You can't hurry... hope

Today's title is a mash-up of the famous Supremes' (and later Phil Collins') hit and a TS Eliot poem, which I recently heard paraphrased as: "to hope to soon would be to hope for the wrong thing."

Hope is a fragile thing. It can become false if grasped at too quickly and it can disappear as fast as it arrives. But to live without hope for any period of time can be unbearable.

I'm just about to start my third cycle of chemotherapy and the first two appear to have gone well. Although the side effects come and go, I now know roughly what to expect. There'll be three or four days of feeling wired, slightly disorientated and warm-headed as the chemo and steroids sink in, followed by a weekend post-steroid slump where I'll be glued to the sofa with my head feeling as heavy as a medicine ball and as thick as a Christmas pudding. This sees my body and mind grind to a halt in unison. Then follows a week of gradual recovery where I have a little more energy each day and can step back onto the household merry-go-round of cooking, washing and shopping, and maybe even see a friend or two. Naps are still needed most days and, although I'll walk a few miles, my one attempt at a 1.2 mile run two weeks ago left me with three days of neck pain so I've not tried that since (physio appointment to follow!).

This is all manageable and it feels like our family of six (plus kids' partners Georgia and Nick) are getting into a rhythm, all pitching in where needed, which is great and appreciated. My next chemo cycle, starting tomorrow, will see a new drug called Cetuximab added which is specifically for colorectal cancer that has spread. There could be additional side effects from this to spice things up - but we'll see how it goes.

I signed my consent for this extra treatment (which the hospital has to apply for funding for) at our fortnightly oncologist appointment last Wednesday. This was the first time we've seen my consultant oncologist since the bone scan results, which confirmed the cancer had spread to my spine. It was a helpful conversation with her - she's both blunt and caring, not pulling any punches but also able to empathise. There's usually a shock at these meetings. This time it was when she pulled up the bone scan so we could see the image of my full spine. Rather than the static small blobs of cancer we'd observed on previous scans, this showed the cancer glittering up and down my spine and into my ribs (scans up to this point had only been able to show it in three of my vertebrae). It was haunting, maybe even beautiful in a macabre way, to see this moving image, different from past pictures which framed the cancer in a more dormant light. It's not necessarily that the spinal cancer has spread since the earlier scans, just that this nuclear imaging showed it in all of its glory (as Lisa put it!).

The rest of our conversation with the oncologist was to confirm some hard truths. She told us that I will be on chemo for six months' initially (with a half-time break likely in August for a few weeks for scans to monitor progress, and recovery). Chemo cycles will then continue for the rest of my life until they're no longer effective, other treatment is preferable, or to try new treatment or medical trials if they appear. The agency for this is in our hands. We can choose how long to have breaks from chemo for and when (within reason) to coincide with family or other events. And, ultimately, I can choose when I no longer want to continue with treatment.

Then there's my prognosis. Basically, figures show that only 10% of people with Stage 4 metastatic bowel cancer (that's me) survive for five years or more. Obviously, my relatively youthful age (49) weighs in my favour but the unusual nature of the cancer and how it has spread creates an unknown factor. While reminding us that the chemo could yield suprisingly good results, the consultant confirmed the strong expectation that my lifespan will be shortened by this disease, as per the stats above.

Even though we left the hospital thankful for such a frank conversation (knowledge is power after all), the hours and days that followed have been slowly deflating and tough for both of us. The gulf between having cancer that is curable (with the suggestion of a future life resembling 'normal') and cancer that is treatable, but not curable, feels huge. Switching from the first to the second category over a period of weeks has triggered a grieving process. It has taken this time to begin to accept that I will be on treatment for the rest of my days, that the cancer inside me will never leave and will likely eventually spread, and that the rest of my life will be in and out of hospital, with treatment cycles being the rule not the exception in terms of my diary.

People have praised our positive attitude to my diagnosis up to this point, which is deeply appreciated. But there is also a sense of devastation which I'm only just ready to begin to feel. This overwhelmed me on Friday in an unexpected way. I was, as I do most mornings, sitting in bed, reflecting and praying and writing the personal Google Docs journal which I've updated most days for the past 20 years. I suddenly gently, but deeply, sensed God's pain and suffering (and own devastation) at what I was going through. It was a sense that God had never planned this for my life and wished with all of his (or her) heart that the cancer had been picked up earlier and stopped. This probably sounds theologically unsound but, as one of my favourite bands Wilco sing: "Theologians - they don't know nothing, about my soul" (see the playlist from my last post ;) ). I felt like God was weeping over me and inviting me into this deep state of grief. As a father, it felt the same way as I have on those horrible occasions when there's nothing I can do to ease my kids' suffering. It also offered a glimpse into the soul of a much larger divine pain and helplessness concerning a broken, hurting world.

Later, after a meander around Chasewater while talking on the phone to my university friend from Scotland, I began to hammer my feelings into my laptop. This saw me express my hatred at what the cancer is doing to my body, our household, my wider family and our friends. My reasonable anger at the big and small things it has robbed me of - including any hope of a normal retirement, of running another marathon, or (most painfully) being able to watch our family life expand and unfold for decades to come. Plus the hurt it is causing those I love the most. I guess I've felt guilty - entitled even - at expressing these feelings before. But to express them, and also, to accept that this cancer is not my fault (not sure how I'd got to the subconscious conclusion that it might be!), and is not something that I'm wilfully inflicting on my family, was cathartic. This keyboard venting did not solve anything but it felt like it wiped something clean and maybe, just maybe, could lay a foundation for some fresh possibilities. But I had to feel the devastation first.

Which brings us back to the subject of this blog. I'm, along with Lisa, currently waiting for some hope to replace, or at least accompany, the tears which have flooded this week. But, as TS Eliot alludes, this hope can't be rushed or forced, just waited for. It currently feels like Holy Saturday (the day between Good Friday and Easter Sunday) where Jesus' friends had to live with the truth that he was just, well, dead. They couldn't have known what was coming 24 hours later. At the moment, the devastation feels much more tangible than any sense of a better tomorrow.

Signs of hope often come in the least likely places. On Wednesday evening, three generations of West Ham fans (my Dad is originally from East London) gathered to watch our beloved, yo-yo team win their first trophy, the European Conference League, since I was six (Happy Hammers pictured above). I still can't believe it happened. If we supported Man City or Liverpool, this would be an almost annual experience. But having to wait 43 years for silverware forges some hard-worn hope. It was made even better by an old work friend posting me a Hammers cap that not only arrived on the day of the final but actually fitted my elongated head (thanks Ian!). Having "Come on you Irons!" shouted at me by a passing cyclist, who spotted the cap as I walked along Fradley canal yesterday morning, was also a novel and satisfying experience.

So when we struggle for hope, there's often you lot. We're acutely aware of how so many of our friends and family feel helpless at the moment as there is little they can practically do to make things better. I remember American author Rob Bell once saying that, in the face of incredible suffering around us that we can't fix, the best thing to do is live our lives as fully and generously as we can. Seeing our kids succeed at life, hearing good new stories from our friends and family; these bring some hope and comfort - whatever our emotional climate.

To finish, while we await hope, here's a great quote I heard this week from Dag Hammarskjold, a Swedish UN Secretary General whose own life was cut short aged 56:

"For all that has been, THANKS, and for all that is to be, YES!"