More than just cancer

Just been to see Dr. Not good news I know I have vulva cancer had 3 lots of chemo and had more scans and biopsy so just been back to sort out next steps or so i thought, but no, more bad news. Been told something on my lung so got to have biopsy on that now too. So 2 more weeks or more of waiting. f that comes back OK got to have a 8hr plus op. Got to looses bladder part of bowel so will havev2 bags but I have a kidney transplant so saying they want to move my kidney as well and then that could mean it might reject after all these years so could end up on bloody dyaslsis what the hell do I do??????

Ive really had enough of all this I don't drink smoke take drugs etc so why me again. I'm so angry

Sorry I know others have had it bad too just need to rant

  • Hi 

    I'm sorry to read everything you're going through and it's perfectly okay to come here for a bit of a rant.

    I did wonder if you meant to post this in the vulva cancer group and, if this is what you meant to do, clicking on the link I've created will take you straight there.

    When you feel up to it it would be good if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    x

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  • Yes I did mean to putvitvon vulva group don't know how to move it but thanks for the reply xx

  • If you click on the link in my previous reply to you it will open up the vulva cancer page. You can then copy and paste your post from here into a new post there.

    I hope this helps but come back if you need any further help.

    x

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  • Hi  and welcome

    I haven’t had vulva cancer but I had cervical cancer and had huge surgery more than 2 years ago where I lost among other things my bowel and bladder, so I do have experience of living with 2 bags. I’m sorry to hear that you have other issues which make everything more difficult for you, especially in terms of your kidney. The surgery is tough enough without added complications.

    Just wanted to say I understand a bit about what you are facing, and here to chat if you need. I see you have also joined the stoma support group, which is a good place to ask advice. I pop up there too. You will be reeling from what seems like all bad news at the moment, and you’ve got a lot to take on board and process, but I hope you’ll keep posting and that the community here can help you through.

    Sarah xx


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  • Thanks Sarah for the reply, want to ask questions about it but also don't really want to know. I'm 52 and worried about the impact its going to have on me not just physical but emotionally. Everyone keeps saying we are here for u and i know that but its not them having it done and if u say this it's sounds like  im being horrible. I've been through a lot with my health and got through it and I.know ill do this thankfully I'm a strong person and stubborn and I have no intention of this being any different but I jus don't want the bags. Daft as it sounds I could deal with the bladder one but not the other. X

  • Hi 

    I have always thought of the bags as my lifesavers, because that’s what they did-saved me. No-one wants to have bags of course, but they become second nature very quickly. Physically it is very tough surgery and I won’t lie-emotionally it is very hard too. I didn’t ask questions because I didn’t want to frighten myself out of having the surgery, so I went into it kind of blind and thought I’d just deal with it afterwards, so I get what your saying. But you say you are a strong person, so this will help you. 

    It’s interesting that you feel you could cope with the urostomy but not the colostomy, because I feel completely the opposite! The colostomy is much easier to manage, and I use a really neat small bag. It’s easy to clean and change. The urostomy takes a lot more managing in my experience-I need a lot more products, it takes longer to change and is more awkward because it doesn’t ever stop. Don’t make assumptions before you have them, because the reality might be very different! You learn to deal with them both very quickly. 

    I had my surgery when I was 57, so a bit older than you and I’ve just turned 60. The bags are part of my life and don’t stop me doing anything-I still travel abroad, take long haul flights etc. They don’t define me, and they don’t stop me living my life. I just don’t go to the loo in the same way as everyone else. 

    Please feel free to ask any questions, and I’ll try to help if I can.

    Sarah xx


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  • Hi. Sorry had a busy day trying to do stuff while I can lol. So thanks for the reply itvwas helpfull.

    I think because I've had problems with my kidneys and had bags draining from my kidneys for long periods of time is why i will think i will not struggle so much with this, but I'm a bit of an old school i guess whe it comes to the other one and have a bit of a closed mind as judging before I know all the facts. I can see what u are saying though about this one being smaller and not needing as much attention. Like u say I shouldn't judge yet.  

    Might drive u mad with question hope that's ok xxx

  • Ask as many questions as you need-it’s fine! Try to keep an open mind as much as you can -I don’t think anyone can really prepare you for what life is like with 2 bags, but maybe some advice from experience can help. I spoke to people with 2 bags before I had my surgery, but still didn’t truly have any idea what it meant. It’s very hard. But now I manage really well so all is good. It’s not as bad as you may imagine! 

    Sarah xx


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  • Hi Sarah21

    weve spoken before but now I’ve got my proper diagnosis. I’ve got Vular cancer. Don’t know if I’m spelling it correctly. 
    The doctor has offered me a Pelvic Exenteration if it’s not spread anywhere else but I have to have my lymph nodes biopsied first. I’m am very keen to have this surgery but everyone is saying that it’s a massive undertaking which I know but if it’s going to save my life then I’ll do whatever it takes

    if you have any information on this I’d be grateful if you could pass it on to me. 
    speak soon 

    take care of yourself 

    lots of love Heart️ 

  • Hi 

    I had a total pelvic exenteration more than 2 years ago now, so yes, I know quite a bit about it! Yes it’s massive surgery, but I considered myself luck to be able to get it as they won’t do it if there’s spread outside the pelvis. 

    It definitely saved my life and I’ve never regretted it. My story is in my profile if you click on my name. I’m happy to answer any questions if I can-let me know what you feel you’d like to know about.

    Sarah xx


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