Need to vent

Hi Simon,Good idea to get some answers from your CNS.I hope they can help.Jane x

Very frustrating for you. Normally there would have been an MDT meeting to recommend a course of action or choice of treatments. Having said that, things aren't always cut and dried, there can be different opinions. Hope you can get a definite plan of action soon.

Hiya Simon 

Sorru to read you have run into issues again and fingers crossed they have cleared things up for you it’s a balancing act this particular cancer isn’t it one minute your making progress the next minute your at the starting line again all the best with your results hoping for a great outcome for you 

Ste 

Hey Simon, this certainly isn't an easy journey that we're on. I hope that you get a clearer picture when you've spoken to your CNS.

Sending love and hugs, Ade xx

Sorry to hear about the latest appointment. You must have been disappointed and worried. Hopefully the CNS team will reassure you -  having a weekend in between can't have helped either.

All the best,

Latestart

Thanks all for the comments so I thought I'd do a reply to all in this case. 

You do feel quite good when progress is good, I mean I did have a small recurrence in January but it was one and small so that was ok. 

Then 5 months on and to have several small and one large removed one of which was in my prostate it does start to make me worry a lot more. 

Along with that for me it's the worry if they possibly want to do a 6 week course of chemo now as it wasn't done when the rumours were removed. For me that is going to be really difficult with work and having days off every week etc. So I'm hoping we can make sure at my next checkup up if there are anymore then the chemo is done then.

One consultant told me the chemo is much more effective done the once at the time of removal than after the fact over 6 weeks. Then this one didn't do it when the opportunity presented itself. My first TURBT I had no catheter and then time woke up with a catheter in for what reason I have no idea. The problem is I just don't ask enough questions and with everything going on it's hard to think of the right things to ask and why and be able to take it in and understand it all as well. 

I have noticed that whilst I am peeing freely enough this time it seems like my steam is a lot weaker but that could be due to inflammation in hoping, I'm still drinking plenty at the moment and going frequently so will see how things go over the next couple of days. 

I'm trying not to have too much time off work and I only get 7 weeks company sick pay and lose the first 3 days of any sick occasion anyway. So you then have bill worries on top as well, I mean I'm doing ok and have savings but that's last thing I want is to be eating up into that for odd occasions as I might really need that if I end up having a prolonged period off later on when sick pay has run out. 

So yeah it does feel like a big step backwards and people often say oh you'll be ok etc but it rarely feels that way when it has such ups and downs. 

I know I'm preaching to the converted here and you all will have similar experiences and stories either very similar or the same. 

Just sometimes it's good to vent and get it off your chest. 

Hi, it definitely is good to vent sometimes, and this is a safe place to do that. I know what you mean about not asking enough questions. Often, it's not until you get home that you think of what you want to know, that they didn't tell you.

I'm not sure if you have mentioned what grade your tumours have been? It is possible that first ones were low and chemo not thought necessary, perhaps now grade has increased so they are recommending the 6 weeks (intravesical immunotherapy) to deter further recurrences. 

Anyway, i can see that it is the time off work which is causing you great concern. Perhaps worth looking at the Macmillan section on money and work to see if there is support you can get. Best wishes.

Grade 2 low they haven't recommended it yet, but it was discussed if any further recurrences they would do the chemo at the next TURBT. 

Consultant said he would have done it at the first Turbt if he had not had to resect so much around my left ureteric orifice. 

Seems daft not to do something they could help to prevent further recurrences if it can be done didn't say it couldn't be done this time 

And obviously into histology is back won't know if it changes the grading or not yet. 

But I know what you mean. 

And yes looking at help is possible but sadly as is usually the case I earn to much to usually get any financial help sadly. 

You may not feel like sitting down with a notebook and pen but maybe this would help when you get to the next meeting. So why not jot some of the questions you have raised in these posts and add others when you think of them as well as all the factors that affect how you can deal with things? I  would then group what you have by topic and even run through them aloud before you meet the medics. 

In the meeting, listen hard to what they say and note it down. Slow things down until you are satisfied  and don't leave until you have no more questions, worries or similar. You deserve to understand your situation, what they advise and get clarification there and then. If you have someone who could come with you that could help you too.

Good luck,

Latestart

I second Latestart's suggestion to write things down. Also use your CNS to go through anything you don't understand about your treatment.  I also think it might help taking a friend or relative to check ups to act as a second pair of ears. Best wishes H x