I was due to start week 5 today but I’ve told the hospital I don’t want any more. They’ve tried to persuade me but I’m done. I can’t handle the pain, I know it’s only a week and a half but I don’t even know how I can make it to the end of the week at the moment. The pain is horrendous, it’s so bad that I’m nearly sick. The creams aren’t doing much. I’m just completely over it. They can’t do anything until I can have a scan which is minimum of 6 weeks, so I guess that’s that. Fingers crossed most or all of the tumour is gone….if it hasn’t then that’s life I guess
I am so very sorry you have reached this point. This is obviously something you have made your mind up about and I wouldn't try to persuade you otherwise. I hope that the team treating you will give you lots of pain meds to cope and that, moving forward, they work out a positive plan for you.
In the meantime, know that the support is always here for you. I am thinking of you.
Hello C14r3 I am so sorry to hear about the pain you are in and it seems to me that your treating team are not getting your pain meds in sufficient amounts to help ease the immense discomfort you are having right now. You are so near to the end and I strongly advise you against giving up now. As Irene has said it is down to you whether you continue or not and we are here for you but feel your team should not let you down Have they offered morphine? Do they have a pain management nurse? I know it can be extremely painful but with the right support with meds and compassion from your team it can help you along the way. When you are suffering pain you start being erratic, emotional and it encompasses all your feelings into downright panic. One thing I can say it’s not FOREVER! I think completing the course gives the cancer less chance of spreading and life is so precious and you deserve a chance. The pain can cause depression and you can make decisions that you would not normally do. I wish you the best and hope you find a way to get through this.
I’ve been on morphine for months, I’ve been given oxycodone in a pill and liquid form and it hasn’t helped. I’ve just been to the toilet and I nearly passed out from the pain, I’m laying on my bed shaking, there was blood everywhere, the sitz bath helps a bit but I can’t bare it anymore x
Hi Cl4r3 ,
I’m so very sorry you’re in so much pain right now. I won’t repeat what’s already been said in the other replies that you’ve received but I would too strongly advise trying to complete your treatment even if it means taking a few days break before continuing. Pain medication is one of those things where one size doesn’t fit all, you say you’ve been taking morphine for months, your body has probably built up some resistance to its desired effect over time & it may not be working as efficiently as it once did, to be honest the twice I was prescribed morphine I had very little relief from it! If you haven’t done so already please ask for a review of your pain medication. Are you taking stool softeners to combat the effects of the morphine where going to the loo is concerned? it’s imperative that you do as all opiate based pain relief will slow down you whole system & that includes your bowel making it more difficult to have a bowel movement. It’s also important try to stay ahead of your pain so don’t just take the painkillers when the pain gets bad take them as regularly as is safely advised so that the level is constant in your system.
I really hope that you find some way of continuing to the end of your treatment as it’s your best chance of being rid of this awful disease but I understand that it’s a very personal decision, just know we’re here to support you whatever you decide.
Hello Cl4rc I don’t disagree you are in a lot of pain and believe me a lot of us here know what it feels like and can fully empathise with you. Some are lucky and escape with not too much pain. When I was on morphine I at first didn’t take a stool softener as I was previously going to the toilet too much. Then the morphine did affect my stools and remember the pain and the splitting which produced a lot of blood. I literally had my husband holding my hand whilst sitting on the loo screaming and had developed a very painful fissure. As Nicola said the all important stool softeners should be used and that made a massive difference. You still get discomfort but I used the sitz bath every time. Morphine is not given lightly, well it wasn’t in my hospital and closely monitored and it’s not going to take all the pain away. I took morphine starting at a pretty much low dose and did what Nicola suggested by also taking paracetamol and ibuprofen alternately two hourly so you always had that gap of four hours between each tablet. I don’t think we have that magic pill that will eliminate the pain we get from treatment and yes over time painkillers probably lose their impact but still think you should insist on seeing someone about controlling the pain better as much as possible and checking whether you have developed a fissure which are extremely painful with all the nerve endings that are in situ it’s not surprising. I do fully respect your decision but feel your calling for help which we so much want to give. Do you have someone close who can support you in this very distressing time. I worked in mental health for many years and know the importance of support from those around you and wish our help was just not virtual and we could hold your hand and help you through this.
Thanks for your replies. Yes I’ve spoken to friends and family. My mum has just finished 7 months of chemo for bowel cancer, and I really wanted to complete this for her as I don’t want to let her down. Mum didn’t have radiotherapy and said that she’s not experienced the pain I have so it is my decision. I expected the pain to be bad but not this bad.
initially I didn’t want the treatment, I opted in because of my family, I was happy to take pain relief and just let it do it’s thing. I begged for an op but my oncologist refused. I wouldn’t of minded a stoma for life at all. I just don’t know what steps are next now
Oh, Cl4r3, my heart is breaking for you!
I get it. I really do. At your point in the process I could take no joy in being 'almost done' because another week and a half of it just seemed like a tsunamii of pain that I couldn't bear. I couldn't face that whole situation again if I get a recurrence.
I'm baffled that your team isn't turning itself inside out to find pain meds that work a bit better for you. Nothing will help the on-the-loo torture sessions, but even at its worst, the Oxycodone took the edge off for me and let me rest a little inbetween bouts of awfulness, even when it wasn't actually taking the pain away. And your NHS people seem so much more on the ball than ours in the States.
You get to pick. I always kept that dangling in front of me when I wasn't sure I could go on.
But do sit down with them when you get the scan and formulate a plan going forward. Tbey probably got it all, and that's the best case, but it's also good to have a vision of the future going forward so you're not blindsided like the diagnosis is for most of us.
Sending you strength
Cl4r3 - my heart goes out to you and the awful time you are having. We are all different and suffer to differing degrees but your experience is not a good one. You've heard lots of advice and mine is just that you don't fully commit to any decision but take your time to mull it all over in the next few days - and don't feel bad about any change of heart you may have. It is THE most stressful time and very hard to make decisions when you are so low. Be kind to yourself now and rest.
Hugs, Carole x
I have a huge decision to make tomorrow (Thursday) to continue or not, I’ve been told if I don’t restart by Monday they can’t do it at all. My meds have been upped I’m now on 3 oxycodone morning and night, gapapentin 3 times a day as well as the oxycodone in liquid form to take as and when I need it. So far it hasn’t done anything except make me tired.
From what I’ve gathered if I decline any more treatment they will do a scan as early as they can but will probably be a minimum of 6 weeks to see what the tumour is like….worst case would then be a pelvic exenteration, doesn’t sound fun and recovery is long (6-8weeks)