I don’t know what to say

That’s what everyone has said when I’ve told them that last week, my darling, 86-year-old dad, the most energetic, generous, stubborn, life-loving man I know, has been diagnosed with secondary cancer on his lower spine, about as close to his nerves as it could get. And this comes a month after Stella’s cancer surgery when she is still recovering, when she is still scared and healing her weeping wounds. I think some of our friends and family probably have compassion fatigue. But I’d rather people said ‘I don’t know what to say,’ than say nothing at all.

Jack, my dad, has been unwell for several months. Visits to the GP, who prescribed pills and more pills, an osteopath recommended by his GP, all of us wanting him to have an MRI, even the osteopath wanted him to have an MRI, but his GP decided that he had a condition that would be eased with a course of steroids. I was finding out about a private MRI, much as I dislike private health care and everything it stands for, but there was no need. Dad called me in a state of distress on Wednesday morning and I told my nephew to take him straight to A&E. Dad’s been in hospital since then. He’s had an MRI, a full body CT, a liver biopsy and this week we may find out where his primary cancer is. He is under the Care of the Elderly team, and their care has been good. But he has deteriorated so fast from a speedy man who walked down the road every day to pick up the paper and some shopping, to a man who needs help to walk. It breaks my heart. It breaks my mother’s heart so much more.

I can’t even believe I am saying the word cancer in relation to my dad. He’s my hero, the man who has been with my mum for 57 years, the man who has troubled me and fought with me and loved me and always told me to work hard, earn a living and always be able to look after myself. The man who is always here for my mum, who wants to be here for my mum, to look after her, because she is partially blind, because he has always looked after her, loves her, argues with her, laughs with her and is her soul mate, as my mother said, her right hand. I watch them and hope that Stella and I have 57 years. And I know I am lucky that at 54 I still have both my parents in my life when so many don’t, when so many parents die young. I hold on to every second I have with the old folks.

Yesterday my mum asked if I could show her how to use the TV. Dad loves all things technological, he records a lot, watches a lot, is online, creating and printing cards for all of us, every festival, every birthday, every anniversary. He records for my mum and they watch together, volume on loud, text up on screen, because my mother is also slightly deaf. My nephew (God bless my nephew), who is our technical expert, showed my mum how to use the TV controls. She has to feel the buttons, their shape and position on the control, because her vision is so bad. She says, we are old, this is what happens. But to witness my dad in such enormous pain, excruciating pain, is not what we ever imagined or want to happen for anyone – family, friends or strangers. And he can’t shout or scream, because he’s in a public place. He writhes like an animal that has been shot, until the pain subsides and he is talkative and positive once more, and then the pain returns and he grows pale and cannot rest. When he is calm again, a glimmer of the Dad as I know him, returns.

I watched him yesterday with my mum and uncle and my nephew and nephew’s girlfriend. I watched him cry out and ask for his leg to be chopped off because the pain was so bad, I heard him ask for his own (long gone) mother to take him, and I found it so hard to witness my hero in such pain. And he has a high pain threshold.

If one more person tells me to be strong I might have to punch them. I am strong but I am also weak and human, just like you. I get on because I have to and I want to. Thanks to W Shakespeare for his borrowed and adapted words:

I have eyes and ears and lips and fingers. I see, hear, feel and taste, just as you do. I love and hate and I have desires like you. I eat the same food, drink the same wine. The weapons that hurt you, hurt me. I am at risk of the same diseases and am treated with the same medicine. The summer warms me and the winter gives me chills. I am a human just like you. If you stick a needle in me, blood will drip. If you tickle me or tell me a joke, I will laugh. If you poison me, I’ll die. And if you are disloyal to me or cheat me or lie to me I’ll never forget it and I will never fully trust you again. If you give I will take. If you take, I will gladly give. I have the same tears that come from the same fear and sadness. I am born like you and I will die like you. Not so different after all.

Jack is my dad, my friend, the man who made my sister’s and my school uniforms when we couldn’t afford to buy them. He cooks in a way most men of his generation might, but can’t. He loves his garden and his gadgets and his red wine. He over does the salt on the challah on Shabbat. He loves to be in control and now he has no control. His way is the only way, his opinions are clear and strong. Everyone in his neighbourhood knows and loves him and my mum. The woman in the corner shop, the staff at the bread shop, the men in the fruit shop who he makes cakes and jam for and entertains with his stories. If ever my parents leave their phone off the hook, I call the fruit shop and they run to check up on my parents. Jack is the man who infuriates me with his politics and fills me with delight when he excitedly shows us a new creation he has made in the kitchen, a new recipe which he found online. My dad is the King of the PC. He said the other day, “Give me my tablet.” So I gave him his tablet. Tablets. Packets of them. He looked at them and shook his head. “No, no, no, my tablet.”
“But here are your tablets.”
“Not that tablet, my TABLET.”
Ah…his tablet, so he can play bridge.

I cry in my house with my wife or alone, not in front of my mum or in front of the people who cry in front of me. I can’t take others who can’t cope with our pain, with my dad’s pain. If you weep, I won’t. My mum feels the same way. If you find it hard, imagine how hard the rest of us find it.

In A&E on Thursday, when I spent most of the day and evening with my dad, he said, “soon I’ll be with your sister.” (My sister who died of bowel cancer three years ago.) And I said, “well if you are, give her my love, tell her I miss her, and that she owes me.” He said, “I’m old, and we all have to die and I’ve had a wonderful life.” And all of that is true. He is old and we do all have to die and he has had a mostly wonderful life. But I find it a little too cruel to watch the man who never sits still, having to lie still and be helped to the bathroom. The man who worries about my mum, who wants to come home and watch his tulips open, who wants to run around the block and cook and drink and be the Jack he has always been. And I hope he will come home soon, so we can pamper and laugh and listen to his stories, so he can cook us biryani and mahashas and make his (highly non-traditional) version of bread and butter pudding and ‘lecture’ his grandchildren on anything from the state of hospital food to mountain climbing and play with his great-granddaughter who gives him enormous pleasure.

I spoke to Dad this morning, he’d had a shower and was about to play bridge on his tablet. Maybe I should call him Moses. I said, “Lessons in life, what would you say, because I’m writing a blog about all this?” And he thought and thought.

Love thy neighbour as you would love yourself.
Try not to harm people for the fun of it.
Smile. If you don’t smile, others won’t smile.
And eat lots of courgettes.

He laughed.
I said, “Did you just say eat lots of courgettes?”
“I’m joking,” he said.
“That’s a joke for your brother,” I said.
“Yes,” he said. (His brother LOVES courgettes, cooked, raw, my dad fills brown paper bags with them for his brother.)

Love, don’t harm others, smile and eat courgettes. Not bad advice for a Monday morning.

And another piece of advice that Stella and I are planning to act on more often and more readily, when Stella is well and we have time to look outside our small circle again:
Don’t say, “What can I do?” Just do something, anything.
The friend who brought a full (cooked) roast dinner to the door, the friends who drop off food and don’t stay, who dropped off two brownies, who took me out for a coffee, who texts every day to say how are you? Those who offer to drive and mean it. That’s what makes the difference. And some have and some don’t know what to say, so they say nothing. I’d rather you said, I don’t know what to say. And if you can do, do it, and if you can’t do it, don’t offer. We know everyone has busy lives and work and their own problems. But as the suffragettes would have it: Deeds not words.

45 thoughts on “I don’t know what to say

  1. I am so very, very sorry. I really don’t know what to say. I am a stranger to you and this blog, (Stella tweeted a link to this so I find myself here) but I send my best of wishes to you all. And with the kindest of intentions, I wish your father less pain soon. No-one should have to suffer. He sounds like such a wonderful man.

  2. No words from me can ease your pain, or Jack’s pain, and I can only offer platitudes. You will be in my thoughts as your writing reminds me so much of the decline of my partner’s Dad, a proud, independent man who hated to be dependent on others and had devoted his life to his wife and daughter.

  3. Hmm my first reply deleted so i”l attempt to say it again! Sometimes we don’t know what will make us feel better, and sometimes we know nothing will. For someone on the outside it can be a lottery. Shelley I don’t ‘know’ you so I can’t help but I CAN keep you in my thoughts, you and Stella, with kindness, meaning and compassion, and I do…so if it’s ok i’ll just continue, and add that lovely-sounding dad of yours too 🙂

  4. Reading this has brought back memories of my own experience. If the hospital has not already arranged this, please get in touch with your local hospice. They are able to give more help and support to your whole family than you can ever imagine. Once under their care we really felt we were dealing with professionals who really could make the pain go away for my father.

  5. so sorry your dad is going through this terrible ordeal and you have to go through it . I hope with all my heart he is in a hospital that gives our elders a chance and can restore a quality of life to him, whatever the future may bring. I know it’s probably annoying to hear ”good outcome” stories that may be totally irrelevant to your situation when you are going through such sorrow and worry, but my ancient Hungarian acrobatic teacher Eugene developed stomach cancer in his mid to late-ish eightees,- the kind of man who ignored all symptoms as things that could be cured with a good dose of cod liver oil. Rushed into Kings, at deaths door, the wonderful surgeons removed a gigantic tumour , re-plumbed him and he was able to go home. Seeing him before the op I would not have thought such a thing possible.. But He went on teaching acrobatics, even physically lifting jumbos like me, for a few years yet. Yes, in the end he did pass away, but in his ninetees, but what was important was that the medical staff did not write him off. They deemed him as worthy of treatment as any younger person. I hope this is possible for your dad, and if not, the strength and love for you all to to see it through.

  6. Four nuggets of wisdom more people should take, even though I’ve never had courgettes. It would be easy for me to say I was sorry, that I have experienced something like this when my mother had cancer. But I know that that kind of pain is unique and terrible, so I’ll echo “I don’t know what to say.” In the interest of a little smile, congrats on being Freshly Pressed.

  7. Thanks for writing this…the most difficult part of aging is watching such strength I had & saw growing up, having to deal with the inevitable. I do not know what to say or think, but I do empathize.

  8. Sometimes hollow niceties are a well-intentioned effort to skirt the tender places of an impossible conversation. Your candor has created a greater consciousness for moments we are often too lost to navigate. A beautiful sharing amidst a difficult experience.

  9. I am so sorry. My 61 year-old dad was diagnosed with a secondary tumour in November and it has since spread to his bone marrow and lungs (at least). He’s started chemotherapy and is getting through it.

    It’s funny how the experience makes you question so much – your own outlook on life, your love for others, your experiences and your perceptions of ‘normality’. And it all hurts so very deeply. But then, stage by stage, you begin to accept and deal with the ‘new normal’, and your love for your dad will help that happen as he goes through the same process. I found myself writing out my grief – and then was moved and surprised when people at work said that they had read my blog post. I had forgotten that my blog was accessible to all, and gradually, talking about it with people helped too.

    Thinking of you.

    Ruth x

  10. Dear Shelley, you’re in the thick of it. I’m glad you have your blog to pour this all into and to affirm what you’ve said so well borrowing Shakespeare’s words. We feel so alone during these times but really aren’t since we’re all here now. I love your father’s four life lessons: love, no harm, smiles & courgettes (zucchini, right?). My mother would have agreed 100%.
    I want to second that hospice care is an invaluable resource for everyone. I am so sorry about the suffering your father has to endure.
    Take good care!

  11. Never question the will of the almighty, everything is a test in this life, please look into guanabina aka soursop on YouTube it’s a plant that only grows in humid temperatures and it’s juice attacks cancerous cells, it’s 10000 times stronger than chemotherapy and it’s not FDA approved since all the government wants to do is capitalize off it’s citizens. Prayers are with you, good luck

  12. Hi there ! Your blog made me nostalgic , since i saw my own grand pa struggle with cancer 7 years ago. It absolutely touched me ! You are a pretty strong person , i wish i was that mature then 🙂
    And yeah , i hope that you find courage … and that your dad makes a recovery soon 🙂

  13. Nothing is harder than this. My wife and I went through it with our Grandson, Michael, who was diagnosed with brain cancer at the age of two. He survived with chemo and stem cell. I blogged about it. But it could have gone the other way and that makes me empathetic with your situation.

  14. What a vile atrocity is committed by religious evil-doers when they decree that we of the free world should be forbidden to choose a peaceful end for ourselves, and when we are conditioned to believe that this must be accepted and suffered.

  15. I am a stranger but hope these words (my grandma’s advice) give you some comfort. Have faith. In such times, do not think too much. Live in the moment and savor all that you have. It’s hard to watch your near ones slip by, but harder to make the most of your time together. God bless you all.

  16. “Love thy neighbour as you would love yourself.
    Try not to harm people for the fun of it.
    Smile. If you don’t smile, others won’t smile.
    And eat lots of courgettes.” I think that is the wisest advice of all. God bless you all.

  17. People say stay strong, but it’s not weak to be human. Scream, shout, cry, be angry, be sad, be grateful for a wonderful dad, be any feeling that comes. I’m thinking of you and your family and wish your father the best possible outcome whatever that may be.

  18. Your entry appeared on my list of Freshly Pressed, and it intrigued me because I’m experiencing a similar kind of helplessness and heartbreak. My dad was diagnosed with Stage IV lung cancer last month. I see him go from a jolly man to skin and bones. So I know it sounds cliche but may you and your family go through this trial with much strength and patience. That is what I keep telling myself too when I see my dad in pain. Anyways, your dad’s advice is wonderful; it’s the advice given by great prophets like Moses, Jesus and Muhammad (peace and blessings be on them) – well, except for courgettes, though my beloved Prophet did love to eat pumpkin or squash 🙂

    God bless~

  19. Thanks for the touching post. I love the advice, “Deeds not words.” Works on every occasion! Take care.

  20. It is terrible to know that someone who you have admired all your life is in so much pain. Be strong. My best wishes to you and your family.

  21. So beautifully expressed, whilst I too am a stranger, I am so sorry. My uncle (and family) who have been through many hard times has always said ‘don’t ask what you can do to help, just do’. Something for us all to think of when those we love are doing it rough. Gotta love a bunch of zucchini.

  22. This is so honest and painful and also so wonderful because I feel as though I know your dad a little through your magnificent words. I’ve traveled this Cancer road too. In many ways, you’ve described my father-in-law who was ripped out of our lives so cruelly by the Cancer monster. I watched, too, as a string and proud man became frail and helpless and I relate to your pain, my friend.

    I wish your father well and should it be his time, I wish him a peaceful and dignified passing. Use his vibrant life as a scaffolding with which to build your own beautiful history – one that is forever woven with the threads of your father’s legacy.

    Thank you for sharing so openly and for reminding me of the exquisite memories that form the yarn of my beautiful life.

    Shabbat shalom.

  23. So beautifully written and felt. Every truth – whether inspiring or painful is stunning. After losing my son seven years ago, I certainly don’t claim to know your pain, specific only to you and yours, but I do understand the frustration of empty promises, “advice” from well meaning friends on exactly what to do, proclamations of hero status and comparisons of another’s loss.
    Be strong if you feel like it, scream if you need to, cry for as long as your tears will empty from your heart, and basically do whatever the hell YOU need to do.
    Sending healing thoughts and prayers your way.

  24. Hello, this is my first comment ever on a blog…as with everyone else, my heart goes out to you and your family…Your feelings about your family are totally ‘heart warming’, you are truly blessed. I will hold you up in faith, faith has feet, so in that regard, I would like to share something I just found out about in the hope it may help…..Google Black Cumin or black seed, it is the same thing. It is said to cure Everything but Death…an Ancient Remedy….i just bought some from Amazon.com, Brand ‘Amazing Herb’…full spectrum seed $10.00 bottle 100 caps…go to http://www.amazingherbs.com to see research on product…execellent quality. I just bout 6 bottles for myself and Fiance’ and shared with a friend who has pancreatic & breast cancer…Share your thoughts if you like….Your blog is the first I’ve ever read, I’m 68 and the picture is only 4 years old…Holistic meds have worked for me…preventive meds beat chemicals…..There are no accidents in the Universe…perhaps this is ‘Just what may help’ my experience is that God send just what you need when you need it, even if is an added grain of HOPE, Shalome

  25. What a poignant tribute to your dad and mum. It’s horrible to watch those we love, suffer. (I was about your age when I went through this with my dad.) These stressors are big ones and so surround yourself with ppl who will support you through this. Tell your dad anything you’ve been wanting to tell him for a while…like how much you love him and the wonderful memories of you both as you were growing up… Through these tough, tough, tough spots in life, we are never alone…it really doesn’t make it much easier because it is so painful. You are in my thoughts and prayers. You have had several losses…a new way to see your dad and the loss of your sister. Sending you an e-hug…not as good as the real thing, but I hope you are getting encouragement from those you love.

  26. It is painful to watch your loved one in a hospital. My grandmother spent about a month in the hospital.
    I only have my words to offer any support. And that is all I am able to give at the moment
    Your father sounds like a wonderful man. I hope his agony stops.

  27. Your father sounds like an awesome and funny man to be around. I’m very sorry that you and your family are having to go through this; it takes a lot of courage to share it with us. Warm and best wishes to you!

  28. Thank you so much for this post. It was heartfelt and honest. I can feel your pain through your words.
    My mom recently passed away from cancer. The loss is tremendous.
    I will keep you and your family in my thoughts. Many blessings to you all.

  29. Shelley, your blog post led me to google the no make-up fund raiser in the UK, and a headline stated: “No make-up selfie’ trend helps cancer charity raise £1million in 24 hours” I am not sure how to react to that – how peculiar we are that we raise money this way. Yet such a large amount of money in so short a time – a tapping into a strange vanity that shapes our sexist world . . . me too, watching friends, being with beloveds through treatments, recoveries, sharp hairpin turns as new shapes turn up on scans or old ones return . . it’s awful . . . I am holding you in my thoughts and heart, your sister’s journey, your father’s pain, Stella’s current healing. . . it’s so much . . and I deeply appreciate how you navigate and share your trails with us online and FB. Thank you for reminding us of the no make-up *look* of cancer and of ways to look at it, to really LOOK at it . . .

  30. As my wife has terminal cancer I have struggled with the “if there’s anything I can do” comment. I know I have said it to people myself in the past – never ever again! As you say “deeds not words”.

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