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From London to Berwick: Culture shock? Oh, yes!

Yes, but what cancer is it and how did you find out you had it?

This week both David Bowie and Alan Rickman have died of ‘cancer’ and I find myself desperate to know what cancer they had.

I received my cancer diagnosis on October 14th 2015 in a slightly untidy rather cramped examination room in Alnwick Infirmary in Northumberland. The crumpled bed was a slightly weary witness. Barbara, the nurse specialist, was gentle and apologetic as she explained the situation. I didn’t burst into tears. I didn’t actually feel particularly surprised. The fact that a large polyp had  been found during my flexible sigmoidoscopy (tube plus camera up your bottom) the previous week, and that I’d been summoned from Berwick to Alnwick (30 miles south down the A1) for a face-to-face chat was a pretty strong heads up. But that was me. Everyone will react how they react to such life-impacting news.

I’ve now had plenty of practice at telling people I have cancer. And I know that hearing that someone has cancer is shocking and can fill people with a terror more intense than that felt by the person who actually has the cancer. Telling my two daughters was one of the most distressing things I’ve ever done: I didn’t want them to be hurt and upset. Of course they were. But we wept, hugged, talked (eventually) and are getting on with our lives, incorporating our new guest into the day-by-day as best we can.

I confess that one of my initial reactions to my diagnosis was: ‘Phew. So this is how it’s going to be. At least I know now. It’s not going to be a car crash or a heart attack or….’. This was quickly followed by a strange sense of relief that I’d be gone before my husband and wouldn’t have to deal with clearing out the garage! My Christian faith means that I am also pretty fascinated – excited even – about what comes next… although I’ve since realised I’m not quite ready to find out yet!

Such thoughts were quickly followed by a realisation that the times I treasured most and wanted to revisit were family times. Not once did visiting the the rose-red city of Petra crop up, or swimming with dolphins, or abseiling from Sydney Harbour Bridge. No, it was all about family gatherings (my brother at the barbecue, sister-in-law on pudding duty, husband on music selection, Mum and I with a glass of fizz and loads of laughter all round); it was hill walking and chatting with friends; and, perhaps most potent symbol of being alive, it was lying skin-on-skin with my darling husband, just feeling his warmth and our heartbeats.

I now see that I did enter a cancer bubble. This is a place where you drift through various scenarios in your mind without any of them seeming real: your own funeral, other people’s reactions, the things you won’t have to do now (see garage duty above!). Simultaneously, everything seems brighter and more defined than ever before: the colour in the sky, the way your hands rest on the steering wheel, the sound of someone scratching their chin, the scent of wet leaves. A few months and a major operation down the line, I have adopted a more pragmatic approach: if I am going to die from this, it’s not going to be just yet. So, I’d better get on with my tax return, making a will (both jobs done before the op), and plod on with finishing that Open University degree I started an age ago.

Despite the fact that our ability to treat and cure many cancers has come on leaps and bounds, it still strikes the fear of God into us when we hear someone we know has got it. Part of this is terror that it’s a death sentence for our friend or loved one and part of it, I believe, is a sense of relief that ‘it’s not me’. This is a visceral human reaction – if someone you know has cancer, surely the odds on you getting it must somehow be reduced? I have found that almost the first question many people ask me is: ‘How did you find out? What were your symptoms?’ So, back to the sad deaths of David Bowie and Alan Rickman of ‘cancer’. As I say, I’ve found myself desperate to know which cancer/s they died of. Perhaps this is the person with cancer’s equivalent to ‘what were your symptoms’? There is a sense of relief that comes with the knowledge that the person who died didn’t die of your cancer, just as it’s a relief to learn you don’t have the symptoms that the person with cancer had.

So, just in case you don’t know or haven’t worked it out: I have bowel cancer. One of my doctor friends was angry with me. How, he asked, if someone who is articulate and engaged can ignore/be ignorant of the symptoms can we get the message out there and save more lives?

He has a point. Caught early, the prognosis for bowel cancer is good. And, according to Cancer Research UK, it is the fourth most common cancer in the UK (after breast, lung and prostate) and the second most common cause of death after lung cancer. Of course, now I know, it seems obvious that the symptoms I had might indicate bowel cancer. However, at 53 I’m youngish, I’m pretty fit, I eat a pretty healthy diet. Additionally my symptoms did not happen simultaneously or even in a neat identifiable pattern. No, they were intermittent and, to me, unconnected. It seemed reasonable to suppose that I was having a bit of irritable bowel syndrome here, a haemorrhoid there, and a bit of menopause thrown in. Certainly nothing to trouble the doctor with. And that seems to be the reaction of the majority of those with bowel cancer who, like me, are diagnosed at Stage 3/Dukes’ C (Cancer Research UK cite 24% of people as being diagnosed at this stage with just 15% at Stage 1/Dukes’ A).

For the record, and your information if you would like to know here is a list of what I believe were my symptoms and a link to the Bowel Cancer UK website and NHS Choices and the symptoms they list.

  1. A couple of year ago (or maybe slightly more) I had a strange sort of after-burn ache in my back passage (sometimes quite painful) after I’d done a poo, and sometimes it just seemed to occur a bit randomly (often at night) as if I needed a poo or had wind. This happened a few times but very intermittently and then went away. I put it down to just one of those things.
  2. A couple of years ago I had bright red blood when I did a poo. I thought it was probably a haemorrhoid but promised myself I’d go to the doctors if it happened again. It did happen again but about a year later, so…
  3. About a year ago I very rarely seemed to do poos that were formed. Mine were always a bit sloppy. I put this down to eating lots of fibre and roughage, and the fact that I’ve always had a rather temperamental tummy.
  4. Intense night sweats (I’m a woman of a certain age so, obviously, I put this down to the menopause) which I now know are a common symptom of various cancers.
  5. Last summer this symptom stepped up and I realised I was worrying about it. Then I started to get flecks of blood and mucus in my poo. I looked up bowel cancer symptoms on the internet.
  6. But it wasn’t until I saw Ed Byrne at the Maltings in Berwick in October 2015 and he told a joke about going to the doctors with a long-term case of the squits (you can read about that here if you’re interested) that I finally decided to get myself checked out.
  7. I was exhausted – but aren’t we all? And besides I was still managing to walk for miles and go out for runs and entertain and….and…and…

I did not suffer from weight loss or general abdominal pain.

And for your delectation, here’s a pic of me just before I went into theatre on 9th December 2015.

IMG_2240

I did not look quite so chirpy after the op. Five weeks on I am recovering and hoping to start chemotherapy in the not too distant future.

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19 thoughts on “Yes, but what cancer is it and how did you find out you had it?

  1. Fiona Elcoat. on said:

    Jackie, I had absolutely no idea. I know you are a fighter and will do your best to beat this but thank you for this blog. I suffer Ulcerative Colitis so am at higher risk from this particular cancer. But I never worry or ‘check’ if something is out of order. I will be checking my condition more closely from now on. All the best with your recovery and big big hugs. xx

  2. You are some lass, not half! Your reference to garage clearance shot to my poetic mind with a new verse to the song of which you are well aware. ‘Please don’t die before me, I’d have to clear the shed!’ Garage just don’t scan as well. Thanks for the inspiration, perhaps this can be in the album extended dance mix! LOL

  3. Janet O'Kane on said:

    I’m lost for words because I too had no idea. All I can do is send the very best of wishes to you and your family. And, if it helps, you’ve spurred me on to no longer ignore the requests for bowel cancer screening samples that I keep on being sent. Take care.

  4. Your eloquent post is a credit to you, thank you for sharing. It jumped out at me because I thought the same thing, ‘but what did they die of?’! We all know how to spot breast cancer but what about the others? How do we know we have it? What are the signs? For Gods sake! Perhaps their families don’t want to reveal the details – understandable – but surely this could be used to help others. Thank you for being so honest about your symptoms…keep fighting Xx

    • I’m glad someone else’s mind works the same way as mine! I am sure the more candid dialogue we have about symptoms etc, the more lives will be saved. However, maybe cancer symptoms are a little bit like pain in childbirth. I know for a fact that I’ve told loads of friends that childbirth really hurts but some are still surprised/shocked that it actually does! Perhaps we stop hearing/seeing what people say about cancer? I guess that each time an article or conversation does catch our attention and make us rethink or look again, it’s got to be a good thing. Thanks so much for taking the time to read and comment.

  5. Jackie, WOW! I really enjoyed your post, (if I can say “enjoyed” about such a softly spoken subject). You certainly brought out a lot of points that chimed with me. I hope you continue to write about your thoughts and feelings through this particular journey. It will help me (and many more folks -I’m sure) to understand a bit about where you are on that journey, without having to repeatedly ask the dreadful, over-used question “How are you?”. I, for one, have really appreciated your honesty and insightful writing. Keep blogging!

    • Thanks Anne. I’m glad you enjoyed the article (and, yes, I think it’s okay to enjoy it!). I will certainly blog again when something useful/interesting occurs to me. Thanks so much for taking the time to read and comment. x

  6. That’s it show who’s in charge! Affects so many and it doesn’t care if your rich or poor. Can happen to anyone. Getting the message out there too. You rock 🙂 being brave and facing it through is the way. I won’t bore you with mine. I’m lucky had my op minor I’d call it, did my Stint of radiation and pop a pill for five years, halfway now. Each day get up alive 🙂 all the very best brave lady keep smiling through your storm x

    • Thanks Wendy. Good for you! That’s what I do too each morning: open my eyes and think, ah, I’m alive! Keep it up. Really appreciate you stopping by and leaving a comment.Let’s keep the conversation going and hopefully save/prolong a few lives!

  7. Kirsty S on said:

    Jackie, this sucks (your situation, not the piece!) Thinking of you and your family and sending very best wishes. Will happily provide a stack of Scottish Field mags to keep you entertained during chemo (just joking, I wouldn’t do that to you!) Good luck with the rest of the open uni degree – you’ll smash it! Kirsty x

  8. I think this article is brilliant …… its witty and understated and ‘normality’ pack a punch ……. will share for the message and information it holds and cos sharing is caring they say …… good luck Jax xxx

  9. Martin Beaver on said:

    Hi Jackie, I only saw your blog post via Hannah Lang’s facebook (not a sentence I ever expected to write).
    The sentiment that resonated most with me was – “So this is the way it’s going to be.” I too would objectify what was happening, and find it interesting. Maybe ghoulishly. Of course having a cancer diagnosis isn’t a death sentence – though everyone would probably prefer not to have one. And its true that if cancer don’t get ya sumen else will, eventually
    I’m not a Christian and have no interest in what comes next. But I am a Stoic. And am astonished to have reached the age that I have (62). Were I to die now I would miss out on a great deal of my childrens’ lives – though that’s going to happen anyway. But it is great that you have talked to your daughters. As you imply, a car crash or heart attack might be good for you. It can be instantaneous. But whatever cancer is, it gives you time to sort some things out.
    We’ve both had a good life and a full life and at least we wouldn’t have to worry about the impact of climate change any more.
    Obviously I wish you well, as both a general statement of good cheer and a trust in the wonderful NHS: let alone your own resilience.
    We don’t know one another well enough, and I guess geography will prevent us ever knowing one another much better
    But I am glad that Joe and Sally have found further happiness in their lives – let alone me and you.
    much love
    martin

    • Hi Martin – thank you for your thoughtful and kind comments. The other thing I was potentially pleased at missing out on was Alzheimers/dementia – so prevalent in these days of longevity. Of course, after those initial thoughts of my own demise, I have now moved on to embrace the fact that it’s probably not going to happen any time that soon so having to deal with our overloaded garage might be quite a nice distraction from the day-to-day joy of children, grandchildren and family (with a bit of work thrown in for good measure)! I too am so grateful that life has gifted us and our lovely partners another shot at happiness and send you in London love and every blessing for 2016. Jackie x

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Border Lines

From London to Berwick: Culture shock? Oh, yes!

Getting Abreast of the Situation

Developing an aversion to pink: my life with breast cancer

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