I’m early days into all this finished treatment in Sept 2023 for stage 2 cervical cancer. I had 28 external radiation, 3 rounds of Chemo (too sick for any more) and 3 x Brachytherapy. I’m 47 and although terribly sick I got through treatment like everyone. I am now waiting on pelvic assessment for diagnosis of PRD. I have very little control of my bowels bladder also but not as bad. I eat food and almost immediately need to go to the bathroom. Can’t eat food with any type of sauce. Low energy and quite honestly very Low mood I’m on Sertraline but I don’t feel like it’s doing much. I have anxiety about leaving the house. Some days I’m just fine and I see a glimpse of my old self but I have days of total sadness and some days that I am quite angry at the world. Anyone else feel this all over the place? I’m a really positive person but I’m struggling to maintain myself at the minute. Appreciate any advice or even anyone just to tell me that they felt like this too.
Thanks Everyone especially for reading all of that.
🫶🏼
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Sunflower1976
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Hi sunflower, I was your age when I went through my treatment. I didn't react to the chemo with sickness but had to stop after 5 sessions due to developing tinnitus. My bowel problems started during treatment and waterworks just got worse as time went on. Now having said that, I believe the amount of radiation given now is much more targeted so as to minimise the damage to bowels and bladder. So firstly bladder. You must use the dilator, very important for encouraging your bits to get back into their right places and helping muscles etc to get back to doing their job. Also pelvic floor exercises. Sorry, I know it's probably the last thing you want to be thinking about. But again they are muscles that need exercising to help with flow control for both bowels and bladder. Things to chase your health professionals on... Ask to talk to a dietitian; get some blood tests to see if you might need iron tablets; take lopromide for the diarrhea, everyday. I've taken it every day for years. It helps but it's not a cure. Get yourself a survival bag that contains a radar key so you can use disabled loos. I have wipes, creams, change of clothes, tena pants etc. In my very large handbag. NOTHING must stop you going out. Your mental health needs fresh air. Even if it's 5mins up the road and back. I've messed myself in public several times and am now a pro in dealing with the carnage. The more we talk about this the less embarrassing it becomes. I've also bought some incontinence knickers which I wear over my tena pants and currently I've not leaked. Even though I was stuck in a traffic jam a few weeks ago, no chance of getting to a services, I just had to let it go. When I finally got to a services I had to stand in a queue. It was awful as I'm sure I stank but everyone was so nice as we waited. No leakage on my jeans! We've got to live. We've got through cancer. My bladder doesn't work properly now so I use disposable catherters. But a pelvic floor physio really helped me cope until the bladder gave up in 2023. I'm 68 now. I teach dance and seated aerobics to mature people and do pilates, dance classes and all with my below bits well padded and my bag packed for an emergency. Get well, little steps and hopefully with the help of friends and health professionals you'll be out and about soon. Big hugs. Xx
Ohhh My Ohh My you’ve brought tears to my eyes bless you! I have the emergency kit in my handbag but not quite well as stocked as yours so will be updating that ASAP!
My bowel problems also started during treatment. I use my dilators 3 times a week and started them 2 weeks after my Brachy finished. So all good with them.
Ohhh how I’d love to dance that sounds so wonderful what you do.
Thank you for taking the time to write to me it means so very much to me. Your message was wonderful and o sincerely appreciate it.
Sunflower, I think you are describing what many of us have gone through. The word "cancer" changes our lives in so many ways. I too yearn for the old "me" and the loss is so very sad. The lack of energy is terrible, because everything seems to be just too much trouble, including going out of the house. Some days I just want to stay in bed and have everyone leave me alone!
Have you seen a counselor or gone to a support group? I went to a couple of different groups but could not stand the whining....I wanted ideas of how to go on. But I did meet someone there who has become my dearest friend. And at 78, it's not easy to find new friends! I went to a cancer counselor and she was good, but she left her job. I also see a pain psychiatrist but not often and she prescribed Cymbalta which is for pain and depression. It does not seem to do much for either yet I keep taking it!
Bladder and bowel loss of control make me angry, but I should have known because of the kind of surgery I had. Have you used Imodium?...my doctors have told me that a couple of them a day would not hurt me, so I usually do, but accidents happen and I get so "down" and angry then.
The only thing I can advise, and it is trite, but just keep putting one foot in front of the other and don't lose hope. See a counselor. Ask your hospital/doctor to recommend someone. And best wishes. Come back here often.
I think you are sooo right cancer does change everything! I have seen 2 different councillors but like you not for me. I completely get the stay in bed and close the curtains on the world in fact I’m a fan of this currently. I take Imodium daily and it does help . I wanted to be the positive person that gets through this and comes out stronger I think that’s were I’m struggling the most…
Also like you I have met a wonderful friend while going through Brachytherapy a great support it’s wonderful to have someone that been through exactly what you’ve been through. Thank you so very much for taking the time to respond I sincerely appreciate it. I wish you continued good health
I am so sorry to hear you are feeling this way and I can relate to it. There is lots of support out there and it does get easier.
I didn’t go out for a long time but you get better at planning. In addition to what the others have suggested, ask for a referral to Occupational Therapy. This was another fantastic service for me. They helped me plan for going out and it got easier. I use immodium and tend not to eat when I go out and I am comfortable with this.
I have also recently completed a six week course called Cancer Coach. It was an amazing support. There was one facilitator and 7 ladies from across the country with different issues. It was on line once a week and I can not tell you how much it helped me mentally. They send you a workbook and work on a different thing each week. It is ran by Cancer Support UK.
How lovely of you to take the time to respond Thank you for your kind words. I will for sure ask about occupational therapy.
My Goodness the cancer coach sounds like it has really helped you that’s fantastic .
I will get there it’s just tough at the moment. I am soo lucky to be surrounded by the most amazing family & friends but it’s still lonely sometimes right!!
It’s sooo good to talk to people who can genuinely relate and understand what this actually feels like. I’m very glad to have found this forum everyone has been so lovely and helpful and it’s great to read so many people are far ahead of me and are still cancer free. That gives me so much hope.
Thank you again for taking the time to write to me it really does mean so much.
I had pelvic radiotherapy, with adjuvant chemotherapy, 20 years ago, when I was 50. I was very badly burned and on morphine for several months. After I recovered from that, I thought I would finally get my life back. Then the long term after-effects (PRD) kicked in and I realised I was *never* going to return to my old life. I then went through low mood, anger, and all the stages of grief associated with any great loss. I spiralled down into severe agitated depression and spent a month in one of the Priory Hospitals (I was extremely fortunate that my Mum had the funds to pay for that). It took me another year after leaving the hospital to finally emerge from the depression completely.
I have been on Sertraline ever since - even though I don't feel depressed - because my psychiatrist said that, without medication, there was an 80% chance of a relapse after a major depressive illness. You don't say when you started on the Sertraline. It does take a while to kick in but, if you are still not feeling better after several months, don't hesitate to ask your GP to increase your dose, or switch you to a different SSRI.
As someone else has said, I find that being really open about my incontinence problems has helped me to stop feeling embarrassed and ashamed. I wear period pants every day and carry an emergency pair plus clean up kit in my handbag. I now feel absolutely fine about leaving the house, except for the days when I'm running to the loo every few minutes. This morning I was helping with the little kids' group at church. Halfway through I started passing a lot of very smelly wind. I felt mortified but then realised that none of the kids had noticed and, if they had, all I needed to do was explain I'd had an operation which meant I couldn't control it. They'd all have ended up falling about laughing at the Granny who can't stop farting, just like my grandsons do! In the past few years I've had 'accidents' in a shop, library, hospital, and the middle of a park - miles from a loo. I've had to flash my PRDA 'just can't wait card' in Aldi (lovely response) and at a large railway station (foul one). Each time I grow a little bit more confident that I *can* deal with this, whatever the circumstances, and that most people don't notice a thing.
I do hope that your low mood and anxiety will start to lift soon. Each of us has to work through the losses and radical life changes in our own way - and coming to a place of acceptance takes time. But it is possible to live a satisfying life with PRD, as I and others in this group do. I hope that you, too, in years to come, will be able to say the same thing. Sending virtual hugs your way. XX
Oh My have you been through it and are sounding like you’re still there giving back to the world.
That was an a mazing message you sent me and I can’t thank you enough for helping like everyone else to “normalise” what we are all going through.
I have been on Sertraline for about 9 months I am also on HRT diazepam and propranolol. The menopause side of things is a whole other story 😬
Thanks to you all on here I now have my emergency kit packed and in my handbag for emergencies so that should help with the anxiety about having accidents while out.
Thank you again for you message you sound so brave and you sound strong which is great to hear from someone that’s been though so much. Definitely gives me hope!
I am sending you back a Big virtual Hug and I wish you continued strength and health.
I'm almost 4 years out from the same treatment as you, it was during COVID so not a lot of after care. I'm still waiting on a referral to a late effects clinic which I hope will help a bit. I've just hit the depression about not being me anymore and I'm talking to a mental health nurse which is helping. I've mostly learnt what I can and can't eat (no fibre) but I still get caught out and have an accident now and again. Loperamide helps if I know I'm going out and I research toilet access when I'm going new places. Some things I don't do if I won't be able to get to a toilet.c
Life goes on and things get easier (a bit) and I still get to enjoy life I'm just a different me now which I'm struggling with but we'll get there. Spend time with friends and do things you enjoy, it just takes a bit more planning. I hope you feel better soon. At least we're still here which everyone keeps telling me.
First off FOUR years out congratulations on getting there. It’s not easy for sure and it does change everything about you but I was thinking the other day I have been saying “I don’t feel like me anymore, My body doesn’t feel like it’s mine” so I’ve decided I leant my body to cancer while I went through treatment but it’s mine and I’m claiming it back now (can you tell I’m having a good day today lol) yes we are left with awful side effects but as you say learning what you can eat and with a bit of research and planning we can get out and do some “normal” things. I made it out for breakfast this morning with family and friends 🙌🏼
I find eating a little a lot has helped me no more big meals kids portions help 😃 We are still here and I never want something like this to get the better of me. Yes I have some bad and some very dark days but on days like today when I see just a fraction of my old self it gives me hope.
Thank you for taking the time to write such a lovely message.
I love this forum as I feel everyone on here actually gets it!! Yes it’s great to chat to your family and friends but it’s just impossible for them to actually know what going through this everyday is really like.
I wish you continued good health Corey keep fighting that fight we are still in there.
Thank you for your lovely message. I managed to get out of the house yesterday with the help of all the lovely people on here and all the great advice.
I Packed my emergency kit in my handbag and I met some friends and family. Yesterday was a really good day so I’m grateful for that!
Thank you for taking the time to respond it means a lot to me.
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