Life and living after cancer...

SunshinedaffSunshinedaff Posts: 764 ✭✭✭✭
I was moved to tears this morning by a post I read on the Live Better With FB page and all the replies that followed.

The post was about the struggle someone was having with life and living post-cancer after all treatments have ended, but still having issues from side-effects, struggling emotionally etc. So many of the replies that followed were of a  'me too' type. 

I know most of the people I have spoken with on here are either in the midst of treatment or are living with cancer as a long-term thing, so to ask for help with life 'after' cancer may seem a daft thing, but clearly from reading the fb post there are many people who are struggling with life after cancer. 

I consider myself to be a newbie when it comes to post-cancer, it was only a year ago I was back in hospital having surgery due to complications with meds. 

To be told that your cancer is gone, or in remission, is really fantastic news, but I think for many, processing everything they've gone through, doesn't begin until everything stops. It was that way for me, I tried to write things down during everything, and hats off to those who are able to write blogs etc in the middle of stuff, but my brain wouldn't function properly, and it was all such a whirlwind of 'be here, 'go there', 'take this' 'do that'. 
Whichever order the treatment is done in, at the end of it, it does feel like being cut adrift on a choppy sea all alone in a dinghy. For many they find that family, friends, employers suddenly think 'Oh, great, you've finished treatment, now let's get on, carry on as normal'. Except 'normal' packed up and moved. 

For all of us, cancer changes you or your loved ones. I'm not sure that the 'life before cancer' will return, so we have to find a new 'normal', embrace the new life ahead. The feeling of 'What now?' surfaces. I knew I was in no way ready to return to work, a part-time job in school. I was on sick-leave, unpaid, not receiving any benefits or help, money's tight. The pressure to return was immense, but it was difficult to describe how and why I wasn't ready, plus I was suffering from many side-effects I wasn't expecting.  I was at the hospital waiting for an appointment, that I had the thought that it wasn't 'right' to go back, to make the change. To be honest I was nervous of that thought because I don't like change, but five minutes later, before I had even said anything, my husband looks at me and says the very same thing! Awesome!
So I resigned my position, and it was like a weight lifting from my shoulders, and I could then focus on getting stronger and think about what next.

I am a positive person (mostly, I have had my share of very dark days), and I am very thankful that the cancer I had is no longer present in my body. I try and find something to be thankful for or rejoice in each day. Cancer has left its mark on my life, obvious physical changes, bits missing =), side-effects of chemo, radiotherapy and medications, that are more long-term and harder to 'get rid of'.
I count myself to be very fortunate and blessed that I have come through this and I feel I have been given a second chance at life. I am usually quite hard on myself (aren't we all!), but I am learning to be kinder to myself, take things one day at a time when necessary. This really isn't a cliché, it is the only way to approach this walk. We learn to become more flexible with plans, thoughts, ideas. 

I have read many brilliant stories of people who are navigating life with cancer, they are all inspirational, amazing, showing such courage and bravery.

My hope is that this will bring encouragement and hope to others if at all possible. 
The one thing people need after a cancer diagnosis, obviously apart from no cancer, is hope. Hope that it's possible, hope for breakthroughs in research and new medicines, hope that there is life after cancer. 

So, I was wondering, are there others on here who are navigating life post-cancer, and it's working for you? There are a lot of people who are struggling, maybe someone has a positive story that would encourage others?


Looking forward to reading more...

Thank you for reading

Lou


Comments

  • RobertARobertA Posts: 577 ✭✭✭✭
    Good afternoon Lou @Sunshinedaff
    What a brilliant post. I had been thinking of raising this issue myself, but you have pretty much said it all. 
    There seems to be little doubt that people who have lived with or are living with cancer have two issues. Cancer and then it's side effects, emotional and physical. 
    In sharing your story as openly and honestly as you always do, there is no doubt that you give others comfort and reassurance that their feelings are normal and shared by all of us. 
    I will put my pennorth in soon. Thank you so much for raising this important issue.

    Rob X 
  • LesleyLesley Posts: 138 ✭✭✭
    Lou what an amazing post ! As Rob said very honest and open! Thank you xx
  • ALOELNITRAMALOELNITRAM Posts: 2

    JUST JOIN TODAY AND YOUR THE 1ST POST I READ LOU.You pretty much hit it right on the nail.Even if treatment are done but not meds and your told your cancer free it always seems to stay in the back of your mind.Am so thankful that I pulled threw all those treatment and here to write about it.Love to hear how others are doing after all has calm down.l was diagnosed in 2016 and i,m doing so well.Best of luck to everyone.Leola

  • SunshinedaffSunshinedaff Posts: 764 ✭✭✭✭

    @ALOELNITRAM ,

    Hi Leola,

    Lovely to meet you!

    Thank you for your kind words.

    I am so glad you have had a successful journey through your treatment and you are now doing really well.

    It is great to have you here, and so encouraging for others to hear a positive outcome after cancer.

    I look forward to chatting with you again, there are lots of lovely people here, it’s a very friendly group.

    Lou x

  • Car06Car06 Posts: 2

    Hello,

    I'm new to this forum to any forum on fact, but after reading your post I felt I had to join and say that your post says everything that I am feeling.

    I worry that it's just me, I feel like I'm coasting alongside my work colleagues and they all think you are back, you look well but my head is definitely not where it should be and I can't put my finger on why. I spoke to my boss just before I left work tonight and said exactly the same, I am lucky things could be so much worse so why am I not getting on with it.

    I'm sure in time things will get better, although they aren't that bad, just can't explain it.

    Cxx

  • SunshinedaffSunshinedaff Posts: 764 ✭✭✭✭

    Hello @Car06 ,

    I hope you will see that you are most definitely not on your own, feeling this way.

    I am so glad you have joined, you will read many stories of people living through cancer. We all try and support and encourage one another at what ever stage we are at.

    The treatment you have had may be affecting you too. I had chemo, surgery and radiotherapy, and although we are given lists of possible side-effects, I don't think we get told all of them.

    You may also be on long term meds like many of us are. These in themselves have many various side-effects all contributing to how you are feeling.

    As you say, people around us don't necessarily see the struggle we have adjusting to life after cancer. Some people say they long to get 'back' to where they were before cancer, however, I'm not sure that is always possible. I think finding a new way of moving forwards from a new starting position, may be more effective. But it does mean, being able to deal with and process what has gone before.

    It will take time, try not to rush it. The delayed shock of what you have been through plays a part also.

    Obviously, you are most welcome to talk here about anything, but have you been able to talk through things with anyone local to you?

    Anxiety, especially of it returning and depression are very common things to occur. It seems like it comes out if nowhere. I felt like you did, I couldn't work out why I felt the way I did. I was able to speak with my GP, who was able to put it into perspective for me, and explain to me what was going on.

    I do hope that as you get to know us, you will be encouraged to know, things do improve, albeit slowly. It is important to be kind to yourself, you have been through a tremendous ordeal.

    Looking forward to chatting again, feel free to join in with anything, or start your own discussion.

    Hope you are having a good day,

    Lou x

  • RobertARobertA Posts: 577 ✭✭✭✭
    edited March 14

    @ALOELNITRAM and @Car06

    Good evening Leola and C

    I am delighted to hear that Lou’s brilliant post attracted your attention. She is the much loved bedrock of this community and I can rarely think of anything to add to her posts. I don't let that stop me though so here goes.

    A cancer diagnosis is not the same as that of any other type of illness. It is a life altering event. Your body has been beaten up and changed, you have had surgery, chemotherapy, radiotherapy, hormone treatments etc. You have coped with everything that has been thrown at you and now you are free to celebrate, party and shout from the rooftops. Aren’t you? 

    Well, no. It is surely not a surprise if the emotional reaction comes afterwards, when life is supposed to go back to normal. A person who has had cancer may not be quite the same person they were before and is probably dealing with physical and mental changes. Many of us still need hormonal treatments and regular check ups and cancer never really goes away. This is not always easy to understand for friends and family who generally want us to be the same person we were before cancer intervened, but we cannot always ‘snap back’ to that person and we may not want to. People keep telling me how well I look and how strong I am and I do try to put on a brave face but I have bad days and sometimes I feel very tired and lonely. 

    My life did not go back to normal as I had expected it to after treatment and I became severely depressed. I was advised to checkout MacMillan Cancer Support. They were very helpful and supportive and gave me access to a counsellor who gives her time free of charge, and slowly but surely she helped me to find a way through. MacMillan is a wonderful organisation and it is lovely to pop in for a chat and a cuppa with people who understand how you feel.

    I think the Good news is that you can get through it and get used to the feeling of vulnerability that always goes with a cancer diagnosis.  I was lucky to find the help I needed via MacMillan and the lovely people here on LiveBetterWithCancer.

    I am delighted you have found this Community. We may have different cancers, but most of us will recognise the post cancer feeling of anxierty and we are here to support and encourage each other.

    Rob x

  • ALOELNITRAMALOELNITRAM Posts: 2

    Thank you for your encouraging post .I love hearing how other members are dealing with the after treatments are done.I still have to take a prescription for 5 years and could very well be for ten years. One side effect is hot flashes which I had finally got rid of before I started this med.one of the bad side effects but trying my best to cope with.Beside that feeling good.😊

  • SunshinedaffSunshinedaff Posts: 764 ✭✭✭✭

    @ALOELNITRAM

    Good morning, or even good evening to you Leola!

    Thank you for your kind reply.

    I understand about the hot flushes too. I was put into the menopause with having chemo, and then after treatment had finished I started on Tamoxifen and now on Letrozole, both of which cause horrendous hot flushes! Haha! But like you , I am finding a way through it, I use cool pads at night. I don't know if you use them. I do recommend them.

    Have a good night/ day,

    🙂

    Lou x

  • 4Gretton4Gretton Posts: 29 ✭✭

    Good morning everyone. I’m playing catch up on all the comments since I last checked in. So first of all would like to welcome our newbies. I too have only recently found this wonderful supportive arena.... isn’t it fab! We’re not on our own after all!! I have already benefited from this great community, so keep checking in. Hear hear to @Sunshinedaff and @RobertA ‘s comments. Very eloquently put both of you.

    Life after cancer is a weird old world and I think the strange thing for me with hindsight was the fact that no one actually said to me that’s it, you’re all fixed. (Ok, I know that can never be an absolute certainty but something a little more concrete would be nice)It seems to be a case of going from one specialist to another and (thankfully of late) being told last scan clear, or for me more recently last colonoscopy clear. I always get the feeling that they’re looking for where it will appear next with slightly conflicting messages eg, why a colonoscopy when been told most likely it would reappear back in liver? It’s a great pity med school doesn’t train our wonderful doctors more in the art of communication . Maybe they should be encouraged to read our posts! So as well as the doubt and worry hanging over us we are also left with battered bodies that have been chopped up a bit and attacked with the most vicious chemicals-all necessary I know, but can leave us feeling like damaged shells of who we used to be- is it any wonder that mentally it is such a difficult uphill struggle!! But we’re here! We in the Live Better community are now a team and we can help each other through tough times and celebrate the good. So despite not giving myself the chance to recover properly from last procedure, so now knackered, the good news is that I have been spoiled by friends and family this week for my birthday, including the fab surprise of one of my sons suddenly appearing at our table when my husband took me out for a bday lunch...oh yes, there were tears...but happy ones. So lovely.

    Have a good weekend everyone-don’t get blown away ...looking pretty windy xxx

  • SunshinedaffSunshinedaff Posts: 764 ✭✭✭✭

    @4Gretton ,

    Good morning!

    Firstly, may I wish you a very Happy Birthday!! How wonderful to be surprised like that, very special times. You made me well up reading it!

    I love, love your post! So very true!

    I am guessing that the tests they do would perhaps show if something was going on?

    I know what you mean, sometimes feels like conflicting information, or mis-information. I remember my radiotherapy oncologist saying something that completely threw me, almost made me sick on the spot with fear. One look at our faces told her she'd said something amiss!!

    Turns out she was referring back to pre treatment!! Communication!!!! It took me the whole day to recover from, sat on the edge of the bath trying not to throw up. It just brought it all back! Hahaha!!

    You are right about the community, we are becoming a large family it feels like. Sharing the ups and downs that we all go through.

    I hope you will have a restful weekend giving yourself some time to get stronger.

    Have a great day,

    Lou x

  • Car06Car06 Posts: 2

    Hi all,

    I am overwhelmed with the messages that both Lou and RobertA have sent after my message, thank you.

    I was diagnosed with breast cancer in Oct 17 and had chemo, mastectomy with re-construction, 15 zaps of radiotherapy, finished herceptin 3 weeks ago and have 4 more rounds of zometa every 6 months.

    I have found the whole thing very surreal and still do, I did everything I was told, pretty much got on with things I was fortunate that chemo didn't give me to many after effects probably feeling more now with aches and numb areas and a head that seems hazy most days. I think I'm struggling with the "normal" in some ways it's too normal...if that makes sense. I would like to make changes, I promise myself to be kinder to myself, do the things we want to do say no to the things we don't want to do but it doesn't seem enough. I have a job that I like and my colleagues have and are very supportive, my husband is my rock although it has taken his toll on him.

    I have been visiting our local Clan and Maggies centres and they are great and I have met some wonderful people, I have been thinking about going to my GP, the one that referred me in the first place has left so will have to see someone else. I need to remember it is early days and generally I am ok but like I said something is missing and time I'm sure will be a great healer.

    Love Cxx

  • RobertARobertA Posts: 577 ✭✭✭✭
    edited March 18

    @4Gretton

    Hi there

    What a fantastic birthday surprise for you.

    I love your post. It certainly clicked with me. When I was first diagnosed, the prognosis was so downbeat that I went straight down to the Bank and put my accounts into joint names with my wife and reviewed my will. That was 30 months ago and I am still around and going nowhere.

    I had positive blood tests and a review a couple of weeks ago and I was told that they were thinking of suspending my hormone treatment to see if my blood PSA would rise (bad) or remain stable (good). I asked if stable meant thst the cancer was gone. Oh no, they said, you will always have that but it may be in remission for a while. Made my day. Not☹️

    I think that the medical people like to be a bit cautious so that when you beat their projections they see it as a win. Ah well, as you say, we have each other on LBW and I find the warmth and togetherness uplifting.

    Hi @Car06

    You have been through a lot and it is not surprising the way you feel and your husband too. A lot of us men keep our thoughts and worries to ourselves thinking we need to be strong and keep our emotions under control. I got away with that for a while but it caught up with me and I am much more open and emotional now which has helped a lot.

    Great to hear that you are visiting Clan and Maggies. We have MacMillan Jersey, How lucky we are to have such support.

    Rob x

  • Neet66Neet66 Posts: 8

    Hi

    Its been very interesting reading all your comments. My mother was diagnosed with breast cancer in 2017 and her treatment has been finished for just over a year.

    Unfortunately chemo and treatment have left her with Mild Cognitive impairment, we were worried she had the beginning of dementia but a brain scan ruled that out.

    It does feel like we are having to teach her the basic things to do, for example, cooking and how to use the washing machine. My father has done everything for her during the treatment and after, which I feel has not helped and I have suggested that he encourages her to do things but he just keeps doing everything still. Conversations are hard and she will repeat the same question several times in a space of half an hour.

    I'm really struggling to find help for her, the GP suggested we contact Alzheimer Society, which I did, but that was more for dementia.

    Have anyone else come across this?

    Is there anyone or anywhere that we can get help and advice?

    Anita.

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