Father's diagnosis - what to expect

Hi DevotedDaughter and welcome to the group, although sorry to hear what your father is going through. Cancer in the bladder can be treated routinely but the ureter makes things slightly more difficult. We have had members in the past treated successfully with the same. Lack of communication and information has always been a problem. The not knowing and uncertainty can be the worst time. Once a treatment plan is put in place it gives something positive to focus on. I hope they can sort his pain out. Best wishes.

Thank you so much for your support and response Rily. I can see you've have a right old time of it too and I'm so sorry for what you're going through. is it intrusive to ask about the pain levels you've experienced and how that was treated prior to diganosis/treatment? Wishing you well x

Hi DevotedDaughter . Prior to my first TURBT (trans urethral resection of bladder tumour) procedure I had severe lower back pain. I was basically left to deal with it myself with painkillers. Once I had my first op, the pain went away and I went on to further treatment. Best wishes.

Welcome to the group.I’m so sorry to hear that your father is in pain.I hope that he can be transferred to a specialist hospital and that they can help.The lack of communication is so bad in some hospitals and that just adds to the stress.Once they have a plan in place you will have a better idea of the treatment that lies ahead.This is a friendly supportive group and we are all here to help.Love Jane 

Thanks so much Jane - I really appreciate you taking the time to reply. Fingers crossed we can get his pain managed soon and get a treatment plan! x

Dear Devoted Daughter, two things to add besides my welcome to the group and the helpful replies already.

One. have you contacted your hospital's PALS to express your concerns about both the length of time you Dad has been in unmanaged pain and about the appalling communications?

Two, have you signed up with your local carers' Association to get support for yourself? It varies a lot from county/city to county/city, but worth checking.

best wishes, 

Denby

Hi Denby,

Sadly, we have spoken to PALS and they've proven very unhelpful. We raised our concerns to them back in May and have had no support or help from them since. Since his eventual admission a month ago, we just keep being told that the ward manager is aware. I've never known anything like it to be honest. My dad has lost all faith and it's had a huge impact on his mental health - that was before the diagnosis.

We've not actually been given anything by way of reference documents or guidance since his diagnosis - I know about MacMillan as my friend's mum is a nurse. I don't even know where to start. 

I'd like to get my mum some proper support but we're all waiting for the hospital(s) to tell us what to do. My mum's been administering ALL personal care for the full 12 hours that she's able to visit and it's taking a toll on both her and my dad.

Can we just reach out ourselves? Do we need to be referred?

Thanks,

DD x

Hi again, you should be able to self refer for yourself and your Mum. But Carers' Associations aren't about providing the care, but providing usually more social support, benefits signposting and so forth to you and Mum. Some offer chat groups, cafe type meetings, occasionally beauty therapy. Mum might be entitled to a free legally entitled Carer's Assessment. This can be done by Social Services or may be contracted out to the voluntary group.

Hope that answers your query somewhat,

Denby

That really does - thank you so much Denby. I'll look into it today. 

Thank you for taking the time to reach out - wishing you and your family well x

Hi DevotedDaughter, 

I am sorry to hear about your father, I am not sure if it is similar to the cancer I have just been treated for, I was diagnosed with upper urotract cancer which was advanced and involved the kidney and the ureter and yes it is a rare one! I must say my treatment has been outstanding from diagnosis last December to 3 cycles of chemo (GemCis) Jan - March. Chemo worked and shrank tumour enough to allow surgery, I then had a radical Nephroureterectomy (removal of kidney, ureter and bladder cuff) end of April which went well, I have just had my first CT scan post surgery tonight to check for any reoccurrence.  
The one thing I never had apart from a dull ache in my side was real pain.