Sorry to go on. I have had 2 CT scans since February 2021 for bowel obstructions. The scans have been checked and my dietician read this line to me; “patient has a lot of adhesions and has pelvic radiation disease rather than an occurrence”. I know I should be elated to some degree, but I am scared they may have missed something.
I have a bad back. However I had a radiation burn in the spot. I have a fistula down below and I leak constantly but sometimes there is a bit of blood. Both CT scans were on my abdominal and pelvic area and all they picked up were the adhesions/scar tissue.
I have insomnia and I get tired but I don’t think about the insomnia, instead I worry about feeling tired.
I tried speaking to a psychiatrist but I didn’t find it any help.
Am I being silly?
Sending you all love and good vibes xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
I see from your back story that you’ve had quite a rough time with a number of problems as a result of your cancer treatment. My post treatment problems are not the same as yours but my medical team tell me I’ve been pretty unlucky. I would have thought I’d have put the cancer thing behind me by now; but I think it’s difficult when one has had a run of long term side effects because they’re an ongoing reminder of our diagnosis. Tbh I don’t know what to say to help how you’re feeling but it’s not silly and you’re not alone.
I’ve met a number of ladies who’ve been through cervical cancer treatment and it seems to be those who haven’t had much in the way of long term side effects who have an easier time moving on.
Do you know about the Pelvic Radiation Disease Association (PDRA)? If not their website www.prda.org.uk is worth a visit Also they have a forum on Healthunlocked.com
I feel mentally worse now than I did when I was going through treatment and operations. I hardly gave it a thought but now I feel constantly on edge, I don’t trust what I have been told and I feel like I am having a breakdown of some sort.
I read somewhere that we no longer trust ourselves or our bodies! Oh boy, isn’t that true. I had a few chats with a psychiatrist but that didn’t help. All she wanted to do is go over my childhood (which isn’t the problem) and she told me that I will always have this fear! I don’t want this fear, I want the fear, untrust all gone and to have some semblance of normality.
I understand us ladies all had different experiences regarding cervical cancer. And some get through it okay and there are others who struggle and get problems such PRD and all that entails. I agree with you, it is another reminder.
I am also feeling very stressed at the moment as I had another bowel obstruction about 6 weeks ago and the doctor told me I have radiation enteritis and he frightened me so much. I have changed consultants now. Plus our next door neighbours are constantly making loud noise and we can’t sit outside in our lovely garden. Instead we have to sit inside our home, with all the doors and windows closed. We can’t have visitors and we can’t enjoy the weather or our garden. We have spoken to our council who have taken up our case.
Thank you for your kindness and I hope you are enjoying the weather.
Just realised I mentioned about prda to you before. Sorry to repeat myself - I’m still finding my way through the new forum format lol!
Arrrgh I hope you manage to resolve your noisy neighbour issue soon. It’s good you’ve raised it with the council. We had a change of neighbours recently and we had a whole year of dust and noise while they transformed the house and our garden often felt out of bounds. All the more difficult for me because my ongoing side effects mean I spend much more time at home than I ever did. Of course it’s all part of life but it can be harder to cope when one is restricted with health problems.
I’ve turned down a lot of invitations from friends because I’m not confident how my bladder and bowel might behave. Also my lymphoedema restricts what and how much I do - very hot and very cold weather is challenging. I think such problems can mean we become somewhat inward looking and maybe stuff gets out of perspective. I guess learning how to cope on a physical and psychological level is an on going ‘work in progress’.
Yes, I have contacted the PRDA.ORG.UK and they put me in touch with my local late effects clinic. Who told me they can’t offer me much help and I would be better off speaking to my colorectal consultant! I have 2 stomas so I don’t know what he can offer. And they also told me to contact my local Maggie’s centre. I am back to square one.
I fully agree about our problems and we become somewhat inward looking and stuff gets out of perspective.
I agonise over every ache and pain, stomach upset, a bit of blood, swollen legs (lymphodema), etc.,. I saw the stoma nurse last week and she was very pleased with me and told me I looked amazing, which is very nice but then I started to panic thinking maybe she knows something about me and no one has told me. I get on my own nerves.
Oh my, you have been going through a very hard time and so many side effects - plus the annoyance of your neighbours, which must feel like just one thing too many to cope with.
When you say ‘have they missed something’ I’m guessing you mean ‘have I got cancer again and no-one has worked it out/told me about it’. This must be the worry of anyone who has been through cancer treatment. It is natural to worry, so I am told - so although you are getting on your own nerves you are only demonstrating how anxious cancer can make someone.
However, that doesn’t help you to cope. The only thing I can suggest, having only finished my treatment 3.5 months ago - is to TRY to concentrate your mind on tackling the here and now, and try not to focus on what might happen, or where cancer might take you… because you’re not facing cancer at this point, so it’s not helping you to dwell on it. When someone says you’re looking good, congratulate yourself! It means that, despite all the issues you are going through, you are recovering generally, and you’re doing something right! Try to embrace a compliment. You have so many issues - concentrate on making your life easier and better if you can, and the little achievements day by day, and tell the Big C to butt out…
I do hope your consultant can help you with the enteritis and stoma issues and that you get something of a good ‘break’. You deserve it. We all do - we’re heroes.
Everything you mentioned is true. I guess we are all or get worried over anything. This is the one thing they don’t tell you about before you being treatment.
I will take and thank any compliment given to me.
My confidence has taken a knock when I was in hospital in April with a bowel obstruction, they colorectal surgeon was awful and frightened me. I have changed back to my original consultant. Plus our next door neighbours are making a lot of noise and have put their grandsons trampoline and swimming pool right outside my bedroom window (we live in a bungalow). They can see into my bedroom and they scream, shout, fight and swear. My dad asked our neighbours if they could try and stop them from shouting as we can’t hear the television and we have to sit inside with all the doors and windows closed and he pointed out that I haven’t been well and neither has my mum. And the neighbour told him tough! She won’t tell them to quite down and they have been in lockdown! So has the rest of the world and that is a feeble excuse. We have reported them to our council who are investigating them.
Anyway, I hope you continue to get better and stronger.
