You would have thought that after 6 years of similar cycles, I might have learnt, but no! Far be it from me to disappoint. I am like the baby who continually puts his fingers in the electric socket, to find that it hurts, every time. As soon as I feel well for a few weeks, I think that my problems have all gone, never to return. Despite all the warnings, I continue like nothing has happened, until my body says no more. Which it has done this week.
A combination of cold weather and bugs everywhere, took me down quickly.Which has left me with little energy or appetite, and even unable to partake in my usual Twitter conversations. But it did give me a lot of thinking time. My initial emotion, was frustration. That my life has yet again, been interrupted by my health issues. Stopping me doing the things I love, and progressing my work in cancer support, hopefully only temporarily, though.However, I then thought, that actually, I should not be complaining at all! I have life, where it wasn't expected. I should be grateful, I am and always will be, of course, but sometimes forget! But guilt is the most difficult emotion for me to live with.
Independence, is probably one of the most important things in our lives. But like a lot of people diagnosed with cancer, mine went,along with a lot of other things. I have become dependent on medication, the skill of my clinical team, but more importantly on my family and friends. Sure, everyone says it's a pleasure, of course, but looking after someone as obstinate as me, could not be described as that, I am sure!
Not only is it my life that is affected. Unfortunately, I have dragged other people into my world too. You see, this is the almost hidden affect of cancer on us. Not only does it affect the person who is diagnosed, it changes the lives of others too. In my own instance, My wife and I had decided to some travelling when we retired.Getting to hospital frequently, is now almost the limit of my travelling!
All our hopes and dreams, have been put on hold. Our financial plans for our boys, have also had to be adjusted, to fit with my situation. I struggle to do any physical work around the house, and my boys have to do most 'man tasks.' Even driving long distances is difficult, as I find I lose concentration quickly. This week I have been unable to enjoy my wife's birthday celebrations, as I have been unwell. We are due to go away for the w/end with friends and am hoping I will be up to it by then.
It's very difficult to plan things as a couple, now. My wife is at the stage in her life, where she should be out travelling in the sun, and enjoying herself. Not picking up the pieces after me, when I'm continually unwell.Making sure I'm taking my medication at the right time, and ensuring I get to the hospital when I should. Whether we like it or not, I need carers. That doesn't thrill me with joy, I can tell you!
I wanted to put this out there today, as from my talks with a lot of other patients, there are many of us that feel this way. Some people discuss it with their partners and others don't.I guess we all live with a feeling of guilt about something, some even feel guilty for being alive, while others are not! But at times, it is a heavy load to carry, along with everything else. Everyone says I shouldn't feel that way, but you know how hard it can be to ask for something once. Just imagine that every day!
For those of you affected by cancer, you may recognise some of the things I have written about today. I am also aware that I now have a very varied readership, and so if you have little knowledge of the impact of cancer in someone's life this may be surprising for you, but unfortunately it is real.
What emotions do you go through daily? Are you affected by guilt like I am? Is there a way that you have found to deal with some of these issues. I do look forward to hearing from you. Please feel free to leave a comment below, or catch me on Twitter @christheeagle1
Oh boy, the guilt thing is hard to deal with. Like you said, cancer affects more than just the person with the diagnosis. In my case, my husband has his own long term health issues which have undoubtedly been made much worse because for the last 5 years he has had to look after me through my ill health and subsequent cancer diagnosis and treatment.
ReplyDeleteYes, I understand about the "in sickness and in health" thing but it would be nice to have more of the latter and less of the former!!!
Hi Kaz
DeleteThat situation is an awkward one too. It must be very difficult for you both. My wife has so much energy, and I hate saying that I don't want to go somewhere, as I am not feeling up to it. I have changed her life, in the same way, you have with your husband.
I think that is another major thing that people don't understand about cancer, and that is it's effects on others. It is really the 'ripple effect.
Fully understand too, "the in sickness and in health" thing. I had 51 years of perfect health, so maybe I shouldn't complain! Thankfully my wife is well, and I think she sees me as her project now :)
Wishing you both all the best, with things Chris
This has been a really bad week for me, in which loss of independance, frustration and guilt stand out like beacons. My form of non-Hogkins 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.
ReplyDeleteI have just completed my sixth snd 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 utter debilitaiin being the worse. The eagerly awaited holiday holiday in the sun with my equally hard working partner, cancelled! Some of the gigs we have been dying to dance at, cancellef! 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 us 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 dteams 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 sone eandom 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 dreadfull 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 sll 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, snd 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 coridoor crying like a baby. I was unsure if it was safe to let go of the wall, I wss struggling with visual distrubances, and I was so do weary snd 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 genersl oncology Ward where End of Life was going on around me. "The Doctors are busy with oatients who are reslly 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 snd urgent need, yet no one could see me, I had become invisible, and I felt like a non-person, unwsnted, afraid and alone. I was still alive, and once lucid again, I felt guilty that I had botherer the nurses than night, that I had demanded that someone met my needs, when some around me had lost their fight. Guilty as charged.
Hi Dee
ReplyDeleteFirstly, I feel extremely privileged that you have chosen to share your very personal story, thank you! I know how very difficult it can be to open up to the world, about health issues. It seems from what you say, that in many respects, your
story is similar to mine, including the disease itself.
My own treatment has been going on for 6 years, and I am familiar with many of the things you talk about. Unfortunately they are more common than most people will admit! It is what concerns me, and is why I write this blog.
I struggled to find anyone from any health organisation who could understand these things, which shocked me. No information told it how it really is. So I started this blog. I wanted to bring into the open many of the issues that people don't seem to either want to, or can't, talk about.
With my own constant treatment and visits to the hospital, I know the reality of things, as a cancer patient. I am shocked to read about your current experience, but this is another reason why these blogs, and social media in general are such a great tool for patients.
Your story is a very powerful one, which has moved me personally, and I have been contacted by many readers already, saying the same thing. This blog is about sharing experiences, so that we can all learn. I have learned so much from yours.
If it is ok with you, at sometime in the future I would like to use these comments as the basis of another post, to share with the readers?
My best wishes go to you and your family. I hope things quickly improve for you, and look forward to welcoming you back here soon, Chris
Hi Chris. This us your community blog, and the thoughts and words I give are given freely to all, to be used as deemed fit. My next post will be done on a computer though as that one took about 2 hours on an Android lol
ReplyDeleteHi Dee
DeleteThank you for your generosity. The time spent on that last post, had a massive impact among the readers. I am very keen, that people can learn from experiences such as yours. Not only patients but Health Professionals too!
Please contact me via Facebook https://www.facebook.com/chriscancersupport or Twitter @christheeagle1 and I can let you know when I have written the piece.
Many thanks again, and I hope things are progressing for you x Chris
WOW, All I can say is thank you for your honesty. Expressing how you feel, even the feelings of guilt, can be so healing. It is in expressing it, writing it out, and sharing it that can help you let it go.
ReplyDeleteI totally understand feeling guilty and not wanting to bring others down; I bet most of us can. We all want to be independent. No one likes to be unable to do things for themselves. And then to watch loved ones who could/should/would be out there doing other things. It's no wonder that guilt comes in and takes over.
I want to offer that holding onto guilt will only create blocks in your energy being which will then exacerbate the physical symptoms of illness and disease. So again, as I wrote it above- bravo for letting this out, letting it go, and getting it out of the system so that it can be released and healed.
Thank you for showing us truth, courage, and bravery in every sense of the words! Enjoy your day.
Hi Elizabeth
DeleteThank you for your comments! When I started this blog, I knew that to get people to understand themselves better, I had to be very honest about my own situation. As you know, there are many blogs out there now, but I wanted to talk about the things that people don't normally mention, even if that means discussing my own frailties.
One of the benefits I never realised there was in writing about my own experience, is I actually feel better, when I am writing. As you say, the feelings seem to flow, and some of the frustration escapes. People who write 'guest posts' also say they feel the same.
I really appreciate your comments Elizabeth, coming from a professional in this field, they are truly valued. I know that the readers will learn from those, and that is what it is all about. Sharing our experience. Have a great w/end, and thanks, Chris
since my mother died two years of a brain tumour I hate the month of November with a vengeance. It brings back such horrible memories of those dark days spent beside her in the hospice, as the light faded outside the window and her own light dimmed. I have been very lucky to be away this year for winter and it has helped so much. Our memories are so inextricably linked to the time of year and the seasons in which we experience them and they can be so easily triggered.
ReplyDeleteHi Marie
DeleteSo sorry to hear about your mum. It was very similar to when a good friend of mine died 3 years ago in January. It was exactly as you describe. We were visiting the hospice over Christmas though, which was terrible for everyone.
We have those emotions exactly as you describe, now, every Christmas. I'm so pleased you are in sunnier climes, with fresh work to focus on. My best to you as always Marie! Thanks, Chris
Guilt such a powerful and destructive force I know so well. I know when I had cancer the first time I worried that my lack of wellbeing short changed my children and I think it did for a time. But I also see its helped to make them the fine people they are. I'm not suggesting
ReplyDeleteSorry posted too soon! I intended to say I'm not saying that's the same for you but sometimes feeling guilty we miss what we are bringing instead. Thanks for the wise words you bring to this Chris. Good to connect. Audrey x
ReplyDeleteHi Audrey
DeleteThe points you make above from your own personal example are very valid! I hadn't even really considered what I bring.Thinking about it now, I feel that whatever I bring now, is a lot less than I did before cancer.
You are so right about the children thing too. My boys have been brilliant, growing up with that shadow hanging over me. Now we have no fear, of things, but I still find the guilt thing difficult!
Thanks for your very insightful comments, and yes it is great to connect. All the very best, Chris