When the going gets tough........... the tough get juicing

I've hijacked Steve's blog..... he's assured me he doesn't mind......

Steve's now halfway through his first 6 cycles of chemo and I think it would be fair to say that this one has been a bit tougher than the previous 2.  We had been prepared for that - most people have told us that chemo has a cumulative effect, with each cycle getting a bit harder....  a bit more fatigued ..... a bit more bothered by the cold..... a bit more pain in your fingers and toes...... it all sounds quite manageable when you put it like that, but I would imagine it's a bit like parenthood, you have no idea what it's really like until you're the one going through it.

Of course I'm not the one who's going through it, I feel like a father in the delivery room, watching the person I love, my soul mate, going through the most difficult experience and feeling powerless to do anything to help.

In many ways it reminds me of this time 18 years ago when we brought James home from hospital.  We were, like most new parents excited, terrified and more than a little dazed and confused.  We had no idea what to expect, we had set out on a path and we didn't know where that path would lead us, so we held on tight to each other and kept on putting one foot in front of the other.  In those days when we were worn down by a baby that didn't seem to sleep when we wanted him to and cried for reasons that were a mystery to us,  we'd console each other with a smile and  say "well the last 5 minutes hasn't been too bad, has it?".

So once again we are learning, together, to take each day, sometimes each hour as it comes. It's another adventure, certainly not one we would have chosen to embark upon, but not without it's moments of joy.

The greatest joy has without doubt been the support of our amazing friends and family who have held us together through these first few weeks.    Claire who rings us to check if we need anything when she does her weekly shop.  My mum who drives Steve to and from his various appointments in Cheltenham every week.  Mark and Anita who brighten every Sunday evening with a Skype chat that is filled with love and laughter.  The people who send us funny jokes and stories to keep our spirits up.  The friends who text or call or pop round just to check in with us and see how things are going.  Our fantastic work colleagues who have gone above and beyond in their willingness to support us and of course our wonderful sons, James and Matt who have risen to a whole new level of maturity in the face of this adversity.   We are so grateful to each and every one of you who is sharing this journey with us.

Quite a few people have been interested in what we are eating in our sugar free, dairy free, meat free, unprocessed diet (we really should think up a catchy name for that) and so with this in mind I have added a few links to the side of the blog for those of you that are interested we will add recipes as we go along.  I have also added some links to other things that Steve and I have found have helped us on our journey so far.

In the Chemo Suite

Sitting in the Chemo Suite at the mo. 20 min or so into cycle 3. Oxaliplatin and Folinic Acid dripping merrily away. I can actually feel it when it hits my system. Not a bad feeling, as such, more of an otherness taking over my bloodstream. 

Who needs science fiction when you've got real life?

It's crowded in here. Lots of ill people. Chemo nurses are smiling, friendly despite the obvious workload.

If cancer were a viral outbreak or some bacteriological infestation, the government would be all over this. The newspapers would scream headlines. Reassurances from the Health minister on the news broadcasts. "Stay calm, we have everything under control." 

The fact is with greater than one in three developing cancer, and that predicted to rise in the next decade, the government patently does not have cancer under control. 

Imagine if it were giant insects attacking the same proportion of the population? A lottery as to whether you fell victim or not. "I was spared, but my neighbour got it. Poor bugger, and so young too!" As a society, we wouldn't stand for it. As it is now, we live in some degree of constant fear, looking over our inner shoulder wondering whether or not we are indeed next. It's no way to live a happy fulfilling life.

Yet we know a lot of the causes: smoking, stress, diet, carcinogens in food, excessive alcohol consumption. With a constant barrage of advertising extolling the flavour of the next packaged delight, we are easy prey for the Food Manufacturers. Their foods are manufactured with our lifestyles in mind, to coincide with the Modern Way of Life. Easy, just bung it into the microwave. No muss,no fuss.

No life in the food either. No Life in the food means no Life in you. Our body needs live food, not just to live, but to flourish, to help ward off the stuff in Life you can't avoid. So, Go veg. Go green. And yellow. And red. Go live food. If you still eat red or white meat find a farmer that grows animals organically, healthily. Yes it's more expensive, but that is the real cost of growing animals for food. Supermarkets keep meat prices artificially low, especially the non-organic cheap meats. 

I've started to feed my body, ( and my Inner Self) with live food, as pesticide - free as I can find. A bit of fish yes, eggs, and veg. OMG, the veg! Loads every day. As I've said previously in this blog, I feel absolutely brilliant. So healthy, so vibrant, so alive; more than I have in years. To survive a longer life than some people anticipate, I will have to carry on like this. Forever. I can't go back to the Bad Old ways. They were killing me. So, juice it, Smoothie it, dress it up in a salad, adopt a more vegan head space, elevate your consciousness. Meditate, pray, smile at strangers. Exercise. Think love. Your life will change. You'll lose weight, you will look better, feel better. We all need to love ourselves more. So start with what goes into your mouth, (and what comes out)! Sing, play an instrument. Laugh at bad jokes.

It works. Your loved ones will thank you, the Planet will thank you. But most of all, you will thank you.

Now if I could just finish this chemo. 45 minutes to go...

Kemo Krash!

 It seems to be a bit of a pattern. Chemo ends Wednesday, energy down Thursday, Friday,  Saturday, Sunday, Monday until I go to choir practice. Then, after choir,  I feel great.

It's a Fatigue. Not tired, as I'm sleeping pretty well. Just an inability to perform basic functions, particularly around the house. Like the ironing or washing up. "I'm feeling fatigued!  I couldn't possibly tidy the kitchen". Or, "I'm sorry, my love, I can't  do the ironing, I have cancer!"

 Actually, I can only get away with the above part of the time. Sara does far too much already,  and would do more if I didn't intervene.  Matt is doing his GCSEs this year and needs  directing and motivating.  Between her job and her caring Homelife she has more than a full plate and I do worry about her.

I'm loving cooking though.   Fab Vegan meals with lots of veg.  I like to have something nice ready for when Sara gets home. Last night it was Vegan black bean chilli cooked with homemade chipotle ( thanks to Carole and Humphrey for the Scotch Bonnet chilies; fiery and tasty in the chilli and the chipotle). With quinoa cooked in lime juice and coriander, it was lush. Tonight it's going to be butter beans with pomegranate seeds on a bed of cooked spinach.  Only vegetables will be harmed in the making of this meal!

 Despite the ups and downs, the constant rollercoaster ride, the fatigue, the peripheral neuropathy and subsequent sensitivity to cold, I remain upbeat and positive.  I have an an Enduring Faith and an awareness that this is indeed a Wake-Up Call. Although an unpredictable future awaits, my it will never be the same.   I have a deeper appreciation of life and the world around me. The sun shining in our local park activates a vibrancy and a livingness that I was only partially aware of before.  I say good morning to more people on my walk through the park than I have ever done before; everybody seems to smile. The daily news bulletins are dire, but there is joy in the world, and I'm feeling it at a deep level.  Caring family – both here and abroad – friends, acquaintances, (some of which I hardly know), and not least of all caring work colleagues are transforming my life.  I owe so much to all of you.

 And I will tidy the kitchen. And, er, the ironing. Promise...

Let Cycle 2 begin!

Ok. I'm really not that excited. But it all serves a purpose.it does make life interesting...
Morning cuppa has taken on a whole new perspective:

No, I wasn't robbing Sara, but perhaps a word or two of explanation might be in order:
I make the morning cuppa to allow Sara a few more minutes of , "It's not time to get up yet is it...?"
So I rummage around in the kitchen to get our various drinks sorted. Challenging some days, if our two boys have had a late night snack and have left the kitchen in a bit of a state. Some nights it was us, ( that last comment just in case they get upset over the previous comment)! More later.

My first drink is a cup of warm water followed by warm fruit/ veg juice made the day previous, ( active enzymes still intact courtesy of the twin auger juicer purchased by my Major Friends in Recovery, Bless you all!)

So what am I putting through this beast? Carrots, beetroot, celery, apples, mint, (occasionally parsley and kale), fresh ginger and turmeric. Makes about a litre, if I have 5 or 6 glasses a day, with one for next morning to start my day. So far, I haven't turned orange, but my water output is an interesting rose'... And what does it taste like? (Not the output...!) vegetable flavour, sweet with a fiery kick from the ginger. And you know what? I love it! After a few weeks I have found that I crave veggies. Throw in a daily Nutribullet veg smoothie and I'm sorted. Added bonus: Sara and I have both lost weight. Although she is not drinking the same amount of juice, her diet is squeaky clean as well. I'm down to the smallest size jeans in the wardrobe (34", if you must know, down from 36" a few months
ago). We do have the occasional veg curry at the local restaurant, in the name of Mental Health; being healthy does take its toll!

So, me and my New Best Friend are now firmly bonded until Wednesday late afternoon when the lovely District Nurse will knock on my door and disconnect me from my buddy. For 12 days. Then we reconnect strapped to each other as good mates should be. Here are pics of my buddy:

With handy carrying case:

 Look familiar Recovery staff? Heat sensor on upper arm next to skin, drawing fluid up at 2.5 MPs an hour... Who out there said it looks just like a baby bottle...!?

Oh yes. And the first pic? My fingers today  seem to be suffering more than last time with sensitivity to cold and a peripheral neuropathy.  Anything cold is very uncomfortable to touch, even the tea tray! And no I'm not planning on skiing but the registrar said the hiccups may not be entirely due to the deck dexamethasone but in fact to the oxaliplatin and it's renowned affect  on the nervous system possibly causing a nervous person. So central heating on low in the house but unfortunately the kitchen is not centrally heated or the Annex so I'm not taking any chances. Looks rather fetching don't you think,  well perhaps not.

 Looks like a DVD day. Take care and lots of love from Steve and Sara

Those bl**dy hiccoughs!

I mean hiccoughs! Proper, " where-did-these-bloody-things-come-from"?! spastic diaphragm, ( somebody sever the d*mn nerve, please!)  involuntary, unbidden and unwelcome hiccoughs.  Started Tuesday about noon and didn't stop until almost midnight!  On and off, mostly on, pretty much all day. All the usual treatments didn't really help: holding my breath ( I was going to try for 10 minutes, failed),  perhaps getting the kids to scare me, but they may have enjoyed it too much and not stopped! And water, buckets of the stuff, gallons, flowing into me like a waterfall.  The latter trick worked the best, but even that only worked for a short while and then the wretched things would return again!

At first I suspected the chemotherapy but that didn't seem quite right. So I checked the patient advice leaflets in the three boxes of antiemetics I got. Sure enough buried deep in the side effects of dexamethasone was hiccoughs . Next stop was Dr Google.  And apparently, (I can hear the laughter already) middle aged men on high doses of corticosteroids can often experience hiccoughs.  In desperation I contacted the chemo helpline at CGH. The nurse who answered the phone was unaware of the potential side-effects but found it eventually buried even deeper in the BNF. I was hiccoughing into the phone as we were speaking, as if to highlight my plight.. ( I might have opened my mouth a bit too wide for emphasis). I asked if I could cut the dose in half.  She asked the doctor, with predictable results. "No," was the reply.  "Oh really? I'm ready to start killing right now. Perhaps I should start with you?"

I didn't actually say that. I was very polite. So I started drinking more water. I must have drank 3 litres between 6 in the evening and near midnight when the hiccoughs finally subsided and I managed to fall asleep. I got up 5 times that night, ( I thought it was my prostate, and I thought, "Oh God, not that as well!" But I remembered the water).

Next day I cut the dose in half. Don't tell anyone.

Is that a pump around your waist, or are you just happy to see me?

I feel terrific! I have never felt healthier or more well in my life. Since the dietary changes, my food tastes amazing. I crave vegetables, they taste so alive and indeed, life- giving. Almond milk on our morning muesli! Homemade rye bread, ( but only a bit!) no coffee, one cup of English tea with cow's milk in the morning, (couldn't give that one up). Herbal teas the rest of the day. A whirlwind of positive, exciting changes!

And then Chemo Day! Kind of like D-Day, except spelled with the letter, 'C'. I felt like I was under attack, sitting -in an admittedly rather comfy chair-  in the Chemo Suite being attacked by -admittedly - loving nurses who were going to fill me with the Deadly Serum: Oxaliplatin and Folinic Acid, and to finish it off an 800mg bolus dose of Fluorouracil (5-FU). (I wonder what the "FU" stands for?)  At least they didn't smile all of the time. 

I wasn't alone. An older gentleman in the chair next was on his third round of chemo for the same dis-ease as myself. The last round failed him. Not encouraging. 

But that's the thing:  cancer is as individual as the individual. These are my cells gone awry, not something that has been placed there. Can't blame terrorists on this one. "Cells behaving badly" as one author put it. I have to look to my own within for the answers I need. Sara and I have been living, eating, breathing my cancer. Bless her; her GP signed her off for 2 weeks so that she could help me with appointments, Chemo Day, by cooking nourishing food. She has been my stalwart, my Companion of the Way, my light at the end of each dark tunnel I passed through. She is my Gift from God.

Almost time to leave the Chemo Suite. Just one more thing: a 46 hour pump, small, discrete (yeah right, not very: if I wear it under my shirt it looks like I need a hernia op, if I wear it any lower, well, read the above title...) So, pump jauntily positioned  inoffensively off to one side of my waist, I leave the Oncology department wrapping my face up in a scarf. Why a scarf? Apparently the chemo can send you into laryngospasm if you go out into the cold unprotected, or even drink cold liquids. My Recovery friends will be well acquainted with laryngospasm. The Oncology department's advice? Drink a cup of warm tea.

 Is that before or after I  lose my airway?

Steve's Awakening Journey begins...

Hi everyone!

Thanks for coming along to share my Journey!

You are all very welcome! Sit back, put your feet up and enjoy the ride...

Most of you will know how the Tale started, but a quick background / refresher for those new to the Journey:

October 29, 2015 saw me in the Anaesthetic room with a very capable Anaesthetist sending me off to that warm, fuzzy anaesthetic place. I was going to have surgery to what was to remove what was initially a nasty appendix. The on-call Registrar from the previous evening thought that the CT scan looked suspicious, and that "there was something else going on".

I had a very excellent and capable surgeon, who after I was awake enough told me he had to perform  a Right Hemicolectomy. He said that not only had  my colon ruptured and my appendix was necrotic, but that my ascending colon was inflamed and had to go. So long, been good to know ya!

But no visible tumour. Turns out, however,  there was an invisible tumour actually hidden in the submucosal layer.  A PET scan later revealed liver metastases. We were offered chemotherapy which according to the oncologist might give me 2-3 years. 2-3 years?!

It was a blow. We reeled for the better part of  a week. We cried, we laughed, (a bit) we went within seeking light and guidance. And, hey presto! The light began to dawn. We read, Sara devoured info on cancer, both allopathic and alternative. We stopped eating meat, (Sara had been meat - free for almost 2 years), we stopped eating sugar, salt and  dairy.  We explored Gerson Therapy, but chemotherapy was contraindicated on Gerson. The anecdotal evidence put forward a strong case in favour of Gerson, but cost and commitment felt overwhelming. And I was only days away from beginning my chemo cycles. I had little evidence and understanding regarding either path, and in the end felt I had only one avenue of choice: 'gut instinct'. Chemo had always felt right, despite the obvious drawbacks, side effects (some possibly permanent), and the feeling was consistent.  Gerson didn't feel right at this time. I had been juicing using a small single-auger juicer for a year or so, but felt we weren't getting the full nutritional benefits.

Then a visit from two lovely work colleagues brought a gift of cash collected by my amazing friends in Recovery. Huge generosity, overwhelming. I was moved to tears.  I can't remember ever feeling so loved by people before! We immediately bought a twin gear, 3 stage juicer. Delicious results! And a smoothie machine just purchased made delicious fiber-filled smoothies. I was sorted, not quite Gerson, (no coffee enemas!) but pretty close. We visited a Nutritional therapist, to tweak our already fairly outrageous diet. I made a commitment to exploring possible past emotional issues that if not resolved could lead to autoimmune problems, ( I have Ulcerative Colitis), as well as more unwelcome visitors, like cancer.

We began Mindful Meditation, which is turning out to be a very positive and healing practice.

Why didn't I do any of this before?

Because now it feels like Life or Death. Amazing the changes one can make if one has to.