So here it begins..

Hi Nananaps . I know it is a lot to take in and it is hard trying not to look too far forward so it is best to take things one step at a time. I had three cycles of Gem/Cis over 6 weeks. A cycle is a long day one week followed by half day the following week. After several weeks they should take some scans to see how effective it has been. The results then dictate the next step. I tolerated the chemo well and had very little side effects besides some tiredness. I hope it goes well. Best wishes.

Rily

Thank you, just hearing the words I did this too gives me such a relief. I think the hardest part of all of this is thinking that you are the only one to experience it. This is why I find such comfort in this group. 

I have tiredness continuously so if I can get away with just that I will be over the moon! 

Thank you so very much for the good wishes and advice it really does make this easier

Hi Nananaps,

I was also diagnosed with locally advanced and with possible nodal involvement, mine was in the upper tract in my kidney, you can read story to date by clicking on my name. I was told I would need chemo to see if it would shrink cancer enough for surgery as not possible on diagnosis. I was given 3 cycles of chemo over 9 weeks and it shrank cancer enough for surgery. Chemo was tough but I got through it and had robotic nephroureterectomy in April 24. My cancer was G3 T2, I am now cancer free with regular scans and cystoscopies.

wishing you well on your journey

Annie x

You've certainly had a whammy with each step. I suspect doctors tend to underestimate severity at first so as not to unnecessarily alarm patients. It's a difficult balance, as a clinician, to judge how much to say. If a patient asks, that gives them the opening, but if not, it does tend to be one bit of information at a time. 

Very best wishes with your treatment.

Good morning Nananaps,

I hadn’t thought that maybe some doctors ‘drip feed’ bad news to us but I suppose it must be difficult to know how to tell us the news none of us want to hear and some do it better than others - my cystoscopy doc was awful but my surgeon was fantastic! I’m sorry if yours didn’t handle it well for you, that’s really stressful on top of everything you’re dealing with. 

I also have to constantly remind myself that treatment is so advanced and so sophisticated now.
So I’m saying it out loud here - It’ll be tailored to your needs specifically for the best possible outcome and as we’ve all seen here being cancer-free is a realistic goal we can all reach for.

I don’t have any similar experience of your diagnosis or imminent treatment but I just want to send love and a virtual hug and say that looking out to your next step and meeting each one as you come to it is a very positive approach.
As Rily mentioned I appreciate how hard it is to not rush ahead but you’ve got this..! 

I hope your treatment starts very soon, as in all of our stories it’s the waiting that’s just the worst! 
Love to you, Nikki x

Hi Nananaps

Sorry to hear of your predicament and shifting treament woes.

I know I'm not as far along my journey as you are, but some of my immediate family have and are having longterm ongoing treatments and I always try to keep in mind that each patient presents a specific puzzle for the specialist team and treatments are tailored to the best of their ability to help that particular patient.

We as patients can only make our decisions about future treatment base don the information we get and like you mention I try to get the 'truth' without any gloss or cushion.  

There's good advise here from others and my heart goes out to you.  Fingers crossed that everything works out okay.

Rob

Hi Annie

Thanks for your words of wisdom, it really does make this journey a little easier. It's great to read the words cancer free on so many of the replies on here.

Michelle x

Hi Nikki

I think drip feeding is probably the best description of what we are told and perhaps it is because I don't seek information too far in advance. I work on what I am told and perhaps I need to push a little for more information. I think it's me rather than the doctors, I am perhaps far too laid back! 

Have a kidney function test and a hearing test booked in for Monday so hopefully once they are done I will have a date. I was told 2 weeks at my last appointment so it should be pretty imminent. 

I am quite surprised at how calm I and my loved ones have been with the news to be honest. My new saying is 'you can't change it' and 'what will be will be' 

I hope you are ok, thank you for the reply it really is appreciated 

Michelle x

Hi Rob

I hope you are recovering well. 

You are right, I am sure it is just as difficult for them to deliver/gauge how to deliver as it is for us to hear. 

The any questions question is my nemesis. I like to digest what I am told then ask questions. In a short appointment you don't really have the time to digest, I actually admitted to the consultant that I would probably have lots of questions but not until I had taken in all the information and then I would not be afraid to ask at a later date. And then along I come here to ask. This group is fab for that.

Thanks for your reply, I'm sure I will smash this now I am armed with some more positive vibes from this group

Michelle

Hi Teasewill

You are right, I think that has been my issue. I listen and take it all in but don't tend to push for more. I have always dealt with what is infront of me rather than worry about whatifs. That in turn has probably come across as not wanting any information. I have now addressed this with my consultant so hopefully things will not be such a shock moving forward.

Now to get on with getting better!

Thanks 

Michelle