Just at the beginning

The signs were subtle at first, but as time passed, they became more difficult to ignore. Choosing to sit in the easy chair to eat rather than at the table; more frequent filling of a hot water bottle; longer daytime sleeps; empty pain medication packets abandoned on the kitchen counter. And most confronting, my husband’s former brisk gait now a shuffle.

It’s exactly a year since Ken ceased treatment for the melanoma he’s lived with for 14 years. During that past year, PET scans have enabled us to observe the cancer spreading, slowly but surely. As the appointments for his February scans approached, Ken became uncertain as to whether he could physically go through with them.

Still weak from an unexplained vomiting attack and a day in the emergency department of the local cancer hospital, Ken was only beginning to eat normally. That had been another sign: no appetite, difficulty finishing even the smallest meal. I tried not to be offended that my cooking no longer pleased him.

The hospital visit had achieved one thing: ‘something had happened’, so the palliative care team swung into action. Telephone consultations occurred with a nurse, then a doctor,  to map out a much-needed pain treatment plan.

My daughter happened to be free to take Ken for the more important of his scans; he cancelled the other. She was shocked at his rapid deterioration. I’ve never seen him so fragile.

The next day, Dr E, a palliative care specialist, visited Ken at home. Though in pain, he was well enough to remark that this was only the second time in his life that a doctor had visited him in his house. The first time was in 1952, when Ken was seven years old.

This doctor was young, elegant, and thorough. After she had made some adjustments to his medications, Ken wondered what subsequent iterations of pain medication might involve. ‘You are just at the beginning of your pain journey’, Dr E assured him. ‘There are many more things we can do for you. We’ll talk about them when the time comes’.

I’m not sure that I was reassured. A new and challenging journey was not something I looked forward to.

When friends ask me how I am managing, I can’t think of what to say. A list of bodily discomforts pops up in my mind’s eye, only to be quickly dismissed as ‘my usual MS’. Instead, I say, ‘I am so tired’.

I try to explain how caring for someone, adding minor-sounding tasks to the other things I do in our home, is a quantum leap. Maybe not for someone who can move and walk easily, but for me, the extra metres I traverse in a day, carrying the dead weight of a low-functioning right leg, is significant.

More frequent rests help, and I find myself sitting down mid-way through a task I’d normally complete in one sweep. And I am protective of my social outings – fresh air, good coffee and friendships – they give me a boost.

We’ve moved from ‘doing OK’ to the first steps on Ken’s pain journey. Or is it the slippery slope? I notice how health professionals are treating us differently now, with delicacy, as if we are fine china. We don’t have to explain or justify any request; the facts speak for themselves.

The screensaver on my Apple Mac is a collection of photos I’ve taken of Ken on our overseas travels. The backdrops never cease to thrill me – landscapes and streetscapes of Italy, France, Spain … sometimes he’s a small, distant figure, other times he’s front and centre, perhaps in shadow. When I stopped travelling, he’d go alone – back to his beloved Spain, to Sicily, or to Morocco.

What unforgettable times we’ve had.

Could this be, after all, just another journey?

Just at the beginning »

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24 Responses

  1. Oh Ruth, this is a very demanding time – not surprised that you feel tired. I hope that you’re able to rest and continue to enjoy sweet reminiscence. Thinking of you and Ken, and sending love.

  2. It’s so wonderful to be in contact and hear how life is treating you and Ken. I’ve missed our coffee chats. I would love to get together and catch-up. Yes, I think every stage of life is a journey both good and bad, but they must be traversed either way. We must take the good with the bad and make the most of our journeys. For its while we are still making the journey we know we are still alive!

  3. My dear sister I have been where you are travelling – watching , hearing , feeling a loved one drift away and yet remain close . The ache of the past as well as the joy of small things – the need to keep on , keeping on , watching for any light at the end of this tunnel .
    You are both in my heart and prayers

    1. Dear Ruth, though we never met in person, we did meet through your writing. I wish Ken every ease going forward that palliative care can offer. And I hope you find good in-home support for yourself. I’m a cancer patient myself now, mostly asymptomatic, but I see how much will be asked from both me and my devoted not-so-well-himself 73-year-old husband. Sending care and appreciation, Joyce

  4. You have given us a vivid account of Ken’s journey, and yours as a carer. Intense times of loss, sadness and poignant memories. You will be glad to have written about this journey Ruth, I only wish I had done the same. Leigh

  5. Ruth, I am saddened to read that this part of the journey has begun for you both.
    Your writing must be therapeutic for you, and it’s good that you are able to express your feelings in this way.
    Being a carer is exhausting, especially when you are dealing with your own health issues. And I know that it is also a privilege. Like most carers, I know you wouldn’t want others doing this for Ken and that the time together is something you cherish. However, take some time for self care, and utilise the respite services that Palliative care may offer you. You cannot pour from an empty cup.
    Continue your beautiful reminiscing and memories. These are more important than ever, for you both.
    Hugs and blessings sent your way.

    1. Hi Rhonda and Ruth
      I had no idea you knew each other! Rhonda – (Ruth and I share grandsons)
      Yes – we travel this journey – both unsought and welcomed… I think of you an Ken often and ask the boys after you both.
      The time is difficult and demanding and also precious. The photos are a treasure – keep them close and keep telling the stories of the associated joys and memories. Much love and blessings to you both XX

      1. Amelia, thank you – you have trodden this path before me, fearless. I found myself wondering what Terry would think about the boys moving on from soccer this year … that too, another journey?

        1. Yeah. I think he would be ok with them playing basketball. As long as they have something.
          The path is daunting, but you are an extraordinary courageous woman. Ken is blessed to have you.

  6. Thank you so much for sharing this so beautifully. As always your writings do so much more than convey your story. They are stored and recalled as and when…
    Thinking of you.

  7. I just read this post Ruth, I don’t often check emails now. So so sorry to hear how you are both going, and especially to hear of Ken. It’s a day by day battle I am sure. Thinking of you both at this difficult time. Vicki xx

  8. Dear Ruth I am saddened to hear of this new step into the inevitable….
    Ken looked and sounded surprisingly ‘better than expected’ when I saw him briefly just a few weeks ago. How we hang on to the hope of those bright moments. How quickly they fade as the new, bad news arrives….
    I’m glad Vinodini is there to help. I’m glad the elegant young specialist came to your home and that you have access to the best care. I’m glad you have good friends to have coffee with. I’m so glad that your beautiful writing gives you solace and that the memories of all your adventures together are still alive in you, and on your screen saver! Most of all I am glad you have each other despite how tired this journey will
    make you feel.
    Much love to you both.
    PS: I love the photo.

  9. Dear Ruth
    My best wishes to you as you navigate each day now. Your spirit, in all this difficult time, is shining through… in words, simultaneously strong and delicate.
    Sending you my thoughts and much love.

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