Haven’t told my children about my cancer yet how do I go about doing it they have just turned 21 & 18

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Hello and thank you for accepting me into your group.

Ill give you a quick insight to my dilemma. I was diagnosed with non invasive bladder cancer last year in April 2023. I live in a tiny village outside of Milton Keynes and gossip spreads like wild fJoywer so I’ve told no one as don’t want any one mentioning it to my kids and it’s tearing me up inside having to lie to them.. Now let’s make this letter about me for a while JoyJoyJoyJoy(that was a joke)

I was born with bladder and intestinal extrophy in other words my inside were on the outside at birth. I’m now 58 (today!!!) and have been many a urologists nightmare as nothing goes right for me. I’ll stop waffling and get to the point.

I have an augmented bladder 90% made from bowels. I was told shortly after my initial diagnosis that chemotherapy would not be an option for me and id have to lose my bladder and a kidney and due to having many many major surgeries my stomach and the sling have now become embedded into my stomach and abdominal muscles so they have actually become apart of me Rolling eyes I had let the sling be put under my bladder as it prolapsed a few years ago. Apparently im not eligible for chemotherapy as they feel the bowel part of my bladder with soak up the bcg fluid as that’s what a bowel is designed to do. So since my diagnosis I’ve been going into hospital over night to have a turbs maintenance every 2-3 months and it’s becoming a pain and depressing.I’d  decided to take this route as I’ve been in hospital a lot over the last 3 years for urological issues and spinal injuries issues. And i am a single parent who’s ex partner has no contact with me or our kids and we moved to Milton Keynes 16 years ago to give my boys a better start in life.This has meant my youngest human has missed a lot of school whilst I’ve been unwell and getting these little gremlins burnt out of me. Before you start to judge me he started school in Milton Keynes but we moved to just outside Wellingborough to a bigger house 6 years ago in a very very rural area, but he stayed on for 6th form and moved into university on Saturday. There is no school or even bus service that could take him to school so super mummy spends over £100 per week to get him to and from school. I just needed him to finish his a levels and get his university place before I could even start to worry about myself.

omg I’m still waffling l will try to be quick.

So for over a year now ive had to mentally come to accept the fact im going to have to wear a stoma bag for the rest of my life but at least ill be alive for a little bit longer , I hope Rolling eyesJoy

i used to wear a bag as a child and hated it and after my first bladder augmentation I vowed never ever to wear one again. A few years ago I had 2 temporary bouts of wearing stoma bags which cut my love life into a zillion pieces and my confidence into a zillion trillion billion pieces.

i

Hope you’ve held on I’m nearly at the end. Ok so I’ve been told my only option is to lose my bladder and apparently they take a piece of your lady fufu parts away aswell, lucky I’m single tthenJoy My urologist surgeon has said he’s done a copious amount of research and he can’t find anywhere about any I being in the position I’m in now and if bch even works in a bladder like mine. Looks Joyke I’m a super starJoyJoy They even reached out to the manufacturers that make a certain brand of bcc that uch use , and they were advised not to use it directly into the bladder. My oncSobogist has come back to me and said the exact same thing. So they left it in my court till I’m ready to face the inevitable. Well what I needed to accomplish has been done. My baby’s got his place atSobhe university he was desperate to go to and he got amazing a level results even though he missed a lot of school because of me and that’s a guilt I have to live with for the rest of my lifeSob. Then I made another excuse to delay telling them the inevitable my boys turned 18 and 21 and they are literally 3 weeks apart and my birthday is now i suppose as it’s 3am Clock3 . This was another reason I used not to tell them. It’s a blessing that he got to the university he wanted to attend as it’s in London and my hospital is the uch also in London so I can see him and his brother regularly as my eldest is also in university in London so that will help a lot with my stress/anxiety levels. 
Now after all that can anyone advise me on the best way to tell my boys. We’re really, really,really close. There dads left before they were born even thought they were plannedRolling eyesRolling eyes

They are the best sons ever and a few times I’ve come to say something and I’ve stopped myself as I feel I’m getting very very tired lately and I know the kids have noticed something is up and I know my younger human thinks I’m being lazyJoy.As I’m very house proud but have not had the energy or will to clean, which is not like me.

i burst into tears every time I think about telling them. I’m in my bedroom a lot more lately it just give me 5 minutes to scream and cry into my pillow without them hearing me.

My oncologist has offered to make an appointment for the 3 of us so I can tell them with his support and he can answer any questions they may have. They both know this Dr and like him. They think I come in so often to have bladder stones removed. I hate lying to them and I’m battling with myself as lying is a big no no at home.

My second issue I need advice on is has anyone got a bladder made from bowel whose also been impregnated with cancer and if so what was your treatment plan

Im so so sorry if ive kept you up all night reading my mini novel.

Any advice is desperately appreciated and needed

  • Good Morning  and welcome to the group, although sorry to hear what you have been going through. Good to know your children are doing well. Youngsters can be smarter than we give them credit for and they may already suspect all is not well. I found that once I told our kids about my situation, they became very supportive. No need to go in to great detail to start with and just bring them up to speed as you go along. It will do you good as well telling them. Macmillan has produced some good information on talking to children if you click HERE . Lots of people here are living without bladders and would be able to answer any questions about that. Best wishes.

    Best wishes to All,   rily.

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  • Hi

    Welcome to the group. My you have been through the wars to say the least. Franky, I'd tell your family and use any help ie, the doctor to help you unburden yourself.  My family were fine about the whole situation and were very supportive. 

    Now as for being judgemental, I don't think you'll find anyone on this group that will sit in judgement. We all have different circumstances and demands on our lives and have to make difficult choices, so I doubt very much that anyone will sit in judgement, far from it!

    Now as for the stoma, well your a lot older and appliances are probably a lot better. I really don't have a problem, but I did need to readjust and if you need further advice, please ask.

    Now come on here anytime, no matter what you want to ask, or if you're just feeling low, or want a chat. Don't be a stranger.

    It doesn't matter where you go, there you are
  • Hi JJsmummy 

    I have Two sons both which are both only a year older than both of yours I found my Lads took it quite well and talked to me about it openly asking questions and things which if I could provide the answers I did they have been supportive my youngest especially as he is at home more than his brother they are both away at university you see I would just bring them upto speed if you feel now is the right time they may surprise you and things will bit a bit easier for you once they know what’s happening with Mum 

    Ste 

  • I only have a reply for you regarding your sons. Be absolutely honest with them. As a parent we want to protect the ones we love but to be honest they probably already have an idea that something is not right. So tell them. The questions will come & just answer as honestly as you can. If they ask if you're afraid, tell them the truth. This is a fight you can all have together.

    Much love to you & your Sons in thus enormous fight. 

    Kimdav

  • Also my husband has a neo bladder, which he has recovered really well from. You need to speak to Tessawill as she is a female. With this xxx

    Kimdav

  • Sound advice

    It doesn't matter where you go, there you are