Got my results - Oh my lordy lord! Translation required if possible please x

Hi Helen, 

I am sorry to hear you are going though it. I will leave it to more experienced members of the forum to feed back to you, as I have not had this diagnosis myself

What I can say is that it is very good that you are being seen quickly and that they are clearly working on a treatment plan for you, and your treatment is not far away.

Leo

I'm not surprised that you feel so disorientated, with such news to take in. As Leo says, good that they are acting quickly. In some respects, that's better than having loads of time to worry & fret about it.

Essentially they have detected a tumour that is growing into the muscle, with 2 different types of cancer cells. They will remove the bladder as well as adjacent reproductive organs. You might think that leaves a big void, but the remaining tissues (colon etc) rearranges itself to fill that up. They will make a stoma, which is a tube of intestine (ileal conduit) used to link to kidneys, on the surface of the abdomen. You will need to have a bag attached to the abdomen to collect urine.  

Plenty of us here have had the op & many also have stoma, so lots of experience to help you. I looked on my op as a sort of new project - organised entertainment and clothes for my recovery period, stocked up the freezer & cupboard with snack items and so on. You will need help at first with household chores & cooking. Recovery does take months in total, but although you will feel immensely weak and tired at first, you will gradually improve. The key is to eat little and often, drink plenty, and build up walking day by day. Very best wishes - feel free to ask any questions.

Hi Helen, just to say my heart goes out to you, trying to get your head round that devastating news. It is such a shock , and your thoughts must be everywhere. 
I cant help you with any experience of the Radical cystectomy , but there are many on here who have had it, some of them recently and are doing very well. I am sure they will be along soon to support you.

Take good care of yourself, sending you a wrap around hug

much love Angela x

Hi Aitch44 Helen

A lot to take in when you’re first faced with it but there will be lots of support in this lovely group. I’ll leave others with experience of bladder tumours to respond with their knowledge of those, but I have had the radical cystectomy, hysterectomy, bilateral salpingo oophorectomy and ileal conduit as part of an even larger surgery called a total pelvic exenteration. Phew…it’s all quite a mouthful, isn’t it?

I am just short of 4 years from my op, so there is life after such big surgery! Recovery will be long and can be tough, but you can get through, though it seems overwhelming at the time of diagnosis.

Please ask any questions you like, and there will be answers here for you. You are lucky in that you don’t have long to wait for surgery, although I’m sure you don’t feel lucky, but if there’s anything we can help with to support you, just ask.

Sarah xx

Hi Helen,We will all help and support you through this surgery.There are quite a few of us here who have been through it and are leading full lives post op.Love Jane xx

Hello Helen yes I had the same diagnosis and I am 79 I had a radical cystectomy (which is what you will having )’and now have a stoma yes you will feel very weak after the operation and it will take some time (I was told 6-8 months before I’d be back to myself. It’s 3 months since my operation I’m feeling much stronger and drove for the first time yesterday as for my stoma I manage it really well the stoma itself has no sensation so it won’t hurt and honestly I wear my ordinary clothes including leggings and it’s barely viisable. Last Monday I was given the all clear and will be followed up with scans in a few months time.  You really are in the best hands and I promise you there is life after this big operation sending you love 

Thank you Angela, I needed that HuG  

Oh Jane, for the first time I can feel a glimmer of hope x I've gone from being in a dance troupe & living a hectic wife/mum/Nana busy lifestyle to wearing the maximum absorbency pads...& wanting to swear loudly each time my bladder spasms! The pains I keep getting are so hard to describe-from a dull ache to a raging 'tight' ball that's churning me apart inside. 

But now there is a gentle light flickering in the distance-Stories of fulfilled lives post op' will keep me open to success instead of focussing on failure x

Thank you  

Gosh, yes! After my RC age 57,  I went back to my demanding commute & job (part time), did belly dancing on stage (in panto), and 12 years on still do AmDram, my usual home gardening, decorating, fitness classes etc. 

It is all absorbing now, but this time next year it will be a new normal & eventually the surgery & recovery will seem a small episode in your life. Best wishes.

I’m glad you are feeling more hopeful.You will be free of the bladder pain and spasms soon.I was back light gardening 3 months post op.There will be plenty to enjoy once you have recovered and having a stoma shouldn’t hold you back.Love Jane xx