Bladder Cancer

[samstock74]

Hi, I was diagnosed in February with invasive Bladder cancer, am currently under going chemo in order to shrink the cancer to ensure when I have surgery to remove my bladder they are able to get it all.  This is a journey I never thought I would be going through and am scared, overwhelmed and am in need of support to get through this treatment and surgery and how to live beyond these without a bladder. I am a single mum of two boys and am 48.  TIA 

[Budgie]

Hi @samstock74 ,

I'm sorry you are going through this, and yes, it is a scary journey, but welcome to this site.  

What chemo are you on & how are you coping with the side effects? Do you have a time frame of how long you'll be on the chemo for, or is it that you'll just keep on it until the tumour is small enough?

Have you told your boys?  They must be very worried about you too.  How old are they?

The Cancer Council has a number you can call - 13 11 20, & they will be able to give you some guidance.   It's always best to talk about things, so if you can, talk with friends, family or social workers, or even a member of the clergy.  Really, anyone you can talk to would be a big benefit.  Most importantly, talk with your sons about what you're going through.  They'll want to know, & like you, they'll be scared.

Attitude is a very good thing to have when you're diagnosed.   Don't let this illness beat you.  Yes, it's scary, but do some research, as much as you can, so you know what options are available to you.   Knowledge is powerful, as being forwarned is forearmed.  

I wish you all the best of luck.

Budgie

[Donotbeafraid]

Hi Samstock74, please do not be afraid. I am sure you will be ok and you HAVE TO BELIEVE you WILL be OK!

Nothing does more wonders than a positive mind! If you be positive, you will draw positive energy from the universe and positive outcome will come!

I just had my vulvectomy end of last month and it all went well. I felt I have a new life after the surgery! This is my second chance for life! I was telling my surgeon this is the NEW ME talking to you! 

The fact that you can have surgery to remove it means you are lucky enough to get it moved from your body, some people do not even have this option!

I also heard a lot of stories about people "got rid off" their cancer with immunotherapy after surgery or chemo/radio. Look into that as if our immune system is strong, it can kill the remaining cancer cells.

I wish you all the best, 

You can beat it!

[samstock74]

Hi Budgie

thank you so much for your words, its been a rocky road, I have just started my fourth cycle of chemo, a few complications along the way but nearly done. Next up (on the 16th May) urology appointment to discuss surgery. My boys are 8 and 15, they are doing Ok and I am open about all what's going on with me although toned down a little for my eight year old.  I am trying to stay positive. I have some great friends but no family here.  I have a peer support worker who calls once a week.

How are you going ?, where are you in your cancer journey? 

I am so sorry for my late reply, it's really not like me.

I hope this finds you well and happy

take care

Sam

[samstock74]

Hi

thanks for your kind words, sorry for not replying sooner.  I am just about to finish my 4th cycle of chemo and have an urology appt on the 16/5 to discuss my options regarding surgery.  This is definitely not a journey for the faint hearted. 

It was lovely to read how you are doing post surgery, I had to google what a vulvectomy was as I had no idea. Your positivity is amazing, I am trying my best to stay positive but finding it had to get my head around the removal of my bladder. 

Are you having any more treatment ?, Is your cancer fully gone? 

Please take care and share your positivity around.

I hope this finds you well and happy 

Sam

[Budgie]

Hi Sam,

It's good to hear you're going OK at the moment, & that you're talking your sons thru this time as well.  Young children can understand a lot more than we often give them credit for.  I'm glad to hear you have some support,  but don't forget, there's always more if you need it.  I bet you're anxious & excited to find out what the 16th will bring.  Just remember thru this journey, everything should be what you want/prefer to happen.  It's your body.  If you don't like the sound of something,  ask if you have other options.  

Me, I  was diagnosed with stage 4 kidney cancer in August 2012.  Nearly 10 years on, I'm still here, thankfully.   I've had a few surgeries & radiation sessions along the way.   But the majority of my treatment has been oral chemotherapy,  a tablet I take every day.  I've been on a handful of different 

Drugs as the chemo, as each one has stopped working for me, I've gone onto  a different one.  But the one I'm currently on has been the best.  So, I'm one of the lucky ones to still be around.

Anyway, I hope things go well with your upcoming surgery.  Will you have someone to look after your boys while you're in hospital, & recovering from the op?

Budgie

[samstock74]

Hi Budgie

thanks for getting back to me, I hope my journey will be a successful as yours and with every beat of my heart I hope in 10 years I will still be here reflecting on this time with positivity. I am scared about the 16th, I have done some research and the surgery is pretty big, bladder removal and possibly my ovaries, fallopian tubes and uterus but that is determined by where I am regarding menopause.  At this stage I am not sure who my children will be looked after by, there is a lot of other stuff going on with their dad,  he has recently got remarried to someone my children don't know which is proving very difficult for my youngest to accept. 

I hope life is being kind to you, what do you do for work?, I am a learning support officer in a high school, I absolutely love my job, my passions are education and working with teenagers so this role meets both. 

Do you have children ?

Outside of work my passions are NRL , tennis among others. 

Anyway wont waffle on, the Titans are playing soon and need to get my little one organised for bed.

take care, hope you have a great weekend.

Sam

[Donotbeafraid]

Hi Sam,

Good to hear from you! You really do not need to be sorry about your late reply as I totally understand the turmoil you are going through! The beginning of everything is hard, it is especially true for this journey which is so much rougher than the other ones.

I think comparing myself to other people helped, people who have lost their lives to accidents, fire, flood etc. . I think about my classmates who were the same age as me but sadly have passed away many years ago. I am lucky to be still alive comparing to them. If you focus on what you have and focus on making every moment beautiful, you will feel the peace. On the contrary, if you focus on the negatives such as side effect of the surgery, it will make you scared.

My husband asked me if I was scared before my surgery. I said not really. I said it is like people going to bungee jumping, they might be a little bit scared inside, but when it is the time to jump they just jump. Only with that jump, you achieve what you could not have imagined. 

You will feel relieved after the surgery, at least that is how I felt. Cancer is taken away, and you are given a new chance to start all over again. Isn't that great?! Yes, of course we have to live with some pain for some time, but the good news is that is only temporary! Soon after your recovery, you will be walking, driving, running as you used to. You will be there when your children celebrate their birthdays or graduate for the years to come... It will happen, just keep the faith!

I am lucky enough that surgery was the only thing that I had to go through. I think the diagnosis is a wake-up call. It calls to change the ways I was living and change my diet and exercise more. Things will only get better from here. 

I am rediscovering the things that made me relax and happy, especially after your surgery, you will have a lot of time to do that. Pamper yourself, you deserve a break!

Sending you positive vibes,

Do not be afraid