Coping with life during treatment (Dee’s story)


This week has been mentally tough. I have had my routine treatment, although I was feeling pretty rough, because of my chest infection. However the positive side of that was I got examined again. A larger dose of antibiotics was prescribed, and things are improving. 

As I had been feeling lethargic, it meant that I spent more time than usual on my computer. Looking into more detail of some of the things that were happening in the cancer world, and in particular, some of my friends who are currently going through treatment.Coming into the Christmas period whilst undergoing treatment is very tough. It is a particularly poignant time of year anyway, but when people are seeming so happy, it can be very difficult to feel the same way!

My own stem-cell transplant took place over the Christmas period, which is a time I can never forget, as it has totally changed my life. As I have said so many times, all cancer experiences are unique, but we can all learn something from each others. Every so often I get very moving comments left on the blog, in response to a particular post. Dee wrote the below comments, on my post about ‘guilt.’ I felt that I needed to share them with my readers. (Tu, Dee!)



“This has been a really bad week for me, in which loss of independence, frustration and guilt stand out like beacons. My form of non-Hodgkin lymphoma will always come back, and remission for me will only ever be in terms of periods between need for treatment. There goes the first guilt trip: “only ever”. I’m alive, whilst some around me are dying. Some of those I nodded to only yesterday, are no longer with us. Yet I have the audacity to complain about ‘my lot’. Well, yes, I do! I mourn for my old life, and I really mourn the loss of my independence.

I have just completed my sixth and final course of treatment: each one one day in hospital on an infusion, followed by 5 days of oral chemotherapy at home. Courses one through four have led to increasingly worsening side-effects. Fatigue, and utterly debilitating being the worst. The eagerly awaited holiday in the sun with my equally hard working partner, cancelled! Some of the gigs we have been dying to dance at, cancelled! Invitations to social events with family and close friends, cancelled! Because of me, or, as I keep being reminded, because of my illness. I am a blameless observer in my life, yet that is not how I see it. This is personal, and the life I had, the one I have worked hard for for 40 plus years to enjoy, has gone, and with it is going the life and dreams of some of those around me – the ones I care about, the ones I love.

Courses five and six have been horrible. In each I have caught some random bug during my chemo week, just as my whole immune system is being wiped out, and utter debilitation had swiftly followed. Needing people to look after me, unable to do house work, regularly unable to do my shopping, sometimes not even being able to get out of bed, get washed, get dressed, and worst, those really dreadful times, when I can’t even walk unaided. This once formidable matriarch of long standing, this unflinching support network for close family and friends, this ruler of all I see, has become this simpering wreck of a woman, who’s frail limbs, gaunt face and saggy bottom of a woman thirty years older than I, sits here instead, only now once again able to clear the drool from my colourless lips for myself.



This is my second hospital admission in four weeks, and I write now from my hospital bed, unable to sleep any more. My fever has broken, this infection is under control, and I will be going home in 6 hours time. My treatment complete, my cancer gone! But it isn’t, it’s only sleeping. As I lay here planning for the next phase of living with cancer, I am all too aware that 72 hours ago, I was stood in the corridor crying like a baby. I was unsure if it was safe to let go of the wall, I was struggling with visual disturbances, and I was so do weary and weak that I couldn’t even work out what I was trying to do, although I did know it had something to do with the Doctor who still hadn’t come after 3 hours, despite his assurance that he would ‘be there in 5″.

The nurses rushing past, no one to talk to, no one to help me, no one to hold my hand and tell me I was safe. Not on this frantically paced acute general oncology Ward where End of Life was going on around me. “The Doctors are busy with patients who are really sick”. I am a patient, I am really sick! I voiced my concerns, but no one stopped. I had become invisible. The patient in such urgent need, yet no one could see me, I had become invisible, and I felt like a non-person, unwanted, afraid and alone. I was still alive, and once lucid again, I felt guilty that I had bothered the nurses than night, that I had demanded that someone met my needs, when some around me had lost their fight. Guilty as charged.”


I was astounded at the emotions that were so powerfully described in these comments. A lot of what happened to Dee in this instance, I have experienced personally. The feeling of helplessness washes over you. I know there are so many patients going through such tricky times, both physically and emotionally. Christmas is a difficult time for us.Unfortunately our issues continue, so if someone you know is going through some tough stuff, hopefully this piece might help you understand if they are not always full of festive joy.

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6 Comments

  1. dear chris,

    thank you so much for posting this most touching and revealing post from dee. I think it helps greatly to be able to express the aspect of guilt, and your former post about the issue certainly was validated by dee’s comment. there is no easy answer, no words to assuage the guilt many of us feel because our illness impacts people whom we love, and whom we wish did not have to endure the pain of seeing us in such a debilitated state. the excruciating losses of being a strong and healthy partner, parent, child, friend – whatever we were to the one’s who are in the inner circle of our lives, is a most exasperating, painful, and guilt-ridden aspect that only adds to the many other losses we have had to endure. my only way of coping with it all is to tell myself that the love we share with family and friends is the only mitigation against feeling that guilt. I have often expressed to my son, adam, how dreadfully sorry I am that with both his father and me, his mother, having cancer at the same time, then his dad’s death and now my new bout with the Beast has stolen his sense of security and put such awful burdens upon him and his family. his answer has always been that he loves me, and that no matter what, he is glad he is able to be there to do what he is able to. still…guilt persists at times.

    I often wonder if we aren’t called by these travails of guilt to help us learn that we can’t always be the center piece of strength and wellness, that there are secrets of living life with affliction that can help us truly understand the beauty of the rhythm of love both given and received, and that by taking a stance of gratitude and humility we honor the gift of love and caring others bestow upon us, as we hope they will honor whatever we might have to give as well. there is majesty and meaning in both – to be able to say, “I need you”, to be able to say, “what can I do for you?” – these are the expressions of the highest form of our humanity and to live them, to breathe them, to embrace them is to conquer guilt, that most wasted emotion that can tear our already aching hearts to shreds. it isn’t easy to rid ourselves of the guilt, but perhaps it’s worth practicing changing our thinking about it, simply because it only serves to makes us more miserable when we are fighting with all our might to be as well as is possible both physically and emotionally. but it is, indeed, a tall order and one most difficult to completely avoid.

    to dee, I am so very sorry for what you are going through, for the profound grief you feel with so many losses. thank you for telling us your story – your raw candor, written with such eloquence, resonates with me, as I know it does with so many others. to feel invisible when you urgently needed attention and care – you did the right thing in demanding someone spring into action to help you; and you should not have to suffer feeling guilty, no matter what. you were the patient, you needed to advocate for yourself, and whatever happened that made you feel guilty was not in your domain, but in the hands of the facility and it’s medical personnel. there are no answers, there will never be answers as to why you lived, and someone else died. I hope that you can restore your sense of feeling deserving of whatever care, concern, love, and compassion others in your life offer you. I will hold you close to my heart and send many warm and gentle hugs your way, hoping that the bright light of hope and love will bring comfort and healing to you.

    much love and light,

    karen

  2. Hi Karen

    Firstly I would like to welcome you back to the blog, and for taking the time to write these very personal comments. This blog is here because I know, that there are just so many people out there that feel like I do, but find it very difficult to communicate the way they feel.

    I think I agree with everything you have talked about above. I am just so pleased that people like yourself, Dee and many others, have found the confidence to put down in writing, some very personal emotions.It really is so helpful to share things, even the tough stuff. We can all learn from each other, and maybe it will help us understand why we feel how we do.

    Christmas is a particularly difficult time of the year, and I hope that you are able to find some positives with Adam and your friends.

    I know my readers are very grateful for the open and honest way that you share your experiences. Your comments never fail to move me. But this is the beauty of social media, where we can all keep in touch, even if it is only occasionally. We will be here over the Christmas break too!

    My very best to you Karen. I hope things progress well for you, and please keep in touch when you can, Chris x

  3. thank you, Chris for your kind expressions and good wishes for me – the beauty of it all is that I truly FEEL them, and they make me smile, and feel comforted. and thank you also for your encouragement to keep commenting and sharing; these days of late, having the wherewithal to do so feels like an enormous blessing. you are a beautiful soul, who knows no boundaries with your desire to help us all keep in touch. thank you so much for that, Chris. xoxo

    • Hi Karen

      I soon realised, when I started my support work, that I would struggle physically to reach the number of people, that were looking for help. Every conference was busy with people who wanted to talk. Plus it was difficult with my own health. But people suggested I take to the internet to communicate, and I started that a couple of years ago.

      Now I blog, and am on Facebook and Twitter, and communicate with people around the world! I am grateful to technology and the people who support me in what I do. I am so pleased to hear you say the lovely things you have. It will never replace face to face work, but it is a great additional method of support.

      I love my work, because of people like you Karen. My thanks and best wishes for the Christmas period! We are always here 🙂 Chris x

  4. Hi Chris,
    Glad to have found your blog (thx, twitter). Thank you – to both you and Dee – for writing about all of these feelings that are so hard for us all. It’s really easy to feel like we’re all alone in our very uncomfortable feelings; I think it really can help the community to talk/write about them even if it’s not easy.

    I’m on the other end of things – amazingly, I’m a survivor of almost 13 years of an aggressive breast cancer. I do a lot to try to encourage others to be more physically active during & after treatment, but am also constantly sorting through all the emotional after effects. Ongoing process….

    Thanks for writing. Looking forward to reading more from you.

    Julie

    • Hi Julie

      Firstly, I’m pleased you found the blog too, and thanks for your comments. I have always felt that it was important to talk about these issues. A couple of years ago, when I started writing, there weren’t so many blogs by patients, but it has certainly grown in popularity.

      We all write in our own unique style, and I guess it is about finding one that you enjoy. I try and talk about issues that others don’t, because, as you say, I feel it is important to know that you are not the only one who feels like that.

      I have learned a lot from my own writing, but also from the comments that people like yourself leave. We have a community here, where we can all learn from each other.

      Great to hear the positive things that you are doing with your life now. It is incredible how lives change after dealing with cancer! Well done to you on all counts.

      If u do find yourself with some spare time over the holidays, there is a good back catalogue of posts to read 🙂 Thank you for taking the time to share your thoughts and experience, and I wish you seasons greetings and look forward to welcoming you back to the blog soon. Chris

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