Newbie

Hi Jane and welcome to the group, although sorry to hear you may have bladder cancer. I am sure you will get lots of support here as you go forward. Firstly be aware that bc can be treated successfully. I hope  things do not have too much effect on your family. The CT scan is routine just to check nothing else is going and to give them a bigger picture of what they are dealing with. The TURBT (trans urethral resection of bladder cancer) is a fairly straightforward procedure, usually done in day surgery but prepare for an overnight. They will shave away the offending cells and take sample biopsies. The results will determine any further treatment. Lots of us have been through this so feel free to ask any questions. Best wishes.

Hi Jane, I feel very much like a newbie myself. I have had the turbt x2 and started bcg treatment today. I totally understand how you are feeling. This group is lovely and will be there for you in good times and low times. Much love to you Angela xx

Hi Rily,

Thank you for your kind response. It is good to know there is a safe space where I can share my fears and experiences with like minded people, who truly understand. It can be hard to discuss at home because I don't  want my husband to get upset. He has taken the news hard. I am trying to stay upbeat and positive for the girls sake. 

The youngest is autistic, so it is going to be a potentially hard road ahead.

I was told that I may get chemo, directly into my bladder after the turbo. Did you have this and how did you feel afterwards? I've read that it burns a lot when you pee. What's the best way to protect my Grandaughters when using the same toilet as me. I only have one toilet. Are antibacterial wipes and double flushing enough? 

It is good to hear from you. Thanks again x

Not turbo  That was my predictive. TURBT 

Hi Angela,

Thank you so much. Excuse my ignorance but what does bcg stand for?

Is it a chemo or immunotherapy treatment. 

I hope it went OK for you and you don't feel too poorly. Lots of love to you and to you too rily

Hi Jane, the bcg is the immunotherapy, I also had one dose of mitomycin chemotherapy into the bladder straight after the first turbt. I stayed in hospital overnight for that one because i had a very late in the day anaesthetic. I didn't need to be over protective of anyone because i had my own toilet and the lovely nurses helped me out. I took the advise of everyone on here and kept drinking water as much as i could afterwards. It meant going to the toilet a bit more and it did sting a bit, but nothing to knock me off my feet if you know what i mean. I was home the next day and just continued with drinking lots . This forum got me through the panics and down days, and taking one day at a time. I have kept it from my family and friends because there has been a lot of sad events happen recently and i think they have been through enough. My husband looks like a rabbit in the headlights but he is actually more sensible than i am. I know its a shock to you Jane but you will get loads of support here . Much love to you Angela xx

I am starting to feel less panicky already. What a great forum this is, really!! I thank you for taking time to explain things to me Angela. It's overwhelming when you hear all the terms of various treatments and procedures, without really having any experience of them. 

I am in a strange place mentally just now, I am eagerly awaiting my CT Scan and surgery, so I can start getting treatment to fight this, but at the same time,  part of me longs to stay in this normal place where I'm still able to do normal.

My poor husband is the same. He's shocked at the moment. He's a fixer and if he can't  fix a situation, he feels helpless. 

Love and thanks, Jane xx

Hi Jane. Good to know you are beginning to accept what is going on. The trick is to take things one step at a time. Do not try and think too far ahead as can things take different directions. Keep your husband in the loop in all stages and you will get through this. Share your emotions and accept his support . Best wishes.

Dear Jane, I'll have to keep this shortish, lots of great support from all here. My addition is re the autistic granddaughter. You may already know this, but a 4-word "mantra" I learned from an NHS staff training doc on ASD, is this:

REMENBER, PREDICTABILITY = STABILITY   Maybe you know this already, but mentioning in case it helps.

Since learning this to 'train' clueless medics treating my husband for bc and other things, I've learned I'm on the spectrum myself.

The 4-words can be put into effect like this for your granddaughter. If you will need xy treatment, appointment or whatever, let her know so she doesn't get any surprises, but avoid predicting what you cannot be sure will happen, eg, times, dates, outcomes. Depending on her age and abilities, maybe you can also give her specific tasks that will make her feel not-useless, eg, "Please could you bring me some biscuits because I'm feeling tired" . If she's great at tech, perhaps ask her to load a playlist of your best music onto your phone to play when you are at hospital.

Assuming they are at school or nursery, don't be afraid to recruit help from parents of other pupils, many will likely be pleased to help, and it will be easier for your girls to go for a playdate with people they know already if you aren't going to be back for a school run.  

Good wishes, Denby

Hi Jane,Welcome to this friendly group.I hope you will find it helpful and supportive.Love and best wishes Jane xx