Tuesday, 1 April 2014

Being a cancer patient

Today I was a patient, and I'm just not any good at it. I hate it, loathe it and although outwardly I'm good at giving the right impression of stoical gratitude and forebearance, inside I'm desperately trying to prevent my true feelings of stroppy petulance leaking out all over the place. 

Mostly I can deal with it, tune it out, get on with it and accept the whole package of being a patient with a lot more graciousness than I felt today, but sometimes, just sometimes, it really gets to me and I want to stop playing this game, this lottery game of fear and uncertainty called cancer. Then I remember that this is just the way it is, there won't ever be a way to get off this particular merry-go-round, and life is a bitch. 

I'm normally much better at tackling things than I am today, I don't normally do low, I don't usually let things get to me like this. It wasn't anyone's fault. The hospital staff were perfectly pleasant, in fact the Consultant I saw was completely lovely, and even gave me some really encouraging news. It was me. Today I struggled to do positive, happy and upbeat, I failed dismally at looking on the bright side or finding something absurd about the whole thing to laugh at, I just didn't do the whole patient thing well at all. 

It was a test day rather than a treatment day. I was with the clinician who conducted the test for nearly an hour, in very close, bodily contact as they have to dig deeply into my flesh with a probe and drag it to various points, each time digging harder until I wanted to scream with the pain. Maybe I'm just a wuss. I was never told her name, even though she knew mine. I had to undress, and she couldn't find the surgical gowns to at least give a pretence to modesty and dignity. I was half-naked, revealing the ugly disfiguring shark-bite scar where a breast used to be, while she rummaged in cupboards looking for the missing gowns. That hideous twelve-inch scar that scooped all the flesh out right down to the breastbone and rib-cage that even now, nearly two years after surgery, I can't face in the mirror without dissolving into flood of tears. 

Eventually I was handed a gown, but by then it was too late, I would have to spend the next nearly-an-hour swallowing hard to stop those wretched tears from revealing my true vulnerability. I had to lie, stock-still, on the bed, all the time trying to tune out the joint pain that wanted to tear me apart. Hips, knees, back, elbows, wrists, knuckles, they all wanted a pain party today. My surgery has left a legacy of gnawing pins and needles and numbness in both arms and fingers, which was made worse by the permanent nerve damage caused by chemotherapy. Lying still for what seems like forever means the pins and needles fizzle away like crazy until it feels I'm on fire. I began to think I would never be able to move again.  Maybe I've just got a low pain threshold. 

Every now and again, I was asked to take in a slow deep breath and hold it. It would be so helpful if clinicians would remember to tell you when it's OK to breathe out again, but they often forget. Today I thought I was going to suffocate several times over. There were curtains around the bed, but they didn't quite meet in the middle, and directly opposite there were staff lockers, and it must have been staff break time, with me and my scar providing the peep-show entertainment. 

Normally, I manage to keep a perspective on things, normally I just remind myself how lucky and blessed I am to live in a country with free health-care, and at a time when the treatments on offer will keep me alive for longer than has ever been possible before. Not today. Today I was pissed-off, resentful, miserable and withdrawn. 

Being a patient is so much more than just turning up and letting them do whatever has to be done in terms of tests and treatments. The psychology is complex, and there is a whole set of assumptions and expectations that you feel compelled to conform to, even when you really don't want to. I'm a patient, therefore I'm expected to be weak, passive, willing to co-operate, grateful, gracious and submissive. As a patient it's really hard to hold on to your identity, personality, dignity and privacy. It feels like I'm reduced to a hospital number who has to be processed. It really doesn't matter how kind, compassionate, caring and sensitive the staff are, it's almost impossible to be "me" when I'm with them. 

It's the same in the outside world. Having cancer, particularly the incurable variety that I've got, inevitably sets you apart from everyone else. It's so easy to become defined by cancer, to let who you really are to be squashed and crushed by other people's reactions. I've spent the past nearly two years fighting against these stereotypes, and I've done it fairly successfully so that people know that the "me" is still alive and kicking and living life to the fullest. 

I've kept a blog, starred in the Stage Play of my cancer story, written a book, spoken at conferences, run Laughter Yoga sessions, and kept countless other interests and activities going strong, all at least partly so I remain much more than just a person with cancer. People sometimes tell me I'm marvellous, inspiring, courageous and brave, but I so am not any of those things. I just don't want to be written off, side-lined, ignored, depersonalised or reduced to a pathetic shadow of a person. I want to be engaged, dancing, laughing, involved, enmeshed in life, because that way, I'll stay alive in the only way that matters. I don't want half a life, I don't want to be passive and poorly and get smothered in sympathy. I want to be me.

Sometimes, just sometimes, the facade drops and I'm left exposed, so exposed that even I have to see what's really going on. I have cancer. It's incurable. Hospital tests and treatments are now, and will always be an integral part of my lifestyle until the day I die. 

Cancer has robbed me of energy, cancer brings me low when I look at the To Do list and the dozens of little tasks that have been left undone around the house for months, and the admin mountain and the washing and the keeping the kitchen and bathroom clean, and I know I just can't do it all any more. The exhaustion. The bone-tiredness that descends like a cloud and I fight it like hell. The running on empty. Cancer has taken so much and will continue to want more and more. I will not let it take away the "me" though. I will not be crushed under the weight of this awful disease.

I will not be patient, even though I have to learn to be a patient. I doubt I'll ever be a good one though.

If you’d like to buy a copy of Yvonne Newbold's book,  “The Special Parent’s Handbook”,  here’s the link to the Amazon Page:

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  1. You, my dear friend, are entitled to have a bad day, week or month if you feel like it. I have never known anyone endure as many heart-breakig situations as you have and if the only consequence is that you have the odd 'off day', then so be it, you have earned that privilege. " I'm marvellous, inspiring, courageous and brave", I hate to tell you my lovely but you are all those things and more on top. And the reason we all tell you that you are so often is that we all know in our hearts of hearts that if we were in your shoes we would not handle it with anywhere near the same amount of stoicism that you show every day. I am going to book a hall and we are going to have a night of dancing and laughter with our special friends and maybe a quiz thrown in for good measure so everyone can see your competetive side. I really hope that it was just one bad day, but if that turns into a week or a month, call us and let us be there for you for a change. Love you more than you know, S xxxx
    PS If anyone dares even raise an eyebrow or roll an eyeball because you have a bad day send them to me and I will set Sammy on them lol xxxx

    1. Hear hear Sian...my words exactly as I was going to say. Yvonne you simply are an inspiration to all of us. YOU are the one that makes MY bad days seem insignificant and make me carry on. You ARE amazing and none of us would have anyone say any different. Oh Lord I wish I could great you good health, all I can offer is love and friendship.Yvonne, You are one of my bridesmaids and are going to be part of my special day ...then we will have a knees up and knock a few back and tell cancer to SOD off ,we're too busy. Soon I promise. Love you my friend. X xxx

    2. Hear hear Sian...my words exactly as I was going to say. Yvonne you simply are an inspiration to all of us. YOU are the one that makes MY bad days seem insignificant and make me carry on. You ARE amazing and none of us would have anyone say any different. Oh Lord I wish I could great you good health, all I can offer is love and friendship.Yvonne, You are one of my bridesmaids and are going to be part of my special day ...then we will have a knees up and knock a few back and tell cancer to SOD off ,we're too busy. Soon I promise. Love you my friend. X xxx

    3. Sian, thank you. Feeling a bit better today, and even though it's turning out to be a firefighting day from hell, I'm coping cheerfully with every bit of it. Your lovely, kind words mean so much, but I know that you would actually do every bit as well as I'm doing on the cheerful stoicism front, in fact probably much better! The hall and dancing made me smile - can I cheat outrageously in the quiz please?! I hope you know I love you too, and it's great to know that if I really need a weapon of mass destruction I've got Sammy on my side too - all 18 months old tornado of him! He and I with you and Dan as our cheerleaders could take on the world! Thank you, xxxxxxx

    4. Fluffy, thank you so much for all those lovely kind fighting words. I am so looking forward to being a bridesmaid for the first time ever - you have to set a date very soon please?! It was so great to see you and Sheree last week too. Knees up? I'm your girl - count me in defo! Love you lots and thank you again xxxxxxx

  2. Yvonne, as Sian said you are entitled to these feelings, most of us have them even though we don't have the entitlement. We moan because we have to wait half an hour for a doctor, or we have a headache, or the dishwasher doesn't work and if its ok for us to moan occasionally, how much more is it OK for you. You are an inspiration, but being the down to earth modest person you are you won't accept that. I am very proud to say you are a friend -admittedly not one who sees you as often as she would like, but one who is never far from my thoughts. So tonight I will pray that tomorrow is a more positive day for you. love to all the family and waiting really full of excitement for news of your grandchild xxx

    1. Thank you Mandy, so much, and I hope you know I value your friendship too. Your very kind words are lovely, and very helpful too, in helping me put things in perspective. It's by no means a perfect day today, but I've got my head back around things so much better and I'm nearly back to normal. I'm very lucky because I very seldom let things get me down, so that when the black days happen I'm just not ready for them and don't know how to cope with them at all. I suppose that's the same for everyone though. Thank you, take care and lots of love xxxxx

  3. Yvonne, you've handled all the medical appointments, the treatments, the invasion of privacy, the administration, the waiting for results, the trauma and drama of your health condition so amazingly well...and you have every right to rebel, kick and scream...or to feel 'war torn' shell shocked and blue!

    Yet you are a living, breathing warrior!...and your utter determination, incredible humour and sense of responsibility to your family is propelling you onward...like a nomad trekking through the barren desert, to camp out at the next oasis!

    You are an incredibly resilient, strong, resourceful woman...and I would love to help you look at some integrated natural health options, that will support and nurture you, every step of the way.

    Much love and hugs,
    Sharon, Ottawa xox

    1. Thank you so much for all your lovely, warm support and very kind words, Sharon. Yesterday I felt like a beaten, surrendered washed up ex-warrior, but I'm slowly but surely climbing back into the driving seat again today nearly ready to take on the world again!! Love the idea of being a nomad - it sounds so quiet and peaceful too.... nothing like being in my house whatsoever! Thank you so much, xxxxx

  4. This rings true for me on so many levels Yvonne - none of them really linked to cancer, but all applicable.
    Your writing did make some thoughts pop up though.
    Vulnerable is not weak, it is not lacking in courage. And showing your, our vulnerability is sometimes the only way for the outside world (medics included) to be aware of the whole situation. That the gowns should have been in her hand before she asked you to undress... that the probe hurts... that you'd like to breathe, cos it's a pretty fundamental part of this living thing. Being vulnerable goes hand in hand with the "life's a bitch" reality that we all live in some way or other. And I can't help but think that showing the world our vulnerability is a powerful tool in helping us and others become aware of it and make changes. If that's not courage, I don't know what is.
    As for keeping that "me" alive, you are doing just that... but then, you know you are with all the things you have done in the last year or so.
    One last thing... you are the first adult I have had a real relationship with who happens to have cancer. I just want to tell you that for me the cancer is incidental. It's a pain in the behind, a hindrance, a bitch... but it's incidental. In most ways, it has nothing to do with YOU.
    YOU, my lovely lady, are a wonderful, compassionate, kind, caring, mad, crazy whirlwind of fun, passion, smiles, fury at times, and I am the richer for having you as a friend. xx

    1. Benedicte, thank you so much. Your description of our friendship in that cancer isn't the major part of me is so help and reassuring, I just so don't want to only be "that poor cow with cancer"! I hope you know that I'm richer for having you as a friend too, and love you lots for all your crazy quirky sensible insightful caringness too xxxxxx

  5. I've just read your post and it is heartbreaking that you are having to deal with this treatment, and hide your true feelings of vulnerability. It is so easy for staff to divorce themselves from the feelings their patients have (it may be a protection) but there are times when empathy is more appropriate.

    You have written so evocatively; the content would be a useful learning for hospital training teams.

    I wish you well x

    1. Thank you so much for your very lovely comments. It was hard to be so open, and so negative because I always try to be upbeat and positive, but it's also been a while since I even wrote about the cancer; lately the children and the book I've just finished have dominated the blog content. I was having a bit of a pity-party yesterday, it doesn't happen much and when it does it throws me completely. You have really hit the nail on the head because I really struggle with showing vulnerability, I prefer to see myself as one of life's copers, and sometimes that's a real dichotomy when the cancer has come along on the ride through life too. I really appreciate you leaving a comment, and such a lovely one at that. Yvonne xxx

  6. dear Yvonne,

    you have been through sooooo much these last several months, it's no wonder that you have gone through such myriad emotions along with the indignities and the pain you suffered. as I read your words I thought of how terribly sad it feels when we are thrust back into the realities of our diagnosis; and how it's like all the stages of grieving, compressed into one experience, hits us so hard, and all at once! it's just too much to bear sometimes, isn't it. all our defenses are stripped away as insult adds to injury - what a bitch to have to go through it all.

    but, Yvonne, I am so glad you were able to pour it all out in this post. I know you will have helped so many of us, and I hope it helped you as well. and never fear - all of us who have come to know and love and admire you KNOW you ARE coping - with grace, humor, and all the love you shower upon your family and friends. now it's time for you to accept our love - unconditionally - and do all you can to be good to yourself in all your glory. and being vulnerable at times just means you are human, and it in no way cancels out all the things you are able to accomplish outside of beastly cancerland. I wish I could reach out through the screen and give you a warm hug - or better yet a good snort of something liquid and potent that would lead to a few good giggles - I like to call those times "laugh myself stupid"!

    much love and light to you, my Friend,

    Karen xoxo

  7. Karen, thank you so much. Your warmth, compassion, friendship and love simply oozes off the page, and I can't tell you how much you lovely, kind words mean to me. I quite like the idea of us laughing ourselves stupid together too! I'm feeling a load better and stronger now, luckily it takes a lot to keep me low for long, but your description of how all those negative feelings and experiences surrounding our diagnoses compress together at certain moments really resonated. I hadn't looked at it like that before but you're so right. I don't think I'm in denial, but I definitely choose not to focus on all that bleakness very much, and I do tune it out to leave room for happy upbeat feelings and memories. So maybe all that compressed rubbish has to come to the surface sometimes to say hello. I wonder if next time, I can remember that and expect it and almost welcome it - it's probably better to have one hideous day every now and again to mentally face these things than for little bits and pieces of all that mess to pop up and cloud every day over. It's just so tough that, as well as having a disease that's difficult to cope with, we are made to feel "less" by the whole patient experience, and the whole balance of power equation when we are in the hands of the hospital. I absolutely hate it, and I'm sure there must be another way of handling those relationships which is more empowering for the patients. You are so lovely, supportive and always there, cheering me and many others on, I so appreciate your friendship, thank you. Lots of love, and a hug through the screen too, Yvonne xxxxxxx

  8. Breathing in and out for you as I read this. You have so much going on, and so much to consider. No wonder it comes out - and at such reasonable moments. I hope you were able to follow that wretched moment with some closely wrapped blankets and comfort.

    And yes, I think there must be ways that make the patient feel so much more empowered, more comfortable, more human. A lot of that starts with the nurses and doctors themselves.

  9. Thank you Catherine. I think they sometimes lose sight of the fact that there is a real, frightened, sentient human being on the other end of their technical procedures, and sometimes we can cope with that, and other days we just can't. I'm fine now, I think some days it all piles up and overwhelms us completely, but I'm lucky in that I'm normally able to bounce back quite quickly, although it never feels like that will happen when I'm in the thick of it. Thank you for reading, double thank you for leaving a comment, and I hope you are doing well at the moment too xxx