Grammar's cool

Forget the cancer, a miracle of grammatic proportions has taken place at Burton Hospital in recent days.

You may remember the waiting room sign that was missing an apostrophe on our visit there four weeks ago. I sent a photo of it to my former boss and English language stickler (and good friend) Neil who I knew it would agitate no end. Neil had the last laugh, however, secretly emailing the hospital's communications team, explaining my situation, and asking if they'd rectify it as a (literal) sign of "love and support" to me. The wonderful comms people at Queen's Hospital got straight onto their estates team who actioned the correction, in the form of a fresh apostrophe, which was installed on 5 May.

Worried that I might not spot the update, Neil tipped me off and, on our first visit since the 5th, Lisa and myself popped into the empty waiting area on the way to the chemotherapy unit yesterday and photographed the result. It was 7.50am and deserted, which was a good job because I'm not sure how we'd explain what we were doing snapping away in the near-dark at the nurses' station.

It's the many small pleasant surprises that make this journey bearable (and are often most likely to bring tears to my eyes!) - so a big thanks to Neil and the hospital for this trifling but kind act. I also like that the sign still has one slightly prolapsed 's', mirroring the discombobulation many people must feel waiting in that room. And if anyone ever asks you what comms workers, like myself when I'm not ill, do for a living - well now you know!

You may recall from my last post that I was awaiting results from a bone scan at Derby Hospital which took place on the same day as the apostrophe insertion. Knowing this (the scan not the apostrophe) was being discussed by senior staff at their case meeting on Tuesday, I resisted the urge to call the colorectal nurses to check on the outcome as Tuesday afternoon wore on. I left it until 10am on Wednesday before ringing and got the update I was dreading but also, deep down, had sensed was coming.

Yes, the marker on three of my vertebrae do appear to be cancerous lesions, the nurse explained. She confirmed what I'd learnt a few weeks' earlier from the consultant surgeon: that it's extremely rare for bowel cancer to spread to bone (it's more likely for prostate cancer to do this, while bowel cancer usually spreads to organs like the liver or stomach). And then she reminded me that it's also very unusual for someone of my age to get bowel cancer. Add this to the fact that it's not normal at all for cancer to spread from the bowel to the seminal vesicle (as it also has with me) and I feel like I have the full house of random, unexplainable bowel cancer scenarios. After we got off the phone, I was upset. Alone in the house I cried out"Why me?!", along with some swears. The outburst, which lasted a few minutes, while solving nothing actually helped to calm and settle me.

There were good things in the phone call too. We are pushing ahead with chemo which will start as planned on Monday (15 May). It will be reviewed after two or three cycles (ie in around six weeks time) when there will likely be further scans to see how the cancer, particularly in my spine, is responding, and the chemo drugs amended if necessary. The nurse encouraged me to "stay positive". Even though my treatment cannot be classed at this point as 'curative', my cancer is not terminal and is treatable. There are a whole range of possible options following chemo, including radiotherapy and immunotherapy, plus surgery. She also helpfully pointed out that more people continue to live normal lives with cancer than are cured of it, and so there is hope for me in the years ahead (well that's what I inferred anyway!).

I can see now how my initial idea of the tumour being zapped, defeated and fully removed by a course of chemo and then surgery in a matter of a few months was naive. The fact is that even the experts cannot guarantee how the treatment will work. I guess I'm waking up to the reality that many people face, as the notion of living with cancer rather than waving at it in the rear-view mirror slowly sinks in. This uncertainty, which we're also learning to live with, could be depressing if it wasn't for the ingenuity, enthusiasm and determination I've met in the hospital staff we've encountered so far. It seems that there's a wider, and smarter, range of treatment options available than ever, and I know that I'm in good hands as I try and get my head around it all.

Our early morning hospital visit yesterday was, along with photographing the sign, for my pre-treatment assessment ahead of my first chemo infusion on Monday morning. This included the lowdown on potential side affects and what to do if any materialise. Because the drugs will deplete my white blood cells, the risk of infection is higher which means, it was suggested, I should have a bathroom to myself at home. This will please the kids I'm sure, although as our en-suite has no shower or bath (or hot water at the mo!) there will still be some sharing ;)

I'll write more about my chemo experience in coming posts but, for now, I am really keen to crack on with it. I can't believe it's been over five weeks since my diagnosis - so much has changed (and remained the same) in that time. Now I'm ready to begin the fight back against the cancer that has slowly grown in me for months, probably years. It will be a gentle, being-kind-to-myself sort of battle though - I know there are many twists and turns, and likely setbacks, to come. But that feels increasingly ok.

I'm aware this blog can be self-focused, which I guess is necessary as I process everything. Chatting with Lisa, we both feel this journey so far is split into two halves. There's the dealing with the deadly disease part - the obvious bit. The other half is how we carry, receive and respond to the incoming reaction of others, including those we are close to and those we haven't been in touch with for ages, or never even met, who have reached out in kindness. Strength and capacity make it impossible to reciprocate or, sometimes, even to accept offers of love or time together. It’s humbling to have to learn simply to receive, and even harder to say "no thanks"or "not today".

Managing this response can be exhausting and rewarding - it feels like a birthday-level of attention almost every day, minus the next-morning return to normality. This is definitely not a complaint, more of an explanation of how overwhelming the love and support of others can feel - especially when there's often nothing they can practically do to help. Suffice to say, there have been dozens of examples of generosity in this week alone that have touched us deeply.

As is my tendency, after Wednesday's distressing call, I went on a walk over the fields near our house, ending up on a bench behind Hammerwich church overlooking lush grass. On the way, I took the photo below which shows the path between the crops reaching upwards, but doesn't reveal what's over the hill. All we can do is walk the length of path that we see ahead, and trust that the unseen beyond will be taken care of when we get there, step by step, apostrophe by apostrophe.