P is for...
Pelvic Radiation Disease
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After a few months though I was still tired and going for a wee was akin to passing razor blades. I would dread going for a wee and thought by stopping drinking so much that would help. Nope! I had something called Radiation Cystitis. If you have had cystitis you will have some idea of what I'm talking about except this is like no cystitis bout I've ever had. Forget powders and paracetamol, this needed the big guns. Luckily I ended up with an excellent Urology Nurse and I am pumped full of medication regularly to keep me functioning. Daily I take 3 different tablets to help my bladder regenerate its lining. Every 2 months I have to visit the hospital to have a catheter put into my bladder and a medication fed into my bladder. I then hold this medication for a hour and wee it out. This treatment has been done weekly in the past and will be again if I have another flare up. The problem was exacerbated by the fact that I was diagnosed with Interstitial Cystitis BEFORE I got cancer too, which has the same effects as Radiation Cystitis - I'm lucky that way!!
A flare up means I'm bedridden. Pure and simple. The pain is horrendous, I feel like I'm getting flu, I have to sit in a warm bath to wee and drink loads of water.
Helpful comments of drink cranberry juice leave me wanting to punch people, seriously if that would help don't you think I would be doing it??
Unfortunately having any Pelvic radiotherapy will more than likely cause you to have problems afterwards. It affects men and women and the symptoms can take 10 years to show themselves.
After the bladder symptoms arrived I started to get the odd twinge in my hip and back. Unfit, overweight, slept funny, need to exercise, all these excuses and reasons went through my head. Nope none of these, but my old friend Pelvic Radiation Disease! My facet joints either side of my spine have been damaged beyond repair which causes immense pain. As a result I have to take painkillers daily and have recently had pain and steroid injections into my back.
Then (oh there's more) I had a lot of tummy pain. I knew it wasn't period pain or a cyst on my ovary because everything was removed when I had cancer. It didn't feel like my bladder pain either. After 7 days of not being able to go to the loo I was rushed into hospital with an Atonic Colon. Basically overnight my Large Colon had decided it wasn't going to work any more. Like a petulent child it stomped it's feet and shouted "I'm not working anymore!!" I have had surgery and have to still carry out treatments which are hideous. I don't want to go into this condition fully, but it's changed my life and pretty much defines who I am now.
I thought I was alone. Why me?? I've survived cancer, but I am ill constantly. It even sent my blood pressure so dangerously high I was hospitalised. Then I found information from Macmillan Cancer Support about Pelvic Radiation Disease.
It's hideous basically and if people had any idea what I go through on a daily basis they would probably wonder how I function!
But function I do. I go to work, care for my disabled son, do housework, go out with friends, go for walks, read, write, watch tv and generally try to be a good wife, Mum and friend.
I have learnt that you can't give in. If you do then the cancer has won and that's not going to happen any time soon. Yes I have crap days where I am moody and bursting into tears all over the place, but I try not to be like that.
Life is tough, but I'm alive. So if some days I am miserable and bite your head off, try not to take it personally I'm probably having a really shit day!
If you know anyone who has had Pelvic Radiotherapy please share these links with them and let them know they are not alone. Remember it affects Men and Women as Prostate Cancer is treated with Pelvic Radiotherapy too.
Late effects of Pelvic Radiotherapy Macmillan Information
Cancer Research Information
Unfortunately I was told by the Pelvic Radiation Disease Association to remove the link to their website and their logo from my blog even though they are the best source of information. I was also removed from their Facebook group, which is sad as I had made a lot of good friends there. But onwards and upwards!
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Sounds a horrific problem to me. Good luck with your health.
ReplyDeleteThank you very much for reading x
ReplyDeleteHi there, I had radiation treatment two years ago for cancer in my vagina. I also had some low dose chemotherapy. It was nearly a year before the symptoms started. I had bleeding from the bowel which would worsen depending on what I had eaten. I did some googling and found only one man who offered any sort of help. He was not an expert but just someone who was successfully managing the late effects of radiation. He had a daily regime that worked for him. So there seems to be little help offered out there. My Doctor told me that I was not going to be able to stop it, but stop it I did. I had read how some women had ended up having parts of their bowel removed and I did not want to go there. This man's regime included glutamine powder which I got onto straight away. Then I called in to see a naturpath who gave me a probiotic and Curcumin tablets. Six weeks later all my symptoms had disappeared.
ReplyDeleteI am careful what I eat - foods that cause wind are off the menu (lentils, broad beans, cabbage, cauliflower and broccoli) onions and garlic too. However now that I have this under control, I have introduced cooked onion back into my diet as it is so hard to cook without it.
If you are interested in trying these things, here is what I am on - I take them all twice a day.
Glutamine powder - 1 teaspoon - which is equal to about 7 capsules.
Doctors Best Curcumin with Meriva - 1 caps - This one might be able to be left off but it is a good anti cancer food.
Metagenics Ultra Flora LGG. but I guess any brand with the same content would do. Each capsule contains Lactobacillus rhamnosus(LGG) 10 billion organisms.
I don't think for a minute that I have healed this disease, however I feel pretty confident that I am stopping my body from deteriorating any further. I see this as a rest of my life routine.
Goodness me, Mary. You are an example to us all. Even writing about it is brave. Very informative and very humbling.
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