Hi everyone

Hello Cloudsurfer56 and welcome to our friendly group. You will get plenty of support here as you go forward. We understand how you must be feeling at the moment and the feeling of uncertainty is normal. Once you get on the treatment path, things become slightly easier as you have something positive to focus on. I had chemo for a similar diagnosis and tolerated it quite well. I was then given a choice of removal or radiotherapy. I went with the latter but many here have had bladder removal. The chemo drugs used for BC are not the ones where hair loss is inevitable. Some people report slight hair thinning but it is very rare to come across full hair loss in this group, so the odds are on your side. Lots of experiences here to answer any questions or you can come just to talk if you fee like it. Best wishes.

Hi Cloudsurfer56,Welcome to our friendly group.That is a lot to think about but as rily says it does tend to get easer once you start treatment.There are several of us here who have undergone bladder removal and can support you through it.I hope you find the group helpful.Best wishes Jane 

Hi Cloudsurfer56

Another female with no bladder here. I  was 69 on diagnosis had the Gem/Cis chemo and lost some but not all my hair. Then had the robotic bladder removal surgery. So no need to feel lonely - there are a lot of us about (and still going strong, in my case over 3 years later.)

Like you, I kept as strong as possible for my husband and daughter but this forum (which I didn't discover until much later) is a good place to come to be among people who know exactly how it feels.

My advice, if you lose a little hair, wear a hat - it can be cold in the chemo room. If you feel overwhelmed come here or go for a walk - keeping as fit as possible will stand you in good stead for the operation. If your hospital is like mine they run a prehabilitation programme for us and they were always ringing me up and reminding me to keep moving.

Chemo will make you tired by the end of the sessions but it isn't as scary as I certainly imagined. In fact we made friends among the other patients and their partners/supporters. And the nurses there are very cheerful and although busy are always willing to chat - chemo takes several hours.

At the moment you are probably feeling daunted - there is a lot to take in, but once treatment starts you get into a routine and can participate..

Ask us anything you want, one of us will have had it, seen it or done it. If you click on our names you can see what we have had done etc.

And let me tell you one final thing. Having a stoma and bag, though it may sound horrible at the moment is no big deal once you learn how to deal with it (same for neobladder, according to those who have that.). And of course, they give you that to save your life which helped me at least to think kindly on it!

All the best,

Latestart

Latestart, great reply , Leo

I am.not female, but Tracey Emin has however been a great inspiration to me. She had radical surgery also. We are with you on your journey.

I had my operation in Nov 24, and am currently cancer free and doing well. Just been for a run with the dogs. There is a life to be lived to the full, Leo

Hi Cloudsurfer,

It is a lot to digest and get your head around and it absolutely does feel lonely at times; as much as friends and family empathise and support it is very different than actually going through it.

This forum and the local Urostomy association whatsapp group were great sources of information at the time I was diagnosed last year and they both continue to be invaluable as people in both groups are so generous in sharing their experiences.

I found it helpful to have a notebook where Id write out any questions pre appointments and also where Id make some short notes of any appointments and calls to reflect back on if needed. 

In terms of side effects that will depend on your chemo drugs; I had gemcitabine and cisplatin, 3 cycles over 9 weeks.  i had one long day of infusions (8hrs) followed by a short day the following week.  Gingernut biscuits and lemon sherberts helped me through the longer days as they kept any odd tastes from the drugs at bay.

I experienced some fatigue and nausea after the first round but once I flagged that to oncology they were able to change my take home meds which really helped with that.  I also worried about hair loss and did experience what I would call shedding which did ease off a month or two after the last infusion.

I had my bladder removed in November, there were some hiccups with leaks at the very beginning but once my stoma nurse was on the case and made a few tweaks to my supplies it has been well behaved ever since - in fact I would go as far as to say I have more freedom to get out and about without my bladder than I did with it.

It is a very personal journey but I found that people genuinely wanted to help in whatever way they could. I know that it can feel lonely but you are never truly on your own.

Hi Cloudsurfer,

It is a lot to digest and get your head around and it absolutely does feel lonely at times; as much as friends and family empathise and support it is very different than actually going through it.

This forum and the local Urostomy association whatsapp group were great sources of information at the time I was diagnosed last year and they both continue to be invaluable as people in both groups are so generous in sharing their experiences.

I found it helpful to have a notebook where Id write out any questions pre appointments and also where Id make some short notes of any appointments and calls to reflect back on if needed. 

In terms of side effects that will depend on your chemo drugs; I had gemcitabine and cisplatin, 3 cycles over 9 weeks.  i had one long day of infusions (8hrs) followed by a short day the following week.  Gingernut biscuits and lemon sherberts helped me through the longer days as they kept any odd tastes from the drugs at bay.

I experienced some fatigue and nausea after the first round but once I flagged that to oncology they were able to change my take home meds which really helped with that.  I also worried about hair loss and did experience what I would call shedding which did ease off a month or two after the last infusion.

I had my bladder removed in November, there were some hiccups with leaks at the very beginning but once my stoma nurse was on the case and made a few tweaks to my supplies it has been well behaved ever since - in fact I would go as far as to say I have more freedom to get out and about without my bladder than I did with it.

It is a very personal journey but I found that people genuinely wanted to help in whatever way they could. I know that it can feel lonely but you are never truly on your own.

Keeping a daily health diary is absolutely indispensable. It really helped me keep track of my journey and make decisions. You forget so much otherwise. I recommend a think ruled A4 notebook and a pen, and an entry every day.