Dad's waiting for full diagnosis

Hi Apples and Pears,Welcome to the group.I’m so sorry that your dad is suffering.
If you haven’t already done so it is worth asking whether you can be informed when there is a cancellation.Providing your dad can get to hospital at short notice then he may be able to get in quicker for his TURBT.
It is common to have a second TURBT a few weeks following the first.This can help with final staging of the cancer and to remove more tumour if it’s large.

Most people on here drink lemon barley water in addition to water as it can help to prevent urinary infections.I used to find a hot water bottle helpful for the pain.Hopefully your dad will feel more comfortable following the TURBT as they will remove as much of the tumour as they can and take biopsies.
Please feel free to ask any questions.We are all here to help and support you both.Love Jane xx

Hi Jane, thank you so much for taking the time to reply to my message. I've got him some barley water today (which he was quite positive about!) and have also suggested a hot water bottle. Thank you.

️I will try and find out about cancellations - he would definitely be able to get to the hospital at short notice, so it's worth a try. 

Jen

It might also be worth asking someone medical if it would be appropriate for him to self catheterise while he is waiting, to deal with the difficulty passing urine. Hope he gets a cancellation soon.

My OH has got to wait almost FOUR MONTHS for a MRI needed before they deal with the enlarged prostate that has him up multiple times a night to pee, since his bc was successfully dealt with. The loss of sleep is very wearing, causing irritability all round. Do you think that's why your dad is tired?

best wishes, 

Denby

Hi Denby,

Yes - that's a very good point! I think loss of sleep must be a factor. I feel so sorry for him up and down so many times in the night, meanwhile I'm lying upstairs (also awake) worrying and feeling useless wishing there was something I could do to help

Sounds like you must know that feeling only too well with your OH. Sleep deprivation is no fun for anyone.

I didn't know self catheterisation was a thing - it hasn't been mentioned but good to have another avenue to explore. The last nurse we spoke to was saying that because of the UTI, a catheter would have more risk for him, so I had it in my mind as something to be avoided if at all possible. 

Jen

Hi Jen,I feel for you both.Sepsis would be a concern with a catheter due to the repeated infections.Your dad is getting uti’s because he is not able to empty his bladder easily.I had the same symptoms and it’s very tiring..Hopefully they will be able to remove some of the tumour during the TURBT and that should help.How old is your dad ? love Jane x

Yes - all seems to be a case of waiting for the TURBT

He's 68. He's had MS for about 20 years and more recently been diagnosed with COPD to boot. 

I'm thinking about taking him to A&E today after last night, but will have to see what he says (he's very reluctant to go in). Otherwise on Monday, hopefully he'll have some new targeted antibiotics from the uro oncology nurses 

Thank you all so much for your replies - it really helps knowing there are other people. 

Xxxx

Hi Jen,Hugs,that is a lot for your dad to contend with.If your dad is unable to pass urine at all you need to get medical help fast.Do see someone if you are concerned about his symptoms.I cared for my late mum for many years and had to put my foot down on occasions and get help even when she was reluctant.Love Jane xx

Hi Jen

You and your Dad are having to cope with such a lot right now. I have found that you sometimes need to demand to get the help that you need for a loved one. Is your Dad on antibiotics at the moment? Or are they waiting for urine culture test results before prescribing them.

As Jane says, please seek help if the situation worsens.

Sending you both love and hugs, Ade xx

Hi Jen, you're at the start of it all and that's scary. As someone who was there over 2 years ago I hope to reassure you that things will feel a bit better once things start moving. Lots of water - around 2 litres per day are the best way to clear things out. I hope he can pass it little and often. Plus can I suggest getting your Dad a night bottle so he can sit on the side of the bed, relieve himself then lie down and sleep quickly. My own husband was very resistant to this but it helped a lot. (All elderly men seem to have to get up a lot at night whether they have cancer or not - in fact I'm the bladder patient). The one thing bladder cancer teaches you is to deal with quantities of urine without a thought! Good luck to your father and to you too, I'm sure he's glad you're there to support him

Thank you - yes a night bottle sounds like a good idea for him and I'm going to try and get hold of one. 

Things seem to have calmed down a bit for us today - I think a combination of the antibiotics finally having kicked in and I've been pretty diligent with his pain relief (pacing out paracetamol and ibuprofen throughout the day and night) seems to be doing the job - keeping everything crossed that he doesn't go down hill again.

I also got him in to see the urologists team yesterday and they reassured us both as they have tested his kidney function and ability to empty his bladder and although neither is great, he doesn't quite meet the criteria for being admitted - so that is good.

Thank you to everyone for your thoughtful and really helpful and reassuring replies. 

Jen