Managing other people’s feeling

Hi Stritty. Dealing with friends and loved ones has always been difficult and you need to treat people in different ways. Although not a funny subject, I always try and use a bit of humour about the indignities we go through, and this tends to put people at ease. At the start, when I met people and they said the usual "how are you?, I couldn't help blurting out "I've got cancer". This was a real conversation stopper. When I came to terms with things, I was open and honest with everyone and went in to detail my treatment to the point of boring people, and then like I say, put a bit of a humorous twist on things. As time goes by, people tend to accept what you are going through and become more comfortable talking to you about it. Best wishes.

Thanks Rily. I am mostly light and humerous I think, especially with family but they are generally willing to share my dark days too. Today’s isn’t really too dark a day for me. Just quite a huge milestone on the journey but my Mum is obviously finding it upsetting and I’m struggling now whether to honest and tell her how I feel, when I feel it or pretend to her that everything is fine all the time. Obviously I don’t want her to be upset but at the same time I do feel, selfishly maybe, that I need to take care of my own emotions and let others take care of theirs. It’s a hard one because I hate to think of her alone and upset but at the same time I feel I need to have today for me. 
best wishes, Linda

Thanks Rily.

I agree people don’t really want full details of our treatment plan.

I’m just about to go in to hospital for another TURBT and camera test to see if BCG treatment is working.

Of course I hope it is but have to be prepared for an alternative!

I wonder if any others in the forum have had a further 6 weeks of BCG treatment or had mitomycin treatment following this?

I know nothing about mitomycin as it had never been mentioned to me.

I just want to know what options are open to me.

I’m 75 years old, am in good health and reasonably  fit.

Advice from others would be appreciated.

kiko

Aww Linda it's so hard .. at this time you need reassurance when you tell anyone how your feeling  but you are still your mothers little girl and she just wants to take this away from you she probably wishes it was her not you going through this like we would with our daughters ... maybe she's been holding worry and stress in about you and needs to have a good cry to release her feelings .. try not to worry about everything too much maybe give her a ring later and tell her you needed to get how you feel off your chest so telling her helped you xx so bloody hard .. I'll be thinking about you tomorrow and really hope you'll be OK xx when I was in hospital having turbt in February my mother phoned from care home to my mobile she had dementia and knew nothing about my bladder cancer .. she just wanted to know when I was going to visit her to take her out .. I had just come back from operation and was not myself and if she had been of her right mind she would have picked up on this immediately... I felt awful as I really needed her at that time but the mother I had known all my life had now gone .. sadly she died a month after.. it was uncanny how she phoned me that very day as she never used to maybe a 6th sense told her something was up with me xx you will get through this Linda we are 50s babies they took away our pensions they are not taking our strength and determination xx please keep on writing how you feel it helps and there's always someone to support you xx sorry for rattling on but I think it's a welsh thing I'm always being told I can talk for wales xx take care and all the very best for tomorrow love Tina xx

Hi kiko I had turbt in February followed by mitomycin about 5hrs after turbt just one treatment... I then had to wait 8weeks and had 6 treatments of bcg which finished in April xx I went into hospital for rigid cystoscopy July 13th to see how things were working and all was clear thankfully xx I am now having maintenance bcg treatments once a week for 3 weeks starting on August 18th then another cystoscopy to check again I think this will be going on for about 3 years to keep checking on things xx I was diagnosed with cis which is high grade xx hope all OK with you xx I am 65 and didn't ever expect this happening but it's a card that's been dealt to me on this journey of life so I'll just take the road as best I can  xx take care and keep posting the forum has helped me with great advice and encouragement xx love Tina xx

Hi kiko 

Im 46, I haven't had BCG but I have had mitomycin c after my TURBT with no problems at all. 

Good luck..... remember to pop on here and share any worries. There is always someone who can help.

Sending love

Clare

Thanks Tina.

And so please for you that all is well.

my tumour was stage I, grade 3, so I have everything crossed that the BCG treatment is working so far!

Hi kiko,

I just had the first BCG last Thursday. I had TaG3 TCC, which is very similar to yours (some studies even say that the "chances" for Ta or T1 are very similar. My consultant seems to think (he told me):

1. You are not going to die from this

2. It is very unlikely you will have to have the bladder removed.

3. I think the BCG is going to cure you

I wanted to kiss him!! But I know that this is not an exact science.  You can have better or worse chances. I think we have very good chances to survive this. If the BCG doesn't work, we can have chemotherapy,  radiotherapy,  both. Some even say you could have ctstoscopy and TURBT if necessary ever 3 months... There are so many alternatives. I think in the worst possible case I will have the bladder removed (very low probability). But as you can see on this forum after the first few months of adjusting,  even then you can have a fairly normal life... 

Good luck!!

Marco

Thanks Marco.

 That sounds  very encouraging!!

Hi Linda. My mum is nearly 80 and I have 2 kids under 10. I know my mum wouldn't be able to handle the worry, and I didn't want my kids to worry about their dad having cancer. In the end, I opted not to tell them. It's not nice to keep secrets and it's probably not very healthy, but so be it. I told about half of my own adult family and 1 of my in-laws, just in case I needed to them to step in and help sometime. My family members cried when I told them and eventually I ended up switching the conversation to be light-hearted and played the whole "it will be fine, don't worry about it!". I don't like to speak to them about it now, as I know it makes them upset, and I don't want that additional pressure that I need to make them feel good about it. The irony ;-). So now, my daily cancer inner-circle is very small: my wife and 1 friend. Nobody else gets the details, i don't even tell my family if I'm going into hospital for treatment. That's easier for me in the long run but it also protects those who aren't as strong mentally. Perhaps a bit selfish. But that's just the way it works for me.