New to the group with a question

Hi ChooseJoy, Congratulations on completing your Treatment. I'm glad you are 7 wks post treatment, but sorry you are experiencing pain and feel so frustrated. Just know your experience is not unusual. Everyone responds to treatment differently and what you describe can be normal for some and yes it does get better. You are still early on and your body needs time to heal. The radiation continues to work up to a year after treatment, but your symptoms will improve more quickly.

As far as radiation damaging your intestinal tract, bladder and digestive tract it is very rare for this be long term. I feel your frustration, as we all have experienced your symptoms to some degree.

I had to find out what I could eat to help relieve my symptoms for the 1st 6 months. You can always reach out to your Dr., if you feel your pain is unbearable. 

There will be more jumping on with information, just didn't want you to worry too much.

Love and Hugs

Thank you Amazing Grace for your words of encouragement. I guess I am just too impatient - I want to be better now! I want my life back. I think I must be going through some kind of grieving process as well as healing from all this. It sure is a lot to deal with.

Hi choosejoy. Sorry you have to find yourself here, but this really is a great forum with so much support. I can't tell you how much its helped me.

I'm 6 months post treatment and coming to terms with my new normal, which some days is quite painful bowel movements and soreness. Other days not too bad at all. I'm getting used to what I can and can't eat and learning what gives me better days. Its very very early days for you and your body has been through a big deal.  I think you are right about a kind of grieving process.  Your not the you before treatment just yet, but the wonderful people on here reassure me that it does get easier with time and maybe the new you is an even better one. I certainly believe it will be for me, eating better, exercising more, doing all the things I want to do and not stressing about the small stuff! 

Take it a day at a time and be kind to yourself and remember there's a lovely bunch here for support.

Deb x 

Hi Deb, thank you for the encouragement! I'm eating regular foods but still at a stage where I haven't yet figured out what affects my system good or bad. I have somewhat figured out that beef doesn't sit well anymore and pretty much cut that out. Too much lettuce isn't good either, so I keep my salads very small. I'm introducing things like nuts back into my diet gradually and in small amounts. I know I need fiber and protein to be healthy, but it seems sometimes that my system now cannot handle a "healthy" diet. I'm wondering about citrus - I have my 6 ounces of orange juice in the morning and a snack of mandarin slices in the afternoon. Does anyone else have a problem with citrus? I love milk [lactose free] but have restricted how much I drink in a day. And I have to tell you, I am really tired of eating rice! I'm easing into mild exercise. Before this I could ride my exercise bike 5 miles, but now I can only do 1 1/2 miles and I get out of breath. So yes, I guess it's going to be a long process. 

I've read through several discussion threads in this group and find it comforting that I'm not alone - although I'm sad that anyone else has to go through this.

ChooseJoy, It is a very Emotional experience after treatment. We just went through the fire and came out on the other side ALIVE!! It is a difficult adjustment especially since we just spent 6 weeks being taken care of by loving caring people through our physical and emotional pain.

When my Oncologist told me he would see me in 3 Mnths I had tears in my eyes and ask if I could come back in a month.He gently smiled and said, you can come back every month until you feel comfortable. I did just that and after my 1st scan I felt more confident. I also had a very sweet Radiation Oncologist who always reassured me everything was coming along as planned.

It still was a difficult adjustment dealing with the constant urge to go and fear of having accidents while out in public. I didn't experience the pain as much as constant urge to go. I couldn't tolerate dairy, meat, salad, spicy, fried, rich foods or sweets. I stuck to a pretty bland diet and got my protein through eggs and chicken. 

It may help you to talk to a dietician and tell them what you are eating and let them advise you. 

Keep us updated and Choose Joy

Hi ,

Just wanted to say welcome to the online community although I’m sorry you find yourself here & congratulations on completing your treatment.

You've received some excellent advice here already & I’ll just echo some of what’s already been said. Your body has been through a traumatic time lately, you’ve not only dealt with a cancer diagnosis, which in itself is a physical & mental battle but your system has also been effectively poisoned with the chemo & radiotherapy for 5.5 weeks so when you think about it there’s no wonder that we arrive through the other side feeling ropey is there? It’s already been mentioned that the radiotherapy keeps on working in your body for some months after your last treatment & I for one had inflammation flare ups for months afterwards. Have your Dr’s prescribed you anything for the days when you’re constantly in the bathroom? I was given a supply of loperamide incase it was needed, although I swung completely the other way & have to take softeners daily to keep things moving! 

I’m 19 months post treatment now & life is pretty much back to normal with a couple of minor adjustments! Diet wise I can eat almost anything although my system doesn’t do well with sugar, eggs or nuts. Sugar just seems to upset everything & eggs & nuts make me constipated! It’s trial & error at the stage you’re at I’m afraid but hopefully as your body heals over time you’ll find you can tolerate a more balanced diet. I’d maybe try adding things in gradually one at a time & keep a food diary so you can gauge any reactions & pinpoint what it’s caused by. Also I eat oranges, satsumas or clementines if I’m constipated as they always make me ‘go’ so the fruit juice etc., might be having the same effect on you? 

It’s still very early days for you yet but we’re all the same I guess, we want our lives back on track as quickly as possible & I remember feeling very impatient with myself especially when the fatigue would just stop me in my tracks! 

Just one last thing to add, if you’re still sore I would give the exercise bike a miss for now, that new skin that has formed since the radiotherapy will be very fragile & sensitive for a long time yet, I couldn’t imagine sitting on a bicycle seat even now to be honest lol

Remember this is the place we all talk about bottoms, pee & poo without shame haha… but most of all be kind to yourself & give yourself time we’re in this recovery business for the long haul but you will get there. 

Nicola

Hi Nikki65,

Thank you for your encouraging words! And I so appreciate the openness that you and the others have shown in sharing your own experience. It helps to know that one is not alone although it is awful to know that others have experienced this too. In answer to one question, yes I do have a supply of Imodium on hand for those days when diarrhea wants to be my best friend

So glad you are 19 months post treatment but sorry you still have some issues to deal with. I am slowly understanding what my system can and can't tolerate food-wise. Seems that I can't yet do lettuce even though I crave a huge bowl of crispy salad. My doctor [sometimes it's hard to know which doctor to ask which questions of - I have 3] said that I can pretty much eat what I used to before but to go slow and everything in moderation. So like you said, it is trial and [hopefully not much] error.

As for my exercise bike, I appreciate your advice. It simply didn't occur to me that the new skin on my seating area would be too fragile for that kind of activity yet. After all, I still can't sit on a chair without added cushioning and even then for not very long.

Most of my soreness now isn't so much my anal area but my vaginal area. That got burnt pretty badly and it makes me angry. I understand the need to burn away the tumor but why did it have to burn my girl parts too! 

I guess it is going to take a lot longer time to wrap my mind around all this. From getting the diagnosis to today it's only been less than 5 full months and still feels like a whirlwind. But it's my nature to look for the sunshine and hope to recapture the Joy I had. At least my hair is now an inch long!

Hi , 

Yes it’s still really early days for you yet & like you say so much had happened in such a short space of time! 5 months & when you think back to everything that’s happened between diagnosis & where you are now you’re exactly right in saying it’s an absolute whirlwind. 

You mention about your vaginal area suffering during & after treatment & I totally relate to that, during & after my treatment my front was more painful than the back for the most part! From week 2-3 I suffered radiation cystitis which unfortunately unlike bacterial cystitis the Drs can’t give you any medication for so I had a permanent burn from then on when going to the loo! 

I was lucky enough that I didn’t lose my hair with the oral chemo, it went a little thinner & wasn’t in great condition afterwards, it was pretty frazzled in the few months after, I’ve had a couple of good cuts & changed my conditioners etc., & it’s ok again now. 

You sound as though you have a great approach to all this though & yes keep on seeking that sunshine.

Nicola