Hello, it's great to be here - I think!

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Good afternoon, so my first attempt at this. Diagnosed with small cell neuroendocrine bladder cancer. Chemo1 down, chemo2 delayed due to white blood cell count. My fiancée and I are coming to terms with a limited time together.

So, what next. Anyone else dealing with what is apparently a rare form of bladder cancer? Looking for experience or words of wisdom from others who are dealing with bladder cancer.

I am relatively young (53), and lost my wife to breast cancer in 2016. I will be survived by two girls (in their early 20's) and my wife to be, who also has worries about life after (trying to hold 2 families together whilst working and dealing with loss).

Apologies, as I look through this message, I just see ramblings. I hope they don't scare anyone or produce eye rolls, that's not my intention. I have never done this before.


  • Hi You are not rambling, you can express your self, openly here, we all do.

    I am sorry i do not have experience, of bladder cancer, though, others may do, and will come in, at some point.

    Yes delay in chemos, do happen, though you have started, and things will fall, into place now you have your plan.

    You will be made, to fill very welcome here, every one, supports each other, As we truly know what another, is going threw,

    Just wanted to welcome you, so you know , there are others, out here, xxxx

  • Hi grumpyparr (you don't sound grumpy!) you are facing this head on! with lots of concerns thrown in, understandably.

    I don't have any knowledge of your cancer but hope you get support from this group. We all listen to another taliking about our different treatments etc and I've picked up some helpful information along the way.

    And you certainly haven't scared us as we all have a story to tell of the set backs and the positive forwards. So do hope you will continue to be with us and 'be real' and say it as it is.

    Best wishes to you and your family

    Judy x

  • Hello  welcome to our little group, but sorry you find yourself here. Well done for making your first post! That is often the hardest part, but do not worry, no eyes rolling here! 

    Although you may not find anyone here with the same cancer as you ( I have a rare cancer and very rarely connect with anyone with LGESS like myself ) you will find lots of friendly help and advice from lots of people who really do understand what you are going through.  I am sure as well that lots of people here know what it is like to have chemo sessions stopped or postponed due to blood counts. 

    I am a similar age to you ( I turned 54 last week) and sorry to see you have had to go through a loss of a wife due to cancer. This must be tough on your girls, they are still a very young age. Please make them aware that support is there if they need it. The Macmillan support line is open to all people effected by cancer on 0808 808 00 00. 


    Try to be a rainbow,in somebody else's cloud
    Maya Angelou

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  • Hi Grumpyparr , firstly welcome to our group, you'll find lots of support and experience of treatment even though we all have various cancers, plenty of advice on how to cope with side effects. Once they sort your bloods out it will probably start again. Your family will be worried amd scared, maybe a little  counselling could help them. Please keep posting xx


  • Hi Grumpyparr and welcome. You have taken the hardest step and that is posting your first post! Most here, including myself, lurked in the background for a bid, just reading the posts before we got brave enough to post, so well done!

    You certainly don't seem Grumpy, as Judy (MSG23) has said but even if you were grumpy, no one here would blame you. You have joined us all of this roller coaster that is cancer and it is full of appointments for scans, bloods and discussions at the beginning but when you start on your regular treatment, once the blood starts to behave, you will soon get into a routine!

    Good luck on this roller coaster but I can assure you it does slow down after a while. We are all here to help and support one another and this is what this Group does best! Please keep us posted with what is happening!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Morning Grumpyparr

    Just wanted to say hi.

    We don't do eye rolling here, we do, and are allowed, to ramble, shout, scream, cry, rant and everything else in between. There will always be someone here to listen.

    Again i have no knoweldge of your cancer, but if you put it in the search at the top of the page { you probably know this already.. sorry } you may find others/answers that way.

    Cat x

  • Hi Grumpyman

    I just want to say hi and to send you a big hug. Like the others I don’t know anything about your cancer but I hope they’ll be someone along who does. However most cancers seem to have similar treatments so there will be someone going through a similar process to you. Welcome to our little family

    love Jac x