Helena's Story: Changes

By HELENA MURRAY

Last Updated:

1 min read

I was told in September 2016 I had cancer and started chemotherapy in October.

It saved me, but I'm not the same

I have to be truthful it was awful, I was given options but because the tumor was on the wall of the bladder I went for getting it removed. Surgery was a great success but, I still hate the bag. I know it saved my life but it changed me as a person.

Terrible changes, but no cancer

Going for a walk, if it's cold you feel hot stuff coming. I keep thinking it's leaking then waking up with a terrible itch wanting to scratch like having a cast on. I fell and smashed my vertabries in my back due to my bones crumbling. Pain still chronic but good news scan showed no cancer after 5 years. This is my story.

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Dan Franke Member

Helena, thanks for the share. I get the changing part. I'm not the person I was pre-cancer. The new me is different-not better or worse-just different. Would I go back to pre-cancer me. Darn right I would. Good luck. DanF, moderator, <a href='https://bladdercancer.net' target='_blank'>BladderCancer.net</a>.
michelec720 Member

Helena, I'm fortunate I haven't had to have my bladder removed, so I know I can't really know how you feel. My only thought is, when something is happening that I really, really don't like, I've been successful (sometimes) with the thought "I don't have to like it, I just have to do it." That takes the stress off me and I've had a couple of times when it just made me more accommodating. In any event, good luck, and I hope you can find some peace. 
1. Laura MacKenzie Member
 
 <inline-mention username="michelec720" user-id="2073619"/> I like that. It is a good way at looking at things. Laura, Moderator, <a href='https://bladdercancer.net' target='_blank'>BladderCancer.net</a>
Laura MacKenzie Member

It is most definitely life changing. I have two stoma bags after my surgery for bladder cancer four years ago. I have changed but think mainly for the better. I am more considerate towards others.. Mostly I am grateful as my bags saved my life. However there are certainly days when I hate them. On a practical level, you can try flange extenders to secure rouble bag for confidence against leaks. I sometimes get that itch issue and use stoma powder for that. The journey does get easier, promise. Laura, Moderator, <a href='https://bladdercancer.net' target='_blank'>BladderCancer.net</a>
Linda Urbanski Member

Helena - we all deal with things in life differently. You have pain issues that I do not have. The "hot" feeling you have when walking I suspect is the bag filling up with warn urine. We all have it but it may bother some and not others. I would suggest having the itching looked into if it is a problem for you. You may need to change bags more frequently or to a different bag. Trust me that not one of us wanted our bladders removed but it was a choice and we all hope it would make things better. For some it is harder to deal with. I am happy to hear you are cancer clear for 5 years now and I hope that your pain gets better. Sending a hug your way. My best Linda ( moderator, <a href='https://bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)
Linda Urbanski Member

<inline-mention username="HELENA MURRAY" user-id="2071842"/> - Just checking in to see how you are doing. We are here to support you and hope that things are improving. Are you adjusting to your urostomy and is your pain lessened? Sending good thoughts your way that things are improving for you. It is a journey to take the time you need to heal. My best. Linda ( moderator, <a href='https://bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)
HELENA MURRAY Member

Thanks so much to everyone for answering shame having 2bags never mind one so brave coping weird when I was up for scan in November sitting in gown a man walks in with gown on and I asked him if he was a doctor he was the same person who told me I had cancer 7th September 2016 now he was going for a scan in 2021 for cancer you never forget the person who told you hope he gets on ok 
1. Linda Urbanski Member
 
 @HELENA MURRAY - Wow - what a strange turn of events that your doctor is now a cancer patient. I am praying for the best for both of you. My best. Linda ( moderator, <a href='https://bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)
2. Laura MacKenzie Member
 
 <inline-mention username="HELENA MURRAY" user-id="2071842"/> it shows as so well that no one is immune. Hope you are having a good day. Laura, Moderator, <a href='https://BladderCancr.net' target='_blank' rel='noopener noreferrer ugc'>BladderCancr.net</a>
Linda Urbanski Member

<inline-mention username="HELENA MURRAY" user-id="2071842"/> - Wanted to check in to see how you are doing. I hope that you are feeling better and are having an easier time accepting your urostomy. If the warm feeling you get when your urine goes into your bag bothers you, there are bag covers that may be able to help with that. I fold my bag up and to an angle and tuck it in my underwear and pretty much forget about it for a couple hours until I empty. I do feel that for those who struggle with this surgery afterwards, it does seem to get better with time. We focus on other things and find that it is not a main concern on our mind as it may have been initially. Hope your back is healing well. My best to you. Linda Urbanski ( moderator, <a href='https://bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)