Linda – 54 – Central Illinois
I was diagnosed in 1998 with stage 2b cervical cancer. I was 30 at the time. I had stand-alone radiation treatment, and I did not have any chemotherapy. I had 6 weeks of external radiation (30 sessions in total) followed by 3 internal radiation treatments (brachytherapy). At the time I don’t recall being told about long term side effects. There was talk about short term side effects during the radiation, but I don’t recall seeing anything on a consent form about long term effects. I now have RILP (Radiation-induced lumbar plexopathy) and PRD.
The symptoms kind of sneaked up on me. I remember my mom telling me 15 years ago that I walked with a limp, and I didn’t even realise. Over time it progressed to where I was falling more and tripping over things and it progressed into numbness and pain in my feet like a neuropathy – I noticed my drop foot – I call it my ‘fish foot’. I thought I had MS to begin with – I was an oncology chemotherapy nurse, so I knew way too much!
Then I broke both of my ankles – I literally fell backwards and broke my ankles and that was because of the weakening and crumbling of my bones because of being in an early menopause due to the radiation. At the time I didn’t recognise it for what it was.
In the last two years it has gotten to the point where I can’t work face to face as a cancer nurse. If I couldn’t work from home, I wouldn’t be able to work at all anymore.
I have all the classic PRD symptoms as well – incontinence and urgency – both the bladder and the bowels. I have a lot of diarrhoea and I get UTI’s easily. My bladder has dropped because I had so many biopsies before my treatment, so there isn’t much cervix left now.
After my treatment I had about 5-8 years before my problems started. It started with my drop foot and then the bowel and bladder issues and then, a few years later, I broke my ankles. In the last 3 years, all of a sudden, things have deteriorated very quickly. About 2 years ago it got to the point where my mind was being affected. I had malabsorption and my brain was foggy. My personality changed, I couldn’t remember words, and I was stuttering. I was still thinking along the lines of MS – even being a nurse I had never heard of RILP or PRD.
I finally went to neurology, and it was two or three visits before I was diagnosed with RILP. They know the nerves in my pelvis are affected but they don’t understand PRD; they still try to say that it is late onset colitis (IBS).
My whole life is nothing compared to what it was. I don’t leave the house, I don’t go anywhere, I don’t go out in public, I don’t go into shops. I always have to have something to hang onto. In the house I cruise the walls.
I feel angry. My one child is all grown; he has a child of his own and I can’t take her out because if she ran away I couldn’t catch her. I can’t pick her up. I wouldn’t want to fall carrying her. There is a lot of anger, sadness, isolation. I wouldn’t say depression, but when I stop and think about things, I think “this isn’t what I want to be doing – I should be out there being a nurse”. But that isn’t going to happen
My family all feel sorry for me – but I don’t want them to be sorry or sad for me. They try to help. But I am super stubborn, and I usually don’t accept very much help. My son doesn’t live too far away, and he tries to help. The biggest impact is that I don’t get out. I don’t go anywhere. I don’t socialise. My sister and mother live in Texas which is 1000 miles away and I can’t imagine how I would get down there to see them again. If they don’t come here, I don’t know how I would see them.
I am pretty much on my own all the time. My son will bring my granddaughter to stay about once a month. But I work a lot – I work about 6 days a week. If I didn’t have that I would go a little stir crazy
I have a lot of physical effects like pain, and I have a lot of gastrointestinal issues so I can’t be too far away from a bathroom. And if I don’t watch my diet I am going to be in a lot of pain and have diarrhoea the next day. I follow a very strict diet – I cut out all gluten and no added sugar to try and help.
You manage to find a way to adapt.
If I had my time again, would I still go through the treatment? That’s a big question, and I wonder about that sometimes. The only thing that helps me deal with all this is that if I hadn’t done the radiation I would definitely not have survived. My son was only 2 years old when I was diagnosed and I made a deal with the universe: let me raise him, let me get him through high school. It was about the time he got out of high school that things started to get bad. So, the universe took me at my word!
What other choice did I have other than the treatment? Had I not done it, I probably would not have lived. But if I knew then what I know now would I have let them give me such a high dosage of radiation? Probably not. But at the time, the only other choice was die at the age of 30. So, when you look at it like that, yes I would do it again.
I was super excited to find PRDA because you actually have information available. So I was super excited to come across you. There is nothing in the USA – we are so far behind you.
Really the only joy I get in life these days is my granddaughter. She is the sweetest thing that ever was. If it wasn’t for my granddaughter, I wouldn’t have much else. This disease takes away your quality of life and its sad, but you have to find the little things like the 2-year-old granddaughter that gives you some joy. Whether it’s your dog, or cat or garden, if you can get out there, there is always something that gives you a little bit of joy. I get a little bit of happiness wherever I can find it.
Modified: 13th September 2022