Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

The Waiting Game

Wilbert
Posted by

Sorry slip of finger I meant Rc as in radical  cystectomy x

Garviv
Posted by

Fengirl

I had a large tumour removed followed by a full course of chemotherapy ( about 12 weeks). The unknown is the worst part but I finished the course of chemotherapy followed by 36 rounds of radiotherapy combined with chemotherapy. I did not experience any nausea or sickness just a little tiredness. My hair went a little thinner and frizzy but my barber sorted this out for me. My hair has not gone back to normal. Good luck Garviv  

Garviv
Posted by

My hair has gone back to normal. Sorry for the typo

fengirl
Posted by

I just learned today that I have to have 3 sessions of chemo, each session is a period of 21 days..  6 hours of treatment on the 1st day, then 1 hour of treatment on the 8th day....  After the chemo treatment is over then the radiotherapy...Sounds very similar to what you've had Garviv...I've been told to expect the same, a bit of tiredness and hair thinning...I have really long hair, think I'll have it cut...Thank's Garvin..

Once you become aware, you can't become unaware....
fengirl
Posted by

You hair HAS gone back to normal?  Hope so....

Once you become aware, you can't become unaware....
fengirl
Posted by

Hi Inanna,

Looks like I'll be starting treatment within the next couple of weeks and have been told I probably won't be sick...Hummm....No puking in my pink bowl then, I'll have to find another use for it....Good luck to you too..

Luv from me...

Once you become aware, you can't become unaware....
Inanna
Posted by

Hi Fengirl

I wish you all the best, please keep us all in the loop.

Love Inanna 

I know that I don't know
rily
Posted by

Hi Fengirl. A few basic tips for when you start chemo. Wear comfortable clothes. It can be a long day. Plenty of snacks and drinks to munch on. Something to keep you occupied, phone, tablet etc. Although you are on a drip all day, most of the time it is only a saline water solution to keep your kidneys working. The drugs are a bit in the middle. Unusual to have any effects on treatment day. I drove to treatments. Chemo lounges are usually friendly and upbeat and not all doom and gloom as you may expect. Happy to try and answer any questions you may have about chemo and chemoradiation. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Garviv
Posted by

Yes back to normal

G

Crustybladder
Posted by

... and a few more tips from me:

The top tip is to be as fit as you can be prior to treatment. Eat well, lots of protein, avoid alcohol and caffeine.

I expect you'll be having a combination of cisplatin/carboplatin and gemcitabine. The chemo nurses should brief you on what to expect and give you a treatment record book that lists the side effects and who to contact.

We all react differently to it and in my case after the first 8 hour session it wiped me out for 10 days. Cisplatin made me feel very ill, chronically tired and nauseous though the anti nausea pills stopped me throwing up.

Just when you start to recover you are back in for the next session so expect to feel at least tired if not grim for three months. You may get metal mouth when everything tastes foul but sweeter and very savoury foods were ok for me and you need to keep up the protein in your diet. Constipation can be a problem so the medics ought to give you a gentle liquid laxative but get some Immodium in case the opposite applies.

Hygiene is very important as your immune system will be damaged by the chemo. Avoid busy public places, people with colds, children generally and wash your hands frequently especially before eating and drinking, brushing your teeth. Phlebitis is a common side effect as the Gem irritates the veins so watch out for hot lumps on your hands and wrists, get to your GP pdq if that happens.

Buy a thermometer to check your temperature at least daily and record it in your treatment booklet. And then there is numbness in the feet, my toes are still numb after two years. On the bright side, no insect tried to bite me during my chemo.

I expect you will get pre-dosed hypodermic jabs of bone marrow enhancer to aid the immune system so you can administer these yourself. Tip: pinch a lump of belly skin really hard then stab it in the lump and press the plunger, remove the hypodermic then rub the stab site hard. It takes a bit of courage to do it the first time but it's a great sense of achievement later.

Good luck!

CB

I may appear to be listening but in my head I'm boating. 

fengirl
Posted by

Sorry for the long delay Rily..and thank's so much for all the tips..

It'll be a 6 hour treatment on Wednesday, followed 8 days later by a 1 hour treatment...repeated every 21 days for 3 sessions..

Best wishes back to you too..xxx

Once you become aware, you can't become unaware....
fengirl
Posted by

Wow, what a lot of really helpful information..Thankyou You know I keep brushing things off, thinking I'll be fine, but reading this I'm gonna be anything but...I've been eating like a pig and have put on at least a stone since Christmas, so maybe the fat'll give me something to live off..People keep telling me how positive I am, but really I'm pretty scared..I think I'm only having 2 of the drugs you've listed, Carboplatin hasn't been mentioned.  My 1st session is for 6 hours, the 2nd 8 days later is for 1 hour and as you know, repeated at 21 days for 3 sessions....

Once again, thank you so. much for being so helpful, please forgive me for not stopping by more often.

Love, xxx

Once you become aware, you can't become unaware....
fengirl
Posted by

Hi Inanna,xx

Thank's so much..xx

I start my treatment on 29th...eeak....Can't think straight now..

Oh what a journey...EEEAK...

Love from me..xx

Once you become aware, you can't become unaware....
Inanna
Posted by

Hi Fengirl

Me too, going the stoma route. I have posted about this under Basil, the name i will be giving my bag lol

Fingers crossed for you Fengirl, looking forward to sharing our journeys 

Love  Inanna 

I know that I don't know
fengirl
Posted by

ehehe,

Well if it has to have a name, Basil's as good as any, can't help thinking of John Cleese, ...

I hope all goes well for you...xx

This is a scary journey for all of us and the nearer I get to Wednesday, the more anxious I'm feeling...and breathe.......Phew...

Love Fen...xx

Once you become aware, you can't become unaware....