Catch me if you can

There were several reasons for starting a blog when Nick was diagnosed with lymphoma. Firstly we wanted a way to keep friends and family up-to-date with what was going on. As lovely as it is to know how much everyone cares, it was exhausting trying to keep in touch with you all at the beginning when things were changing almost daily!! Secondly we hoped maybe it would help people understand how it felt to live through these uncertain times, people we know but also perhaps strangers who may stumble across the blog somehow. Lastly we thought it would be a good way for us to process our thoughts and feelings in a meaningful way, warts and all, allowing us to celebrate the good times and share the burden when things got tough like some sort of catharsis, using our unsuspecting readers as therapy.

The other day Nick's good friend Jen asked her... 'So how are you? How are you really? Not the blog version.' She answered honestly that, really, the blog version is a true reflection of how it's been. It's all been a bed of roses...that is mostly bright, cheery and fragrant but with the inevitable thorns...you try sleeping on a bed of roses!

Until this week. For me this week has been really hard. It's difficult to explain because I can't put my finger on how I'm feeling or why, but it feels a lot more thorny than before. As you know we had relatively good news from the halfway CT,  Nick continues to feel pretty well, running every day (still!) and she feels very positive about her progress. I seem to have got a bit unwound, a bit wobbly and a bit fixated on the negative. Quite why this has happened now is a mystery. Maybe it's inevitable but it still makes me feel sad, scared and not much use to Nick.

I have this thing in the autumn (I know it's spring, bear with me) where I love to catch falling leaves and make a wish if I manage it. This is tricky at the best of times but with a few small dogs under your feet let me tell you it can be downright dangerous! Anyway, I always attach great importance to making these wishes because on the odd occasion when I actually capture a dancing, twirling leaf spinning on the breeze it feels a little magical. Last autumn Nick was in so much pain that I felt like we needed a magical miracle to get rid of her pain and so every leaf I caught gave me one more wish for a pain-free, active Nick. Physio, osteopathy and massage had all failed so I turned to nature. I stumbled over tree roots, slipped in mud and nearly fell off my bike trying to catch my elusive falling skeletons of hope but nothing seemed to work.

Once we found out the cause of all this worsening pain and got started on the gruelling treatment programme the improvement was startling, like the miracle I'd wished for. It was hard to believe how quickly Nick began to feel better, from hardly being able to walk to running 3 miles just 3 weeks later, getting her appetite back and putting on weight. So it made me happy! Like catching a million golden leaves tumbling from a clear blue sky! There was such a sense of relief. And that feeling has lasted as Nick has continued to progress positively and to feel well. But now I feel like I've lost my footing and tripped over a yorkshire terrier!!

I feel self-absorbed and pathetic writing about this. I don't actually feel like writing at all and I'm sure you don't want to read my ramblings about my little insecurities but I'll try to press on unapologetically. If I'm being completely honest I'm scared about Nick dying. There, I said it. This was how I felt right at the beginning, it's what you automatically think about when that cancer word first slips out of some brave doctor's mouth (brave because our lovely GP was brave enough to say it without absolute proof, before biopsies and blood tests, early on when other doctors had said, 'it might not be anything to worry about, it could be a bone infection...although that would be very rare!'. He didn't gloss over the most likely diagnosis and that was the right thing to do.) So you hear the word and your brain translates that to a death sentence because nothing else seems so certain. Then the treatment started, giving us a goal, a purpose, a direction and it went so well that all thoughts of it not working soon leave your mind, maybe because you just can't go on feeling that desperate. It was all good; no pain, not too many side-effects (none for me, I felt fine!!)....too good to be be true maybe? And now the bubble has burst in my face and once again I wonder what it would be like to be alone.

I'm not saying that's all I think about but I am aware of it in the back of my mind, in those dark corners where it's probably best not to go! The effect on me is that I am grumpy and short-tempered, crap drivers really piss me off, I'm over-sensitive and prone to tears. I feel overwhelmed by things that I would normally take in my stride, although some of the things I've been taking in my pretty long stride lately are verging on monumental I guess. It's rubbish. And who bears the brunt of this? Nick, of course. She, who so far today, has run 5k, done 10 press-ups and is at this minute lifting weights! So I'm hoping that a problem shared is a problem halved and actually as there are so many of you reading this maybe this problem will be divided into enough tiny parts (like hundreds of leaves falling from one tree and being caught by all of us together) that I won't even notice it any more! I know I'm entitled to feel a bit fed up with all this going on but the timing has taken me by surprise, why now? Just when things seem to be going OK and heading in all the right directions? I should be feeling all spring-like, full of the joys of gamboling lambs, greenery and sunshine but it seems like autumn is back in my head with all that that entails.

Nick has had down days too, odd ones here and there, 'for no apparent reason' she told me once when I got home from work to find her feeling gloomy. No apparent bloody reason??? She has also endured some unpleasant side-effects from the healing poison they pump into her veins and into her spinal fluid; nausea, painful glands making it hard to swallow, a vile taste in her mouth, painful numbness in her fingers, sleepless nights....not to mention the insipid weight of the shadow of disease which, even though she can no longer feel it, is still lurking. She copes amazingly well most of the time though, which she says isn't that difficult because she just loves not hurting! Why wouldn't you?

Meanwhile my coping mechanism seems to have temporarily deserted me and it's hard to search for it when I'm not entirely sure what it looks like. How do we cope in situations that question everything that is precious to us and threaten our little bubble of peace and normality? I'm damned if I know. Maybe in some weird way Nick is more in control because she's the one feeling the massive improvement in her pain, getting the treatment, taking the pills, feeling the bizarre side effects whereas I can only watch and wonder. I went from a terrible feeling of helplessness at the beginning, being utterly impotent in the face of this invisible cancer, to feeling at least somewhat useful when I could pull a few strings at the hospital, drive Nick to her appointments and help her remember and process the bewildering amount of information she was given and to make the seemingly impossible choices we were offered. Now things have calmed down and Nick can take herself off to chemo, chat with the nurses she is getting to know. She knows what to expect and how to deal with it. She doesn't need constant reassurance, she has found her feet and perhaps that has contributed to me losing mine.

One fear I have is that nothing will change. On the one hand it may seem like the best thing to wish for is normality to be restored, like nothing ever happened. Move along cancer, nothing to see here. But on the other hand surely something has to change? We can't merely go back to life as it was can we? Not that we live too mundane an existence but the world has tilted on its axis so some re-evaluation seems in order.

I interrupted this post to go and put up loads of flags around the village in preparation for our festival. The sun shone on us, we spent time with good people and a lovely greyhound, getting dirty and making the place look fabulous all of which felt great. Then we walked the dogs and cut some branches for our easter tree. Important things.

This may not have been the easiest blog to read, it certainly wasn't the easiest to write but I hope it'll help; help all of us be mindful of the complexities that come with a life-threatening illness and the far reaching effects of that. There are other things that help of course; visits from friends, the beautiful bracelet Di gave me this week engraved with 'what would nick do?' Hanging out with dogs who epitomise mindfulness and have no concept of 'what if?' and of course getting out for a run, trying to run a bit further so as to do a bit better when it comes to The Great North Run in 5 months time!

https://www.justgiving.com/fundraising/run-or-die

Thanks again for reading, for sharing and for being there quietly helping to catch us if we stumble and helping to catch those leaves and send us little wishes for big miracles, it means the world to us.