A year with cancer #nurture1314 @imagineinquiry

I’ve thought about writing this blog for a long time. Much of it concerns events that are very personal and not something I have discussed openly on Twitter. I decided very early on I would keep that part of my life off my timeline and not write about it in blogs. For that reason I’m not publishing this on either mantleoftheexpert.com or imaginative-inquiry.co.uk.

I’m still not really sure what the point is of writing it, but recently I’ve been reading the #nurture1314 blogs and they have made me reassess and reflect on my year and what happened to me. Maybe some people who read it might find it of interest and others, who find themselves at some point going through similar experiences, might find it helpful and informative. Anyhow, here it is.

Diagnosis

In many ways my year started not on 1st January 2013, but on October 15th 2012. This was the day I got the phone call from my consultant confirming his diagnosis that I had High-Grade Non-Hodgkin Lymphoma. He told me to come into his surgery right away.

The picture he showed me and Claire on his computer screen was difficult to process. It was an MRI scan of my pelvis: one side was normal, while the other contained a grey mass the size of a large grapefruit filling the entire cavity. The pain I had been experiencing for some months was being caused by a tumour eating its way through my pelvic bone.

Dr Bowles explained I would need six to eight rounds of R-CHOP chemo followed by a stem-cell transplant. The R-CHOP would come in three week cycles, starting as soon as possible, the stem-cell transplant would probably happen in April or May, depending on the success of the chemo. It was very unlikely, he explained, that I would be back to work before September the following year.

Claire and I sat and tried to make sense of it all. My first thought was, ‘How are we going to cope financially?’ My second was, ‘Would I be able to play football again?’

Dr Bowles shook his head, ‘I’m afraid not. Although the bone will grow back once the tumour is gone, it will never be the same again. I’m afraid your career is over.’

Crazily, this was almost the thing that upset me the most. No more running around with my aging, fat mates, on a Thursday night.

Treatment

I can’t speak for everyone treated in hospital, but the service at the Norfolk and Norwich Haematology Department is utterly brilliant. Unfailing friendly, thoughtful, and professional, the doctors and nurses of the Colney Ward are among the finest people I’ve ever met.

R-CHOP chemotherapy involves a cocktail of five drugs: some are administered orally, others through an intravenous drip, others by injection. The treatment is given in three weekly cycles as an out-patient. The injections and drip usually take between five to eight hours unless the patient has an allergic reaction, I did. So the first course took twelve hours.

As well as R-CHOP patients are required to take a further cocktail of drugs including: steroids, two types of anti-sickness, anti-acid, as well as Paracetamol and codeine for the pain. The worst thing is keeping track of when and how much to take. Too much paracetamol (as everyone knows) will kill you, but when your head is addled and you’re taking it eight times a day it is easy to lose track and take too much. I kept track using my iPad, meticulously recording each dose, day and night.

The chemo makes you tired, but the steroids keep you awake. It’s a weird nether-world of hyper-exhaustion, mixed with nausea and intense hunger, that wipes you out but won’t let you rest. The treatment I was on resulted in a predictable pattern of side-effects that I quickly began to recognize:

Day 1: chemo

Days 1-8 Steroids, nausea and bad moods

Days 9-15 Exhaustion, headaches, shooting pains and numb fingers

Days 16-21 Some relief and normality: lots of sleeping, but a clear head

My Response

From the day I was diagnosed I decided to take a belligerent attitude to my illness: I was determined it wasn’t going to take me easily.

So I made some commitments:

  1. I would walk every day, without exception.
  2. I would plan to write around my treatment (but not about my treatment) and would start a blog.
  3. I would focus on the opportunities my illness was giving me – time with my family; time to think and reflect; time to write; time to watch films; time to watch cricket in the middle of the night; time to watch Breaking Bad from beginning to end; etc
  4. I would go to every home game I could at Norwich City – Finn (my son) and I are season ticket holders.
  5. I would find new ways to make money.
  6. I would not dwell on my illness.

Walking

I live in a beautiful part of Norfolk on the edge of a country park. From my front door I can walk a five-mile circuit that includes, a path through a wood, a route across a grassy meadow, and loop of a lake. For the past fifteen months I have walked this circuit every day, with only one three week break while I was in hospital after the stem cell transplant. To begin with I shuffled for perhaps thirty minutes to the bottom of the hill and back. But, as the chemo began to shrink the tumour and the pain abated, my journeys got longer and my stumbling limp disappeared. I’m convinced this daily exercise helped me cope with the treatment and kept me from getting depressed, and I recommend it to anyone who finds themselves feeling low or ill.

Writing

I had wanted to write for a long time before I became ill, but my teaching and other work never gave me the time to properly concentrate. Suddenly I found myself with long hours of nothing. I felt awful for much of the time, but I could think (when I wasn’t sleeping). Fortunately the treatment cycle I was on gave me five to seven days in the sequence when my mind was clear, I decided I would spend as much of that time as I could writing.

This turned out far better than I imagined. I started blogging and writing once a month for the Guardian Teacher Network, consequently editors of other magazines noticed my writing and began to offer me paid work. This was both brilliant and unexpected: as well as bringing in some much needed funds. I also found I enjoyed writing blogs and engaging in conversations with other bloggers. I had been editing mantleoftheexpert.com since 2005, but decided to start a new site called, imaginative-inquiry.co.uk as a supplementary site which would include planning, resources, and thoughts on education. My first post was 1 January 2013. Since then I’ve written (I think) about eighty-seven pieces for the site and other publications with a total of approximately 150,000 words.

Twitter

On the days when I was too ill to write anything of any length I would lay in bed and have conversations on Twitter.

I was introduced to Twitter by my friends @richardkieran and @emmabramley who both recommended it to me as a good way to be in contact with other teachers. To begin with I wasn’t much interested, but one day in mid-November I opened an account and started following some of the conversations. To begin with, much like every new person on Twitter, I couldn’t work out what was going on and soon got bored. But, with little else to do, I went back the next day and then the next. Eventually I started to join in and discovered it was fun and informative.

Very unexpectedly, Twitter became a strange new obsession. In many ways it was the perfect medium for someone like me who was cut off from having the normal kinds of human interactions. It kept me in touch with other teachers and allowed me to continue the kinds of professional dialogue that I enjoyed so much at work. I found I could have stimulating and challenging conversations (even quite heated) with other teachers who were just as animated by issues around education as I was.

In a little over a year I tweeted over 10K tweets, a crazy number, which I realise now is fine when you’re spending 18 hours a day in bed, but is not conducive to a normal and happy family life. For this reason one of my new year resolutions for 2014 is to spend much less time on Twitter.

From the point of view of using it for education, I think Twitter is very much a double-edged sword. Having spent an inordinately long time over the past year reading and participating in Twitter conversations I have seen the very best and the very worst of professional dialogue. While some users are friendly, supportive, and collaborative. Others use Twitter as their own personal soap-box and see it as an opportunity for attacking and ridiculing the views of those they disagree with. I find this attitude difficult to understand and hope over the next year we can establish, as a community, a more tolerant, respectful, and polite society for discussing, disagreeing, and sharing: without the need for making unnecessarily inflammatory statements and deliberately degrading the work of others.

Time

Facing a situation where your normal freedom is severely restricted is oddly liberating. As Viktor Frankl observed: ‘When we are no longer able to change a situation, we are challenged to change ourselves.’ My illness forced me to have a response. My response could have been to see it as a terrible curse, a punishment, or a miserable twist of fate (why me?). I chose, however, to view it as an opportunity, a chance to spend time on some of the things I had not done before and to change myself.

I bought, via Amazon, a stack of index cards, a box of pens, and a pack of blu-tack. I then made a plan of all the things I was going to do while I was on chemo, writing the different objectives on the index cards and sticking them on the wall at the end of my bed. As I finished each of the objectives I ticked them off. This helped me keep track of my plans and the things I was achieving. It is very easy to get stuck in the moment when you feel ill, just trying to cope with getting through the day and losing track of what you have done and hope to do. My index cards helped me focus on longer term goals and the things I was getting done.

Chemo is a slow and methodical treatment. The doctors work out the right dose to destroy the rapidly dividing cancer cells, while trying hard not poison the patient so much they die. It is a remarkably patient process, planned out over months, from decades of trial and error. They are careful not to make promises, nothing can be guaranteed, but they are incredibly meticulous and conscientious, making every possible effort to ensure success. While experiencing this treatment Time is not measured out in years – imagining yourself as old seems somehow ‘unwise’ – but in three week cycles, each one a series of days where you start off feeling unwell but full of energy and then get progressively worse, before starting to feel well again, before getting another dose of poison that will start the whole cycle all over again. Time is slowed down during this process: dragging itself along like wet tarpaulin. But this is fine, you don’t want it to fly, that’s for the healthy and the fit, for the ill every day is precious.

Which is why I planned out every day. My aim was to use my illness as an opportunity, a chance to be with my children, to write, to read, and to think.

My illness also gave me the Time to talk and to be with people I liked. Many lovely and supportive friends joined me on my walks round the lake: Tim, Geoff, Richard, James, Gemma, Simon, Marianne, as well as Claire and the children.

Norwich City

An odd thing I noticed was how little affected the world was by my illness outside of my family and friends. I liked this. It was one of the reasons I never openly shared my illness on Twitter. For people who are ill, their illness often becomes the topic of conversation (or the elephant in the room) and this can be very boring. Twitter and going to watch Norwich City were things I could do that had nothing to do with my illness. The players on the pitch and the fans in the crowd knew nothing about me: their concerns and their interests weren’t affected in any way by my cancer. They were cancer-free, a world that would carry on irrespective of how I felt and if my treatment worked or not. Games would happen on a Saturday afternoon, Norwich would/or wouldn’t be relegated, and there would be a next season, whether I was there to see it or not. This was reassuring in a way I still can’t exactly explain.

Despite feeling really crappy on several occasions I managed to get to every home game apart from two – Spurs and West Brom – this felt like a major achievement and one I feel stupidly proud of.

Just for the record, I watched Norwich stay up on the last day of the season from my hospital bed, illegally streaming the game onto my lap-top.

Work

The biggest worry when you are diagnosed with a major illness (apart from the obvious) is not having enough money. I’d been teaching nearly twenty years and we relied on my income. Fortunately sick pay covered most of the time I was off work and Claire’s business took off. So, we were never as badly off as we feared.

Going back to work though was always going to be a big challenge.

I had my stem-cell transplant in May, which was not much fun. Basically the hospital extract stem-cells from my blood using a sort of dialysis machine. These were then frozen and kept in cold-storage. I was then admitted to hospital and given a week of high-dose chemotherapy. At the end of this I was given back my original stem-cells – bizarrely the process creates a very strong taste of sweet-corn – which effectively ‘reboots’ the immune-system, wrecked by the chemo. Unfortunately this takes about two weeks to work. In the meantime the body is completely open to infection and most people end up back in hospital. Which is what happened to me.

After a week of antibiotics I was allowed home. This was mid-May. By the end of August I was feeling much better, but still not strong enough to go back to full-time teaching. This was a bit of a blow, but not unexpected. Teaching, it turns out, is bloody hard work – who knew?

Since then I’ve decided not to go back to teaching full-time for the foreseeable future. This is a big risk financially, but is the only credible option in the circumstances. I’m therefore going to continue to work supply – which I’ve been doing since August and have found fantastically rewarding – writing as much as possible, and doing coaching and support work whenever I can. Next week I’m working with the PGCE students in Newcastle, which I had to skip last January for the first time in five years.

My Family

On the first day I was diagnosed I sat with Claire in the hospital waiting to be x-rayed. We talked and cried and held each other’s hand. In the same way I guess most couples do in those circumstances. And we decided we would tell the children straight-away in the most honest way we could. We have three children: Ettie 10 years old, Finn 12, and Lilly 14.

When we got home we sat them down and explained what was happening and answered all their questions. There were more tears and more hugs, but they coped. As children do.

In fact, they were all brilliant. After the first few weeks they got used to the new schedule in much the same way I did. They took the piss (in a kind way) when my hair fell out and they took care not to wake me up when I was sleeping during the day. Christmas was OK, fortunately the third week of my treatment cycle coincided with festive period so I could eat and drink reasonably normally. I fell asleep in front of Dr Who, but that was perfectly normal too.

Claire was utterly amazing. Caring for me sensitively and unconditionally, but without being maudlin or over-dramatic. I am certain I would not have survived without her love and support.

The rest of my family were great too and so were my friends. Many were incredibly supportive, helping out with the kids, coming round the lake, and talking to me about education and any other subject I wanted. They are all very fine people.

2014

I’m 49 on January 25th – this is good, being alive is very good. I would like to be alive when I’m 50 too. That is my big ambition for 2014 – to be around for 2015.

I have some other, smaller, resolutions – writing more, teaching more, reading more, exercising more, eating less, getting fitter etc. – but they are not so important.

I am resolved to spend more time with my family and do more ‘family’ things.
I am resolved to spend much less time on Twitter (as much as I enjoy it).
And I’m resolved to start playing football again with my (old/fat) friends on a Thursday night.

Amazingly my pelvic bone has confounded my consultant’s original prognosis and grown back as good as new. Its been checked out by a orthopaedic surgeon and I can restart my career whenever I feel ready.

Result.

Lessons learnt

By nice. Spend more time with the people you love. Plan ahead and stick to your plans. By polite, even when cruelly provoked. Work is not everything. Neither is money. Be honest with people. Don’t put things off: do them. Don’t be intimidated and don’t be shy. Enjoy life.

26 thoughts on “A year with cancer #nurture1314 @imagineinquiry

  1. Cherrylkd

    Hi Tim. I’m astounded! You’ve certainly kept that quiet. I totally understand why though. You would need to retain a sense of normality in some areas of your life. A space to just be Tim, not the teacher with cancer. Thank you for always being so supportive of me in whatever I’ve done. Goodness knows you’ve had enough on your plate without my shenanigans with WordPress and my blogs.
    Now obviously I wish you all the luck in the world. I want you to get better even if you have just almost made me cry.
    Happy New Year to you and your family, I sincerely hope it’s a good one.

  2. Marian

    Oh my…this must have been a nightmare. How well you and your family have coped! I wish you every blessing for 2014!

  3. Damo

    Thank you, Tim for the most inspiring #nurture1314 of this season. Good health to you and look forward to your #nurture1415 post!

  4. Debra Kidd

    And my friend, because you are so modest, you didn’t mention that even when in the middle of the most awful treatment, you took time to help and advise others, even setting up a website for my petition, because you are one of life’s givers. And a re-grown pelvis is the very least you deserve :-) Happy New Year to you and yours.

  5. Mary

    I hope the coming year brings you health and happiness, and the promise of more health and happiness. Best wishes to you and your family.

  6. Wayne Jenkins

    Wow Tim, I would never have known from your tweets what you have been going through. You are a brave man and this post has very powerful messages.
    I was feeling a little bit gloomy and sorry for myself until I read this. I wish you all the best for the future and look forward to reading your tweets and posts throughout 2014.

  7. Julian S Wood

    Football’s a great leveller!!

    Shame you didn’t put for 2014 the unmasking of a certain anonymous Twitter troll!

    I hope you don’t cut down too much on Twitter as have enjoyed our conversations!

    All the very best for 2014 & look forward to hearing about how well your 50th went in 2015!

    Julian (ideas_Factory)

  8. bt0558

    Hi Tim

    I am gobsmacked, humbled and inspired in equal measures. Having seen you on here supporting people and giving positive advice, at times when you could not have been blamed if you had curled up and shut the world out, you have my respect and best wishes.

    I am not normally a girlie, but I have to admit I had tears in my eyes as I read the post, especially the bit where you started to move towards getting better. A process which I hope will continue as the signs seem so positive. Good for you.

    “By nice. Spend more time with the people you love. Plan ahead and stick to your plans. By polite, even when cruelly provoked. Work is not everything. Neither is money. Be honest with people. Don’t put things off: do them. Don’t be intimidated and don’t be shy. Enjoy life.”

    Such profound advice which I am sure takes on a new meaning when these things are no longer as inevitable as we always assume they will be. Should remind us all of what is truly important.

    Best wishes to you, Claire, Ettie, Finn and Lilly and may 2014 bring the happiness that you all deserve.

    Happy New Year

  9. Nic Richardson

    Wow, you have been dealing with so much, yet still supporting others with advice on Twitter, and stuff on your website. You should be incredibly proud of all you achieved in the last year, and I wish you every good luck vibe available that you achieve all of your goals for the year ahead…especially the big one x

  10. Vic Goddard

    Tim

    I read this as soon as you tweeted it and it has taken me all day to think of what to write. This blog is incredibly close to home for me and it has had a real impact. I remember going back to school the day after my dad died a few years ago and everyone telling me how brave I was etc. That was nothing compared to your bravery. I will talk to you more directly soon but this blog has helped me more than you can know.

    Kindest regards

    Vic

  11. Helen Lehan

    Thank you so much for sharing such a beautifully written piece about a cruel disease and it’s effects on your life. I have just put my three boys to bed tonight and seen your twitter post. I am so glad I have read this – a total inspiration which I will share with others. I lost my brother to cancer five years ago and he showed bravery, kindness, wicked humour and honesty which I can see in you too. I will carry your lessons learn’t into 2014. Life is for living in every moment. May you and your family be surrounded in love in 2014.

  12. Ross McGill

    3 things Tim:
    1, Twitter trolls; negativity etc. 100% right.
    2. Family!
    3. Get well and keep up the positive mental attitude. Will be tough being a Norwich fan; but I’m sure you’ll be fine.

    Ross

  13. Maria

    Hi Tim

    Just had to get in touch to say how touched I was to read your blog. We have wondered abour your health as we saw you ocaisonally on your walks, and cannot express how pleased we are that things are improving. Your beligerence is working and we wish you the very best for 2014.

    I am sure that your candid and reflective writing style will ensure increasing success.

    Take the greatest care and keep walking!

    Maria

  14. Sam Aiston

    Wow Tim- so sorry to read this! My wife is a sister on the Haematology ward in Shrewsbury and she just explained all about your treatment. Your attitude is fantastic, so positive! I wish you so much luck.
    Thinking of you

    Sam Aiston

  15. Steve PIggot

    Inspirational and brought tears to my eyes.

    Thanks for taking the time to share this and for making me put things in perspective .

    Steve

  16. Mary Myatt

    Goodness, bravery and selflessness in equal measure. Awoken many memories for me, as well as for others I’m sure. Thank you Tim. What a great presence you have been on twitter through all this.

  17. Carolyn O'Connor

    Thank you for sharing this. I can’t even begin to imagine how you or your family feel. My brother inlaw is undergoing chemo for liver cancer and reading your blog has helped. Wishing you a very positive 2014 and beyond.

    Carolyn

  18. Kevin

    A deeply inspiring post that puts things into perspective and reminds us of the important things. Thank you for sharing this with us. Wishing you an amazing 2014.
    ( I have found these books to be very useful over the past year myself, anti cancer a new way of life and foods to fight cancer, hope they may be of some use to you)

  19. Helen Brown

    Thanks for this post- so encouraging and inspiring. It’s good to be reminded of the right priorities. I hope you continue to recover well.

  20. Jill Berry

    Only just caught up with this, Tim, as I’ve been reading #nurture1314 posts in the order I’ve found and saved them. This one has been a bit of a shock! Have to say I found it uplifting and inspiring, though.

    Absolutely agree with your determination to spend less time on Twitter in 2014. I very much value the contact we’ve had through this, though, and hope this is something we can maintain. And I would really like to go for a walk round the lake with you one day – any chance?

  21. Hanneke

    Thank you so much for this wonderfully open and positive account of your horrible illness and immense courage. I remember this time last year feeling fearful of what 2013 might bring. Looking back on it, 2013 has, amongst other things, been the year in which you pulled through. Overjoyed, in awe and even more inspired than ever.

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