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.