Newly Diagnosed

Hello RoseRich

A warm welcome to the forum although I am sorry to hear of your diagnosis but I am glad you found us and please remember that sometimes you only read the negative things that have happened, people don't tend to post if their life has gone back to normal.  And the treatment is tough but doable and the huge bonus for most people is that they are now cancer-free.

My life hasn't gone back to as it was before, but for the most part I am ok with that.  I still get a huge amount of pleasure walking my dog, seeing family and playing with my grandchildren.  After radiotherapy I was left with ongoing fatigue and stenosis in my back passage but I have developed different coping strategies to deal with that.  But that said, there are people who have gone back to as they were, more or less, and occasionally they pop by to update us.

Unfortunately there is no way of knowing how you will be affected until you have actually had the treatment but if you have read lots of posts, you will be aware of all the coping strategies and tips!  You will probably need a few of those during treatment and I hope very much that you will be one of those who slots back into their old life.

We are here to offer support along the way, should you need it.

Irene xx

Oh Rose,

I feel your desire for 'just feeling normal' in every cell of my body. I'd been in some degree of butt pain for 2 years prior to my diagnosis (something that still confuses me) so my hope was to get back to the time before THAT, when my butt was something I rarely thought about at all.

It's not the same for me. But life now, 2 1/2 years after treatment, is so much better than it was before, during and after treatment. I still have occasional pain. I still drink my water like it's my religion and take fiber supplements until my eyes roll. Fatigue is still an issue (which could just be age and not enough exercise). I'm not riding my pony very much, and very lightly when I do.

But there are so many things I CAN do again. Travel, with sensible planning and packing. Sex, not frequent but such a blessing to be able to enjoy it again. Morning coffee and bathroom trips, which are frequent and sometimes urgent but no longer loud, painful and dramatic. Best of all, long periods of time—the latest one 2 months long!—with pain so minimal that it didn't even require Tylenol.

I was just discussing on the Facebook forum that I didn't gain much beyond the HUGE boon of being cancer-free. I had the idea that the ordeal would make me stronger, braver, nobler. 

Not so much.

But it HAS given me new perspectives that I'm still examining and working with, and am so glad to have.

I think 'the life we lived before diagnosis' is a terrific Platonic ideal to float out there and help pull you through the tough times, I don't think it's a good idea to get so invested in that ideal that anything less is disappointing. 

Remember there ARE a lot of folks who endure the treatment, get cured and sail on without a backwards glance. We don't hear much from them cuz this was just a blip in their past.

Assume you'll be one of them, but also be prepared to deal with your individual path which may have some curves.

Hugs

Suz

Hi RoseRich, welcome to the group and yes it can be scary to come on for the first time and read members experiences on how treatment and recovery has affected them. This is why we need this group to allow us to sound off, get tips on how to manage the side effects etc. As Irene said, those who have gone through treatment with very little problems do not need this group. Fingers crossed you are one of them but if you’re not they like us you WILL get through it. I’m three years post treatment and life is great and more importantly, painless! I did become sensitive to lactose and citrus fruits but now I can occasionally tolerate a small satsuma and trying to manage other foods. This isn’t a big deal as it has forced me to adapt to a healthier diet. We are all different and react differently to the after effects and pain relief. When you have your first appointment with your oncologist he/she may run off a whole list of side effects which can be pretty scary but you are very unlikely to get them all! What you may get there is usually solutions like creams and good painkillers. When you start please come on here and we will guide you through it.

Julie

I do appreciate you taking the time to reply and it’s very helpful. Thank you 

Thank you do much 

Thank you Irene. That has given me a lot of comfort. 

Thank you so much for taking the time to reply. That was enormously helpful and yes let’s hope I’m one of the ones who sail through, but if not I’ll cope! 

I will Julie. Thank you for taking the time to reply. 

Yep, me!

I finished my treatment almost 3 years ago this Christmas and although I still have check ups, I can say I am back to normal. I have some vaginal stenosis which makes penetrative sex tricky - but I am 65, been there, done that.. 

Otherwise I feel fab.

Remember we are all different and your experience will probably be different too. Use this forum and ask anything you are worried about, someone will have advice and support for you. For now I would say get that sitz bath, it is helpful in many ways, use the creams the medical staff give you religiously and ask them about anything.They have seen it all before.

Oh, and keep us posted! 

I wish you a smooth course of treatment, hope it goes fast for you, and of course a speedy healing and recovery.

That was extremely helpful and encouraging. Thank you.