Hard to find a positive

Hi Carol and welcome to the group. Here you will find people with vast experience and we will support you every step of the way.

I was much the same as your father up until the end of the operation where my bladder and prostrate was removed. I only had the one turbt , chemo, then the radical cystectomy. 

This was all difficult enough to cope with but I can't imagine how difficult it is for yourself and your family with this additional. It all seems to bear down on you at once and you want to be able to do things but you can't. 

Iam not long new the forum myself,  but there are those here who have years of experience and will be only to glad to pass on their advice about who to make contact with.

We all deal with cancer in different ways. When I had mine my wife and daughter would ask me morning how I was. I would answer them with honesty. Either I was feeling good on that day or I was not. I then asked them and they did the same. We hid nothing about our feelings. If all was good that was brilliant,  if there was an off day we talked about it . This worked for us, be open and up front. It kept us going. Everyone of course will do things their own way but thus worked for me.

Others will be along soon Carol to help you

Best wishes 

Mark

Dear Carol,

This is very hard for you and for your family and it is not surprising you feel down.

The first thing I would say is to ring the Macmillan help line and talk to them about how you feel and how you think you as a family need to talk things through. They do also have a bladder cancer support group accessible in person or online.

As well as that there are Maggie's centres where patients can have counselling, do yoga etc.  And there maybe other places near you that can help.

About how to reframe your own thoughts maybe I can help a little. First of all, I like you had a parent who had bladder cancer. Mother, a heavy smoker, died in 1974 after first ignoring her symptoms and later, after I as a 21 year old student dragged her to the GP,  finding it was too late. She died 10 days after telling me over the phone she had cancer. She hadn't known herself for certain for much longer. Those days, in any case, I doubt they could have done much even if she had gone straight away. I stopped smoking at once. In fact I learnt to be glad she did not suffer for very long.

So when I found blood in my urine I went straight to the GP, was tested for infection and when there was none insisted they refer me to the best local hospital. They did.

Since then I have had more or less the same course of treatment as your father. So far so good and I am under regular review because bladder cancer does recur, as you have experienced. 

Cancer is difficult to treat and to cure. By its nature one can never be certain of how it will react. So what I would say about your father's case is that they seem to have done the right things but they have not always worked out as hoped.

Moving beds around isn't ideal but it sounds like they were under pressure so  maybe that's why they let him out of hospital so soon. I was told I would be in the ICU for 2 days (not weeks)  and after that on a ward. I stayed longer than he did there but actually could have left sooner but my husband ended up in hospital himself (he's now 81 and I'm 72) so I bed-blocked until our daughter could move in and look after us both.

I'm sorry he finds the stoma and bag hard, maybe he and your mother should get the stoma nurse in and ask her for help. There may be tricks to help get the bags to stick better for example. 

From the start, I have remained positive, it must be my nature, helped along by having all the treatment that my mother could never have and being very relieved that I came through the bladder removal operation (after some problems that at first meant it was cancelled). I know that nothing is guaranteed and try to take each day as it comes. I have never cried about my cancer. Instead I use humour. I'm lucky that way.

My husband felt so stressed by my cancer that he made himself ill and my daughter and her husband had to bear all of that. It brought us closer and I have no doubt she still worries like you do. We talk about everything which helps. 

I hope that your parents are able to cope with the recent news and that the medics are able to find some treatment that helps your father. Waiting around is hard. Especially when all one can do is watch and worry.

We are doing what we can to enjoy life, spending time together, having stays away or meals out - another one tonight. I'm hoping these will create memories my daughter can look back on after we're gone. At our age, nothing is certain. I expect your parents look at life in much the same way. I hope you can do the same. 

All the best,

Latestart

Hi Carol,Welcome to the group.I’m so sorry to hear what your father is going through.As Latestart has suggested the stoma nurses should be able to help him with regards to the urostomy.I think you have to learn to embrace having a stoma and some find it much easier than others.With more confidence you can lead a good life with a urostomy.I hope you will get some support by joining us on here.Best wishes Jane