for listening and asking the right questions/making the right observations to help me get this far. And thank you to Lisa for the company she would have provided had her week not started off in hell!

Better pick out a dress Bec would approve of - heels or not Bec - I mean if I'm standing in a field, I don't want to start sinking?  I'm not convinced you'll want black everywhere?  But is it about what I think you want  or what other people think I'm displaying in terms of respect for you?  You know.

Sometimes it's hard to be a BB. 

Wednesday, 15 September 2010

2010 - 15th September - Nuclear Emergency!

The nice St Barnabas Hospice lady is submitting my claim for DLA (Disability Living Allowance) and a blue badge (my last one for 3 years just expired at the end of August, I threw the renewal letter away refusing to accept I might need one again).  "But I can walk OK - it was only when I couldn't walk with the chemo that I applied before" - this is for a year, no photo required - anyone with stage 4 cancer is assumed to have days where they will be too ill or too tired to walk far so on those grounds, I'll get one automatically.  I had to have a giggle at people's faces when I climb out of my sports car in heels after taking the last disabled spot!

She is looking a bit dusty but wet at the moment.  I've only had 10 days of pain relief so she's not been so well looked after of late.  Must sort that out!

Also, the hospital rang me a few times today - specifically the Nuclear Medicine Dept.  I'd arranged to go with Lisa so we could do some window shopping or proper shopping... in between the jab and the scan.

First call: "We may not be able to do all our scans today, we have some technical issues, will ring back"

Second call: "We have to cancel your scan, but are trying to get you in at Grantham or Lincoln, or get some isotopes from them".

Third call: (hello poor secretary lady, you're having fun today aren't you?) "Can you come for a scan tomorrow?"

Yes, yes I can because everyone is assuming I'll be having chemo soon, so I'm playing the "I'd rather have a scan when I'm not in treatment in case that influences the treatment" card.  Plus I would rather know what I'm dealing with in totality, although round here complete body scans/PET scans seem to be out of the question, they like to just react to symptoms, then check the cause rather than approach it holistically from the outset.  They usually do scan all the bones though, maybe that's cheaper?

Oh, apparently a cabinet fell apart - the isotopes were declared unsafe by some nuclear inspector blokey or something in case the injections were contaminated.  As if a world shortage of the stuff isn't enough to deal with.  Bad times.

Its inconvenient, only because I'd arranged to go with a friend, who'd rearranged her entire day around it - but turns out tomorrow will be a bit easier to rearrange so probably for the best.  Plus I spent most of the afternoon asleep in the conservatory reading my book in the waking moments.  Clearly needed!

I have done NO sewing this week as I planned, so I'm off to repair a top with a split the seam right now!

Tuesday, 14 September 2010

2010 - 14th September - My Diary Has Never Been So Full

Phone again - St Barnabas Hospice lady arranging to go through applications to keep me off the streets.

Today is my only "free" day until next Monday!

Better get some heavy duty rest in.

The beauty of not being able to throw out all of your kids stuff as they grow is:

I have an amazing selection of colouring pencils/drawing pens and pencils and a couple of Fairy Colouring Books to keep me out of mischief today.  Colouring in is relaxing - it's technically therapy.  The fact that I am 39 is completely and utterly irrelevant.  That applies to scraperfoil pictures too.  (I shall probably skip the potato prints).

2010 - 14th September - Visitors and Hugs

I've been collecting hugs this week and saving them up in my head for when they're less prolific.

Saturday Mike was over (distracting me from my hole punching and sorting out of paperwork by being too interesting) and he's a good hugger, being a man and unusually taller than me - always a bonus.

Sunday I got some hugs from the boss's mum (also director) but the visit was unexpected and given my current distress about the whole work situation (signed off for 3 months now to start with) not particularly welcome.  I hope it was all well meant but although the reason for the visit was "to help me" she said so many things that just increased my emotional pain.  I have no place in my life for anyone who makes me feel anything less than good.

I have "pushed everyone away" especially my family and my children apparently and therefore "need" company and offers of help.  I shouldn't have gone to work for a friend.  Anyone can tell by looking at me that I am ill.  My life was made difficult for the last three weeks at work "because you were miserable Lisa".  To top it off, she'd not been to see me in the office for weeks because "I can't bear to see you like this".  My response was initially when I began sobbing to request she leave my house - but since that didn't happen I pointed out I'd clearly done them a favour by staying away since I make their lives so miserable.

I still want to believe that everything was well meant.  To turn up unannounced on a Sunday (I was just coming downstairs having just got up) and tell me what is wrong with me, what I'm doing wrong and to be made to feel the bad guy in the whole situation - is that the way to go about it?  I tried the obvious shock tactic of "which bit of I have cancer and I'm dying are you two struggling to accept?" (Whenever I use those phrases I am only referring to my medically diagnosed situation - you know my personal opinion on the matter).  I was immediately on the defensive since I expected her to be trying to persuade me to go back and work some days - since the impending wedding has left them short staffed for cover in the office.  However she assured me "no-one is indispensable - we won't have any trouble replacing you".

I got the impression they thought I'd deliberately gone off sick now to cause trouble.  The real fact being my stress levels reached a peak after finding out my appointment to discuss treatment was to be moved to a time when I would be unable to attend (due to there being no cover for me at work).  That and the dawning realisation that any treatment I have would depend on taking time off and he is so unapproachable on that subject and makes me know how inconvenient it is every time I have to have a scan, oncology or GP appointment.  I have already delayed urology appointments till October because of the boss's wedding and I'm damned if I'm missing any more for work.  More to the point, I have every right to take time off work just to absorb the impact of my situation - apart from going home at 11am the day I got the news, I have had NO time off for such things.  I've carried on, and they know this, because I could not afford to be on SSP.  At no point has anyone asked if I can cope with my duties, if they can make things easier, if I need extra breaks.  In fact I have been left alone increasingly having to be polite to customers and suppliers and delivery drivers as if everything is just bloody fantastic.  All the time being treated like a thorn in the side by those leaving me to it. Is that how they would want to be treated?  Aside from the fact that will never be in my situation (with money worries and having to ask favours just to attend medical appointments).  I spend the best part of 4 working days alone, because I live alone and I tire so quickly I then spend most of those evenings alone too.  The phone calls I get are tiring.  I go to bed as most people are just sitting down to relax after eating dinner and doing the dishes.  Is that conducive to my recovery?

Well that is all in the past now.  As I said, I've been collecting hugs.

Monday - Susie and her mum and baby Robert - I got to hold him (baby cuddles are priceless) almost the entire time they were here, fed him and changed a nappy.  I love babies!  It's a special thing to spend time with small babies.  They just have the essence of life about them, unspoilt by the world and all it's negative aspects.  They just need their basic needs met, plenty of cuddles and conversation.  I think he probably zapped a lung tumour all on his own yesterday.  I got lovely soft jumpered Susie hugs too, I might try and steal that jumper!  Beckie popped in to bring my night lights (scented and some to kill flies) and hand cream/manicure stuff so I got a tiny little (but in so many ways much bigger than me right now) hug.

I had virtual hugs over the phone from Hayley - she'll probably be pouting reading this that she can't also give physical ones (she's short but also gives good hugs - bit like handshakes, you can judge a person by the quality of the hug I reckon).

I had to pop to fetch my HRT from the surgery and then pay a visit to the bank feeling still a bit queasy.  I was physically ill again this morning - just the 3am apple I ate (won't do that again).

Nuclear medicine rang me too - finally the World Radioisotope situation is resolving itself.  Scan is booked for Wednesday 15th at 13:30 for the injection, wander round (hopefully with Lisa in a less distressing visit than last time) shops and then back at 16:00 for the scan.

My "rock" came to visit for a couple of hours in the evening.  Not seen him for a while (i.e. more than a week) since we had some issues that needed sorting out.  He has the special sort of hug that just makes everything alright, the sort you can't get from other friends or family.  The sort that lowers my blood pressure instantly.  The sort I crave as soon as it's ended.  The sort I really would prefer to be getting from someone who feels the same way, but: be grateful for what you have.  This is as good as it can be and therefore that's enough.

This morning the district nurse rang from the surgery.  They do monthly visits (if you want them to) for people in my situation (and presumably other chronic illnesses).  She's coming on Thursday.  So - how the hell am I supposed to fit work in anyway?

I'm going to do my yoga, meditation and then get on with some repairs and alterations to a few of the clothes I can't bear to get rid off just because they are two sizes too big now.  There may also be some "squashy sofa in the conservatory with a book and green tea" action going on later.

Try to make at least 3 people smile today - beginning with yourself.


Saturday, 11 September 2010

2010 - 11th Septmeber - What Do I Eat?

I've not said much about my unusual eating habits on here yet - I just sort of got on with it as soon as I found out about the awakened sleepers at the end of July and now it's second nature.  It's only when I try to eat out or at someone else's house I realise I'm being different.

My first inspiration came from Mel, a girl I used to live next door to when I was very small and who later became good friends with Hayley (technically H this means Mel is an older friend than you - although yes we have spent MUCH more time together and not been sick on daffodils, perhaps just the odd martini).  Our conversations since her brother Paul told us we could eat daffodil stalks so long as we dipped them in sugar (he was wrong, violently wrong) have been via email and through Hayley.  Mel's dad also had colorectal cancer and by an awful coincidence, died in the same hospital as me - I was having my "life saving surgery" and he was reacting very badly to chemotherapy.  Mel is a nutritionist with an obvious interest in cancer and to her absolute credit has volunteered help to me whenever I've asked for it, despite this being her profession.

For most of the 7 weeks 24/7 chemo and 25 sessions of radiotherapy, plus the 6 week gap between that and surgery I followed a strict eating plan to get myself into the best physical shape I could.  I'm not talking rock solid abs here, but by eradicating and compensating for any deficiencies the treatment brought on. 

It was hard, I won't deny it.  Five years of solid vegatarianism in my late teens/early twenties helped.  I already knew how to cook pulses and that protein didn't have to have been anywhere near an animal. 

I gave up the following:


I cut down on:

Fruit (due to sugar)
Aubergines (look I like aubergines and mushrooms OK?)

I took unprecedented amounts of supplements, including omega 3, selenium, choline & inositol, vitamin C etc and ate steamed fish twice a week, plus brown rice daily.

Salads and freshly made soups plus veggie dishes with brown rice - really not that hard to deal with is it?  I grow my own herbs and love lentils, veg and spices.  So at home easy - anywhere else "You can't eat bread/cake/sweets/chocolate?" erm yes of course I can but I don't want to die, so I'd rather not if that's OK?

Actually, given the state of my insides (regular readers may remember the feeling of passing crushed glass every time I was in the bathroom and the accompanying screams and tears) eating chocolate was a bad thing - acted as a laxative, wheat bloats me and sugar feeds cancer so... 

In less that two weeks, the ballust of the brown rice (unlike white rice this contains all it's natural minerals and vitamins which are stripped out of white rice, then BY LAW, added back in so white rice at least has SOME nutritional value, albeit totally manufactured) the supplements aiding healing of the damage the radiation and chemo, plus the lack of cancer feeding foods - the pain dramatically reduced.  The bleeding stopped quite early on - due to radiation shrinking the main tumour, but the radiation caused more pain - the food was my medicine.

The concepts of this restrictive diet is based on the facts that cancer thrives in an acidic environment.  The blood needs to be slightly alkaline at ph 7.4.  A diet high in sugars, meats, cooked and processed foods, particularly those with a lot of added chemicals are all acidic.  Another cause of excess acidity is stress - when we get stressed we produce cortisol - I'll leave you to look that up on Wikipedia rather than bore you with detail.  I'm simplifying HUGELY here because I want you to try and understand what I'm doing here, if possible.

Alkaline foods are things like green veg, they contain chlorophyll - which is molecularly virtually identical to human blood, the only difference being magnesium in the green stuff and iron in the red.  You should eat your greens for a reaon - you need all the stuff in them!  Certain grains like millet, buckwheat, lemons and limes are metabolised into alkaline - not acidic as most people believe.  Even radiologists advise drinking lemon barley water - to keep things alkaline - burning acid wee is not something you want anywhere near radiation burns I can assure you - this includes internal damage like cystitis and external like....well bleeding burnt skin.

Alkaline Vegetables
Lambs Lettuce
Red Cabbage
Green Beans
Grasses (wheat, straw, barley, dog, kamut etc.)
Brussels Sprouts
Watermelon (is neutral)
Other Seafood (apart from occasional oily fish such as salmon)

Dairy Products
Ice Cream

'Green Drinks'
Fresh vegetable juice
Pure water (distilled or ionised)
Lemon water (pure water + fresh lemon or lime).
Herbal Tea
Vegetable broth
Non-sweetened Soy Milk
Almond Milk

White Pasta
White Bread
Wholemeal Bread
Soy Sauce
Condiments (Tomato Sauce, Mayonnaise etc.)
Artificial Sweeteners
Fizzy Drinks
Fruit Juice
Dairy Smoothies
Traditional Tea
Seeds, Nuts & Grains
Buckwheat Groats
Cumin Seeds
Any sprouted seed

Convenience Foods
Microwave Meals
Tinned Foods
Powdered Soups
Instant Meals
Fast Food
Fats & Oils
Saturated Fats
Hydrogenated Oils
Margarine (worse than Butter)
Corn Oil
Vegetable Oil
Sunflower Oil
Fats & Oils
Evening Primrose
Coconut Oil
Oil Blends (such as Udo's Choice)
Sprouts (soy, alfalfa, mung bean, wheat, little radish , chickpea, broccoli etc)
Bragg Liquid Aminos (Soy Sauce Alternative)
All fruits aside from those listed in the alkaline column.
Seeds & Nuts
Cashew Nuts
Pistachio Nuts

General Guidance:

Stick to salads, fresh, alkaline vegetables and healthy nuts and oils.  Try to consume plenty of raw foods and at least 2-3 litres of clean, pure water daily (ideally enhanced with pH drops).

General Guidance:
Steer clear of fatty meats, dairy, cheese, sweets, chocolates, alcohol and tobacco.  Packaged foods are often full of hidden offenders and microwave meals are full of sugars and salts.  Over cooking also removes all of the nutrition from a meal!
I confess I have eaten a tin of salmon (but see above chart) when I hadn't eaten but had to go back to work and it was just there, in the cupboard, the last tin of oily fish.  I have also had the odd glass ( 3 since 28th July) of red wine and two glasses of pink champagne (to toast Bec).  I have also had two vegan cereal/plain chocolate bars in the last 6 or 7 weeks.  Mostly my meals are as follows (bearing in mind I have lost 23lbs in the last few months due to not wanting to eat):

Breakfast:  oats, soy milk, goji berries/blueberries with cinammon

(Wheatgrass juice home grown - makes me want to hurl it's SO saccharine sweet - but super alkaline)

Green drink: fist full of spinach and/or kale, half to whole cucumber, half a lime, stick or two of celery, green apple.  If I can't face food I blend the green drink with a mango for some fibre (not required for my reduced digestive system).

Snack: nuts/seeds, a banana, an avocado, brown rice cakes with any nut butter

Lunch: small sweet potato and beans if really lazy

Dinner: soup, some kind of spiced mean containing veg, lentils, chick peas, or a salad.  By salad that usually includes carrots, beetroot, peppers, leaves, cucumber, sprouts, seeds, olives, avocado, celery, tomatoes, sea veg, etc.  A salad is NOT a leaf of iceberg, two slices of tomato and a slice of cucumber. 

I have non wheat/vegan bread and pasta for the times I want to have something "normal".  I make vegan pancakes or blinis - and squirt some agave syrup for sweetness, or fill with mashed banana.

So long as at least 80% of what goes in is green/alkaline (my ph saliva strips are green when I'm 7.4 - it's just a whole concept really) I'm happy. 

Of course, this is all well and good, but it's only half, if not less than half the battle.  What's going on in my head, the nerve centre of the pharmacy I run, is more important.  If I eat green all day and am stressed (as I have been too much the last two or three weeks) it's an uphill struggle.  By breathing slowly - just for a few minutes, you can also make chemical changes to your body.

Meditation - it's not just hippy mumbo jumbo you know.  I'm racking up 10 - 20 mins a day.  On the days I've not even felt worthy of my own efforts, I've felt so much worse.  A (frequently sharp and overly harsh) reminder to "get into the zone" from my mentor generally does the trick - as soon as I've had my 20 mins everything is a lot calmer.  He's not been around as much lately for various reasons and I realised I was relying on him too much and let everything else get on top of me too.  It led to a miserable few days, but I think I'm back on track now.  A huge element of stress has gone.  I just have to face the medics in a few days and listen to what they have to say. 

There is really no part of me that wants more chemical intervention.  I can almost pinpoint the times when I think the tumours started to grow again.  I've always believed the largest cause of my cancer has been my depression.  Cancer won't grow where there is a healthy immune system.  Depression and a suppressed immune system go hand in hand.  There have been three times since the main surgery when I've been rock bottom, the last two I pretty much gave up on my own future.  Negativity was my middle name - regardless of any front I've been putting on for people.  So, if I allowed things to get that bad and they grew, I can stop them growing any more, what's to say they won't just disappear altogether?  Who really knows for sure? 

Kris Carr - Crazy Sexy Cancer - if you can watch that documentary (I have a copy but the tracking is off) or read her books, or her Crazy Sexy Life - she's been on this journey for the last 6 years or more.  Her rare tumours all over her liver and lungs have stopped growing.  Her blood is "clean" now unlike at the time of her diagnosis.  My fellow cancer buddy Dean - been out living life, DJing round the UK, Ibiza, having FUN and just getting on with what he wants to do - last two scans, no growth on his lung tumours either.  So why am I any different?  I may have had a minor set back lately but it's all going to get much better now.  I've got gigs/events/trips/visits planned - and am still planning.  Yes I'm worn out and I'm doped up on these Fentanyl patches - but I'm pain free now (95%) and I am going to carry on and I'm not going to lie down and take the medicine like a lab rat unless someone can really show me a very good reason why my plan isn't a better one. I just might need a little while longer to make my case - but I'm still the judge and jury on this one.