New diagnosis

  • 14 replies
  • 92 subscribers
  • 1086 views

Hi all, just received the devastating news that my husband has aggressive stage 4 bladder cancer which is incurable but can be managed with chemo or radiotherapy.  Still to get oncology appointment.  Waiting game is horrendous.   Feel so helpless and overwhelmed. 

  • Hello there, sorry you have the need to join this group. No wonder you are feeling that your world has turned upside down. Good news though, that they are contemplating treatment - hopefully you will get more useful information at the oncology appt. It may be worth also seeking a local support centre eg Maggies - often attached to a hospital. 

    I hope you have friends and family to be supportive, but feel free to speak openly here - there's always a sympathetic ear. Very best wishes to you both.

  • I’m so sorry to hear this.I hope the oncology appointment comes through soon.We are all here for you both,it’s a supportive group.Best wishes Jane 

  • Thank you. I have very elderly parents to care for too and ill health myself so this will be a very challenging process.  Best wishes to you too.

  • Thank you. I do hope so as he's already getting symptoms back after very invasive turbt and turp procedures 3 weeks ago. Best wishes to you too

  • sorry to hear about your husbands diagnosis . I was diagnosed with stage 3 aggressive bladder cancer in April  2018 and was given Chemotherapy for several months, They also talked about Radiotherapy and Surgery. In the end I settled for the surgery which was a Neo Bladder not a Stoma bag. The surgery all went well and I'm now almost seven years on and no problems. I go to the gym 3 times a week also play golf as much as I can ( not very well )and travel as much as I can. At the start of my treatment I was really down and life was not easy but it got better. I hope my story will help you and your husband see thing a little differently and I wish all the best for the future.  

  • Thanks for your informative reply which is encouraging and so pleased chemo etc made things  better for you. Best wishes 

  • Dear Scotlass, I am sorry to hear your husband's news and also about your own health problems as well as aging parents. You clearly have a lot on your hands.

    I had bladder cancer aged 70 and after chemo and surgery am symptom free two years later. My treatment etc caused my whole family a lot of worry, especially as at one point the doctors  cancelled my op and it looked as though it might not be possible. I have contemplated being in your husband's position and was frightened.

    However, since joining this forum I have seen posts from people who have been treated with chemo and or radiotherapy alone who seem to have been kept stable for years and who are living life on their own terms. So I hope they will be along soon to reassure you.

    If your husband's oncologist is like mine they will tell you frankly what they propose to do and you can ask them questions easily. Mine seems to take the chemo, and quarterly follow up since, very personally, fighting on my behalf to control the cancer and I do my best to follow what she says I must do. We are a good team. I hope your husband will have a similar relationship because it helps a lot.

    I imagine radiotherapists are equally committed to their patients. My surgeons were too.

    Your parents are likely not much older than I and husband (he is now 81) and I can tell you that our generation is tougher than we might seem. Apart from anything else they will probably have known others who have been seriously ill and understand what is going on.

    I am more concerned with you. Having to watch one's spouse being ill and frightened is extremely hard, because you can't do much more than sympathise. And in some cases that feeling of powerlessness can make one ill as well.

    Coming on top of your own health problems you must try and take good care of yourself. Making sure you have what you need is essential to your husband's progress. My husband became ill from the stress of having an ill wife, so I have seen this in action.

    If you feel overwhelmed I suggest you ring the Macmillan helpline and talk to them - they know a lot about cancer and how it affects families.

    Good luck with discussions with the medics and subsequent treatment. I hope they arrange them soon. 

    All the best,

    Latestart

  • Thank you for taking the time to reply with such detail, support and kindness. It means a lot and I really hope the ongoing treatments whenever they start help in some way.  He is late 60s so still relatively young.  I will contact help line down the line when I know what exactly is happening.  Thank you again and glad the treatments helped you. Best wishes 

  • Is there anyone to help you out with your parents ? I know how hard it is to care for someone when you have health problems of your own.I was my late disabled mother’s full time carer for nearly 16 years which was tough when I got cancer.You will have to think about your own health as well as your husband and parents.It’s extremely challenging if you have limited support.I only had my sister who works and my disabled partner but we came up with a plan that enabled us all to get through it.I also got help from social services when mum came home from respite care.Do think of yourself,it’s not being selfish.Best wishes Jane x

  • Hi thank you for replying.  My sister doesn’t live locally so just me directly involved with my parents. Dad is in a care home and seems content enough. I think we will all need to have a conversation about this situation and once we see oncologist might have a better idea of what is ahead.  Hoping there might be support advised at that stage. It’s all just so overwhelming and scary.  Best wishes 

1 2