Hello, I'll be joining shortly!

I'm waiting for a date for surgery - a cystectomy with urostomy, to hopefully rid me of the bladder cancer that originated in a kidney, that has already been removed.

Whilst I will no doubt have lots of learning to do to come to terms with the new arrangement for getting rid of liquid waste.

My main concern in terms of how this will impact on my life, is will I still be able to play golf with a stoma bag, hopefully securely attached to my body? Prior to the last year of health issues, I was playing 2 or 3 times a week. After the kidney removal and adjuvant chemo, I eventually got back on course, and was regaining my previous performance level.

So this latest set back is a major blow, stopping me from doing my main leisure pursuit, and obviously there is a concern that this may not be just a temporary cessation, if swinging a golf club is not compatible with maintaining a leak free status!

  • Hi KidneyBean

    I've got an ileostomy so mines a different bag (excuse my pun)
     I had a big operation and have recovered well. The stoma nurses are amazing and can make sure you have the right products for the job. The bags don’t come off when swimming, showering or bathing, they’ll stay put. 
    I think your surgeon will advice you on how quickly you can return to golf and you will know when you’re able. The positive is you’re fit for the op by playing golf. 
    Good luck with the op.
    Keep us posted 

    Best Wishes

    Artsie Ann 

  • Hi,I’m sure you will be able to play golf once you have fully recovered.I had a cystectomy in September 2019.I felt better after 3 mths but by 8 mths I had far more energy.I had a couple of tiny leaks at the start but nothing since.Personally I have had no problems adapting to life with a stoma.There is lots of advice and support on the bladder cancer board if you would like to join us.Best wishes Jane

  • Thanks very much for your response, I had hoped that the last procedure (a partial bladder resection) would have got it all out, but the tumour had invaded the muscle, so apparently Radio and/or more Chemo therapy were not likely to provide a complete solution. So, although it's not what I want, it has to be, if I am to have a long term future! So getting back to my golf is the incentive I have for recovery.

    I will be Captain of the Golf Society next year, and Captains day is in mid April, so my goal is to be back playing, ready to try and win on the day!

    KidneyBeen

  • Thanks for your response.

    I had quite a bad time immediately after the kidney removal surgery. Got back reasonably well after several weeks post op, then the chemo nearly killed me after 3 out of 4 cycles. Ended up in hospital for 2 weeks, while my blood cell count was rebuilt.

    So I'm not looking forward to the next round, which will be even more radical. But it seems there is no alternative,  so just got to grin and bear it. 

    KidneyBeen

  • Kidney Bean 

    I do like name choice.
    Sounds like you’re doing really well.

    I was lucky not needing Chemo but I would have gone for it whatever. We gotta through every weapon  we’ve got at  it. 
    stay strong 

    Best Wishes

    Artsie Ann 

  • Hi KidneyBeen,You have been through a lot already.I’m sorry you are facing major surgery again.It is good that you play golf as you will need to be as fit as possible.My goal was to get back to caring for my disabled mother.I also wanted to get back to gardening.I did manage to achieve both goals.Best wishes Jane

  • Hi KidneyBeen

    I have a urostomy after bladder removal and a colostomy for good measure! I cannot think of anything I could do before my bags that I can’t do now, for example for me it was swimming which made me nervous but it was fine. It can take time to find the right products to avoid leaks, especially just after surgery when your stoma is settling down and changing sizes, but once you’ve found what suits you, there would be no reason why you shouldn’t be back on the course. The bags stay put and there are lots of products out there to help with adhesion and the minimisation of leaks. Have that as your goal! Best wishes for your surgery.

  • Hello SarahH21 and thanks for your response. It's encouraging that all the replies are fairly positive! Obviously I have a long way to go once I get my date with destiny, with no doubt some trials and tribulations to overcome, before I can hopefully be as positive about the situation. Just got to keep reminding myself that the alternative of not having the surgery would lead inevitably to my demise!

    KidneyBeen

  • Hi KidneyBeen.

    I have a colostomy, so not quite the same as you. However, the principle is probably the same. I work at Wilko, so do a lot of heavy lifting, pulling and pushing of stock. I have had no problems and as SarahH21 said, there's nothing I could do before that I can't do now. I just watch how heavy things are a bit more just in case of a hernia. I  hope everything goes well for you.

    Kim

    Blackstuff
  • Thank you for responding. The waiting for Round 2 to happen, is probably the worst bit so far. I just want it done and over. I even said I'm happy to go in before Christmas, but expect it will be in the New Year, hopefully very early.

    The situation with the latest Covid wave is a worry, in case it somehow delays the procedure. I've been virtually housebound for weeks, to ensure I don't get an infection. That in itself is very frustrating, because I'm not unwell in any way, other than having the tumour growing inside me. If it wasn't for the risk of Covid, I would still be playing my golf and having the normal interaction with friends and family. 

    KidneyBeen