This October 2023, will mark the 25th 'Anniversary' of when, at the age of 26, I was wheeled into Theatre for an Operation that lasted 7hrs.
I had 8 months previously been told that there was nothing wrong with me when I kept going & phoning the Doctors as my Period (as I thought it was) came in January of that year, 1998 & didn't go away. In those days People didn't know the signs of Cervical Cancer although the Doctors did, which has been a source of great anger that I live with everyday.
Eventually I got a Hospital Apmt for the 2nd October that Year & when I went, I didn't get out for nearly a Month. The Tumour was visible to the naked eye of the Consultant on my Cervix & after more Scans there were signs that it had spread. I had over 300 internal stitches, 28 external stitches, tubes draining blood & a catheter (for 8 months).
The Pathology came back confirming that the Cancer had been in my Womb & in the Tissue that they 'scraped' away from my Pelvis. This lead to a debate as to whether I should have Chemo & Radiotherapy or just Radiotherapy. My notes were sent to the Royal Marsden & the decision was made for me to have 5 wks of Radiotherapy.
As I'm sure a lot of you know, there began years of follow ups etc. The last MRI I had of my Pelvis, about 10 yrs ago was reported on saying that there were, 'Changes to the bone structure in the Pelvis. Radiation related. No Treatment'.
About 8 yrs ago I started to have terrible pain. This pain can be on my right side, left side, across the top of my abdomen & through to my back. I am on various Pain Medications. I had to use my little private Insurance Policy to get a Colonoscopy in January last year. I was told that the damage to my left descending Colon was extremely significant. It had narrowed to the point that I was at risk of Bowel Obstruction so I was told, 'When you can't stand the pain any longer come back & they would have to fit a Colostomy Bag'.
I was horrified at the thought but as the months progressed, I was having more & more 'accidents' & the pain was awful. So I had to come to terms with the fact that the time had come to go back to the Consultant with the anticipation/dread that a Colostomy Bag was the only way for the accidents to stop & maybe even reduce the pain.
To my horror when I went back in July last year, I was told that my Bowel was too damaged to even fit a Colostomy Bag. The nerve damage was too great. I was told all that could be done was to take Laxatives every Morning & I was not allowed to eat any type of Fibre at all. A Low Residue Diet.
Since then, over a year later, I am more or less Housebound. I'm in pain everyday, have to wear what I call my 'Nappy' 24/7 & have no help from my Doctor whatsoever.
It was my Support Worker from a Charity that found the PRDA for me. I didn't think there was anything out there for People suffering in the same way as myself.
I'm glad I found you & hope I haven't bored anyone too much. I just felt that if I was to join & hopefully talk to other People like me that my story would be helpful.
Thanks for reading.
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maddie_1234
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Goodness Maddie, you've really been through it haven't you. I can't believe that there isn't something that can be done to help you get out and about. I know it feels horrible having to wear tena pants or the NHS equivalent. I've had to do the same for years. I have what I call a chernoblys where I soil myself with little warning. I have a rada key, a card from MacMillian that means I can walk in anywhere and show the card so they can let me use their toilets. I refuse to be imprisoned by long term radiation damage. I can't begin to imagine how things are for you but you're too young to just put up with what's going on. Go back to your, GP, consultant, contact MacMillian nurses, and shout help! Jo's Cervical Cancer Trust has loads of information and signposting too. The more you shout the more someone should hear you and be able to help you get back out there. Don't be fobbed off. Your mental health as well as your physical health is suffering and that's what they need to know. Virtually holding your hand here, Maddie. Time to get mad with your health professionals. 🤞👍
Thank you so much for your very kind reply Jimbo. I have fought with Doctors for nearly 25yrs. You could count on one hand the ones that have even tried to care. I get panic attacks if I even go past my Doctors Surgery. I have given written permission for my Father to speak on my behalf to them or for them to speak to him about any aspect of my Health, Mental & Physical as I just can't do it anymore. I have no fight left. I had a telephone apmt with a Psychiatrist yesterday Morning. It's a different one every time! Anyway, he said that I cannot go on without intervention for the Pain & that he was going to write to my Doctor. I had to cut the conversation off as I had to run to the loo. I didn't want to have to cope with another, 'Accident'. The thought of the Doctor contacting me fills me with dread but I wouldn't even hold my breath that they will. They know exactly what my situation is & just don't care. I have lived a very lonely life for a very long time, even before the Radiation damage to my Bowel took over. I got the 'Out & About' Kit from the PRDA. It's a great thing to have. Just having someone out there that understands is a real surprise to me & so very welcomed. Thank you for the Information you have given. From one Chernobyl to another....virtual hug right back at Ya. 🤗
Hi Respiration, good to see you on the PRDA site on HealthUnlocked. It can be quite confusing when you first join. I thought I was just joining a forum for people who suffer with the long term effects of Pelvic Radiation when I joined up to HealthUnlocked. I soon discovered that HealthUnlocked is a place where people who suffer from literally hundreds of different conditions can join through the gateway of the site they were first in. So, for example, if you were on the PRDA Website, you would be invited to join their particular forum on HealthUnlocked where we can all communicate our experiences & hopefully offer some help & advice to one another. It certainly makes you feel less alone! But this is not the PRDA Website. The 'Out & About' Toolkit is a life saver & here's how you can learn about it & order it. Go to PRDA Website prda.org.uk, under Support you will see about half way down the page, info on the Toolkit. Just click the blue link & it will bring you to a page where you can order it directly from the PRDA. I hope this helps, good luck.
Oh I am so sorry to read your story. Truly awful for you. I think GPs are still not aware of all the symptoms of cervical cancer. I kept going to the surgery complaining of pelvic pain and I was treated for bladder infections for months. My scheduled smear got alarm bells ringing .... not bladder infections at all. I think we know our bodies and when something is not right. I wish I could give you advice but am glad that at least you found us. Come here and "talk" to us.
Thanks so much Sing, I will 'Talk' to everyone willing to listen 😀 You are right about us knowing our own Bodies but unfortunately GP's just want to look at the simplest thing possible. Yes, things should be ruled out but proper diagnosis should be worked on. So many lives, mine included have been completely destroyed by shear incompetence & lack of actually caring. I suffer with very severe Depression, have done since the day I left the Hospital 25yrs ago. Do the Doctors have to answer for their incompetence, no. Nothing ever falls back onto them yet we are the ones who have to fight for even the smallest of things. I've fought too long & just don't have it in me anymore. I am so glad that I found you all & hopefully we can help each other.
What I found so hard was finding someone to talk to who could understand what I had been through and my anxieties going forwards. It took years to find this group! Let's keep in touch on here.
Absolutely!! 👍🤗 Don't be afraid to talk about what exactly is worrying you 'cause I'm sure we've been through it or can certainly understand it. I don't know you're 'Story' or where you are as regards treatment but I've been long enough after the end of mine to understand all the anxieties there is to have!
You poor thing. What a terrible thing to happen and what would appear need never have. I can only say what a brave and determined person you are. I too have only recently found this site. What a godsend. Just to be able to put one’s own experience(s) in words is huge. To be heard huger. To be given validation after the long and painful suffering. I have felt really humbled. I have been advised of a specialist locale and am now waiting for round 2 with my GP to try and get them to refer me (you can’t self refer) so that I can hopefully be given an appointment or attend a meeting to find out whether I can find ways of managing myself better. Very happy this site exists and hope that you can get some help or advice yourself too. Good luck 🤞
Thank you so much Briars. You said it when you said it need never have happened. That's the anger that I live with everyday. The lack of accountability of the GP's & more is just not right. That's putting it mildly. I was young, my so called 'Friends' at the time disappeared 1 by 1, getting on with their lives while I was living with such severe Depression. One 'friend' came to my house about 8 months after my Surgery & Radiotherapy & told me that she couldn't come back because, 'I brought her down'. My Mum took sick shortly after & died in April 2000. I saw this Friend at the Funeral. My poor Dad was just 54 & Mum died due to pure Medical Negligence. It was a lot to cope with. So I live with my Dad, have no friends but I am very lucky to have a Support Worker from the Charity, Mindwise who comes to see me for 2hrs every week. Just to have that outlet is something. You said that you are hoping to get referred to a 'Specialist locale'. Do you mind me asking what that is? Please don't feel you have to answer but I wish you good luck too & hopefully we can keep in touch. I'm liking sending virtual hugs. The real ones are so important.🤗
Hi Maddie_1234
Sorry I meant a local specialist at the hospital where I had my cancer treatment. The thing is that now there are so many cancer survivors beyond 5 years, as more people come forward and talk about their experiences and suffering, the more we can all help each other on this site together with the doctors and nurses who specialise in the different areas. I have been researching this stuff since my treatment finished in 2015 and for a long while there was only medical reports written by doctors and professors available. I believe the Royal Marsden have been key in researching PRD further which is why I assume the charity was set up and here we all are. Things can only get better in terms of professional care and management of all of our symptoms. As we discover more we will be able to improve things not just for us but for all those that will undoubtedly follow. If we are more prepared at diagnosis then treatment can only improve. Let’s face it if I’d had my cancer 10 years earlier I might not have been here at all. It’s only due to research and science that we’re all here at all. Keep the faith and keep shouting loud enough to be heard
I understand what you're saying & fair play to you for doing all the Research you have. I had my Cancer Surgery & Treatment 25yrs ago, at 27. I was told that if my Hospital Apmt had been a Month later they would have been sending me home to die. An Apmt that I waited on for 8 months! 😡 My Oncologist was able to tell me that the damage from the Radiotherapy will not show it's head for some time, even up to 10 or 15yrs after & she was exactly right! If she was able to tell me that then, I keep wondering was she the only person who knew?? Perhaps I'm just being negative, it's so hard to stay positive but sometimes I think that the Medical Professionals do know what happens to People but the symptoms are so wide & varied that they choose not to deal with it 'In the Whole' or at the very least just treat a Symptom as it arises. Hope you understand what I mean. Trying to keep the Faith!
😊
Of course I do. It’s tragic that not all doctors and professionals work the same way. Some give too much and some too little. Even now you’ll often get treated with disregard by a lot of health experts. I have certainly had my fair share of the cold shoulder or being spoken to as if I’m an idiot. But in amongst those are the few that remain true and will tell you what you should know not what they think you should. I’m a great believer in educating myself with all of my health issues. I have also spoken out to those that have not treated me or my family well. Hindsight is wonderful if you can change the outcome. Truth is we all often look back and wish we’d done it differently or spoke out then or went to that place. However we’re only human. Virtual hugs and good vibes coming your way. Maybe tomorrow will be a better day. We have to move forward and not keep looking back. We can’t change what’s already been but if we all keep talking we can change the future. Night night 😊
Oh boy, you are so right when you talk about getting treated like an idiot. I've had so many years of it that. Last Year after my GP refused to give me laxatives (before she received the letter from the Gastroenterologist Consultant, who I had to see Privately through my Benenden Mem.) Even though I had spent the night in Hospital a couple of weeks earlier as I was totally 'Compacted' & the laxatives they gave me to take away had no effect whatsoever, I was on my hands & knees in pain. I just broke, completely broke & thought they're gonna just let me die & just couldn't care less. Anyway, I wrote a letter to the Surgery giving permission for them to speak to my Father about any aspects of my care & for him to advocate for me. I just couldn't cope with them any longer. I don't mind telling you all that I attempted Suicide 3 times due to Depression, caused in a large part because of being dismissed & not getting the care that I needed (thankfully that was over 10 yrs ago). If it wasn't so serious it would be funny because the advice given to me each time by the 'Mental Health Crisis Team' that comes to see you when you get out of Hospital told me each time that I should, 'Write a book about my Life'. That was the full extent of the help I got from them. Unbelievable but true & again are they held to account......no! Gosh once I start I don't know when to stop & I haven't even scratched the surface yet!!! Hugs.
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