Results day

Morning Carol27, sorry to hear your diagnosis was muscle invasive, Of course it was a blow when you’d hoped for different, However your otherwise good health and fitness will stand you in good stead to cope with the treatment so that is positive news. Also bladder cancer is very treatable with a range of weapons in the armory so you will have a lot to consider.  I hope your wider family and friends will rally to support you and your husband during the next phase of treatment, whatever you choose to do. Your concentration has to be on your own needs at this tough time, so help from others can be invaluable. I hope yesterday you were introduced to your Cancer Nurse Specialist since their knowledge and support can be invaluable, realistic  and less terrifying than Dr Google. I can telephone my CNS any time and she’s been amazing,  The MRIs and scans are good news since they will help you get a clearer picture of what is being dealt with. My own experience so far has been BCG treatment but many of the members of this forum have chosen to have their bladders removed and gone on to live long, happy, healthy lives afterwards, I’m sure they will be along soon to offer their encouragement. Sending you love H x

Hi Carol27,Sorry to hear you have to have a cystectomy.Being fit and not having underlying conditions will aid your recovery.The majority of people on here have found it takes a few months to recover.I felt a lot better after 3 months but didn’t resume caring for my mum until 8 months later.I did find it hard bending over her wheelchair and had to have the help of 2 carers who worked alternate days.There was no one to care for mum during my recovery so she went into respite care.When I first came home from hospital my sister looked after me for the first few days.I was very weak and exhausted.Feeling tired is common but you start feeling stronger each week though it can be a bit of a rollercoaster.Some days/weeks are better than others.I ate little but often,walked each day gradually building up the distance.You have to rest when you need to and listen to your body.It will let you know if you have done too much.I took up art and genealogy,read and watched tv.My goal was to get back to gardening which I love and I was back outside doing light work after 3 months.I hope you can make some provision for your husband’s care.I understand how difficult it is as I was sole carer for mum.It probably took me longer to fully recover (over a year) as I was very unwell before the surgery.Love and best wishes Jane x

Thank you, in my heart I know I’m one of the lucky ones but it is just very new and raw at the moment and a lot to take on board, and wait and see which I think everyone finds harder than the diagnosis itself. Thank you for help. C

Thank you, yes I do have a lovely nurse and she couldn’t have been kinder or more helpful but so much to take in and get my head around. This has now given me the kick to find some home help, family is very small and they have their lives to lead also none of us live under two hours from one another at best, and to be honest it would drive us both mad having them popping in to help, plus one has her own medical issues so not in the best position to help, likewise with friends, most are older than us and not so good but taxi to the hospital and make sure we have a full freezer prior to the hospital, and forward planning will help take my mind off. Thank you for your help I know there will be light at the end of the tunnel it’s just starting that long journey on a positive note, but being able to share your fears and learn from others experiences is a huge help. Thank you. C

The options with T2 are usually chemo plus surgery, or chemo plus radiotherapy, so worth checking if you have a choice. Winners has given a good idea of recovery time post op & I expect rily will be along soon to tell you about the chemo/radio route. All sounds a bit daunting, but they dont offer surgery unless they are sure you can cope. My bladder stayed irritated after TURBT for several months. Be sure to keep drinking plenty to flush it through. I used to listen to podcasts to help me sleep, or at least take my mind off it all. I had surgery 11 years ago, happy to answer any questions. Best wishes.

I remember how daunting it all felt,I do feel for you.I already had a chronic bladder disease and had been under cancer surveillance for 14 years before bladder cancer.It was a shame that mum had to go into respite care but I was able to visit often before the first lockdown.Forward planning is definitely a good idea.After mum came home social services arranged for us to have help which was beneficial.I don’t have any family nearby except for my sister and she works full time.My partner helped out where he could but he is disabled with a rare muscle disease.You will get plenty of support and advice here moving forward.Love Jane 

HiCarol27 . I was T3/G3 and was offered the alternative of chemo followed by chemoradiation. Besides the daily trips to hospital for treatments, I could go about my normal activities, although it did become a bit tiring towards the end. Best wishes.