Out of my mind...

Dear Spannermommy, just firstly to send you the most enormous virtual hug. It shouldn't be as it is for you and your dear Dad.

Please try calling Marie Curie and Macmillan for advice, a sympathetic ear and hopefully some real help. 24/7 you don't have to be suicidal to talk to Samaritans, they will listen whatever is making you frantic. And don't fail to badger Social Services either, unless one of the cancer charities will do it on your behalf.

We all here I'm sure hope to hear soon that you have got help of some kind, 

Dee

Thank you so much Dee. x

Hi Spannermommy,I’m sad to hear how badly you and your dad have been let down.Perhaps if you contact your dad’s consultant you could be given a better understanding of the situation.You need some clarity and I’m sure that would help both of you.Denby’s suggestions are well worth taking up,it will help to talk and get some advice.Sending hugs.I cared for my late mother unaided and understand how hard it is.Love and best wishes Jane xx

Hello Spannermommy, I myself am in a similar position to your dad although nobody's told me that my bladder cancer is terminal they haven't given me any real information that can help ease my mind or prepare me only that it has spread.

I have spent quite a few days speaking to McMillan nurses and also Urology Specialist Nurse I like yourself feel as though I'm going out of my mind trying to find information.

Its the toughest journey I have been on and I feel for you and your dad.

Like others have said call someone and maybe as I will be doing at my next consultation ask the simplest most frank questions and ask for the full story and everything that your concerned about you want an answer to, (Good or Bad)

Also sending hugs as I know how bad the communication can be.

Thank you Jane.  How on earth do you get to the consultant though??  We last had an appointment with dad's urology consultant in November 22 who said until dad had a further cytoscopy we wouldn't know more.

Before cancer I had a chronic bladder condition and was able to E mail or write to urology with queries and get a reply.It’s worth a try especially as it’s seems impossible to see anyone face to face.I haven’t seen anyone in person for 3 years and I had bladder removal.Best wishes Jane 

I'm so sorry you are in this same position.  I hope you have somebody fighting your corner like I am with Dad.

Dad was given the terminal diagnosis after his last bout of haematuria that he was admitted via A&E.  He was peeing pure blood with clots yet it took 7 hours for somebody from urology to turn up.  He was admitted and spent days with a catheter having his bladder flushed and blood transfusions.  Oncology arranged his radiotherapy whilst he was in hospital which stopped the bleeding.

When dad came out of hospital we were given a telephone consultation with the Oncology Consultant who couldn't shed any light on where we were with Dad's cancer but told us there was nothing more Oncology could offer dad so if he were to be admitted to hospital, we were to ask for urology.  We were told he wouldn't see the Oncology Consultant again so goodbye and good luck!!

We are not short of answers for want of asking questions.  I have a whole reporters notebook of Dad's journey, what has happened, who he had his 'care' from, the questions I asked, some answered, some just have question marks still under them.  I have to say that I am not a shrinking violet and will not be talked down to by a consultant who is used to having his boots licked by his minions.  My dad was told at one point by a consultant that he was taking up a bed needed by somebody else.  I wiped the floor with him to the point that two nurses were recording the 'exchange' on their mobile phones.  Dad had had a TURBT under epidural.  He'd been in hospital having his bladder flushed for four days.  They were trying to discharge Dad when he hadn't even seen somebody from Urology to tell him how the operation had gone, if anything had been acheived.  He still had his catheter in.  I was going nuts, I was disgusted.  When a guy came down from Urology 6 hours later he just said the operation went as expected and Dad's consultant would discuss the reults with him when he saw him in Outpatients, told the nurse to take the catheter out and off we went.  We've waited until January to get the Cytoscopy appointments where the procedure was aborted so now dad goes in on Friday to have the procedure done under an epidural if they can find an anaesthetist brave enough to do it with the state of my dad's heart and his breathing.  Dad is frantic because he's up every hour in the night trying to pee.  He's exhausted, he's frightened because we basically have no idea what to expect and its keeping me awake at night worrying about dad.

I am not afraid to ask the questions, it just appears his Urology team don't want to answer them.  We'll know more after we've done this, we'll know more when we get bloods back, we'll know more when..... and so it goes on.

Surely this is not the way to treat a terminal cancer patient.  We need to know what's going on but who the hell will tell us???

I wish you the best of luck and really hope you can get some answers from your team.  Let me know if you do and who provided the information.  Thinking of you too.

I’ve just remembered that on one occasion after writing my urologist telephoned and was able to discuss what would happen next.I have also E mailed when they had forgotten to do the regular cystoscopy and got a letter back with an appointment and an apology for being overlooked.

I have no e-mail addresses, I have contacted PALS and they were of no help at all.  I feel like we've been sealed in a bubble and we just bob around the hospital having things done.  Dad gets poked, prodded, tested but we stay in the bubble with nobody telling us anything.

If there isn’t an E mail address on the hospital letter then there should be one on line under urology department.Or write to the urology department.I’m appalled at the lack of care your poor dad has received.It’s really shocking.It’s great that he has you to support him but the hospital should be providing some answers.My mum didn’t have cancer but I did have some battles trying to get her decent care.I’m sure you must feel utterly exhausted.Love Jane