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  1. Hi everyone, I am about 2 years out of treatment for stage 3 AC . And although the treatment was successful, to which i am truly thankful, I have had a really rubbish 2 years since then.and I am feeling so low .Firstly, after my treatment finished i developed sepsis, then i had open surgery n my abdomen to fix an umbilical hernia which was in danger of becoming strangulated, then there was an infection inside, then I had 2 operations on my finger to release the tendons. In between all this I returned back to work ( April this year), i had my usual 3mth appointments with my oncologist and colorectal surgeon and because I was still bleeding I had to have a sigmoidoscopy to which they found 3 polyps. They would apparently usually remove them there and then but because I'm on blood thinners they couldn't. I have been having terrible ongoing hip pain ( well all over but mainly hips ) braingognd fatigue. Apart from this I still bleed when i go to the loo and its so painful..it feels like i am passing a massive no.2 when its in fact tiny! I am struggling with my mental health, i am a very private person when it comes to anything like "trumping" ( was the way i was brought up), in the last 6 months or so I cannot stop myself and although my husband is fine , i am mortified! This more recently as i have been passing mucus too( and it smells awful )  I am having to wear pads as i had 2 " accidents" whilst out ( luckily i was alone ). I told my consultant what has been happening and i was sent for a colonoscopy and polypectomy last month. I had the results Monday just gone. It was reassuring news. 1 of the 3 was pre cancerous but under the level of needing further treatment. It did show i have radiation proctitus and haemorrhoids. After the dreaded examination my consultant mentioned radiotherapy had damaged my sphincter muscle, he said  my Gp should to refer to gynyurology.  Again i am happy that all is good in terms of cancer  but i am just so down about what i am left with ....i feel old, always in pain, always absolutely knackered, i get anxious about going out incase i have an "accident". I have totally lost my sparkle ....i used to be the life and soul of the party ..now i just want to curl up in the corner on my own. I spoke with my Gp and i mentioned PRD as I had seen some information on it. He was quite dismissive and said I'd been referred for a lot of things already so wouldn't do it.

He has diagnosed me with fybromyalgia but that doesn't really help!  I do not have any support from family or friends anymore. Their view is that it's been 2 years! Get on with your life ! I would love to do just that but I don't feel I have a life anymore ...I'm just here,  plodding on, saying I'm fine, I sometimes at night time wide awake crying, I want the "old me" back, the fun loving gal who would dirty dance at party's and get everyone having fun...I just think she's gone forever.  I get so angry with myself because I should be happy and pulling myself together.  I am one of the lucky ones.....

I am sorry this message is so long and full of self pity  but I needed to get it off my chest.. 

Thank you so much x

  1. L x
  • Hi Trv22

    I'm so sorry you are going through all this. You are entitled to feel sorry for yourself i do sometimes. My hospital has a cancer charity attached to it which offers counselling and support groups. Maybe yours does or if not there might be a charity in the area that offers something. Then you could get regular on going support. The old you is still in there. Sending hugs. Xx

  • Oh Trv22, reading your post was really sad. Personally I think you have plain horrible depression after all the setbacks you have had to deal with these past few years. Sadly and truthfully when you are depressed and miserable others around you cannot always deal with it and it makes them feel uncomfortable. I worked in mental health for many years and those suffering with depression become very self absorbed unable to break the habit of feeling miserable and it becomes a viscous circle. You need to see if you would benefit some counselling and a supportive doctor who can deal with the problems you are having with the bleeding. Damage to the sphincter is only too common after AC treatment and I also have some damage and have to manage my diet so as to prevent loose bowels which can affect your daily life. I always carry Imodium with me just in case. I am over three years post treatment and have accepted this is a way of life. I believe the mucus is caused by an upset gut lining which could be diet inflicted but if it smells then get down to your doctor and find out why. With all these radiotherapy fallouts it my be an idea to write down on paper numbering each one and going through your list and look at what positive things you can do to improve on through outside help e.g. doctors, counselling, medicine etc. Wearing pads, so what! If you need to wear them whilst you try and solve the problem I would not worry. With the trumping as you call it, no one died hearing a Trump! So what! This is food related or weakness of the sphincter muscles. Your local hospital may do self referral for pelvic floor advice and training to strengthen this area, my hospital did. As Bungle1 says, look to see if your hospital offers after cancer help like Maggies. I’m not going to say everything will be fine as it’s a journey you have to take to heal yourself inside and out and you can do one step at a time. You come on here and moan all you like as we are hear to listen to the good, bad and ugly things about life. One thing I would do is try and avoid moaning to your friends as they are not had to experience what you have had to go through and we can’t expect them to really understand what it can be like. Once you start to feel you are coping better you can be a bit more welcoming towards them and will be able to become your friends again. Do be extra kind to yourself and remember you are a survivor of this horrible disease and have a future if not a slightly challenging one but you can start fighting for it NOW!

    Julie

  • Thank you for your kindness and advice.. Slight smile

  • Thank you for you advice and tips..Thumbsup

  • Hi  ,

    It sounds as though you’ve really been through & are still going through the mill, I’m so sorry for this. 

    Although thankfully I haven’t suffered long term bowel disruptions after my treatment, it’s definitely changed my digestive system, there are certain foods I can only have in moderation now or my tummy isn’t happy & I’ve also got hip, lower back & sciatic issues. I’ve been given an intensive physiotherapy program for these issues, sometimes they help other times not so much & I very rarely get through a day without taking pain relief. Unfortunately this seems to be part of the legacy of this treatment. 

    From reading your post I think it’s important for you to try & access some counselling. If you’ve any local cancer charities or a Maggies Centre close to you these should offer counselling services without going through your GP, if not then visit your GP or contact your treating team, explain how your mental health is suffering & ask if you can be referred, there are cancer specific counsellors out there too! 

    You sound lost at the moment but the old you is still there you just need a bit of help finding her again. 

    Nicola 

  • Hello Trv22

    Please don't apologise - the forum is here for all of us regardless of the subject matter and you have hight-lighted some really important issues that some people have after cancer treatment.  I am so sorry you are having such a hard time and that your doctor was dismissive of PRD which many people suffer from after radiotherapy.  And to be diagnosed with fybromyalgia on top of anything else must be a blow too.  

    I would agree with visiting a Maggie's Centre if you have one nearby, but if not there are several organisations, (MacMillan being one) that offer a phone service.  You need a really sensitive, non-judgemental ear to hear you out and help give you some relief.  I understand what you mean about friends, too.  I have a very good friend and when I was telling to her about my woes, she replied well you are here aren't you, and that shut me up sharpish.  I know she really cares about me but she just didn't understand about all the issues I have.  So I have learned the hard way to choose my audience carefully.

    And my lovely GP put me on anti-depressants shortly after I was diagnosed, they didn't make me dopey at all but went some way to still the chattering voices in my head and softened my feelings enough so that I could cope.  It is something you could consider, there is no shame in having medication if you have clinical depression.

    And can you speak to a more sympathetic GP at the practise?  Some doctors have bypassed the bedside manner element of their training.

    Sending a big hug

    Irene xx

      

  • Hi L , 

    1. I can so relate to your post … The past 2 years have not been very kind to me .. turned me from an ageing rock chick to an ageing wreck !!! … this weekend the intestine pain , the mucus , the anxiety, the feelings of inadequacy have all surfaced big time … couldn’t look after my grandson , couldn’t enjoy a night out with my partner ….. what has happened to that confident , fun loving girl !! ? Well she is still there but for the moment , she is finding her way back …. A new start ( house sold ) a more refined rock chick , more jazz than punk , and hopefully the fun will return , adapting to the pain , the pads and the simple diet !!!
      you are not alone , come on here and join the gang …. !!!
    2. take care
    3. Chrissie xx