3 week follow up now changed to 4 weeks longer.

Hi Simon,What a pain I hope your nurse can provide some more information.Best wishes Jane x

Thanks Jane, it's just the waiting as I'm sure you know also probably too well, been nearly 3 weeks and then the rug gets pulled from underneath you literally 2 days before the appointment. 

Maybe it's the expectation of getting some clarification finally and some answers to questions I have had since that I could not have even thought about at the time.

And then it just feels like a slight kick in the spuds cause you now have to wait another 4 weeks now. Maybe I'm just being a bit of a grumpasaurus today as well. 

It always seems worse when it’s cancelled at the last minute.I had to have a benign breast lump removed and the op was cancelled three times the day before the planned surgery.It’s not good for anxiety I understand that.X

Hi Simc, no wonder you are feeling flattened by this delay. Can you phone to speak to your allocated Cancer Nurse Specialist? Perfectly reasonable to seek a bit of reassurance, even though as you say when the NHS delays it does usually mean no news is good news. Big hug to you. Stiff cup of tea and a slice of cake? Hx

Aye like I say I'm probably being a bit of a grumpasaurus, I don't hassle them at all, I just do what i'm told when I'm told and try not to be ringing up all the time etc. Maybe I just need to be a little more proactive and wouldn't feel so peved  when things like this happen. 

I just don't like to hassle people or tie up resources that someone may need much more urgently than me. 

Again maybe another week or 2 wouldn't be so bad but 4 weeks I was like really???

Last minute changes in appointments are usually inconvenient as well as rocking the mental stability boat. Generally, my attitude to such changes is very similar to yours, having frequently seen the immense pressure the NHS is under particularly during the last 12 months. If your wellbeing is affected by the delay and/or you have symptoms of concern, then it may be worth attempting to get in touch with your CNS  or GP, although you'll probably be in the phone call queue until the revised appointment date! Best wishes and I hope you can obtain some answers soon.

Yeah I might try and give the CNS a call just to see if I can get some answers of things that have been bugging me. Like I said maybe I need to be more proactive chasing up for advice answers and it reassurance. 

I deeply sympathise. At the end of my induction BCG I was told to expect  blue light rigid cystoscopy six weeks later. It ended up five weeks late, discovering that the BCG hadn't worked and now two patches biopsied instead of just one. I think I'd still be waiting if I hadn't complained to PALS. Still waiting for full results. The resulting anxiety level is, let's say, elevated. I hope your CNS service is more responsive than mine, I just get a voicemail service promising a callback with 72 hours. Needless to say, the promised callback never happens.

Hi Steve, really sympathise. Waiting for results is a nightmare. xx Really bad luck to have an unresponsive CNS, mine is fantastic and it just makes all the difference. Hope your team will come up with a successful treatment. I had 4 reoccurrences during my BCG treatment but all were lower Grade than the first tumour so we just ploughed on. My last regrowth was just before my final BCG (dose 27!) so I really expected I'd need a different treatment but luckily so far no further tumours. That was 4 years ago, so try not to feel too disheartened things may be more positive than you fear. H xx

Hi Steve75794,I’m so sorry you are still waiting for full results.My CNS is the same on the rare occasions I have had to phone you don’t hear back.It’s disheartening as you don’t feel supported.I hope you hear soon.Love Jane x