Struggling

Hi Bumblebee49, Your diagnosis is very fractionally more severe than my husband's of G3 Pta in 2017. And his bladder was chock full of growths, none of this two 2cm and one 3cm business. He actually wasn't fussed, but as you are, I suggest you try the Macmillan helpline for support as that's what they are there for:-

Please call us on 0808 808 00 00 (7 days a week, 8am-8pm).

And while each person is individual with different effects of treatments and different personalities and circumstances, my husband is now clear and just getting checked 6-monthly.

best wishes, 

Denby

I hope I will be as fortunate, thank you for your response and I will try McMillen support. 

Hi Bumblebee49. As Denby says, the Mac helpline is a great source of support if you want to talk to someone in person. Your post sounds very familiar. I felt the same way when first diagnosed. The uncertainty and not knowing causes a lot of anxiety. Once I got on the treatment path, I felt a bit easier as I knew something positive was happening. Getting back to work may help as you have something else to fix your mind on. I poured my heart out on here and got lots of support which I found was a great help. I hope all goes well. Best wishes.

Hi Bumblebee

I know how you feel. It is a big shock to the system. I found it very hard to take it in when first diagnosed.  However once in the system I felt relieved and began to feel more optimistic.  

Basil my stoma and I have been together 2.5 years and life is good.

I wish you all the best on your journey

Love Inanna x 

Thanks Rily, yes I will try the help line and try and speak to someone. 

I don't know how I would cope with that but I suppose if that is the only option, I would have to find a way. 

I remember being in that place with TaG3, waiting for second TURBT to know if BCG was an option, or I would need radical surgery. Do you have any suitable friends or family members to listen to your concerns? I spent far too much time with Dr Google by day & sleepless nights. Used to listen to podcasts to distract me at night. Even before I got the results of TURBT 2 I had actually made up my mind to opt for surgery anyway. That was at age 56. Am now 11 years on & no regrets. 

All your reactions are perfectly normal. Perhaps write down how you feel, think of questions you want answered, keep a jitter to hand. Sometimes acknowledging the fears & feelings as normal can help put them temporarily to one side. Helps if you have some absorbing activities. Dance or exercise can be a way of relieving stress too. Time will pass & as Inanna says, once you know your treatment path, you have a better idea of the way ahead. Very best wishes.

Thank you for responding. They haven't mentioned radical surgery yet but I know that this may come up. It's great that you have managed to cope with that surgery and still doing so well 11 years on and no regrets. I am trying to take my mind off my fears, going back to work today helped a lot. I did have to explain to quite a few people what has been going on these last 6 weeks. I take on board you mentioning dance and exercise that's good therapy. Yes I have family and friends and work colleagues, no one that has experienced like this though. I might try McMillan support as well.thanks again. 

If you have a Maggie's centre at your local hospital, I can recommend a visit. It is a calm environment where you can talk to their lovely staff if you choose, or just sit is a corner & cry - as my wife has done previously.

Thanks for that, Maggie was mentioned to me today by Mcmillan, I might try and go to a centre for a chat, cheers