HOW DO I PROVIDE THE RIGHT KIND OF SUPPORT

Dear Giselle,

I think you are doing very well. It's hard watching someone go through treatment because the real work to cure them happens elsewhere. You have to trust the medics know what they are doing.

I have faced what your daughter is facing and am now out the other side. What I needed from my family was help when I was too weak to do things myself and someone to listen when I talked about the treatment. Why not ask your daughter what she wants, that way you don't need to guess.

I didn't talk to my husband or daughter about fear of dying because I coped with that myself. But everyone with cancer has to face that because the disease could kill us.

I had my bladder removed nearly 3 years ago and have a stoma. And, because I had lost 7 stone some years ago my stomach is flabby. The stoma fits OK and work well despite that but it's easier on a flat-ish stomach. 

From what you say, the doctors have told your daughter to lose weight before the op but it's scheduled for next month. When I lost weight (WeightWatchers) apart from the first week - when I lost 6 pounds of mostly water - the most I lost was 2 lbs a week. 

Reading between the lines, I think they probably want her to show she can lose a bit by her self and maybe keep losing afterwards.

I don't know much about medical weight things and maybe you should ask her CNS what that means. It wouldn't be good to do anything that made her weaker than she is or possibly affect the cancer treatment.

I did hear on here once from a patient whose doctors were planning to do a tummy tuck as part of the op. The op is long anyway and and takes a lot of a patient's strength so I doubt they want to spend any longer than they have to.

The bags from her kidneys thing is I think a nephtostomy and does exist. Again talk to the CNS.

Otherwise, apart from a healthy diet  walking was how I lost my weight. And that's something maybe you and she could do together now. It would certainly help strengthen her pr-op and show commitment to weight loss and fitness.

All the best,

Latestart

In my opinion you have made a positive step in being able to provide the support your daughter needs in joining the forum here you will be met with kind and supportive answers from people who in exactly the same situation as your daughter and have completed treatment no question is to unimportant here

all the best to you and your Daughter 

Ste 

Hi Giselle3f1939,Welcome to our friendly group.I’m sorry your daughter needs her bladder out.It is a big op but there are several of us on here who got through it and are doing well.
Pre op encourage exercise as it helps to be as fit as possible.It’s common to lose weight post op and your daughter may find she doesn’t feel that hungry anyway.
She will need some help for the first few days when she comes out of hospital.My sister helped me by doing the shopping and fetching food and drink.She was also on hand to make sure I got upstairs safely.I could wash and dress myself but was very slow.

Eating little but often is best and your daughter will need to build up walking distances gradually.Rest when she needs to rest /sleep as rest is very important to aid recovery.
Feel free to ask any questions here as we are all here to help and support you and your daughter.
Best wishes Jane 

Thank you for the reply.  I feel better that this kind of support is out there for people as the process of care appears to treat the illness but not really support the patients and family.  This is not a go at the medical professional but at the slow and disjointed process they appear to be bound by.  Maybe one day we will be able to change that.  

Once we come out the other side of this, it is my intention to help change and make things better for patients in anyway I can.

Just flicking through the forums I am totally amazed and encouraged by the comments and fortitude of patients and carers alike.  So thank you all for contributing as I have drawn strength by what you do and continue to do.

That is really good to know.  No doubt I will have questions along the way. Thanks Jane.

Welcome to the group. You don't say how old your daughter is - I wonder if her fear of dying is partly related to the counselling pre-op. It is one of the risks they have to list, but my surgeon was reassuring that the statistics included everyone of all ages and fitness having the op. He commented that being young (I was 57) was in my favour. Cancer, especially in the bladder, is not the death sentence it once was, but the fear does linger. 

Maybe there is a cancer support centre near you eg Maggies, often associated with the hospital. It could help both of you to visit in person. They can usually offer therapy sessions and such like. Very best wishes to you both.

I think you hit the nail on the head.  It followed on from meeting with the surgeon.  I will find out if there is a cancer support centre that we can try.  Thank you all.