Hello I’m new here!

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I was diagnosed with a rare aggressive cancer & now 8 weeks post surgery following a radical cystectomy!

Recovery is a bit of a slow burn!

Anyone else finding recovery slow!

im now waiting to start chemo!

  • Hi Millmount,Welcome to our friendly group.How are you feeling after the cystectomy ? The first few weeks post op are usually the worse.It does get better but it can take time and the recovery is slow.It’s best to eat little but often and to build up your walking distances gradually.It’s important to listen to your body as it will warn you if you are doing too much.Rest when you need to rest.It is frustrating but you have to go with it.I found taking up a hobby was helpful to pass the time as I got better.I did a lot of family history and art as they didn’t require much energy.Hopefully you will start feeling stronger soon.I hope you find the group helpful.There is plenty of support and advice here.Best wishes Jane 

  • My husband is so

    unsure about this operation he has cancelled 3 operations he’s stage 3 T2 to date we are seeing consultant tomorrow to discuss his options 

    have a good day hope you continue to improve 

  • I remember it well from 12 years ago. Winkers has summed up good advice. I'd just add that emotions can be very up & down for a while yet. Hope the chemo goes well.

  • Hi Smee,Welcome to the group.What Is troubling your husband most about the surgery ? There are a few of us on here who have had bladder removal and can help with any questions.I hope the appointment goes well tomorrow.Best wishes Jane 

  • Hi thank you for your reply It’s accepting the stoma and after pain 

  • You do get put on strong pain relief post op.I haven’t found life with a stoma difficult but appreciate that others may struggle with this aspect of the surgery.I hope the consultant can offer some guidance.

  • Hello Winkers60

    thank you so much for your reply & advice.

    Im still feeling pretty exhausted 8 weeks on & know it’s my own impatience to get back to where I was. I won’t say where I was before surgery because I endured 14 months of relentless infections & pain. So we’re talking getting back to pre March 23! 
    I do try to rest in between working & walking the dogs & I have lots of help so I’m very lucky. 

    Some days I have to concede & do nothing! 
    Im sure everyone here has been in the same position at some point or still is.

    im happy to talk about and share my journey with anyone that may find it helpful 

    xx 

  • Hello Smee. Thank you for your reply & kind words. I assume your husband has also been offered radical cystectomy. 
    To be honest this came as quite a shock following diagnosis & im not sure which I feared most! It was a lot of information to absorb in one go &’to a degree I think I underestimated the scope of the surgery. That said I am now free of the pain that I lived with for 14 months & that in itself made it worthwhile. Has he been offered robotic surgery, whist still a big procedure it is better than it’s predecessor & greatly reduces the amount of time spent in hospital.

    I think I read further down the thread that he is struggling with the stoma & afterpain. Initially I had no afterpain as the ICU team check regularly & if you are experiencing any pain they will deal with it. In terms of the stoma, well, that was a huge hurdle for me. It actually caused me greater upset than the cancer, I am slowly learning to come to terms with it. It’s here now & so am I. My surgeon, who is not a man to mince his words made it very clear I had no choice given the cancer was a stage 3 with spread. 
    It may be worth discussing the possibility of a neo bladder. Sadly it wasn’t an option for me but worth asking the question.

    I hope the appointment goes well, this is a very stressful time for you both! 

  • Hello Teasswill

    Thank you for your reply & kind wishes,

    You are quite right, emotions are all over the place! Today has been one of these days! Such a roller coaster. I naively thought after surgery I was going to walk out of that hospital clean & green! Well I got that wrong, I could barely walk!! The chemo is now playing on my mind & messing with my sleep! What sleep?? 
    I’m assuming (correctly hopefully) that you are now ok? 

  • Hi Millmount,I’m glad that you are free of pain after so long.I had the same problem with constant infections and pain and it’s been much better without a bladder.It’s still early in your recovery and hopefully you will feel less exhausted soon.I think we all struggled with the slow recovery and the frustration when you want to get on and you can’t do much.Good to hear you have some help if needed.Love Jane x