Quality of life matters


It’s been a while since I last blogged. About 8 months to be exact. I have learnt one thing that blogging is difficult to maintain when you are unwell no matter the will. In fact most of the everyday tasks are challenging, even things you regard as routine. I woke up this morning thinking that I feel well enough to reflect on a difficult eight months, an existential crisis if you like. Over 7 years since an incurable cancer diagnosis I have never once believed that I would survive as long as I have and a few years longer than the medics predicted. But at its height in the last few months I did feel very ill and increasingly unable to find a way forward but this blog ends relatively upbeat so please keep reading.

A number of issues have been at the heart of the problem, most notably for someone whose love of food is well known and well documented in my girth, I started to find eating an issue. This grew to such an extent that I had anxiety attacks and just could not eat things that were my staple fare – bread, potatoes, savoury dishes etc etc. I understood fully for the first time people with eating disorders. I knew I should eat but simply could not. My diet dwindled down and I was sustained by protein shakes and fruit. The impact was such that weight dropped off me and in six months I lost over 10 stones. I also felt ill most of the time and was diagnosed with a kidney function problem and anaemia that combined to bring me to an all time low about 8 weeks ago. At this point I felt real despair and for once found it hard to see the way forward though the saving grace was that the current treatment for my cancer was, just about, holding its own. I was not depressed though and tried to maintain my positive outlook. I had started counselling to help with the anxiety and it helped a lot, my family and friends began to understand that pushing food on me would not work. But the breakthrough came when my oncologist said that the state of my general health meant I would not feel hungry so to relax and if I did not feel like eating not to worry. I was also retching most nights which made nighttime a little unsettling and I just had little energy. In fact I did nothing as I could do nothing. I felt at my own rock bottom. I was emotional and tearful, my voice became quiet and broken – I was just a wreck really. I stopped taking photos, I stopped going to football, I stopped reading, I stopped blogging, was sustained only by my love of TV soaps and TV sport and my friends and family.

Eight weeks on I feel so much better though the caveat is that it is a comparative assessment. I remain quite ill and though my kidney function has improved slightly it remains a chronic problem and could worsen at any time and renal failure is a potentially real outcome. But some good things have emerged from this period. My type 2 diabetes has all but disappeared as a result of the weight loss. My hb1ac is normal and I have stopped taking all my drugs, 7 a day plus an injection, which had become toxic to my kidneys. I now take one daily dose of insulin to keep it stable. I now have a new slim fit wardrobe courtesy of primark as my clothes hung off me like discarded tents. My voice is back and my general well-being has improved. I am eating more, though still quirkily and still cannot enjoy food as I once did. I have stopped retching at night. But feel more aware of where I am and also where I am going which also is positive.

I have been humbled and inspired by how my family and friends have responded. I feel so lucky to have such caring children and friends who go the extra mile. I cannot express my thanks to them enough. I have also been privileged to see the much-maligned and cash-starved NHS work brilliantly and holistically to bring to bear on the issues. I now regularly see specialist nurses, the GP, oncologist and urologist working together and though there are no solutions they seek the best palliative ways forward as possible.

That brings me to the future as the word palliative implies. My future as everyone’s in reality is is time-limited. No one gives you an accurate time check about death and dying but it is a 100 per cent certainty to happen. It becomes much more defined and urgent when chronic or incurable illness is around. My focus over the past few weeks has been ensuring that everything you can do to prepare is in place – from lasting powers of attorney, wills, medical decisions on future treatment, to funeral plans. It is worth getting these things right because it is not me that would have to deal with uncertainties and disputes.

So what next. Well my current cancer treatment is just about still working though for how much longer is hard to gauge. After that I am currently too unwell for any further treatment which would mean palliative care only. I would formally enter what they call with no hint of euphemism, ‘end of life’ care. The added complication is that the kidneys could deteriorate to such an extent that this becomes the end of life issue. I have discussed with the medics all relevant decisions about potential options as I think for me, and this is a personal choice, it is time to focus more on quality of life than longevity. I write this feeling fine and thinking I might still be like this in six months or more. I would like to see the summer and I remain positive. Now is not the time for regrets or introspection. Engaging with my family and friends becomes precious indeed and there is much to look forward to. I am eating better, I am taking photos again, I am blogging, I have plans to see some live cricket in the summer, a lovely birthday weekend with my two children to come in May, always a wonderful surprise, my July BBQ with friends, visits from so many friends and just the joy of living. So please enjoy my passion for life as I go forward with realism but being positive, it just makes sense to me. I will try to continue blogging.

A few recent photos:

28 thoughts on “Quality of life matters

  1. Quality of life matters. I agree. It is good guidance for me too, even though I am not ill. I’m glad you are feeling better Paul and up to blogging again. Looking forward to your July bbq xx

    Liked by 1 person

      1. Just checked with Dave. We are in Southampton for a football match that weekend. (swear words). Some times it is on my birthday so we miss it, but it is earlier this year. Fancy going out sometime before July ( but after elections on 2nd May)?

        Liked by 1 person

      2. Shame. Happy to see you any time. Not sure I’m upto going out but be great if you can call in. Let me know when you are thinking as loads of medical appointments and visitors.

        Like

  2. Paul, a brilliant insight into the fear and anxiety that any kind of eating disorder would evoke from an otherwise healthy person. So for someone with the spectre of terminal cancer sitting firmly on his shoulders your desire to keep living under your own terms of quality above quantity of life is admirable.
    It’s great to see you taking photos again, talking of cricket, the summer ahead and looking so slim I simply wouldn’t have recognised you!
    The message you give about T2 diabetes is so valuable too.
    Thankyou for blogging.
    Xx
    Mo

    Liked by 1 person

  3. Interesting to read your thoughts in such detail even though I was aware of what’s happened in recent months. I feel I have a better understanding now than when I last saw you. Not sure if that’s because in writing there’s more time to organise thoughts clearly or whether when reading there’s more time to take them in properly. I had begun to think you weren’t going to do any more blogging and am pleased to see I was mistaken. Though I follow your photos and comments on Blipfoto, they are of course more general than your blogs for a specific audience. All the best – as ever – and I look forward to seeing you before to long.

    Liked by 1 person

  4. So difficult to read Paul-you are right that we need to be grateful for our families-you certainly are blessed with yours
    Hopefully see you out between now and your BBQ?

    Liked by 1 person

  5. Great bit of writing Paul, and very insightful. And knowing my distant passion for all things Yorkshire, inspiring to see a good selection of pics a t the end. I even refinish a couple of the shots..at least the perky lad at the bottom is very familiar from 197something. Wishing well will. The BBQ when I hope to be in your back garden again.

    Liked by 1 person

  6. Gosh, Paul, that’s amazing. Very inspiring and so good to hear such positivity and a sense of purpose again. You have such pragmatism and serenity again, wonderful beyond words to read.
    I am delighted that: you have been helped by the therapy; the oncologist helped you to accept that you wouldn’t necessarily feel hungry; you’re looking forward to a summer of family, cricket and friendship; that your voice has returned; and that you don’t have to take so many drugs now!! Excellent.
    Looking forward to seeing you soon, Lesley x

    Liked by 1 person

  7. Your writing makes a difference to so many people, Paul, including me. If/When I’m challenged with anything close to what you face, I aspire to be as positive and pragmatic. Thanks for sharing your life here and on Blip in such an open, honest and positive way xx

    Liked by 1 person

  8. I enjoyed reading your Blog and found it very inspiring it spurs me on as I am missing Mother Jarlath so much I feel ashamed to be crying so much…I know I am crying for myself! One of our older sisters fell and broke her hip and leg and she was 90 the Doctors said she would not survive the op she was in the hospital for six weeks then went to the hospice for three and she came home with end of life care she survived and lived to get her Telegram from the Queen and Euros from the Irish President,! She died last July. The Drs. And nurses could not believe it. So keep your eart up and keep your positive spirit! Be assured I will keep you in my prayer.

    Liked by 1 person

  9. Great respect to you Paul. Your frankness, honesty, wisdom and general positivity to life when in adversity are an inspiration to me. You make it sound so logical and sensible – but it must takes great resolve, inner strength and clarity of mind. Not easy.

    I am really glad to hear that you are no longer in rock bottom and in a better place (albeit relatively) to engage and do some of the things you enjoy. Good timing now that summer is on the way. I hope you get good opportunities to enjoy cricket, football, reading, photography, wildlife, friends, family and food.

    All the best Paul.

    Jue & Gill
    xxox

    Liked by 1 person

  10. What a journey and such an inspiring story Paul. Thinking of you! I’m good friends with Dorothy and Peter Wedge …the latter you will know and I will pass on your blog if I may. Take good care and enjoy each moment- the future takes care of itself as my Nan used to say.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s