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would anyone like to write to a lady in uk whos recently gone through bladder ca
Hi, just came across this site. My mum whos 75 was diagnosed with muscle invasive bladder cancer and in feb07 underwent 8 hour op to remove bladder, womb and nearby lymph nodes. Shes now recovering but support here in uk is almost non existent. She would really love to write to another woman who has gone through the sam/similar. She has a stoma bag which she finds hard to get used to etc. If any ladies out therwe would like to be her penpal please contact me, thanks manyd x
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3 Replies
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Mandy…its good that you found a group…perhaps she can at least phone them?….She’s only 4 months out and still in the adjustment period and probably still feels somewhat weak. Its a tough surgery. I didn’t have an ileal conduit like your mom but i do have an internal Indiana Pouch and had to wear an exterior stoma bag for about 3 1/2 weeks….that was pretty daunting….i found i wasn’t as ambidextrous as i thought i was…and some of the bags leaked and i reacted to the plastic next to my skin and of course finding clothes to hide the darn thing didn’t help. I found myself buying jumpers and loose clothing. Its not unusual to be depressed but it will get better. Her body will adjust and she will become an old pro at dealing with that bag. But i do hope she finds someone to talk with. Pat
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Hi Pat, unfortunaetly my mum cant even turn on a computer! shes 75. I have had a search and found an association in uk not far from where she lives they are going to put her in contact with some other women who have been through same. Shes really depressed and feels like she hasnt got confidence to go out much with stoma bag, not sure what they are called in usa its the bag on outside of stomach that urine goes into. she had her bladder, womb and some lymph nodes nearby removed, they were tested and were clear. It was invasive into bladder msucle but contained in that area. She just need to regain her confidence and meet people who have come through the same and can relate to her situation. thanks for your reply
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Mandy….can your mum use the computer? There are lots of women on this site who have gone through cystectomy…many have internal pouches or neo-bladders but i’m sure we have some with ileal conduits as your mum does. Hopefully they will start replying. WE have many members in the UK also. I’m not familiar with the support groups you may have there but there is a Urostomy Association in the states…i’m wondering if you might have the same thing in the UK?
I wish her well…its a big adjustment to recover from the surgery and then have to deal with an external bag. She will get better….it just takes some time.
What are her particular issues at this time? We will try to help as much as we can……….Pat
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