Life after cancer

This group is for cancer survivors and people who have finished treatment. It is a space to discuss things like the physical and emotional after effects of cancer, returning to work, or trying to move on with your life.

Effects of cancer treatment 20 years on

brittania
Posted by

Hi Bea, 

I honestly think that getting cancer is much the same as a death in the family, and we go through the same stages of bereavement, we get angry, we feel sorry for ourselves, and eventually we accept it, and unfortunately our loved ones go through it as well, and everyone can deal with it in different ways. It's like when you hear about a couple who lose a child, and their marriage collapses because one of them wanted to remember the child everyday, and keep their bedroom a shrine, where as the other one wanted to accept it and move on. Your husbands way of dealing with it, may have been to act as normal as possible and carry on with what he had to carry on with, going on working, making money to pay the bills, this may not have been what you needed, but it may have been how he chose to deal with it. 

My husband and I also struggle with a lot of the same issues, he works full time, and I can't work, so the housework and cooking and childcare should be all down to me, and at first I felt very angry and resentful that he could not understand that I was sick and had no energy, but once I stopped feeling this way, I could understand where he was coming from. Fair that I have to be in pain to do the vacuuming, no, but is it also fair for him to work 40 hours a week and then do housework on top, no that's not fair either. I had to accept that this life we are in isn't fair, but you just have to get on with it, and do what you have to do, I can't let my child live in a pig stye because I have no energy and hurt everywhere. You need to find whatever it is that you need to help you accept things and move on. That may mean going to counselling with your husband, or start up your counselling again, or it may be that you need to make an official complaint over your lack of care. You clearly feel very let down, and it may be that the only way for you to move on, means that you need to say what you feel and do something about it. Right now you are feeling like a victim, which we all do at some point, and you need to figure out how to turn being a victim into being a survivor, what is it that would make you feel, hey, I survived a horrible ordeal, but, at least I survived, this is not going to break me, I am not going to be the victim. It might give you a sense of fulfilment to bring your complaints to people's attention, because you potentially could make a change. Think about it...

**Brittania

annese
Posted by

Okay, Bea, what I am going to say to you now, will probably have everyone tick tocking out of their boxes in outrage, but...  firstly, on here there is NO SUCH THING as going on far too long. Your situation both horrifies me and makes me want to wrap you up in cotton wool and bring you over to my house for some well deserved coddling. The trouble with being on here is that after we have all read your comments, all we seem to do is mouth a few platitudes at you and you probably come away thinking "well a fat lot of bloody good that did me". Just knowing that probably 70% of cancer survivors go through what you're going through is not going to make you feel better.

Secondly, congratulations on surviving the cancer, you are a VERY brave woman. Someone should have said that to you a long time ago and sadly, the someone who should have said it, is your husband, although to me being a husband or a wife is synonomous with being a partner and no real partner would have left you up shit creek without a paddle. When I was between chemos, because I had to be an in patient for weeks on end with the leukaemia, my youngest son suddenly turned to me and said "Mom, I just wanted to say that you are the bravest person I have ever met". Just hearing that gave me the strength to overcome things, but if your family aren't prepared to do that, then you are going to feel the way you do.

All of this counselling stuff and people warbling on about how counselling helped them...well actually it's crap really. Counselling can only help you if you work with the counsellor to find coping mechanisms which are fitting for you and that really depends on you and your needs. Not your husband's needs, or your daughter's or Uncle Tom Cobbley's need come to think of it. Fighnt cancer is NOT about your family, your family can do bugger all, but actually support you and it seems to me that you are getting precious little support.

My advice would be not counselling, perhaps you can think of that once you have set your family right about things. What I would do is stop allowing this husband of yours and your daughter turning you into a victim. Sit them both down and communicate with them. Tell them that the recovery period for the treatment of cancer is long and involved and that some days, you will NOT be able to do things and that since they are big enough and presumably idiotic enough to look after themselves for those days, they must suck it up, deal and get on with it and leave you alone to recharge your batteries.

The fatigue we can do nothing about. I have a fabulous team at the Royal Marsden and they tell me that the fatigue can last for years. In fact I am at the late effects clinic with people who have been in remission for 20 years and they tell me that the fatigue is still with them. My oncologist explains it like this:

You have been through a treatment that kills off MOST of your cells, not just the cancer cells, but the healthy cells as well. Some of the cells in your body may never regrow, cells such as your brain cells, which don't grow again. This is why we all are unable to completely do what we could before mentally. Our brains are slower, the fatigue makes the brain even slower.

Pace out your day. Decide how you feel when you get up. If you have had a bad night, then you tell your family and you ignore the snide remarks about you 'having a bad night again'. Turn around to them and say "Fuck yeah, I had a bad night and now I am going to look after myself, if you want something to eat, then cook the damn thing yourself." and then walk away, have a nice long bath or shower, make yourself a cup of tea and sit with a good book and just chill out. If your family are grumping and harrumphing around you, ignore them.

Don't just go to counselling to make you and your husband partners again, do it because it will help YOU. Get yourself well and feeling relatively okay first before you start fussing and worrying over a bunch of people who couldn't even be bothered to help you while you were going through this treatment. Comfort yourself with the knowledge that if either your husband or anybody who is being snide to you had to go through what you went through, they would be screaming and moaning in ten seconds flat. You did it, you got through that terrible time, without their help. Now is the time to cut yourself some slack.

Your husband says he loves you too much? Well, maybe he needs to prove that by stepping up to the plate and being the strong support and rock that you expected him to be and that he promised to be when he married you. Your daughter? Well kids are weird, they don't think stuff through. All she probably wants is her old Mum back, but you're not the old Mum, you're the new and not so improved Mum and she is just going to have to suck it up.

I know I sound harsh and probably everyone is girding up for battle in order to tell me that I am horrible and I shouldn't say this or that, but what I am telling you is what I do now. I look after me first. It's ALL about me, me, me and when I have the days that I feel okay, then I make it about them, but I never forget to put me first. Start as you mean to go on. You are a wonderful, unique, courageous and special human being and nobody should be telling you anything different.

If you want to talk away from here, you can PM me and I will give you my email address. Hell, I will even give you my phone number if you want. I personally cannot mouth platitudes at you and then walk away, especially not from someone who is literaly screaming for help.

The phrase for today and for all other days from now should be "Be Kind To Yourself."

If you want to berate me for anything I have said, or anyone wants to that's absolutely fine by me, just remember. I am a former soldier, I was a combat soldier in the military. I have been to hell and back  in a war and the same through leukaemia and I have come through it stronger I also have Teflon Coated shoulders.

Big hugs to you xxxxx

amanda_a01
Posted by

Hi Bea,


I just thought I'd add my tuppence worth into the discussion.  First of all I am so sorry to hear about your struggle and I too wish I could take it away for you.  Cancer truly sucks but what's important is to remember that one size doesn't fit all when it comes to seeking help. 

It's important to seek help if you need it and if you feel that includes counselling then that's what you should do and don't let anyone tell you otherwise.  To say that counselling is a nonsense is simply not true for everyone and it's very counter productive.  You've mentioned your difficulties with your family and that I can certainly relate to.  Not only am I a stage 3 cancer patient, but I've also been on both sides of the fence when my husband needed a liver transplant prior to my diagnosis.  It sounds to me that hubby is frustrated but doesn't know how to channel his frustration.  Having been a carer there were days that I felt bitter at having to constantly be the strong one.  It wasn't because I didn't care but more than anything I was bloody tired.  I had two young children (one of which was only 3 months old at the time) and yet I was in full time work and having to care for my husband too.  It certainly didn't mean that I didn't care, or love him any less I just wanted the old hubby back, even though I knew that wasn't possible.


I agree that talking to hubby and laying your cards on the table may be a good idea.  You need to clear the air but more importantly you need the space to say how you feel.  As for your children, yep that's a tough one but they may just surprise you.  For a child to see their parent ill it's not easy, afterall we're supposed to be the strong ones right?  So expecting them to 'suck it up' is a little harsh and that certainly wouldn't have worked with my 9 and 13 year old children who are struggling just as much as me to process why mummy isn't the same anymore.   But, by keeping those lines of communication honest and open, you can come to a better understanding on both sides.  Believe me it's not the easiest conversation to have but its one worth having.  Its true that cancer is like a bereavement and yes we need the space to grieve.  But perhaps your family are grieving for the old you too.

My advice for what it's worth is to let people know how you feel and if you don't feel you're getting the support you need at home, then def think about counselling or other channels for support.  I've had counselling on and off for a while now.  I don't go because I'm looking for someone to give me the answers, that needs to come from within.  But it does help me to focus, to think of things differently and work out what's important to me.  No one likes to feel like a victim, and you've been (and are going through) so much already.  We all need someone to lean on now and then, whether it be a family member, friend or counsellor.  Do what's right for you and don't let anyone convince you otherwise.  Big hugs xx

P.S if you ever want to rant or a listening ear PM me xxx

livinglife2318

brittania
Posted by

Hi Annese, 

You set up your message telling us that we are going to rage against you for your opinion, then you belittle all our advice, if you truly did not want people to "berate" you, don't criticise their kind words or desire to help. Saying we "mouth a few platitudes" and expect people to feel better just because we say we've gone through similar? Saying that our suggestions of counselling are us "warbling" about how counselling helped us is just rude. You say you sound harsh and everyone will be "girding up for battle", well funnily enough when someone insults most people they won't just sit back and accept it. 

You seem very angry, and it seems like you are encouraging other people to be angry, telling Bea to swear at her family, how is that helpful? 

If you really just wanted to make a different point you could have easily just said that you did not find counselling helpful and you found just being honest and open was what helped you, there was no need to insult and belittle other people's advice, you clearly wanted some drama, so here you have it. 

**Brittania

annese
Posted by

Whatever, I speak as I find.  If you don't like what you read, then don't read it. I'm too tired to deal with the crap. I'm not going to justify anything I think to anyone else. This is how I feel and if someone can take some strength from it, even if they don't agree with everything I say, then my work is done. I know how Bea feels. My eldest son, who lives with me has Aspergers and he holds down a full time job. In the almost six months after my transplant, he shoveled the skin that was falling off me into carrier bags full, then he went to work doing shifts leaving me with a flask of tea and a bowl of cornflakes. He never knew what he was going to come home to. I had Graft Versus Host Disease of the skin and my skin was sloughing off me. I was so ill with the aftermath of the treatment I could barely stand and despite having a so called best friend and another son, I lay by myself, knowing that the GVHD was killing me plus the fact that my saliva glands had stopped working so I couldn't swallow any food. I would wait until my eldest came in and he sat with me while I cried with the pain. Eventually I stopped being able to pass urine. The GVHD has swollen up my private parts and the entrance to my bladder. One day, I called my youngest son and told them to take me to the nearest A&E. Up till the point that he came to fetch me, I hadn't see hide nor hair of him for almost six months, not even a phone call and the same with my 'best' friend. All I had was a very frightened man with high functioning autism to help me.

So I know what Bea is going/went through and I know what it takes to get better when you don't have anyone making you cups of tea and sitting with you. I sat like that for days on end. I had no strength, I couldn't bathe, so I sat in the bed unable to even get downstairs to get a drink. The pain from the rash was so bad I bit my lip to shreds trying not to scream.

So please, keep your outrage to yourself because I honestly don't need it. Bea needs to be kind to herself, if her family won't help her then she has to help herself. I agree you couldn't do that with small children, but that's what you have a partner for and Bea's partner is obviously not stepping up to the plate.

As I said before and I don't retract it, sometimes you have to be tough with the people you love and I don't mean Bea's husband and daughter being tough on her, I mean Bea being tough on them. Telling them how she feels, tell them that until she is able to turn her mind and her strength to looking after them, she MUST put herself first.

Counselling is rubbish, if you go into it with the wrong idea; i.e. that the counsellor has a magic wand, which she waves and somehow you are all full of sunshine and farting rainbows. It only works if you understand that the counsellor can only help you to help yourself.

Meh, I'm done, bored now. I would do what I could to help Bea, but all of the platitudes in the world are not going to help her situation in any concrete way.

suedenim
Posted by

Hi all. Just to offer my credentials - 6 years post stem cell transplant for stage 4 Mantle Cell Lymphoma. 64 years old, retired, live alone, no children.

I read messages on here and sometimes I cringe and sometimes I cry. Everyone who posts here has had their own experience of cancer and its treatment and after effects.

We all seem to agree that each experience is very different, we have different psychologies, different family situations, different lifestyles . One thing we have in common is cancer. We offer suggestions as to what has/has not worked for us, however we cannot assume that our "fixes" will always be good for someone else, just as we cannot assume that "fixes" wont be good for someone else.

I, too, had some counselling sessions and I did not find them useful. Having said that, others I know from the clinics have found counselling of great comfort and help. We cannot poo poo it, that's just a sweeping statement and I think we are intelligent enough to know that there is no magic wand. A counselor helping someone to help him/herself is wonderful, isn't it?

It saddens me, Annese, that you put so much effort into your lengthy posts and then, when not everyone agrees with you, you are bored and sign out. I am also saddened that you have had such a rough time and if I lived closer to you, I would certainly pop round for a cup of tea and a natter.

Please also be aware that not everyone comes from a service background (my father and brother were RAF) and so they won't necessarily have the outlook on life that you have. Its a wonderful thing to listen to something with an open mind, and accept that you feel differently.

Whether you want them or not, I send you healing hugs and love. Sue x

brittania
Posted by

Annese,

I have no outrage or any kind of rage for you. I honestly feel bad that you are so angry with everything, I just don't agree with you belittling other people's offers of help. You are free to say that you did not find counselling helpful, in fact I put it in my post that you are free to share your experiences and advice, just do not flippantly discount others. As mentioned before, your experience is yours, our experience is ours, we share what we can in hope of helping, and it helps no one to demean someone else's experience. I have seen people get upset with your posts, and find your attitude abrasive, but that is not what I am doing. Your advice is yours to give, and give it if you want, but do not disregard my experience or my sharing, and I will not respond to yours, it really is as simple as that. 

**Brittania

honey bea
Posted by

Hi again everyone and thank you all so much for your words of advice....some of them i can try and some of them i cant.  I do realise that even though i am on antidepressants i am still depressed so i will go and see my gp to see what he suggest to help me.   One thing i must make clear is that my daughter ' could not' help  me during my cancer as she was working long full time hours, i hardly saw her because of this and after having a chat with her when i was better, she admitted to  me that she could not cope with seeing me so ill, she really thought i was going to die and she was having terrible panick attacks at work every day, she would go in to work nearly every day crying her eyes out because she could  not cope with me being so ill, and she didnt want to see me like this, so she kept away as it was too painful for her.  I also didn't want her to see me so ill and i prefered her to stay away also, but she did help when she could.   My hubby was working long hours, and doing everythign in the house, and he started getting chest pains and i was terrified he was having a heart attack with all the work he was doing,  but i guess i still felt bitter that when he did have time to sit and do nothing, he never once came and sat with me, i was so lonely in a house full of people!!! But maybe that was his way of coping.


Some of the advice given to me is sometimes impossible to do though, to  make myself get up and get one with it because we can't leave it all to hubby who has worked a 40 hr week or we can't leave our kids to live in a pig sty,  When my heart is bad i can't stand up,  for example tonight i can feel myself going down hill, i feel faint, dizzy and i have to sit down.  I have sat here and i can't keep my eyes open, no matter how much i fight it i can't keep them open. So i lay back in my armchair and i have this overwhelming need to sleep, its so powerful.....i get out my oxymeter and my oxygen levels are down to 91% so i know now why i'm feeling like this.  I can't move to save my life, i had a phone call from my daughter and i'm talking to her and i start to talk rubbish, its almost like hallucinating, shes talking to me about her friend and im answerign her about a holiday we had ten years ago?? It is honestly like i am not with it, next minute i'm asleep whilst still on the phone to her, she shouts at  me and i wake up and as soon as she's talking to me again i'm answering her about a film i want to see on tv? All the tiime i have my eyes shut and i can't move, i can only put this down to my low oxygen levels, if i do manage to stand up my heart can't cope and its racing at 130bpm, so i can honestly say that even though i don't really know whats going on, i cannot do anything at all when i'm feeling like this.

I must admit i have totally lost my confidence in all this, especially with the weight gain, and i do find what someone suggested about the eating anything, this must stop i know.   I also have an adult daughter who has severe special needs and i talk to her every day on the phone trying to help her with all her problems and also visit her every week and do her shopping for her, she has great difficulty with life and i help her as much as i can every day.  
I always seem to be looking after people, i have a caring nature like that, but no one looks after me!  I went to the shop today and was in a queue to pay, my feet went completely dead because of the nerve damage and i struggle to walk home again but i made myself, i was offered a lift but i forced myself to do this little bit of walking as i know it does me good....but it is such a huge struggle to do these every day things,  no matter what i do around the house, it hurts each time i do it. I can't bend down because of  my intestines pushing through my muscle wall, but i do bend down to do the hoovering, to clean the floor  etc and it hurts, and because i have done this my stomach will hurt for the rest of the day and night, i suffer for doing one simple thing.  I guess my problem is im sick of it all, im tired, im exhuasted and i'm struggling and no one is taking a blind bit of notice and on one wants to help.  I seriously feel that maybe i should move out into a small place of my own, because that way i can do things when 'I' want to do them, i can eat when 'I' want to eat, i will do my housework when  ' I' feel i can do it and not when it is expected of me.  I won't have people moaning at me and telling me i'm lazy, or getting angry because i havn't done what they wanted me to do at the time they wanted me to do it....i can relax and do it in my time.  I feel i'm full of anger and i know i am, because i want to scream and shout to them and say, have you any idea how bloody miserable it is to live like this every single day, the pain is awful....but im thankful i have my life so i carry on, but i DON'T need people telling me i should be ok now and over it, or to get on with my life, im in pain and unhappy xx

brittania
Posted by

Hi Bea,

Have you contacted a Macmillan Nurse, or one of their helplines? You need help, and I agree, as a mother and a wife, and a person who is naturally a carer, you feel like you can't ask people who all ready have very busy lives or needs of their own. But maybe you could contact Macmillan to see about what help there may be for you? There are those of us who seem to react more extremely than others to the treatment, and when you were talking about having conversations with your daughter where she was talking about one thing and you were talking about another, it brought back so many memories! I used to carry on conversations with people, as though they were other people. Asking people who had no kids how their daughter was doing, that sort of thing, and when you realise what you did, it's so embarrassing, I think it must be something innate in us that doesn't like people seeing us weak and vulnerable, but people are much more understanding than we give them credit for. 

I was angry for about 8 years after I finished treatment, and every time a new health problem or complaint came up it would make it worse, and then I cracked. I took an overdose and ended up in hospital, but it got me to finally see a psychiatrist, and it helped me move on, of course it moved me on to the "WHY ME!?" stage, which was not  much fun, either. I think maybe if you speak ti Macmillan, it will make you feel like you are back in control, finding out what help is out there, and being able to decide what sort of help you want, they can even get you in touch with therapists, or different support groups as well, if that is a road you want to take. But YOU need to take the step, you need to ask for help, admitting you need help is sometimes a huge weight off your shoulder. 

**Brittania

lifelover
Posted by

Hi Honey Bea,

I really really relate to what you are saying.  I just have a couple of thoughts that I'd like to share with you in case they help.  These are things I've done for myself.

I eat out of anxiety.  I used to be a healthy size 12 (I don't weight myself) and now I'm a 16.  The problem for me now is that if I eat too much I get breathless so I've had to try and control myself.  I found out that the anti anxiety medication I was taking, venlafaxine, made my anxiety worse (and it increased my heart rate) so I've been off of that for the past couple of months having weaned off it slowly over a few months.  I also now meditate - a guided meditation using a technique called mindfulness.  It has also helped me and my partner helps me to stay on track with it because he notices an improvement in my calmness when I regularly do it.  I use a website called www.headspace.com.  The man there has a very peaceful yet "normal" voice and he is encouraging.

When my partner and friends are "helping" me with my coping with all the crap I feel, I tell them what I need from them.  I say something like, "it would really help me if you wouldn't say that", "instead, could you please say ........  "

I get tired doing housework so I have a friend come over once a week to do some of the more difficult chores like scrubbing the bathroom, floor scrubbing, etc.  She spends a couple of hours - I feel guilty - but I'm learning to accept help.  I can't do everything.

The pain in my neck and arms and in particular, my feet (I can't walk sometimes for the pain of it) are helped by weekly massage.  This is very expensive but I cannot do without it.  I pay for it privately because I see a specialist masseuse who understands the mechanics of what I'm going through.  We do a "trade" and I teach her daughter music as part exchange.

Lately, I have forced myself to get into better shape and some days it is very hard because my feet hurt so much but I go walking - not very fast - but it is hard work.  I feel that if I didn't do this I might as well give up living because I cannot just lie around and live with my pain.  I take paracetamol when I need it and an occasional diazepam before I go to bed so that I can sleep with the pain issues.

Beta blockers are helping me.  I know you take these too.

Counselling helped me tremendously but there were issues I needed to deal with on my own.  Mindfullness and meditation has worked for me.  There are some good books out there but Andy Puddicome's book is very approachable.

These are some of the things I do to cope.  I have had to give up a lot of my work but I can still teach several hours a week so I do have some spending money.  I don't need much these days though because I have a lot of hobbies like crotchet, music, jewellery making, cooking, gardening.  It helps me keep my mind off of how crappy I feel.

Bea, I really hope you find some peace.  We all know how you feel but you are in a scary place right now.  I wish I could give you big hugs and help you somehow.

Please PM me if you want to talk.

xxxx

janiegray
Posted by

Mindfulness is an age-old practice that's been shown to help us become more balanced, mentally alert, and fully present. Basically, it's about being in the moment instead of living in our heads. Meditation is the key to mindfulness. Mindfulness is about absorbing all that is happening now, and letting yourself BE in every moment. With meditation, you can retrain your brain so that it's easier to be mindful. The SOS Method (https://sosmethod.co/) is a meditation app designed to help facilitate that process and in an easy, enjoyable way that takes just a few minutes a day. It's free to download on the iTunes and Google Play stores, so it's a great way to get started with mindfulness.