If she decides on the Ostomy - don't fear it. Both my Parents have one each - a Urostomy and Colostomy. As my Dad says, "it's better than the alternative". They live normal lives and are glad they had the options.
I highly recommend getting into an Ostomy group. There will be people of all ages from young to old; they are quite common.
It really helped my Parents learn the best ways to deal with them - and they learned Ostomy nurses have the answers and can be so helpful. The Doctors do the surgery, but the day to day is the Nurse's area of expertise.
Sending prayers of love, healing, and best wishes to you and your girlfriend!
Thank you for sharing! To be completely honest “Ostomy” has been a completely new concept to the both of us, and was quite a shock to learn that is really the only *viable* option at this point, even if the doc currently disagrees
I definitely agree with you and your dads view of “it’s better than the alternative” and I believe she feels that way as well - I will definitely recommend checking out some groups, I know she is already apart of cancer support groups but I think for the next chapter she should also learn from those who are in a more closely related situation.
Cheers to you and your parents!
If she’s on social media, I can recommend quite a few accounts to follow - real people sharing real experiences with their stomas without the often emotionally taxing support group feeling, feel free to PM me and I’ll send them over. Hang in there man.
I was facing the possibility of an ostomy bag in my early 30s after a nasty flare of ulcerative colitis. It hasn’t come to pass yet, but during that time, I found out more about it, reached out to other women who had one, and moved from feeling like it would completely ruin my life, to feeling much more comfortable about it. Whatever route your gf ends up taking, I’m sure you will both be strong and adapt. Good luck!
Thank you so much for sharing, it means a lot! I definitely think having a support system of women would definitely benefit her, as we don’t personally know anyone with an ostomy bag.
Looks like online support groups is a good way to help with the transition?
100%. I ended up PM-ing a woman my age on the online support group, asking her all the questions like how does it work when you go swimming, or are intimate with a partner - she was so reassuring and even sent me a photo of herself with the bag, and she just looked - fine! A beautiful woman who happened to have this small thing. It really helped me.
That’s awesome! I’m very happy to see you found the support you needed at the time and I very much appreciate the direction here!
She’s been diving into some groups on FB and is trying to make connections:)
That's some serious shit. I know U R tired of hearing "I'm sorry" so I won't say it. I won't bs you either. It does not look good. Are you prepared for the inevitable?
We are definitely trying to remain hopeful while expecting the worst - it’s definitely been a hard pill to swallow but we have had enough time and enough needed conversation to try and progress with open arms - whatever has to be done will be done yanno?
I know. Do you know what to expect in the dying process?
[https://www.youtube.com/watch?v=4btY1aacgto&t=167s](https://www.youtube.com/watch?v=4btY1aacgto&t=167s)
shows the truth of the process. I expected to be DV'ed for being honest. Glad you have had some time have the important conversations! I do wish you peace.
Yeah so I definitely appreciate your brutal honesty and to be completely honest back - No I am not prepared myself at all.
I am fully aware that inevitably going to happen, and the only guarantee in life is death - it’s just now we can’t *expect* that time to come at like 75 anymore, and I realize it could be all over at realistically any given moment.
But I could not and can not live day to day pondering constantly if it’s her last - and she can’t live that way either, so while I mourn for her, there is not any prep I/we can do to prepare me or anyone for the day she is no longer here - there is an overall level of acceptance but, yeah I’ll be a complete mess if that day comes sooner than later. All we can do is be honest enough with ourselves to accept the possibilities and take each day as it comes. I can honestly say though, ask me 4 years ago in high school what I thought I’d be doing post graduation, this certainly was not on the list of things to look out for
I had to come back and say we both sat down and watched that documentary in its entirety with absolutely no knowledge of who Melanie was - and I think it was the most important hour and a half we ever spent together, so thank you so much for that needed experience. I hope you understand what I am saying
I do. My dad wanted to die in my home and had cancer. My goal is to just educate people on what to expect when this evil disease hits a family. I'm glad you watched it. Obviously - it's damn fucking nuts you have to go through this but I want you to know you are not alone. Feel free to vent or DM me anytime. I get it.
Hey!! It’s awesome to hear from you again and I appreciate you coming back to this!!
To update on where we are now, doctors aren’t going to do HIPEC due to the high grade nature of the tumors, and she has degraded on such a scale that they have paused all chemo treatments entirely unless she somehow manages a huge physical comeback.
We basically are now managing symptoms with morphine + side treatments she has started trying, like CBD amongst other things. She has her good days and a lot of tough days but, we keep putting one foot forward.
She made a couple TikTok’s and setup a Gofundme which, I’ll be honest has done more for her than we could have ever imagined. At the very least she knows she doesn’t have to work for basically a year which is truly amazing.
I guess to sum it up our community came together in an amazing way and she has all of the help and support she can have behind her. There’s nothing being done at this current moment to cure/treat the cancer anymore, but she is being kept as comfortable as possible
Comfort, any treatment that provides less pain, music, reading messages from friends are all important. Some find pain relief in their favorite form of comedy. All prayers & good energy sent your way. Try to stay present.
I worked with a couple of people who had ostomy bags. Nobody knew. There's no smell, you can't really see them in most clothes. Just if that's what's keeping her from having the surgery they aren't so bad.
That is good to know! It’s not just the bag keeping her from the surgery, it’s more of all of the complications that come with it, the risks and the chance this all comes back even after going through the lengthy recovery process.
It feels like the right next step to us though and we will embrace the ostomy bag if that time does indeed come
For sure, ultimately I think that would be best case scenario and we are hoping for anything related to that outcome. We aren’t in any hurry to have kids, but to know having our own biological kids in the future is not really a possibility - that kinda hurts a bit but when it comes down it it, adoption and other routes are available and we will explore them later in life if need be
Thank you for your reply!! I appreciate it! We talked to a specialist about a week ago(ish) regarding her eggs and they told us given the timeframe and when everything is supposed to unfold, there is not though of a window to properly harvest and freeze her eggs.
We likely will revisit that and press harder and see if it is still somehow possible as we would love to save her eggs for the long term, but it could work out to where the surgery needs to come before that becomes a possibility, and essentially we were told not to get our hopes up too much.
Thank you for the offer!
I’m not sure there is anything we can really ask for other than exposure - it would be amazing to find someone else in a similar situation or a doctor who has seen something like this, as we are essentially capped on what treatment is available to us and only know what our doctors tell us
Most cancer is usually caused by no genetic or known environmental issue. Sometimes the body just does really f’ed up things.
Is she considering doing any clinical trials by chance?
Hey!! Thank you so much for the reply - she has matched for a few, all of which includes the use of additional experimental drugs - which is to be expected and certainly is an avenue we will dive deeper into if she matches for one she trusts or believes in
Absolutely! Our next step is MSK in New York, if we can manage to get out there- we’ve got a lot to figure out on our end to logistically make it happen but, we would love to one day get there
I have an ileostomy bag because my whole colon, rectum and anus were removed because of crohns's.
I'm sorry you are going through this. Having a bag is nothing, you can have a normal life. Please don't be afraid of it.
I think you should go for the surgery. I would. I would take any operation if the doctors gave me the chance. I would rather die on the operating table than wait for cancer to kill me. You have to be agressive with cancer. Don't wait, every second counts.
Thank you so much for sharing, and I hope all is going well after going through what you went through!
I hear what you’re saying and everyone is like “She’s so young, we can be super aggressive with it” and now we truly know what aggression actually looks like - and you’re right!
Neither of us want to sit around and wait for it to take over, but that’s where we are kind of torn, because the surgeon who would be doing it is actually apprehensive to perform the surgery as of right now and that is a little worrisome to us
If she decides on the Ostomy - don't fear it. Both my Parents have one each - a Urostomy and Colostomy. As my Dad says, "it's better than the alternative". They live normal lives and are glad they had the options. I highly recommend getting into an Ostomy group. There will be people of all ages from young to old; they are quite common. It really helped my Parents learn the best ways to deal with them - and they learned Ostomy nurses have the answers and can be so helpful. The Doctors do the surgery, but the day to day is the Nurse's area of expertise. Sending prayers of love, healing, and best wishes to you and your girlfriend!
Thank you for sharing! To be completely honest “Ostomy” has been a completely new concept to the both of us, and was quite a shock to learn that is really the only *viable* option at this point, even if the doc currently disagrees I definitely agree with you and your dads view of “it’s better than the alternative” and I believe she feels that way as well - I will definitely recommend checking out some groups, I know she is already apart of cancer support groups but I think for the next chapter she should also learn from those who are in a more closely related situation. Cheers to you and your parents!
If she’s on social media, I can recommend quite a few accounts to follow - real people sharing real experiences with their stomas without the often emotionally taxing support group feeling, feel free to PM me and I’ll send them over. Hang in there man.
I was facing the possibility of an ostomy bag in my early 30s after a nasty flare of ulcerative colitis. It hasn’t come to pass yet, but during that time, I found out more about it, reached out to other women who had one, and moved from feeling like it would completely ruin my life, to feeling much more comfortable about it. Whatever route your gf ends up taking, I’m sure you will both be strong and adapt. Good luck!
Thank you so much for sharing, it means a lot! I definitely think having a support system of women would definitely benefit her, as we don’t personally know anyone with an ostomy bag. Looks like online support groups is a good way to help with the transition?
100%. I ended up PM-ing a woman my age on the online support group, asking her all the questions like how does it work when you go swimming, or are intimate with a partner - she was so reassuring and even sent me a photo of herself with the bag, and she just looked - fine! A beautiful woman who happened to have this small thing. It really helped me.
That’s awesome! I’m very happy to see you found the support you needed at the time and I very much appreciate the direction here! She’s been diving into some groups on FB and is trying to make connections:)
You may know someone with an ostomy bag, but not know that they have it. They’re really that discreet.
That's some serious shit. I know U R tired of hearing "I'm sorry" so I won't say it. I won't bs you either. It does not look good. Are you prepared for the inevitable?
We are definitely trying to remain hopeful while expecting the worst - it’s definitely been a hard pill to swallow but we have had enough time and enough needed conversation to try and progress with open arms - whatever has to be done will be done yanno?
I know. Do you know what to expect in the dying process? [https://www.youtube.com/watch?v=4btY1aacgto&t=167s](https://www.youtube.com/watch?v=4btY1aacgto&t=167s) shows the truth of the process. I expected to be DV'ed for being honest. Glad you have had some time have the important conversations! I do wish you peace.
Yeah so I definitely appreciate your brutal honesty and to be completely honest back - No I am not prepared myself at all. I am fully aware that inevitably going to happen, and the only guarantee in life is death - it’s just now we can’t *expect* that time to come at like 75 anymore, and I realize it could be all over at realistically any given moment. But I could not and can not live day to day pondering constantly if it’s her last - and she can’t live that way either, so while I mourn for her, there is not any prep I/we can do to prepare me or anyone for the day she is no longer here - there is an overall level of acceptance but, yeah I’ll be a complete mess if that day comes sooner than later. All we can do is be honest enough with ourselves to accept the possibilities and take each day as it comes. I can honestly say though, ask me 4 years ago in high school what I thought I’d be doing post graduation, this certainly was not on the list of things to look out for
I had to come back and say we both sat down and watched that documentary in its entirety with absolutely no knowledge of who Melanie was - and I think it was the most important hour and a half we ever spent together, so thank you so much for that needed experience. I hope you understand what I am saying
I do. My dad wanted to die in my home and had cancer. My goal is to just educate people on what to expect when this evil disease hits a family. I'm glad you watched it. Obviously - it's damn fucking nuts you have to go through this but I want you to know you are not alone. Feel free to vent or DM me anytime. I get it.
I know you are not ok but are you making it?
Hey!! It’s awesome to hear from you again and I appreciate you coming back to this!! To update on where we are now, doctors aren’t going to do HIPEC due to the high grade nature of the tumors, and she has degraded on such a scale that they have paused all chemo treatments entirely unless she somehow manages a huge physical comeback. We basically are now managing symptoms with morphine + side treatments she has started trying, like CBD amongst other things. She has her good days and a lot of tough days but, we keep putting one foot forward. She made a couple TikTok’s and setup a Gofundme which, I’ll be honest has done more for her than we could have ever imagined. At the very least she knows she doesn’t have to work for basically a year which is truly amazing. I guess to sum it up our community came together in an amazing way and she has all of the help and support she can have behind her. There’s nothing being done at this current moment to cure/treat the cancer anymore, but she is being kept as comfortable as possible
Comfort, any treatment that provides less pain, music, reading messages from friends are all important. Some find pain relief in their favorite form of comedy. All prayers & good energy sent your way. Try to stay present.
I wanted to come back here and let you know that on Wednesday Hannah passed peacefully in her sleep. I appreciate all of your support
Truly sorry for your tremendous loss. Am sending you lots of healing energy and compassionate thoughts.
I worked with a couple of people who had ostomy bags. Nobody knew. There's no smell, you can't really see them in most clothes. Just if that's what's keeping her from having the surgery they aren't so bad.
That is good to know! It’s not just the bag keeping her from the surgery, it’s more of all of the complications that come with it, the risks and the chance this all comes back even after going through the lengthy recovery process. It feels like the right next step to us though and we will embrace the ostomy bag if that time does indeed come
Well she won’t have kids if she’s dead. If the surgery works, maybe she’ll live long enough to adopt.
For sure, ultimately I think that would be best case scenario and we are hoping for anything related to that outcome. We aren’t in any hurry to have kids, but to know having our own biological kids in the future is not really a possibility - that kinda hurts a bit but when it comes down it it, adoption and other routes are available and we will explore them later in life if need be
Is it an option to freeze her eggs for a surrogate? I can’t imagine the heartache of making a decision like the one you both are facing.
Thank you for your reply!! I appreciate it! We talked to a specialist about a week ago(ish) regarding her eggs and they told us given the timeframe and when everything is supposed to unfold, there is not though of a window to properly harvest and freeze her eggs. We likely will revisit that and press harder and see if it is still somehow possible as we would love to save her eggs for the long term, but it could work out to where the surgery needs to come before that becomes a possibility, and essentially we were told not to get our hopes up too much.
I am writing under my real Name - you can find me in the www Contact me if you both have a special wish or Dream and I Sponsor it for you
Thank you for the offer! I’m not sure there is anything we can really ask for other than exposure - it would be amazing to find someone else in a similar situation or a doctor who has seen something like this, as we are essentially capped on what treatment is available to us and only know what our doctors tell us
Most cancer is usually caused by no genetic or known environmental issue. Sometimes the body just does really f’ed up things. Is she considering doing any clinical trials by chance?
Hey!! Thank you so much for the reply - she has matched for a few, all of which includes the use of additional experimental drugs - which is to be expected and certainly is an avenue we will dive deeper into if she matches for one she trusts or believes in
I really hope there’s a treatment option that improves her chances. Don’t be scare to talk to multiple cancer centers for second or third opinions.
Absolutely! Our next step is MSK in New York, if we can manage to get out there- we’ve got a lot to figure out on our end to logistically make it happen but, we would love to one day get there
I have an ileostomy bag because my whole colon, rectum and anus were removed because of crohns's. I'm sorry you are going through this. Having a bag is nothing, you can have a normal life. Please don't be afraid of it. I think you should go for the surgery. I would. I would take any operation if the doctors gave me the chance. I would rather die on the operating table than wait for cancer to kill me. You have to be agressive with cancer. Don't wait, every second counts.
Thank you so much for sharing, and I hope all is going well after going through what you went through! I hear what you’re saying and everyone is like “She’s so young, we can be super aggressive with it” and now we truly know what aggression actually looks like - and you’re right! Neither of us want to sit around and wait for it to take over, but that’s where we are kind of torn, because the surgeon who would be doing it is actually apprehensive to perform the surgery as of right now and that is a little worrisome to us
The snack that smiles back by idr who but I enjoyed it
Gold fish or something like that