Long term effects from radiotherapy 1990

Hello my name is carol I was diagnosed with cervical cancer 1990 I was 24 yrs old. I suffered really bad with stomach pains and was given a smear test which picked up pre-cancer cells, by the time I had my appointment to see the specialist the cancer had spread which resulted in me having an hysterectomy. 

I'm now suffering with long term side effects from  radiotherapy. At first the pain in my lower spine was unbearable which included, countless injections into my spine. Acupuncture and more injections before being told I have nerve damage.

I found it really difficult to control my bladder just standing would release urine. When I saw the specialist I had test done on my bladder which resulted in my bladder being removed, and a urostomy. 

I then found out that I had fibrosis of the stomach and organs some days I couldn't get out of bed. But I just tried to get on with my life, even if its been a down ward slope.

I was then diagnosed with stage 3  breast cancer 2019 followed by chemotherapy then radiotherapy. I started to notice my feet going knumb so informed my consultant I was later told  I had periferal nuropathic in both feet.. Just laying on my bed felt like a vibration running through the bed. My saying was ever time I get to the top of that hill I knocked back down.

Then I started having problems with my bow last year 2022 l I had to have a procedure where they tried to removed the lump using the method of going up my bottom, I forget what the procedure's called. But because of the fibrosis on my bowl the pain was so bad they could proceed, and had to be careful they didn't tare the bowl.

I had no choice I had to have the lump removed my operation was 23 june this year .and was told I would end up with a colostomy bag. The surgeon explained because of the fibrosis in my bowl and stomach its going to be a difficult operation. At the same time I had a ct scan for the operation which indicated my left kidney wasn't working. So Ive now got a left side nephostomy bag. 

I had my bowl operation which wasn't straight forward I ended being rushed back into hospital with septus. I tried so hard with my mental health for so long, but it was the final straw I was depressed and needed counselling. Now I try so hard to keep going I know I'm lucky. My great nephews and great nieces call me the bag lady. There parents explained everything and once explained it was just another procedure. I'm really praying that next year with gods help I'll get over that hill.

Sorry for moaning. Have a good day.

Carol

  • Hi Carol,

    A very warm welcome to our forum.

    By the sounds of things, you're more than entitled to moan, after all that you've been through. You must be an incredibly strong lady to have come through so much. Have you been given anti-depressants to help you to cope with everything? I am glad that you resorted to counselling and I hope that you found this helpful. Don't hesitate to go back, if things get too much for you again, as it often helps us to put things in proportion and to count the blessings that we do have.

    We are always here for you, on the bad days as well as the good. 

     Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Hi Carol, 

    I agree that you have plenty to loan about and that you have had to deal with so so much. Counselling can be amazing. I see someone at a charity near me and she has helped me so much. No shame in ne ding help to cope. Especially after all you have been through and are going through. ️:)

  • Thank you for your kind words and taking the time to reply. Ive found in counseling I haven't deal with my emotions from my first diagnosis, I lock all the emotions up and not even approached the thoughts of not having my own child at the time.

    At the moment I'm so ashamed of my stomach all the scars and now coping with three bags, my husbands so great and understanding but its seems to be medical problems having medical problems. I'm so greatful and can't thank god enough for my life. Ive got the chance to survive. This years going to be different I'm determined to start approaching each day with a smile.

    Happy new year

  • Hi Carol,

    Counselling can be a great help if you see the right counsellor. On the other hand, if you don't connect with your counsellor, it can be a big disappointment. You have had more than your fair share of challenges in your young life and to me you sound more liker "Miracle Lady" than "bag lady". I have been medically challenged throughout my life too, and have found that the saying "what doesn't kill you makes you stronger", is so true. I have had operations from my eyes to my ankles, covering almost everything in between. The scars on the front of my body look like a patchwork quilt, but instead of being ashamed of them, I refer to them as my "battle scars" and I feel proud that I have, with the help of various surgeons, overcome the odds so many times. 

    I now feel grateful to see the dawning of each new day and I feel so much better in myself, since I managed to turn my mindset around. I'm not saying that it was an easy thing to do. It has taken me many years and a number of different courses, before I gradually became more positive about myself. We only get one chance at life, no matter how hard it may be and we've just got to make the most of it.

    I, like you, am fortunate to have the support from a great husband, who has sadly now developed his own health issues too, but we'll struggle on together.

    It sounds as if you are ready to approach 2024 with a new outlook and, I wish you every success in doing so. It is about time that you stopped collecting new medical challenges and I sincerely hope that this will be the year for you.

    Here's wishing and you husband, Peace, Health and Great Happiness for the New Year.

    Kindest regards,

    Jolamine xx

  • Good morning Jolamine.

    Thank you for your kind words and understanding wow reading your reply and everything you've gone through, my specialist adviced me to have a look at this site and I'm glad I have. I love the term battle scars which they are Ive never thought of them in that way. You must be a very strong lady yourself to overcome everything life's thrown at you. And thank you so much for taking the time to reply have a great day..

    Here's wishing you good health, and also happiness for 2024.

    Take care carol xc

  • Hi Carol,

    I was diagnosed with gallstones, just 3 weeks after my mum died. at the time I couldn't breathe and hadn't been able to sleep for those 3 weeks. When I saw my GP, he immediately phoned the surgeon, who came out of theatre to see me, within 20 minutes. I was admitted there and then, but told that they couldn't guarantee that I'd pull through. The reason for my breathing difficulties, was because I had Empyema (Pustular Pleurisy). I had to have IV antibiotics for2 weeks, before they could operate. When they did, I stopped breathing on the operating table and came around, to find that nothing had been done. After a further 2 weeks of IV antibiotics, they had another try. This time, they relieved me of a 3" gallstone - it was like 2 golf balls that had been welded together. Naturally, this couldn't have been done by keyhole, so I was cut from breast to groin. They had suspected cancer at the time, but fortunately, none was found.

    I always thought that I was a strong person, until I got my cancer diagnosis. I had lost my mum to secondary breast cancer, which had spread to her liver, lungs, brain and bones. I honestly believed that I was prepared for a cancer diagnosis after this, but, in truth, I fell to pieces. Having a second cancer diagnosed so soon after the first, didn't help either

    It took me quite a few years to begin to realise that I needed to move forward, for my own sanity, if nothing else. I saw counsellors and, sometimes, I didn't think that they had helped at all, I saw others who were really very good. In hindsight, I got a lot from the ones that I was unimpressed with at first, as I got viewpoints from different perspectives. I attended exercise classes, pain management classes, moving forward classes, various support groups, etc. Like the counselling, I didn't think that they were doing anything for me at first, but I eventually found that my negative outlook, was beginning to look more positive. That's not to say that I am always positive, I still have my moments, but who doesn't?

    Never be ashamed of your body. It is quite unique and is a testament to all that you have come through.  Instead of embarrassment, wear your battle scars with pride. In a strange way, we have both been very fortunate.

    Kind regards,

    Jolamine xx