Living with someone who’s living with cancer

As a follow-up to my post about writing or not writing about illness and death, I wanted to put down a few thoughts about living with cancer, or, more precisely, about living with someone who is living with early-stage prostate cancer. Of course, cancer is different for each person and this post is only my personal experience and not an authoritative account of what cancer is like. Your experience is likely different (and this isn’t my first or only experience of being close to cancer, as I’ve mentioned before.)

Please note that I don’t say I’m living with someone who’s “fighting” or “doing battle” with cancer. As Anthony Wilson has written on his truly excellent blog, the language of battle and fighting is still commonly used across the media when reporting incidences of cancer and that’s problematic, as Anthony comments:

The notion of a ‘battle’ places the responsibility of getting better upon the patient. This opens up the possibility that it is the ‘strong’ or ‘deserving’ patients who survive having cancer, and that those who die from it are somehow lacking in moral fibre.

Embedded in the notion of people with cancer as soldiers, doing battle, is the idea that they must stay positive in order to be strong and fit for combat. Not only that, but the people around them must also be ‘positive’. ‘Positivity’ is suggested as, if not an actual solution or cure, then something essential that will cause harm if it is not always present. That’s a huge pressure to place on people who are already experiencing a multitude of emotions, including worry, anxiety, sadness and anger. To insist on “staying positive” is to ask people to shut down other emotions, rather than giving them the opportunity to actually talk about how they’re feeling. Even eternal optimists feel worried, sometimes.

It’s natural, though, to ask someone who’s expressing anxiety to “try to be positive” or to “try not to worry.” What else is there to offer? It would hardly help to say “Yes, you’re right to be worried, it will probably all end terribly.” Perhaps, sometimes, it’s helpful not to say anything at all but to simply be available to listen. Sometimes, just being present, and silent, is enough. Or you might say something like “I’m sorry you’re feeling like this,” or “I can see how that must be worrying for you.”

One thing I’ve become more aware of, since Andrew was diagnosed, is how many people’s lives are affected by cancer. If it’s not someone’s close relation or friend, it’s someone they know well or someone they used to know. And, as we all know, there are many stories in the media of people who’ve died (“lost their battle”) from cancer.

Andrew and me are holding on to the thought that not everyone who’s diagnosed with cancer dies from it. We’re used to seeing images of people looking noticeably thinner and frailer, and of those who’ve lost their hair following cancer treatment. I haven’t noticed that many pictures of people who look reasonably well, which is likely if the cancer is in the early stages, as Andrew’s currently is. Andrew has said to me that he feels rather guilty for not looking more ill. He’s noticed people avoiding his eyes but examining his hairline as they’ve been talking to him. His situation is that he’s going to get worse in order to get better. That is, he may well look a bit ill when he’s undergone a radical prostatectomy, as he will do soon. We’re hoping that this will remove the cancer from his body.

I was grateful to a social media friend, Tracey Upchurch, for sharing this image on Twitter:

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It shows Kurt Jewson, a 44 year old man from Helston, in Cornwall, days after his prostatectomy operation. Generously, Kurt Jewson has decided to show people this image as a means of raising awareness about some of the possible symptoms of prostate cancer (which were dismissed in his case because of his young age – in spite of reports that prostate cancer is being diagnosed more frequently in younger men). The symptoms might include

  • A need to urinate frequently, especially at night
  • Difficulty starting urination or holding back urine
  • Weak or interrupted flow of urine
  • Painful or burning urination
  • Difficulty in having an erection
  • Painful ejaculation
  • Blood in urine or semen
  • Frequent pain or stiffness in the lower back, hips, or upper thighs

More information at Prostate Cancer UK.

Kurt says “Feel free to share, if you want. It’s too important for me to be vain about.”  I’m really grateful for Kurt for doing this, not least because he is the first person with prostate cancer we’ve come across who’s younger than Andrew. (Andrew is 46). It’s helped Andrew feel a little less alone with the cancer.  Sending all good thoughts to Kurt.

Well, that’s my news for the week. We hope to have a date for the prostatectomy within a month. Meanwhile, Andrew’s carrying on with his job, our kids are carrying on with their studying, Saturday jobs, and teenage life, I’m carrying on with poems. As always, thanks for reading my blog. Thanks for listening.

28 thoughts on “Living with someone who’s living with cancer”

  1. Hi Josephine
    my husband is coming to the end of his chemo (having had a radical prostectomy) and he has been given the all clear!!! I am singing in a concert – ON FRIDAY, MARCH 11TH, 7.30PM – with Mother’s Jam in aid of Prostate Cancer charity in Marlborough and attach the info:
    ‘The concert is in aid of both Prostate Cancer Research the Brighter Futures Radiotherapy Appeal from the Great Western Hospital, Swindon, who need to raise £2.9m to build a centre to serve south Wiltshire. Currently, cancer patients have to travel to Oxford, Bristol, or Bath. Marlborough Community Choir raised almost £2k for them last year, and this concert is part of the new effort for 2016.
    We’re delighted the Marlborough Community Choir, Mother’s Jam and the Magnificent AK7 will all be singing.
    FREE ENTRY but we’re taking up a retiring collection, all the proceeds of which will go to the charities.’
    with all best wishes Janet

    Liked by 1 person

  2. Thank you for sharing Josephine.
    It is difficult to discuss scary subjects like this but somehow, knowing that you are coping – gives comfort – reassures us, the reader, that we too could cope and the list of early symptoms is very useful.

    Thinking of you and sending all good wishes to Andrew.

    Liked by 1 person

  3. Very refreshing comments. I’m glad I stumbled across them, I often find the language associated with illness uncomfortable. Thank you for sharing your thoughts x

    Liked by 1 person

    1. I’d like to say ‘I know how you feel’. Except I don’t. When I was told I had prostate cancer I didn’t know how I felt. Fiive years on, I still don’t. I had colonic cancer12 years ago. That was sorted out with a pretty uncompromising bit of surgery. The prostate is contained with hormone therapy. The key thing in both cases is that I had to be proactive in both cases to get a diagnosis.In both cases I should have gone to doctor a long time before I did. But even at 68 I had none of the obvious symptoms of prostate cancer.I t should be routine for men to be screened early for both…….my parallel would be with screening for cervical and breast cancer. But it isn’t and men will go on not looking out for themselves. Which is looking out for the ones who love them. So thank you Josephine and Anthony for Sharing lives that just might make someone think that they could save a lot of people a lot of grief. Like Anthony says. Bless you all.

      Liked by 2 people

      1. Thanks for sharing your experience, Fogs, and, like I say, every case is different for each person. There is still much to be learned about prostate cancer (and all cancers). Kurt Jewson presented to his GP with blood in his urine but wasn’t tested for prostate cancer for a year because it was assumed he was too young. My Andrew only knew about the symptoms and only knew to ask (actually he insisted) his GP for a PSA test (the blood test that can detect the antigen) because a work colleague had been through a similar experience. The more people, men and women, share what they know, the better, in my opinion. Love to you, Fogs xx

        Liked by 1 person

      2. Anthony, thank you. Glass much more than half full. Tonight I listened to Pascale Petit reading new poems. Poems about attending on the sick. We keep each other alive. It’s what we do. If someone had told me twenty years ago I would be writing poems and that it would make me alive I would have laughed. There you go.

        Liked by 2 people

  4. My dear friend the West asussex poet, Margaret Wilmot, lost her husband to bladder cancr just before Chrismas. This had dolloed on from prostate cancer, which had been treated eith chemotheray the year before. Apparently they had been unaware of this possibulity and were not prepared it. I think this highlights the importance of asking the right auestions ans good medical follow-up Thank you and Andrew fo your openness. So important.

    Liked by 1 person

    1. Thanks for sharing this, Wendy. It’s hard to be prepared for something like that. Yes, good medical follow-up, asking questions, not being afraid of ‘causing a fuss’ – it’s important we try to remember to do all of this. Sorry about Margaret’s husband. x

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  5. Thanks for sharing some of yours and Andrew’s experience, Josephine, and for the important information about some of the symptoms to look out for. I agree too that the language we use is important. And the importance of simply being present and listening applies in other potentially distressing situations too, such as people experiencing mental health problems. Sometimes listening is the best thing we can do. Sending love to you and your family.

    Liked by 1 person

  6. Josephine, thanks for sharing these thoughts. I wholeheartedly agree with you and Anthony about the language that’s used around cancer and other diseases.

    Your last paragraph speaks volumes about you all as a loving, giving family.
    Hugs, j

    Liked by 1 person

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