Maddy the Bladdy Review

Hi Giziecat. Sorry to hear it sounds as though you have a recurrence. The bladdy is not behaving itself. Anxious wait for you for test results. Can't help with your questions. Hopefully somebody can, but just wishing you good luck going forward. Best wishes. 

Hi Rily

Who knows I could be growing the odd something while I reply.

My nurse needs the tests ready for the consultant to arrange RS.

thank you for reading be safe

Hi Giziecat,If you do end up having Maddy removed then there are different makes of bags to try.The night bag plugs into the day bag.I’m sure the stoma nurses can advise you on the best type of bag if you have an allergy to plasters.For me it was easy to adjust to having a stoma.My bladder was severely diseased before cancer so it was no loss having it removed.I’m still able to do the garden and lead the life I had before.There is plenty of advice and support on here if you have a urostomy.The recovery process takes a while usually a few months and for some this is the worst part as it’s slow.Best wishes Jane

Hi Winkers60

so sorry late reply, I’ve been trying on and off a few weeks but couldn’t access the group not sure what happened 

Thank you for your support and yes I’m on the road preparing for surgery RC

Today my CT Scan with Thorack and bladder with contrast dye

16th Sept my pre assessment and fitness test.

I need to swap consultants as I’ve asked for the robotic surgery but I was told that depends on my results, tests, etc so I’m crossing everything.

My turbt in June removed the papillary shown by flexi but within the 3 weeks waiting for turbt I had grown a 1 cm CIS so no more chances left for Maddy we have to part.

Funny as the consultant insisted with me in March I could never go low grade to high, I explained to him in the five year journey I started high risk, then low risk, then high risk then back to low risk while on BCG once they stopped my theory was I didn’t have that managing the level of risk so Maddy was solo.

My oncologist nurse was not pleased he had said that to me so once our discussion was over she had a few words about the conversation while my daughter was present which in her eyes was belittling and un helpful 

I also reminded him Never say Never as I’m the living proof

I hope your well and if you have any tips for me before surgery or after I’m all ears and enjoy your holiday weekend.

much love Lorraine x

Hi Lorraine,Good luck with your fitness tests and pre assessment.I hope you can get the robotic surgery.I was told to get myself as fit as possible before the op.Pack loose fitting clothes to take in as it’s usual for the stomach to be swollen afterwards.I’d also advise taking in some sanitary towels in case you have any post op leaking/bleeding.Not everyone gets it but I had it for some weeks afterwards.It’s important to shuffle/walk to get the bowels moving.You may be asked to bring in sugar free chewing gum as this helps to stimulate the bowels.They will give you plenty of pain relief if needed.Love and best wishes Jane xx

Hi Winkers60

Thank you very much for those tips as I’ll be going into the unknown and advice and information is really key.

may I ask did you have the robot surgery ? I’m very curious how all the body parts are removed though keyhole.

If you think of anything else that will be helpful please feel free to message me 

much love 

Lorraine x

Hi Lorraine,I was scheduled to have all robotic surgery.The body parts are removed through the vagina in women.Before the op the surgeon said that very occasionally he had to revert to abdominal surgery.When I came round I had an abdominal scar as well as the robotic.It turned out that the tumour was much too bulky to take out via the vagina so it was removed via the abdomen.It is usual to be taken to intensive care following the surgery because it’s a big operation.Once they are happy everything is stable you will be moved to a ward.I spent 9 nights in hospital.You will feel tired and weak to begin with.It’s a good idea to have someone to be with you for the first few days when you come home.Love Jane xx

Aww thank you I did get told I’d go to intensive care also if they come across complications I will have surgery as well as robotic.

I also was told the blood loss is heavy and the infection rate after is a possibility which I know the risks need to be shared.  However the risks of not having surgery in my mind will be far higher so as you mentioned I’m building up my fitness as I know it’s goi g to be important for smooth recovery,

Im very grateful for you sharing with Jane it means a lot.

love and lite always 

Lorraine x

Hi Lorraine,They gave me strong antibiotics via a drip,I think that is probably standard treatment afterwards.I didn’t get an infection but my bowels didn’t work at all.This is not uncommon.I wasn’t warned about bleeding and I did bleed quite heavily and continued leaking for some weeks.The other thing they didn’t mention is leaking anally and that went on for a long time but others on here had the same.I found the recovery worse than the surgery because I was on my own during the pandemic so I got depressed.Finding an interesting hobby helped a lot.Love Jane xx

If your local hospital has a Maggies Centre, I recommend a visit to talk with them. I had a radical cysectomy in January & can help with any specific questions you may have about that. You can speak to a Stoma nurse to look at your plaster allergies & maybe try a few test bags to see how they affect you. The night bag is an additional larger bag that plugs into your regular daily bag to give extra capacity. I change my daily bag every other day.