Recovery after CRS/HIPEC

Hello

I had CRS/HIPEC at Basingstoke in Sept 2020. 12 hour surgery with huge number of organs etc removed. Hd a rough ride with sepsis etc and spent a month in hospital. Now been home a month. I had colorectal cancer and he my stoma re sited to left from right and also had large hernia repair and temporary stent fitted following removal of tumour on ureter. I found the recovery in hospital tough and had psychotic episode in ICU which was terrifying (never had anything like this in past) and although reassured by staff that this happens as result pain relief etc it’s still in my head.


I’m struggling! Pain sneaks up on me most days, I’m tired and get weepy at night time especially. I read of people returning to work after 6 weeks! I’m nowhere near this point and would really love to hear of others journey to recovery with any tips or tools. love to hear from others.

thanks

  • Take absolutely no notice of the return to work stories, everyone is different and you’ve been through a massive amount and these things take time.  RE your psychotic episode I had the same and although terrifying at the time and for a good while afterwards they completely expect it and to the docs it’s just part and parcel of they meds and trauma you are going through.  Talking about it helps I found in my experience and working through it, maybe talking therapy if things are still bothering you?  RE the pain , it’s still super early and I remember being in pain for a good 8 mnths before I started to feel a bit more like my old self .  I will say hang on in there it does get better and you will start to be able to manage things.  Write down how you are feeling every day then read it back a week later and you will be amazed by how far you’ve come.  Be kind to yourself it will get easier xx 

  • Flowery thanks for this. Just posting here and getting a reply makes me feel less isolated. My husband keeps encouraging me to look at progress and keeping some sort of note/diary is a great idea. I’ve been measuring my walking progress by telegraph poles! I think the thing about talking about things is so true but constrained by Covid.... somehow I just don’t want to discuss with friends or family how I’m feeling over the phone or by zoom. I had a zoom call a few nights ago and a dear friend asked, immediately at the outset, “How are you physically and mentally?” My internal response was “ I can’t begin to tell” but answered with a few trite assurances that bore no truth really. 

    I’m sorry to hear you too had an episode in ICU but good to hear it fades with time.

    Thanks too re pain - I am longing to feel like my old self but creating a vision for that seems a way a way. Thanks so much for answering me - 

  • Aww sweetie you are not alone in this and I have took a lot of comfort from finding the support groups on social media and this forum.  There are lots of us around considering that this is a rare disease and lots of help and advice from people who have been there.  I felt it a lot easier to talk to others who have been through it rather as you feel like a burden sometime to friends and family and they don’t always understand how tough it is.  You are still early days into your recovery but in a few months time you will feel so much more differently to how you do now.  These things take time and you can’t rush it.  Baby steps! You’ll get there x 

  • I'm with , take no notice of other people's return to work stories - they aren't you. Your surgery and your recovery are just that, yours. The medication side effects are tough and it's not unusual to still worry about it afterwards. You're doing better than me, I couldn't take about my hallucinations for several years afterwards.

    My friends instituted on the bed coffee mornings. I sat in bed and we talked until they could see that I'd had enough or they kept talking and I dozed off. The lack of routine to the days was difficult for me so I made myself get up for breakfast, even if I went back to bed for the infamous coffee morning. Having a shower was exhausting for months afterwards.

    The other really difficult thing about coming home is you lose the security blanket of healthcare professionals metres and seconds away. You question every little twinge and pain. This is perfectly normal, it's more worrying not to feel like this. If you are still really concerned, give one of the specialist nurse team a call. You'll probably have to leave a message but they're really good at calling back.

    Big hugs xxx


    Angela 
    Pseudomyxoma peritonei survivor
    Trustee
    Pseudomyxoma Survivor

  • Thanks Flowery and Angela... kind and wise words. It’s hard to express or even talk about how tough it is so communicating with people who know is massively comforting. I find getting up and showering, sorting my stoma, making bed and breakfast and I’m fit for nothing. All I want to do is go back to bed. I feel as though I must be exaggerating but I get bouts of real pain and am exhausted most of the time.
    thanks so much for responding and open to any tips physical or psychological x