What was the one thing you wish someone had told you sooner?

Thanks for sharing guys. Looks a while since there has been any activity on this topic, but FWIW, I'll add a few thoughts here ...

- be prepared for family and friends to let you down. While they all start out saying 'let us know if there is anything we can do', inevitably when you need help, they will not be around ...

- make sure you look after yourself first. Like they say when you are on a plane, but your own oxygen mask on first, then help children, others, etc ... you are no use to anyone if you don't look after yourself. That is WAY harder said than done, and more than likely you'll fin yourself run down and unwell ... just remember IT IS NOT SELFISH to look after yourself, and if needed, do it ahead of anyone and anything else.

- money issues can be stressful and more than likely you will face financial issues and unplanned costs, cash outgoings, etc. so talk to your bank managere early, put your home loan payments on hold (all banks allow you to do that, you just pay interest only for a while), and get access to ready cash early in the process (i.e access any redraw, cash in investments, etc) ... you can't buy good health, but you can throw everything at it to try and make it better. In the end, it's only money, you can get more, you can't get better health or more time with your loved ones

- look for the "reason" ... while that might soind hippy, whacky and a tad too out there. Almost everything happens for a reason, and while at the time, it may not be obvious, EVERYONE I have ever spoken to that has been through a serious traumatic event has ended up some time years later realising there was a reason.

- and finally, as a bloke, solving things is core, and with all this stuff it is bloody hard to do, so take control where you can, and make sure your loved one is getting the best treatment possible. Do not accept poor service or treatment from doctors or nurses or medical people, demand better, and change specialists, doctors, etc if you have to ... do not be afraid to stand up for your right and the right of your loved one to get the treatment, care, support and help deserved.

Just my $0.02 worth mid battle.

Dean.

Hi Andrew,

Thank you so much for your open and honest response.  For me having now lost Andrea (in Dec 11) it is even more important to speak up and help those going through this experience as carers to know how they can feel like they are getting some control back.

Looking back exercise is so important and it was my sanity rope back to life after Andrea passed.  Taking time out for yourself is another gift carers rarely allow themselves.  

Again I really appreciate your response to help others

Cheers

Simon

Annie2,

I'm not trying to help you!  You have access to a staggering array of support options.  I'm trying to help carers.  So I apologise if you have taken offence but not for what I said.  

What I am after is practical ideas that help us to help our partners especially when we are dealing with the effects of chemo or this cruel disease eg have your medications on a spreadsheet so that you can print it off and stick it in your grab bag before you race them to A&E, how to keep a log of temps, blood pressure and pulse that you can give to A&E or the pallative care team, how to know when to call a nurse to give your wife a shot of morphine or maxalon, how to recognise break through pain from spine mets, where to get lessons on how to give intermusclar injection, the advice that extended exposure to chemo agents can give you cancer so be really careful during the time when our partner is cytoxic, you know useful stuff! 

So again if you are offended I apologise for your offence not for my position.

Oh and what hurts is having to hold your partner while the oncologist looks her in the eye and tell her that there are no more treatment options available!

Hmmm, i can understand your anger but gee you are harsh in your reply.I think my suggestoins do help carers, take them out for coffee afterwards, my mum always drove me down(3 hrs away) then took me for cake and coffee and shopping afterwards to get my mind off the horribleness of what id just done.

Pack food for your partner, no matter what anyone says that food is terrible.

I think your title thanks for proving my point is hurtful as well,we are all on here to try and help each other go through a trying time of pain, indecision, anger,tears and frustration. having a go at people who are trying to help in my opinion is not necessary.sorry you didnt get what you needed...

Thank you ladies for your input.  You make some good suggestions, however I'm not sure how your suggestions are any help to carers!  I am asking what cares wish they knew (not cancer patients).  Eg when to call for help, when to suggest your partner should take maxalon or dex (and given my wife has been on a 4 mg dose of dex for more than 12 months and will never get to come off it due to inoperable brain mets, I think I have this covered.)  How to deal with chemo nurses, when to put your foot down and insist they listen to you.

It may seem picky but this is exactly the problem, you seem to think we need told what to do and what our issues are.  Well you aren't even close to the mark of knowing what we want or need.  So instead of you telling me what you think I need to know, how about bothering to find out what I my (and other male carers) needs are.  As a suggestion how about you ask your partner next time.

Good luck in your struggles

Simon

Yes I agree with all the above information but there is one thing missing since chemo finished (and of course dex)  my house is not as clean!!!!!  Boy did I have some energy to burn the day prior to chemo - and I put it into cleaning the house!!!! Can't say I miss the after affects though of the "come down"  Hang in there anyone who is still on it.  I have always wondered how "people" do drugs.  It definately isn't for me!!! XLeonie

annie has some good things on her list and I just wanted to add that I think the Dex also eats at the lining of your stomach (depending of course on how much you have - I had large amounts as I reacted to chemo).

So my after chemo box of tricks included nexium which reduces stomach acid so you can give it time to heal.  I also found that I didn't need the anti-nausea when I took these as the weird "I am hungry or do I want to vomit" feeling was controlled by this as well

And definately every treatment was followed by cake :)

annie has some good things on her list and I just wanted to add that I think the Dex also eats at the lining of your stomach (depending of course on how much you have - I had large amounts as I reacted to chemo).

So my after chemo box of tricks included nexium which reduces stomach acid so you can give it time to heal.  I also found that I didn't need the anti-nausea when I took these as the weird "I am hungry or do I want to vomit" feeling was controlled by this as well

And definately every treatment was followed by cake :)

_That acidic foods create ulcers due to the chemo affecting the linings of all gastric tracts.

_Sometimes chemo can take all day instead of only a couple of hours.Due to blood test problems,business in oncology,reactions to meds.

_To take foods and drinks,hospital food is terrible to consume when you arnt feeling well.

_After chemo should go for a nice coffee and cake to get your mind off what you just did.