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Bowel cancer

Thanks for letting me join had emergency op last Feb for stage 4 bowel cancer going for colonoscopy Fri to see if I can have reversal colostomy bag finished my treatment October but feeling very down feel like I can't talk to anyone as people think I should be skipping around singing dancing

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Comments

  • jacksprat_x1jacksprat_x1 Posts: 300 ✭✭✭✭

    Welcome to the site, it is very friendly and the support here is brilliant. You can say things in here that you don’t want to say to friends or family. We understand. I am beginning to realise that time stands still for us a bit and others think you should be moving on. But it hasn’t happened to them so we can allow ourselves time to adjust! As long as it takes. I understand the trials of having a colostomy and the management of the system! The time it takes for one thing. I need a lot of time to get ready now, something family have to accept. I’m so pleased you have finished your treatment and are able to have the reversal. I hope to have mine when my Chemo finishes. I had it as a belt and braces approach as they found it in one lymph node which they removed with the grade 3 Tumour, which had broken through the bowel wall leaking fluid and causing an abcess! No wonder my tum hurt! I thank my surgeon from the bottom of my heart!

    Please don’t feel bad about taking time to process your head and heart. Park your worries here and appreciate that every morning is a new day and life is good. I slept all night without get up to toilet last night for the first time since the beginning of December 2018. Wow!

    Have a great day.

    Lv Jackie x

  • LouiseJLouiseJ Posts: 593 mod

    Hi @Oconnorm ,

    You are very welcome here, as @jacksprat_x1 has said, you can talk about anything here. There are a growing number of lovely people joining in and even if the cancer is different, the impact and effects of cancer are all too often very similar. You will find understanding here. Please feel free to come and talk to us here anytime.

    I am sorry you are feeling very down, it isn't surprising though. You have been through a tumultuous time, the horror of being diagnosed with cancer, and then all of the treatments etc that you have had to endure has most definitely taken its toll on your body and mind. I know I found that it wasn't until after all my treatment had ended that I began to process what had happened. Everything moved at 'whirlwind' speed at the time, with my feet never touching the ground. Then it all stopped. Singing and dancing didn't happen. Lots of tears did though, which was confusing at the time. Thankfully I was able to speak to my GP who described what was happening.

    Please don't suffer on your own with this, if you can speak to somebody it may help. Be kind to yourself, ignore the people who are telling you how you should be, it is a day by day recovery.

    Hope to chat with you soon,

    Lou x

  • OconnormOconnorm Posts: 9

    Thanks so much I've been to doctors she gave me tablets but was nt very sympathetic which made me feel like I was being dramatic but I know I will get there just as all you lovely people on this group x

  • LouiseJLouiseJ Posts: 593 mod

    Hi @Oconnorm ,

    No! She didn't!?! That's horrid. You are definitely not being dramatic. If she isn't very approachable, have you thought about contacting Macmillan's? They would certainly be understanding and be in a position to provide some support where you live.

    And we are here for you too, of course.

    Lou x

  • LouiseJLouiseJ Posts: 593 mod

    @jacksprat_x1

    Hi Jackie,

    Awesome, you got through the night! That's brilliant!

    😊👏

    Lou xx

  • jacksprat_x1jacksprat_x1 Posts: 300 ✭✭✭✭

    @LouiseJ

    Hi Lou, hope you had a good weekend. My family were so pleased for me that I at last stayed asleep all night! Perhaps it’s because I found The Live Better Community? I’m sure it helps!

    I hope you have a good night too!

    Lv Jackie x

  • jacksprat_x1jacksprat_x1 Posts: 300 ✭✭✭✭

    @Oconnorm

    I am sorry that you didn’t feel supported at the Doctor’s.

    You still have an ordeal to face having the Colonoscopy and then of course another major operation. Of course you will be feeling anxious and the Doctor ought to have recognised that. Sometimes I think they try to put the emotional aside and deal with the facts but that doesn’t help you. I think it would be a good idea to contact MacMillan and ask for someone to talk to. The doctor has given you tablets, are they antidepressants? There is no shame in taking those. I had occasion to accept help once. I kept refusing the offer of help as I saw it as a weakness. I finally I accepted them and they helped and I managed to give them up once I had improved. My doctor said you have been carrying lots of boxes and it’s getting heavier and heavier, eventually someone puts another on top and they all collapse. It suddenly made sense. He said if your arm was broken you would accept a caste it is the same. I may be wrong and if I am please don’t take offence. I think I may well be feeling the same as you in a years time when my reversal is undertaken and I hope that I will seek help to speak about my anxiety about the next step too. Be kind to yourself. We are rooting for you.

    Lv Jackie x

  • RobertARobertA Posts: 1,103 ✭✭✭✭✭
    edited March 2019

    Hello again @Oconnorm

    Well, your story is very familiar. I imagine that skipping and dancing are the last things on your mind right now.

    A diagnosis of cancer is really tough and friends and family who have not been there simply don't 'get it' and tend to utter inappropriate, albeit well-meaning, comments. I could give you a list, but I will save that for another time. People just want us to be the same as before but it takes time and a lot of adjusting. That is how I found the Live Better With Community. I needed to talk with people who understood the emotional whirlwind I was experiencing and who would not judge me. I have found that and made good friends too. I am so pleased you are here with us because you can say anything you like and we will listen and understand.

    As Jackie @jacksprat_x1 said, your treatment is not even finished yet and it is disappointing that your doctor did not give you more support. And @LouiseJ Lou is right too, you have been through a tumultuous and horrible time and you will need time to process everything that has happened to you. As we all keep saying, MacMillan are a great option and it might also be worth checking out your local Hospice. My wife is a volunteer worker at Jersey Hospice and they have get togethers, discussion groups and tea and cakes so that might be an option for you.

    By the way, I take Sertraline tablets as prescribed by my Doctor. They are not a 'Happy Pill'. They simply boost the low serotonin levels in my brain and help me to battle anxiety and depression. It did take a couple of weeks before I started to feel better, but they seem to help a little. I also receive complimentary counselling from CancerBackup, an organisation who work with MacMillan here in Jersey. I recently told my doctor that I am OK and don't need the sertraline tablets any more. 'How do you know that?' he asked, pointing out that perhaps they are actually working. Ha ha. I also told my counsellor that I am OK now, but she wants me to keep seeing her once a month for a chat. As a typical bloke, I was very doubtful about the Counselling, Mindfulness etc. but not any more and it is my mission to ask people living with/after cancer to accept any support that is offered. It is not a weakness to accept help. It is a strength to admit that you do not have all the answers and to ask someone to share your burden. Keep in touch.

    Rob x

  • RobertARobertA Posts: 1,103 ✭✭✭✭✭

    Hi @jacksprat_x1 and @LouiseJ

    Good to hear that you are sleeping better and not getting up to post in the middle of the night. My problem is the other way round - I get soo tired due to my treatment, old age or reading too much Live better With. Not sure which!!

    Rob xx

  • 4Gretton4Gretton Posts: 38 ✭✭✭

    @Oconnorm welcome

    I am too am a newbie to these chats and wish I had found them earlier. How wonderful to know that I’m not on my own.(I have wonderfully supportive family and friends but don’t feel they really “get it”.) We take such a battering during this horrible process, both mentally and physically and many is the time we are exhausted either by treatments or lack of sleep that is no surprise we often feel down.

    For me it was a rather circuitous route to all this. After a missed diagnosis of appendicitis, it wasn’t until the rupture of an enlarged gangrenous appendix that I was first on the table and then again a week later when I had emergency surgery for a belly full of blood clots and sepsis. A month in hospital and in a very weakened state when I came out I was still not recovering. I felt the doctors saw me as a bit of a whimp and felt maybe I should be trying harder to recover yet something was wrong-I knew it. They sent me for a colonoscopy. I still remember the doc there saying he wouldn’t find anything-he said there wouldn’t have been 2 different things wrong. Famous last words... he couldn’t get passed sigmoid colon because of tumour. I think that’s when my trust in all the other tests I’d had before really diminished. So tumour removed, chemo booked sent home, readmitted because of my useless bowels and another scan.... oh and look, now we’ve spotted a tumour on your liver to go along with the one in your lung(which In fairness they had mentioned but I was trying to forget) so I had chemo(well most of it. Neuropathy got bad so they stopped it) and liver surgery (belly now looking like an OS map!) but then thank God the lung one had reduced with chemo so they didn’t chop that out(which was a blessed relief as next to main artery) I have to say that I’ve never suffered huge pain due to cancer. My problem has been the treatments. My surgeries have left me with a lot of pain and discomfort.... probably scar tissue and the need to be very proactive with managing bowels (sorry, possibly too much information!) Do any of you guys have problems with scar tissue. To be honest, my surgeons not bothered. I think that in their eyes, they’ve chopped out all the naughties, so what’s to complain about? I’ll be really complaining if they stop my morphine I can tell you ! So that’s me and my story so far. All our stories are different, but we are all able to listen to each other and give support. This weekend I had to have a colonoscopy. The actual procedure doesn’t freak me out too much(what’s not to like about that sedative?) but the moviprep makes me more ill each time I have to have it. The night before was pretty bad and then on top of that was without my pain relief. Going in to hospital feeling so poorly brought back awful memories (I was diagnosed with PTSD after hospitalisation ) but the thing that got me through this time was the support of this group. I felt I had a team standing in my corner and it made a huge difference. So, if anything’s bothering you, get on the forum and share. And it’s always nice to hear good news too.... my colonoscopy was clear!

    Hope I’ve not put you to sleep with my ramblings!!!

    Take care xx

  • jacksprat_x1jacksprat_x1 Posts: 300 ✭✭✭✭

    Hi I’m sooo pleased your colonoscopy showed clear! That’s brilliant news.

    I am so sorry to hear what you have been through. You are amazing to have coped with it all. I’m no surprised you need your pain relief. Hopefully this latest good news will have given you a boost.

    I recovered well from my emergency bowel op and the stoma has been a very good girl and I thank my surgeon for doing a lovely neat job and I no problems with healing. It’s slmost four months now since I had my op and there is absolutely no pain on the stoma side but I am still having a pulling pain the opposite side. I have had a follow up scan after the op requested by my GP as I had a abcess due to perforation and it shows clear. I wonder what does an adhesion feel like? My GP and Consultant still say oh well it’s early days, you had a major op, you had massive inflammation and it takes time. It does hurt if I’m resting or if the area is palpated only when I bend or twist.

    I’ve rested up today having had quite an active few days and my next Bi-weekly Chemo starts again on Friday.

    All the very best to you and your continued recovery. This is the place to vent your worries, we “do get” it here.

    Take care

    lv Jackie x

  • jacksprat_x1jacksprat_x1 Posts: 300 ✭✭✭✭

    Sorry I should have said doesn’t hurt if resting 😂

  • 4Gretton4Gretton Posts: 38 ✭✭✭

    Me again!! I’m so easily distracted from housework!

    When I saw my GP for pain relief I was referred to our local hospice to see the pain relief doctor there (Queenscourt in Southport, near my home) Initially, my heart sank as you can imagine. Hospice!... are you writing me off?!! Apparently it’s not just “end of life”care there (what a phrase!) The doctor there was wonderful and as well as helping me with meds I was assigned a nurse that would come out and visit me regularly and also phone me to check in with me. She really was my guardian angel. She sent me to the hospice for some reflexology and some counselling too. They were all fabulous. Couldn’t recommend them more highly. I wonder whether there is anything like that near you @Oconnorm ?

    Might be worth investigating

    Now where’s that duster?

    xxxxxx

  • LouiseJLouiseJ Posts: 593 mod

    Hi @4Gretton and @jacksprat_x1 ,

    I tried to write a post earlier, but the tech 'gremlins' have been out to play today again! haha

    I just wanted to say, you are amazing, you do know that? Thank you so much for sharing your 'stories'. The description of what you have been through sounds so horrendous, I know there are others too, but I really admire your courage and humour for what you have been through and continue to go through.

    When you mentioned the pain from scar tissue, you caused me to think. I had my mastectomy three years ago now, large parts of my chest, arm pit and arm are numb with no feeling. However I do still get this searing pain that goes along my scar line. I know its not my heart, but it does make me clutch my chest in agony. I wonder if this is caused by the scar tissue? When I mentioned it to my dr's they were not concerned, 'oh yes, that happens, not surprised', but they didn't mention scar tissue. I wonder..

    Don't put me to shame saying the word 'duster', hahaha!!

    This might make you Iaugh, I haven't had a lot of energy lately, so I hoovered with a dustpan and brush this morning, would have been quicker to get the hoover out!! And less bending down! I think my brain has taken a holiday. Hahaha.

    Have a good evening,

    Lou x

  • jacksprat_x1jacksprat_x1 Posts: 300 ✭✭✭✭

    @LouiseJ @RobertA @4Gretton @Oconnorm

    Hi all,

    All this talk about dusters and cleaning floors! It worries me when I’ve spent the day in my PJ’s haha! This tiredness thing is a bugbear isn’t it? Today I realised I just had to give into it. That’s what you get when you stay out to 10.30 at Folk Club. It was fun tho!

    Thank you for your kind comments Rob, Lou and 4Gretton. I am surprised at how many of us have these post surgery pains. It doesn’t end after the wound has healed does it?You poor lady Lou. That sounds awful. I hope you all have a peaceful night.

    Take Care All.

    Lv J x

  • RobertARobertA Posts: 1,103 ✭✭✭✭✭
    edited March 2019

    @4Gretton

    Hi

    I am pretty easily distracted from the housework too. 🧹🧽🧼 Ha ha.

    Wow, you have been through a lot. No wonder you were diagnosed with PTSD. Yes, Hospice are great. My wife is a volunteer at Jersey Hospice and they have some super things going on. Tea and cakes, Group Discussions, Yoga, Craft workshops, counselling - the list goes on. I pop up there myself from time to time as well as doing my own voluntary work with MacMillan.

    It is so obvious from posts in this Community forum , that tiredness, anxiety and depression are as much a part of our condition as the cancer diagnosis itself. It is a pity that the medical people are sometimes not as understanding of this as they might be. A friend of mine was told his cancer was terminal by phone!! I am a bit of a campaigner in this area and talk to medical practices asking them at the very least to put MacMillan Cancer Support leaflets in prominent positions in their surgeries.

    Rob x

  • LesleyLesley Posts: 155 ✭✭✭

    Hi everyone! Lesley here, I'm suffering from bowel cancer too, just finished fourth round of chemo, not been good, every side effect going I had! I know has to be done,but my goodness it's brutal ! Seeing oncologist Monday morning for results of M R I and Ct scans to see what happens next ! Hopefully surgery, don't think I can stand anymore chemo at the mo! Will keep you posted xx

  • SunshinedaffSunshinedaff Posts: 1,252 ✭✭✭✭✭

    @Lesley

    And she's back!! Hooray!!

    Lesley, we have missed you here. This is me welcoming you back! 😊

    I know you have had a really tough time, we have been thinking of you lots. Keep looking forwards, hang in there.

    💐 🍰 , sorry its not the real thing...one day!

    ❤️

    Lou x

  • RobertARobertA Posts: 1,103 ✭✭✭✭✭

    @Lesley

    Hi Lesley there.

    Lovely to have you back posting again.

    You have come so far and we are with you all the way. 👍

    Rob xx

  • LesleyLesley Posts: 155 ✭✭✭

    👍xx Watching Pompey on the box at mo, Self medicating with a couple of glasses of Chardonnay seeing free of chemo at the mo! Good to be back! Xx

  • jacksprat_x1jacksprat_x1 Posts: 300 ✭✭✭✭

    @Lesley

    Hi Lesley,

    I am sorry that your latest chemo has been so horrible for you. Has it got worse every time?

    I’m on Oxaliplatin and Folfox for Stage 3 bowel cancer, which perforated the bowel, which caused an abcess. I had an emergency operation on 15 Dec 2018. They removed part of sigmoid colon with tumour and found it in just one lymph node so I am having a modified form of chemo to be a little gentler and kind on my not too good kidneys. Having said that my kidney function has markedly improved as the Tumour had been pressing on the tubes leading from the kidneys suppressing the drainage and latest scan shows they have recovered. They were operating at 41% and are now at 56% so I pleased with that. I had to have a colostomy which they is temporary but I can honestly say is no problem at all.

    I had my second round of chemo yesterday and had several side effects, which fortunately subsided with the help of a new single bed electric blanket and fleece blanket on top of me and hot water bottle. I had it laying on the sofa then took it bed. I recommend that if anyone had the same problem with clenching muscles in feet, calves and thighs. Water bottle wrapped up and placed on neck for spasms in tongue and throat. Also every time I eat the first bite sends a shock through the jaw! What on earth? Apparently it doesn’t like the cold Oxaliplatin. I am much better today unless I forget not to touch anything cold or metal! Shooting pains in fingers like electric shock. Pins and needles and muscle spasms.

    I’ve been lucky not to be sick yet. Taking preventative meds as advised.

    I hope that you soon recover and that the side effects are not too long lasting. When did you have your diagnosis Lesley? I see that you are having the chemo first to shrink the tumour. I bet you can’t wait to get it operated on and out. Good luck on Monday with the Oncologist. i will be thinking of you.

    Take it easy Lesley and I hope you have a restful weekend.

    King regards

    Lv Jackie x

  • LesleyLesley Posts: 155 ✭✭✭

    Hello Lou, Rob and Jackie! Lovely to be back with you all!

    Yes Jackie sounds like we are on the same chemo I'm on Capox, Oxaliplatin (that's the nasty one) and Capecitabine, have suffered all those side effects, cramps in muscles ! I was actually walking like robo cop! Then the cold got to my eyes couldn't blink and mouth went into a rosebud spasm! Not a good look! Nearly choked to death when I had a drink of cold water! Forgot I wasn't allowed! That was the worse,so i drank Apple juice with warm water,not really my drink of choice but thats all i could manage! Oh and piccalilli to stop the sickness! I did feel worse with each chemo but everyone is different, fingers crossed you will cope better than me.

    Well have to go now the loo is calling! Again!😐 speak to you soon xx

    Oh I was diagnosed in October last year two weeks after moving to our new house in Lincoln from Portsmouth! Typical!

  • LesleyLesley Posts: 155 ✭✭✭

    Oh yes! The pain in the jaw was excruciating!😖

  • jacksprat_x1jacksprat_x1 Posts: 300 ✭✭✭✭

    Oo that eye one sounds nasty! I haven’t heard of the Piccalily for sickness.

    I’m on Oxaliplatin and Flouracil.

    Did the side effects last for just a few days? Has it affected your hair? I know everyone is a bit different. It’s all a bit weird isn’t it?

    So sorry the timing was so bad having just moved. Just when you need a lot of energy!

    How did Pompey do?

    Tske care Lesley, have a good day if you can tomorrow.

    Lv Jackie x

  • jacksprat_x1jacksprat_x1 Posts: 300 ✭✭✭✭

    Oo that eye one sounds nasty! I haven’t heard of the Piccalily for sickness.

    I’m on Oxaliplatin and Flouracil.

    Did the side effects last for just a few days? Has it affected your hair? I know everyone is a bit different. It’s all a bit weird isn’t it?

    So sorry the timing was so bad having just moved. Just when you need a lot of energy!

    How did Pompey do?

    Tske care Lesley, have a good day if you can tomorrow.

    Lv Jackie x

  • SunshinedaffSunshinedaff Posts: 1,252 ✭✭✭✭✭

    @Lesley , and @jacksprat_x1 ,

    Lovely ladies, and whoever is having to endure the chemo you have, you all deserve medals of the highest order! It really does sound like such a dreadful chemo to have to take.

    A massive round of applause to you all...you are superstars.

    Lou xx

  • LesleyLesley Posts: 155 ✭✭✭

    Hi Jackie, Pompey lost!(Sigh!)

    The side effects lasted for me about a week to ten days,I do suffer from fibromyalgia have done for 12 years it does seem to intensify things so hopefully you will fair better. Piccalily! Ah! Well ! Thats just me! Weird taste im afraid , and lots of marmite on toast! Yes im strange! but did loose my taste only for a while thank goodness! Love food and drink! I'm a taurean! Governed but my stomach!😋

  • LesleyLesley Posts: 155 ✭✭✭

    Oh ! My hair has only slightly thinned doesn't really notice, texture has changed a bit , so not a lot of difference so I can't complain 🙂

  • jacksprat_x1jacksprat_x1 Posts: 300 ✭✭✭✭

    @Lesley

    Lesley that’s bad luck Pompey and having Fybromyalgia to cope with as well. Piccalily I’m glad it’s just you haha 😂

    I’m the same with food and feeding people up being a Cancerian (ironic).

    I’m missing my Bombay Safire at the moment but will soon be able to have it again. Just a bit wary at the moment.

    Catch up with you soon x

  • LesleyLesley Posts: 155 ✭✭✭

    Will do!👍xx

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