Still waiting.....

Hi Luce

I will chase tomorrow....ha ha.....(again!)

I just want to know what the treatment plan is, what's the probability of it returning or even spreading etc..... 

I'll keep you posted. 

Thanks. 

Sending love, Clare

Hi Luce

Not sure what I was expecting from today to be honest but its been an emotional one. I feel totally wiped out. 

I spoke to the nursing team and was informed my nurse cancelled my consultant appointment before going on leave so that's not going to happen now. 

Anyway....my cancer has been graded as G2 pTa. The treatment plan is 4 monthly flexible Cystoscopies. Positive news so not sure why I'm feeling so low unless it's the relief? I have been running on high anxiety for 8 weeks so maybe this is the come down. 

Who knows.... ha

Sending love

Clare

It is absolutely exhausting trying to take in a diagnosis. I found it took time to get my head round it. My tumour was Grade 2 but T1 which means grown deeper than yours. Ta is superficial which really is good news. It's also good that there will be close monitoring. I think of the time between cystoscopies as my holidays I hope you can rest, relax and enjoy your break from treatment. x

Hi.

I think that's it now, getting my head around it all.

Ive booked a long weekend away as a little celebration...ha ha. I'm made of tough stuff but we've had several family tragedies last 18 months so maybe I am tired of being strong, does that make sense? Or am I just rambling.... 

Sending love 

Clare

Hi Clare,It’s good to hear that you finally have a grade.It Is emotionally exhausting when you are waiting weeks for results.Being strong all the time is so tiring too,no wonder you feel wiped out.Enjoy your weekend.Love Jane x

Hi

Thank you for reassuring me I'm not just being wet.....ha ha. 

Sending love

Clare

Hi Apritdaisies

The waiting is the thing that messes with your head at first!

I say this as I’m a reoccurrence in nearly four years I’ve had 6 turbt ops and originally had the chemo treatment.

My last op was Nov and BCG x 3 Jan.

 The next wait was the camera in March which was clear yay as I’ve not had a clear result for 18 months.

Now the wait for June to have another camera to start my BCG no: 19,20,21. I have learnt to switch my thoughts off which has taken a while so I can enjoy the days that present to me.

im blessed I help my daughter with childcare and although during treatment time I’m aware of tiredness I switch off my cancer brain wave and engage in life with the children.

My nurse is the one that gives me all the details and I can’t remember seeing it speaking to a consultant other than when I wake up from my op!  She was the one that told me to forget about the times between the treatments and live my life without limits.

I wish you patience and tolerance as to US our cancer is real and I felt to the consultant it’s there till removed.  We deal with the aftermath so be kind to yourself, love yourself, smile and keep your food intake healthy to keep well and fit ready for kick arse action.

You will grow stronger 

love n lite 

Gizie cat x

What great advice ...I am trying my very best to switch off until I need treatment or proceedure again .. I was diagnosed with cis in December had turbt and 6 treatments of bcg I'm awaiting rigid cystoscopy to see how things are but I'm trying to live my life as normal as I can and not make the cancer my only thought ... it can be so hard sometimes but I seem to be adjusting to my new way of lifebetter than when I was first diagnosed.. I have a wonderful family  so I feel so lucky and blessed.. I hope and pray my positive attitude will carry on I hated the feeling of doom and gloom I previously experienced xx good luck and best wishes to everyone as we go through this journey  so many people are on this forum offering us encouraging and wise advice xx love Tina xx

Well done and yes it takes a while to see life through different eyes

Im pleased you have supportive family it also helps them greatly I found if your not in a cancer fog,

I realised the first few turbt my son got stressed about and my daughter worried about childcare not selfish but so many concerns!!

I decided not to allow my cancer  to be making my loved ones worry so I sat them both down with my grandchildren and told them I’m a very lucky person having the cancer I have: 

I get kept an eye on regular, my recovery is as expected, I can do everything a nanny loves to do. 
If anything it helped my grandson understand the word cancer isn’t a death sentence and many people are survivors.  

I am not a visitor to the site very often no reason other than I’m often so busy forgetting I have bladder cancer.

My love and blessings for everyone who has been a brick for others and for all the new members my thoughts go to you and encourage you to tap into a strength you didn’t realise you had.

My next journey is to start to volunteer for MacMillan as they are always there for each and every one of us.  I did the Hope course they provided and the support and key skills to live a full life were excellent.

good luck, stay strong and don’t loose your identity

Lorraine x

Wow! So much experience and so much good advice.

I am a remarkably strong person and I generally don't waste time worrying over things beyond my control or spend precious time wallowing but this really did knock me sideways.

I have just had a full MOT with GP and blood tests have revealed a B12 deficiency which I am sure has not been helping my energy levels or my mood. 

I've been working from home since March 2020 so I have also been more isolated than usual and miss being told to 'put my big girl pants on' by my colleagues. (Sounds harsh but work family are such a vital part of work life) ha ha. I also had to create an office and had to get rid of my treadmill.... hubby came home the other day with a new compact treadmill for me.... so I'm going to start running again which will also help my mental wellbeing. (Most husbands buy flowers but he said he knew I'd appreciate that more..ha ha)

I have not found the specialist nurses very helpful so far and have not wanted to burden the family with all this nonsense wanting to portray to them that I'm not concerned so they have no need to worry about me. (Seems to have worked as none of the 6 kids seem bothered).

This forum has been a mind of useful information and love and support. So many people ready to share their experiences to alleviate my concerns and worries.

I have two more weeks off work then I'm going back part time for a few weeks before going full time and I honestly feel I will be strong enough again by then. 

Thank you to everyone...

Sending love 

Clare