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...