G3T2N0

It is unfair, it is bloody unfair and just the luck of the draw. Many factors have to align before the cancer starts be they genetic or environmental or both. I have tied myself up in knots trying to work out what caused mine but some aspects are obvious - I worked in smoky pubs for 30 years before the ban and drove thousands of miles in diesel cars so that's the likely explanation. Conversely, my great grandma smoked all her life (Capstan no less), lived by the A406 North Circular Road in Wembley for 50 years and died aged 98.

Throughout my treatment, the three months of Gem/Cis chemo that pole-axed me, several infections along the way, then the cystectomy and five weeks in hospital where I was very sick post op and took a year to recover, my only goal was to survive and, I am sure, that determination carried me through.

My surgeon suggested I must be made of tough stuff to have survived what I experienced - certainly I come from a long line of tough family (naval dockyard mateys, navy stokers, road menders, canal fly boat folk)- but the reality is that we endure this treatment rather than fight some battle bravely or whatever military language you care to use as many do.

What is very clear is that, the patient is very busy dealing with the treatment but his/her family feel powerless to do anything to get their loved one well again. It is the most frustrating and distressing time for loved ones. My answer has been to focus on doing the things we enjoy most and get outdoors as often as possible, usually by water.

Once the treatment journey begins, you will be fully occupied and I recommend that you create and maintain a project file, either hard copy or electronic, so that you have a diary summary and record of all consultations, treatments, tests and so on. I found it helped to regard this as a project (that being part of my background) and I still have the file that I look at occasionally and think, job done.

You will have times when you could just scream the house down - do so, get it out of your system, shout out here on this forum if you wish, we understand. I used to walk along the river towpath telling the cancer to eff off out of my body, obviously it didn't, it was my surgeon that removed it, but it made me feel better!

CB

Thank you Crustybladder.  

Yes, smoking and diesel certainly have a lot to answer for. I’m glad diesel cars are being phased out.  As for cigarette smoke, I remember in the 70s and 80s  my dad smoking on long car journeys with me and my brother in the back of the car.  Unbelievable, when you think back.  My husband gave up smoking 15 years ago, so that may be it, although his mum had breast cancer (she was also a smoker) and his grandad died of lung cancer (also a smoker). As you say, so hard to know. We are definitely going to make changes in our lifestyle from now in, even in terms of the cleaning products we buy. Every little helps.

You sound made of tough stuff. It would definitely had helped you get through your treatment. Family genes are important for sure. Works both ways - for bad, and for good .  My husband is made of sturdy stuff, albeit a little over weight.  

It is good idea about looking at it as a project I will definitely do that and create a file today. Give us something to focus on and be pragmatic about . Dreading telling our family next week, but we need to do that before chemo.  

My husband says he wants to have some weekends away after the treatment finishes and before the operation. We’ll know the dates after tomorrow, hopefully.

Thank you so much again for replying. You don’t know how much it helps. X

Hope you feel bit better this morning xx  crustybladder is such an inspiration  and he writes beautifully i think he could write a great novel I can just imagine him walking along the river tow pathhouting eff off can you lol.. it's great to hear positive life stories even though it's been a really hard journey for them they have been determined to get where they are xx I told my 3good friendsyesterday about my diagnosis ...I could feel my insides shaking as I was talking about it (that seems to happen to me if i start talking about it  I don't know why) I told them I don't want phone calls and fussing I just want to carry on as normal ..I really dont want my life to be talking about bloody treatments and illness all the time .. maybe im trying to pretend that this isn't happening I don't know but at the moment I feel so much better mentally not dwelling on this gatecrasher that's invited itself into my bladder...  hope you have a nice weekend the weather here is quite sunny  today so I'll  be going for a walk take care xx

How are you feeling today ? I hope the positive stories on here are helping.Xx

Hi Hou,I joined this board so I didn’t have to talk about cancer to family and friends.It has really helped and I know my partner is glad.He worries a lot and although I can talk to him I didn’t want to burden him with medical stuff.I hope you get support from your friends.Mine have been good I just wish they were not all 200 miles away.My fault for moving around a lot.Enjoy your walk.love Jane xx

Hi Jane Winkers60  I do feel a bit more positive today, thank you. I love my husband so much, I need to put him first and what will be best for him, although it is hard sometimes. The positive stories on here definitely help. I keep coming back to them time and time again. X 

Hi Hou.  

Yes, Crustybladder is an inspiration, and I’m so thankful to him and others sharing their stories on here.

You were so brave telling your friends. I think it does make it more real, so understandable you were frightened.  Good to tell them what you need. They will understand

I’m going to join Maggies next week and go along to one of their drop ins and attend their bladder cancer group the week after next. Amazing the charities and support groups that exist out there for those in need. Restores  my faith in this world. X

Thank you for your ongoing support Jane xx if I do need to talk about any problems I know my friends will be there to help now that they know xx the help on here has been great from the first day you find out and ongoing through different tests and procedures you realise you are not alone in this and that helps so much ..at first I was looking far too much in the future and causing myself so muchanxiety.. keep up the online counselling Jane you're doing a great job  take care I'll keep in touch love Tina xx

Thanks so much Tina,It doesn’t seem that long ago since I was on here scared and asking for help.xx

Evening everyone.  I have a question, if that’s ok?  My husband is saying that he still has a burning sensation when he goes for a pee. It’s been week and a half since the TURBT. Is this normal?

Thanks so much

X