Bladder/Bowel Cancer

hazyjo

budget_babe wrote: »

HazyJo goodness you have all been through such alot, (()) hugs and take care. xxx
Get Carter hugs to you also, (()) xxx

Well Dad has had a letter today and has an appointment with his consultant next Wednesday, I though it would say more in the letter though.

So another week to go?

Take Care
Budgie xxx

Tip of the iceberg for me - had to deal with over 20 friends/family members/friends' parents having cancer - some no longer with us, some have made a full recovery.

I don't think there's much I don't know about cancer!

If caught early, there's a great chance of pulling through. Try not to look at the negative things. As far as I know, the prognosis for bladder cancer is extremely good if caught early.

Hugs back at you. I know how awful and stressy it is.

Jx

KxMx

Hi, I hope you don't mind me offering a patient view (not cancer thank goodness).

While it's easy to worry and fret about our parents, please don't treat him like a child that needs/has to tell you everything. He's an adult and therefore is perfectly justified in sharing as little as he wants to, even with his immediate family.

I stopped telling family when appointments were because I knew they would be sitting there waiting, worrying and expecting a call/txt the second I got out of my appointment, and I could not handle the pressure of that. I felt loads better this week when no-one knew I was going!

What i'm trying to say is, as desperate as you are for news, don't pressure him, or expect full and immediate disclosure and take your lead from what he says or doesn't say.

fluffnutter

The sad thing about wanting to keep things from your family to 'protect' them is that it does exactly the opposite. If you know a loved one is unwell but don't know the detail, anything you might be imagining is often worse than the reality and you become frightened and worried as a result.

This is why medical professionals will always encourage a patient to share everything that they can. It's better for the patient because they'll feel more supported and better for the family because they'll feel more in control.

However... you can't force people and unfortunately there are those amongst us, particularly older folk, who'll keep things to themselves for fear of 'upsetting' people. Ironically they're upsetting them all the more.

How about trying to offer your support the next time he has an appointment? You're always encouraged to take family along with you when you see a consultant so they'll be welcoming and pleased to see you. Why not say something like 'How about I come along next time, Dad?'. He'll probably brush you off but you could try being firm. Let him know that you'll feel happier if you can see the consultant and ask questions yourself.

Ultimately it's up to him and you have to back off in need be, but at least make your feelings known. It will genuinely be much better for the whole family if you're informed and involved.

Dunroamin

fluffnutter wrote: »

This is why medical professionals will always encourage a patient to share everything that they can. It's better for the patient because they'll feel more supported and better for the family because they'll feel more in control.
.

I think that's a vast generalisation.

I've had cancer myself, my father died of it and my husband is living with a very severe life threatening condition. In none of those cases has any medical professional discussed "sharing" with other family members and I would have been very angry if they'd done so.

That sort of "advice" seems to me to be well outside the remit of medial care and, frankly, rather intrusive.

KxMx

fluffnutter wrote: »

However... you can't force people and unfortunately there are those amongst us, particularly older folk, who'll keep things to themselves for fear of 'upsetting' people. Ironically they're upsetting them all the more.
<snip>
It will genuinely be much better for the whole family if you're informed and involved.

Maybe my situation is different to the OP, but I do take exception to this.
It is my decision what I tell my family.

Just because I choose not to does not mean I am "upsetting them all the more" and it's very unfair to label someone who does not opt for full disclosure as such. It is at the end of the day my private business. I have the absolute right as an adult to decide what I tell to whom, even close family.

Do you have any idea how I felt telling my family repeatedly, over the last 3 years (been sick for double that), "test was normal" "they don't know what is wrong yet" while they see me getting sicker and sicker. I am still in that situation and by telling them each time I was going and the outcome I was continually distressing not only myself but them.

That is why no-one knew I was going again this week (normal test results for the millionth tme) and I felt less pressurised to ring/txt the second I was out, before I had time to digest and think about things myself even, let alone tell the ins & outs to the whole family.

Now I got for a more general "will have results by the end of the month" so I know that family are not sitting at home and fretting (their words not mine) on the day of my appointment and expecting as I said a call/txt the minute I knew.

fluffnutter

Just letting you know what the general perception amongst the medical profession is. *shrugs*. In their experience people feel more supported and have an easier time undergoing treatment and recover more quickly if their families are involved. It's a big secret to keep that you might be dying. Families are there to support each other.

Each to their own though, and no one will ever be told to share if they don't want to.

Dunroamin

fluffnutter wrote: »

Just letting you know what the general perception amongst the medical profession is. *shrugs*. In their experience people feel more supported and have an easier time undergoing treatment and recover more quickly if their families are involved. It's a big secret to keep that you might be dying. Families are there to support each other.

Each to their own though, and no one will ever be told to share if they don't want to.

i DON'T KNOW WHETHER YOU ACTUALLY ARE A MEDICAL PROFESSIONAL BUT, EITHER WAY, YOU'RE OBVIOUSLY WELCOME TO YOUR OWN OPINION ON THIS.(Sorry, not shouting really.:o)

However, I do wonder when you think these cosy little advisory chats take place because no doctor or nurse has ever said more than the essentials to me, my husband or my father and that's been in 6 different hospitals ranging from London teaching hospitals to small local units.

fluffnutter

Dunroamin wrote: »

i DON'T KNOW WHETHER YOU ACTUALLY ARE A MEDICAL PROFESSIONAL BUT, EITHER WAY, YOU'RE OBVIOUSLY WELCOME TO YOUR OWN OPINION ON THIS.(Sorry, not shouting really.:o)

However, I do wonder when you think these cosy little advisory chats take place because no doctor or nurse has ever said more than the essentials to me, my husband or my father and that's been in 6 different hospitals ranging from London teaching hospitals to small local units.

Every time I've been to see the consultant with my OH they've reiterated the message about having support and that they're happy to see me there with him. Brother and father are both quacks and they say the same. My best friend's dad recently died of cancer and the whole family was involved in his care right from the off; he was encouraged to share with his family, did so, and every time he subsequently saw the consultant he took a couple of family members along and they were very much welcomed. When the OH was in hospital most recently the guy in the bed opposite was given a cancer diagnosis whilst surrounded by his visiting family. The doc came over said 'we've got the results of your tests', he asked whether his family should leave, doc replied 'it's entirely up to you but we like to discuss things with the whole family'. All the appointment letters the OH gets from the hospital say 'feel free to bring a family member or friend with you'.

In my experience, every health care professional has encouraged family support. It actually makes their job easier because when giving someone a difficult diagnosis, like cancer, they find that the patient often doesn't take anything in (understandably). It's far easier for them to have someone else there who can ask questions/discuss things.

As I've said it's ultimately up to the patient and their wishes are paramount. But, from the medical profession's perspective, they like family involvement. Better for them, better for the patient, better for the family (in most circumstances).

Sligo

Hi Budget Babe

My dad is 77 and he was diagnosed with bladder cancer last year. A big shock as he has previously been in good health.

Not sure what operation your dad has already had. If it was a biopsy then that will determine the level of further treatment or surgery he will need as it will determine the stage the cancer is at.

My dad's cancer had infiltrated the muscle wall of the bladder so he needed radical surgery. He had 3 courses of chemo to shrink it and then a major operation in June 2011 to completely remove his bladder (and the cancer) and part of his bowel was used to make a "tube" to the outside of his stomach and he has a stoma and a bag. They also removed lymph nodes and he had no trace of it spreading.

He has recovered so well and is coping briliantly with all the "extra plumbing" as he calls it. But it was a few months before he was back to himself. And his hair has grown back!!

It was a traumatic time but my parents are very pragmatic and said they just had to get on with it. I live in Ireland and my sister lives in Canada so I was the nearest to them! They didn't want me there when he was having the chemo (my irish relatives didn't get that at all!) as they wanted me to save my time off work for when he had surgery and I was with them for 2 weeks then.

If I can give you any advice or if you have any question, please feel free to pm me! If I don't know I can ask him. There is so much information and I don't want to bombard you with it here.

I had to respect my parent's wishes to visit and help when they wanted and not when it suited me. I have lived out of the UK for over 20 years and my mum told me that they were used to managing and when they wanted help they would ask for it and they didn't need anyone bossing them about and taking control just cos they were in their seventies!! That put me firmly in my box! But they were right too. And when they needed me I was there to do what was needed.

Sending you a big hug and hoping you find lots of strength and support from everyone's posts. x

Errata

Sligo wrote: »

There is so much information .........

Indeed there is, and the best places to look for it are the Cancer Research, NICE and Macmillan websites, rather than a site dedicated to helping people save money.