I'm Tired.....

I'm fatigued. My monthly blood results came back showing an only marginal increase in my Hb. Still, better than a drop. It had been plummeting the previous two months, and now showed a slight increase, despite taking rather hefty doses of iron.  Plummeting is probably a slight over exaggeration, however; it only seems that way when it's your blood values that are falling. Some liver blood tests showed a mild increase over the previous month, where they had risen sharply, and while still rising, the rise had been less dramatic this month than the previous two. One tends to find positives where one can.

The resulting fatigue left me dramatically tired. It didn't help that it was the hottest day of the year, with temperatures in the low thirties. I stood in front of the bedroom mirror, wearing only short trousers, an emaciated or so it seemed reflection looking dejectedly back at me, the total image highlighting a rather alarming weight loss and so compounding my feeling of fatigue. I could feel it, a tiredness coursing through me that had seemed to replace my previously  vibrant red blood with something akin to stone that had liquified, leaving me feeling that the resulting heaviness would sag me to the floor in a puddle, unable to move even a finger.

If the disease is interfering with red cell production, then any amount of iron supplementation would ultimately be pointless. I would continue on this downward spiral until my tired body could no longer support life. And I felt this time was close, given how I was feeling at the moment. How could this possibly continue? Very soon due to my weakness, my family would be feeding me blender-whizzed foods, I could look forward to puréed fish and chips and the like.

I felt flat and bereft of life. Maybe I should start planning my funeral? The Churchdown Male Voice Choir would be invited to sing a few of my favourite songs from our repertoire. Cremation? Sara and I had discussed this briefly in the recent past. It seemed the cheaper, and perhaps the most environmentally friendly option. Neighbours to attend, as well as friends and coworkers from Recovery and hopefully family, both from here and back in Canada.

It may be denial, however, but it didn't seem the time was quite yet. It did however drain the following day of uplifting conversation, (Sara's midweek day off, and a hallowed, precious day) the morning's chat punctuated by tears and a very real sense of impending death. 

In this entire Cancer Journey, I have never felt so close to death as over these few days. I thought my time must be close. I cried. The thought of leaving Sara behind, of leaving James and Matthew to carry on, looking after the house, looking after each other, visiting my gravesite on anniversaries, and birthdays, was almost too much to bear. And where would the money for the funeral come from? Dying isn't cheap. They would be starting new chapters in their lives, chapters that they would not want to read, much less write.

I had never felt so powerless. Until then, I felt I had a sense of control over treatment, but who has control over death? It compounded my feeling of fatigue. I didn't have the energy to manipulate circumstance, far easier to look death full on, despite the attendant fears.

So, why not expand my dietary horizons? Would it make much difference in the short time I felt I had left? I still couldn't bring myself to knock off a box of chocolate eclairs, but I have been craving...cheese.

We had some for lunch, not much, just a few pieces. I hadn't eaten cheese since last October, so easy does it, don't want to overwhelm my seemingly fragile ecosystem. 

It was truly delicious, like nectar. I could have eaten a block of it. It was the second time in recent weeks that I had added to my diet, feeling I was lacking something vital and was suffering for the loss. The first was chicken and the second live cows milk yoghurt. The first for extra protein and the second primarily for the increase in digestive enzymes. Both were, again, delicious and nectar-like.

As the week wore on I gradually felt better. I still wasn't sure I could make my appointment with my musical therapist at Maggie's on Friday, but Sara knew how important and productive these sessions were. She took the afternoon off as Carers Leave (pretty spot on) and drove me. 

Bob and I chatted, firstly about how I was physically, then how I felt that I was closer to death than I really wanted to be, about how frightened that made me feel. He suggested that apart from any disease process, fear and anxiety would increase my tiredness, creating a cycle which would be very debilitating.

By the time Sara had driven us back home, I was feeling refreshed, renewed and revitalised. What had happened? To go from such a sure sense of terminal hopelessness, feeling so near to death, to such a rapid reconnection with life? I felt reborn. My chat with Bob was obviously a key factor, but also, perhaps, the dietary changes. I had been taking iron supplementation for approximately 5 weeks, it had to start working sometime. Why not now? And the extra food has to be helping.

All in all, I felt I had turned a corner, imminent death has receded somewhat into the distance.

There's hope yet.

The Ongoing Journey

The times since my last blog (has it been that long?!) have consisted of a) dealing with symptoms and b)  looking within for answers to problems thrown up by walking this Amazing Journey.

Firstly the symptoms. I had been having pain on my right side, from my op site lower right abdomen  up to my shoulder.  I thought they were related to adhesions, scar tissue as a result of my bowel surgery. I saw a therapist who specialised in this sort of problem. She thought she could feel adhesions but wouldn't  proceed without authorisation from my oncology consultant. In the meantime I discovered that maybe it was constipation! Constipation cleared, pain disappeared. I had begun to take  strong painkillers to alleviate the discomfort. Ironically they increase constipation. When my constipation cleared I stopped the painkillers as they were making me feel  very spaced out and unwell and hey presto! pain disappeared. And my consultant was not open to the idea so end of story.

 I declined the CT scan at the end of May as I was feeling so well. No matter the outcome of the scan, treatment wouldn't change. There is no further treatment from the NHS and my own  self treatment probably wouldn't change. So why get a massive dose of radiation for nothing?  My GP wanted monthly blood tests. The first month showed some deranged liver function and a falling Hb.  The second month showed some worsening liver function and yet a further drop in my HB levels. So my GP has put me on large doses of iron.  Next blood test due tomorrow July12. My Chinese medical practitioner has made some prescription changes in the light of my liver function so it will be interesting to see if that has made a difference. Next CT  Scan due the end of August. I'm curious to see the results, so will go with this one. I have some pain over my liver and my oncologist says my liver is is enlarged so I'm anxious to see the state of play inside. Just feeling tired a lot of the time.

I have learned a lot on this Journey. Without sounding too trite, I have awakened to a lot going on inside myself, things I never dreamed were there. Good things, as well as things that I felt I needed to sort out before I could move on. I have discovered I have been carrying a lot of emotional baggage, things I had taken on board early in life that I didn't need to or weren't healthy for me to be hanging on to. Dump the junk!

I have discovered that there is a wellspring of love within me, a sort of two way communication of love, an ability to give and to receive the same, the expression of which was hampered only by issues from the past and fears in the present. I have discovered who's important and who are holding me back, who my friends really are, who love me and rally in a crisis. I needed teachers to help me wake up and Life supplied them in the form of my friends and colleagues in Recovery and Theatres. They rallied round with love and love in the form of donations, and the group that rallied closest were "Steve's Angels".

Steve's Angels was started by a group of my colleagues who texted me a few months ago, saying there was a group who wanted to do the 'Race For Life' and would I mind if they called themselves "Steve's Angels"?  Would I mind?! I was over the moon, that so many people cared that much for me that they would start running, (most took little or no exercise) with the express purpose of raising money for cancer research.  Fortunately, my wife, Sara, and one of her running colleagues had just qualified as England's Athletics instructors, with the qualification to teach people on a 'couch to 5k' basis. They were eager to start.  So Sunday mornings found us and a handful of Angels at Plock Court training for the big day, running (or walking), stretching and generally preparing for the ladies - only race. They were motivated, I was blown away by their love and wanted nothing more than to encourage them.

Race day was July 10. Everyone showed up. Even the children, ( bless you Charlotte, there's a special place in my heart for you!)  One of our sons, Matt came (our other son, James, was at a music festival). And the weather held. It was hard for everyone; some of the Angels that ran had lost loved ones to cancer and something like this reopens old wounds. To say they were brave is an understatement. Even Owlnet Photography came and took professional pics!

And now Steve's Angels have got the bug! They want to do more. They're brimming over with ideas!
What have they started?

Thank you girls for teaching me what love is really about.

I love you all.

More soon!

Steve

All change...!

 Hi guys! By now most of you will know my present situation.

We had the results of the scan, and whilst they were not brilliant, they were not completely despairing either. Tumour growth on my liver has continued, albeit it at a much slower pace the last 3 months than the time between my surgery in late October and the PET scan mid- December.

My oncologist said the slower growth was not the result of the last 3 months of chemo - that chemo didn't work. However, it was around Christmas time last year that we began to change, well, everything in our lives. Diet most specifically. And you know what it was, but to repeat: no meat, dairy or sugar. Plant based diet with lots of fresh veg juice daily. The latter becoming more realistic thanks to my lovely friends in Recovery, who gave of their own beleaguered funds to enable me to buy a very capable juicer. Thank you again, guys. Your love continues to overwhelm me! More on that later.

My oncologist and her very capable team told us very early on that there was categorically nothing else we could do for self-treatment. "You're ours for 3 months," said the Reg and lead nurse, somewhat too enthusiastically, I thought.

Scary.  However, it was like waving a red flag in front of a bull, because that spurred us on to doing our own research. Big time. Lifestyle change, mindset change. Discussions with a registered Chinese Medical doctor, leading to a prescription which I believe helped mitigate the side effects of the chemo. We did our own makeover! Who needs telly?! Took the..er...bull by the balls, as it were. Very soon, despite the (reduced?) chemo side effects, I began to feel much better in myself. Despite having cancer and a possible fatal prognosis, I felt healthier than I had in years. I began to crave whole foods, and processed foods, particularly sugar based foods, began to taste 'dead'. Lifeless and very unappealing. Vegetables made me feel alive. However, Man does not live on wheatgrass alone, and we had and still have the occasional curry. Mental health food, we call it. It's hard work being healthy! Gentle exercise, too, rather than punishing myself in the gym. The therapist I have been seeing regularly at Maggies has made me feel much better about myself, going over old childhood issues, initiating a healing within that continues to grow and enhances not only my own sense of self, but that of the world around me. He is a music therapist and taps into my musical self very easily. Together we are writing a couple of songs and will go into his recording studio later this month to multitrack record them.

Choose life!

Not the second line chemo treatment I was offered. This drug offered only a 20% chance of having any impact, (it was not a cure), devastating diarrhoea, to the point of hospital admission. This latter was likely because of inflammatory bowel problems I had been diagnosed with. And, to top it all off, 2.7 months of extra life. It was a no brainier. I thought, if I have only a short time left, I don't fancy spending it in a post chemo state.

Choose life!

Which brings me back to my lovely colleagues in Recovery. They are Angels! Well, almost literally. A group of them have banded together to run the Race for Life in Cheltenham in July, in aid of Cancer Research U.K. And they are calling themselves "Steve's Angels"! So my lovely wife Sara, who now has an England Athletics qualification for teaching new runners, is setting up a program and we will all train together. (I offered to don a skirt for the actual race, but didn't think I would fool anyone. Women only.)

If this Amazing Journey has taught me nothing else, it is that I am blessed to be surrounded by people that not only love and care for me, but nurture me as well. I have a new sense of self-worth and a new  appreciation of the world around me, and the lovely people that inhabit it. This is Life.

Choose life, indeed.

Please donate to this very worthwhile charity:

https://www.justgiving.com/teams/steves-angels0

It's a bugger...

Hi guys!

Got the scan results today, rather unexpectedly when I arrived for 6th cycle, which I didn't end up having. (A relief!) Sorry to say, while they could be worse, they are not brilliant. There is no spread (yay!), but the tumours on my liver and in the surrounding nodes have gotten bigger, (boo!)

I must say, I was shocked. Although I had mentally prepared myself for that possibility, I didn't think  it would be quite that bad.

So, April 4 I start on a new drug to replace the Oxaliplatin. Ironotecan. No peripheral neuropathy, but the possibility of cardiac changes. So I'll have prophylactic Atropine. WTF!!? This is some serious shit!

Jane at Maggies in Cheltenham was brilliant. She said sometimes the first line drug doesn't work, and they have to move to the second line drug. Trouble is, I don't think there is a third line.....

So, I continue with the diet, the juicing, ( the anecdotal evidence is too strong), the herbs and most of all, the positive outlook. I can't and won't give up. There is something within me that refuses to. I'm certainly aware, now more than ever, that the original prognosis may be accurate, but I won't stop.

It's a bugger.

A Journey of downs as well as ups

Ok. Not such a great time.

Feeling tense, angry and generally f***ed off. I seem to be at loggerheads with everyone, including my lovely wife who is loving and long suffering and undeserving of any angry and moody temperament from me. Who else am I going to unload on but you guys, and Goodness knows you  don't need it either.

As we get closer to Friday and (very probably) scan results, I find myself increasingly irrational. Impatient. Short tempered. With myself. What happened? Has therapy taught me nothing?  I'm only just learning to be good to myself! How much love there is around me! How much love there is in me! Not thinking straight.

 Cancer Man Behaving Badly!

Some of it must be me; I can't blame everything on Toxic Chemo Brain! And all because I want positive change in my life. And that has been my goal of this Amazing Journey. To change myself, within and without. Restructure my molecules, as it were. Like a Tin Man a Metal Worker can bang about until he has a new form, one without so many kinks and flaws. A newer brain and a bigger heart, one that includes more for himself as well as others.

Cancer is that Metal Worker. He wields a big hammer;  sometimes the bashing gets heavy and uncomfortable. Relentless and unyielding.

That only makes me feel the same. I will never give in, never yield to the blows. I know that within me is a new life in bloom, and I think that has always been there;  a source, a well spring of uplifting awareness that will never allow me to quit. Like in Trainspotting, that rather too gritty film starring Ewan McGregor: "Choose Life,... Choose good health.." You can keep the, "...electrical tin openers...". Some things in my life I can do without.

But I'll keep the Life, thank you.

And I haven't even had the scan results yet.

Now I must go, I think I owe my wife an apology, and a cup of tea at the very least.

Thanks for listening, guys. Watch this space.

CT Scan today, or, I've got those Oxaliplatin Blues!

Just finished Cycle 5 this week. And to be honest, I'm feeling it. Toxic, that is. Oxaliplatin: the peripheral neuropathy, (juicing a lemon with ski gloves on!) sunburned-like face, (nobody told me about that one!) chemo brain, (first brought to my attention as a definite possibility by one of my work colleagues. Thanks Lynn, I would thank you in person, but I will have probably forgotten!) And of course the fatigue, ( is it time for my nap yet? Oh, just had one...).  Too listless  to even write and tell you guys about it.

But I have to today. I'm having a CT Scan this afternoon. ( sudden sharp intake of breath!)  I've had a funny pain on and off around my original op site. So I mentioned it to the Oncology Reg, who couldn't find anything to worry about but as I'm almost finished my (?first) course of chemo, thought it prudent to have a complete thorax and abdo scan. Of course it will show how things are progressing.

Or not.

I've moved on from biting my fingernails to considering biting my toenails. Despite weekly Tai Chi and  Iyengar Yoga sessions, I still can't manage it.

 I remain resilient and positive. My days are fairly quiet, with a bit of meditation, a bit of light exercise, vegan meals, ( what a great world to get involved in, the food opportunities are are fantastic, I've let my imagination run riot and am trying all sorts of new dishes. I try to have an interesting and tasty meal ready when Sara walks through the door. She walks this Journey with me, her commitment and love are like a beacon of light when things get a bit dark and fuzzy around the edges), and of course, the juicing. 1 to 1/5 litres a day. I'm growing wheatgrass and that gets thrown in as well. I've started sprouting seeds for salad, (also makes great juice !), and am attempting to grow micro greens as a tasty salad topping. There are trays of dirt and growing things all over the house. Yup, Sara is long suffering!

By the time I get my scan results, I will have probably have had my 6th and final cycle in this Round of Fun.

Should I cheer or should I weep?

Watch this space...

Confined to barracks!

Cycle 4 completed on Wednesday, didn't feel too bad at first. Managed yoga Thursday evening, (mild dizziness ensued at one point, causing me to topple rather unceremoniously to the floor. " I'm all right, " I squeaked rather pathetically, causing John, the Instructor to look about nervously. Friday I had a great session with Bob, the counsellor at Maggies, and together we even managed to write some music and lyrics for an emerging piece of music. A quick shop after and then in the evening a delicious curry, which really should have been a take away with hindsight, as I ran out of oomph! rather quickly.

Poor sleep that night, ( should have taken it easy on the pickle and poppadums) and I awoke in the morning feeling like I should go back to bed and start my eight hours over. Fatigued before you get out of bed, well, that just isn't right!  Couldn't get out of the house to go to Tai Chi. Knew I needed to stay in bed. Showered, though, dressed and that's your lot.

So, my lovely wife has confined me to bed for R & R. No over exertion, no stress.

Also, no hoovering, no dishes, no laundry.

And if I try, she gets cross and tells me off.

Honest.

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.