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

samouatt's picture
Posted by samouatt in 'Partner support', on 24 Oct 2011, 09:18PM

Ok so I'm really curious to know where the gaps are in chemo/living with a partner who is undergoing treatment for cancer orientation?  So what is the one thing that you wish you had known straight up front instead of having to learn through trial and error?

For me it was the following:

  • That Dex is basically a steriod and that with constant use it can cause mood swings and rages, oh and no dex after 3pm so that they are able to get to sleep (among a number of nasty side effects it seems to have)
  • Oral maxalon only works when taken before the naseau takes hold, and doesn't work well once it is in full swing.  So get your partner in the habit of taking it as a prevenative rather than trying to play catch up.  Once it starts call the community or pallative care nurse to get a maxalon injectable administered.
  • When neut levels are getting low, no more foods that could harbour bacteria eg tuna from a salad bar, small goods, reheated food, salad bar foods (water used to wash the foods may contain bacteria)

Well just a couple to start with but why not throw up a couple, just maybe we can get a decent list going and get it out to partners.

 

Simon

Comments

list

annie2's picture

_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.

Evil Dex

JustWill's picture

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 :)

 

Clean house from Dex

Leonie Moore's picture

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

Thank for proving my point

samouatt's picture

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

If only he would tell me!!!!

Leonie Moore's picture

When I know Simon then I will be able to pass it on!!!!!!!!!!!!!!!!!XLeonie

Hmmmm

annie2's picture

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...

Hmmm

samouatt's picture

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!

iclay's picture

Hi guys, As far as being told something sooner I can't think of anything at all.The whole time Erin went thru it I was for ever asking questions and if that didn't help google was good.Every trip to hospital was always a reason to go out and have lunch somewhere,lol.Lucky I like coffee and donuts too.We never made a trip just for hospital and made every minute count together.Every day was a learning curve with something different all the time.With all the doctors and nurses being so helpful there seemed nothing for me to be told but maybe if you are not sure ask a question, you'll never know if you don't ask and don't be afraid to ask any question at all.....

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

Annies Hope's picture

Hello all,

It's now 3 years since my wife passed after maginificently fighting spreading breast cancer for 13 years. Spread was to skin/lymph, lung, brain, liver, spine, two mastechtomies (forgotten how to spell it), lung collapsing/filling with fluid, the Chemo, the medications to fight the side effects of the chemo, the medications to relieve the symptoms of the helping medications. The phone calls to a brilliant oncologist (when all seemed to be going pear shaped), but only after numerous suggestions/pleads that her temperature was not something to play russian roulette with.

Knowing that home is a haven our loved ones cling to, whist as carer's the hospitals have rescources often deeply needed. We are OFTEN caught in the place of tension. This is draining. Carers, you need to take time for yourself to ensure you go the long haul and be the best you can for your loved one.

Some learnings for me as a carer were;

Be patient and THEN exercise more patience as you pursue the very best care plan (whatever your own rescources can add) and NEVER EVER GIVE UP!!! Pursuing the best for your loved one is something that can never ever be taken away from you :) As Stephanie Dowrick said at a seminar "those that love well, live well".

Demonstrate empathy and respect for all in your path, surrender the thought that I can control life.

NOTE: Despite having the best care from doctors and nurses, the EMOTIONAL PAIN (of her journey and yours) are deeply interconnected. We found this most difficult to process/acknowledge as it seems to draw comparison, or signal weakness, or fear of loosing the battle, or "you don't have cancer, what are you complaining about", etc etc. There is some truth in all of these!

TEARS are a very healthy & great form of release, not something to be feared.

Listening - I concede I was not real good in this area (particularly after completing a counselling course last year). SO I encouraged Ann to be open and honest about her suffering with her friends (a couple of really close ones that made themselves available).

YES ask/accept all the help you can get = physical/ emmotional/ spiritual, DON'T be too proud to ask. Individual knowledge is powerful, however COMMUNITY of family/friends/helper/doctors/nurses etc and GOOD RELATIONSHIPS with them is priceless and not to be underestimated.

The pain that is so VERY DEEP, REAL and seems UNRELENTING, BUT IT DOES PASS, even just for a moment a week/month or year. Relief is not generally scheduled, but happens most noticebly when a good friend is in the room, or in the middle of the toughest of times, which gives everything else perspective.

We manged to plan a family holiday, which meant stopping chemo  (in yrs 3 to 10). I took lots of photos.

I wrote e-mails of Ann's progress to family and friends. this helps with release and not having to repeat snippets or full story when asked when out. Means you can talk about it with their greater ubnderstanding but aslo talk about things other than cancer. Enjoying/celebrate the life of others helps.

I battled with clinical depression in the later stages of Ann's battle. What I DID was I got to the gym early morning for 45 mins (3x/wk) before going to work and took what the doctor prescribed. Gym/strenuous exercise is very benefitial, emotionally as well as promoting physical well being.

Yes, I carried a couple of copies of concise list of current medicines, dose, frequency, allergies/reaction, Phone Nos, key family members, to give to emergency Dr apon admittance. All Drs said how helpful that was. It also helps take some control back, getting on the front foot against this mongrel disease.

I endeavoured to give it to God, including THE ANGER!. I put this out there because I NOW KNOW (wish i knew it sooner) that ANGER is a very real product of the battle. We really need to find somewhere to take it, express it, release it in a good way, I internalised a great deal.

The companionship, prayers & faith of those  at my local church,(particularly those with more wisdom than me - I'm now 50). and being honest about dissapointment and fears was helpful. My end belief is God is bigger than cancer and death. That's good news, something deeply needed on this journey. Whether He should have answered more prayers the way I asked? well then I would be God, not a good idea, Jim Carey in " Bruce Almighty " springs to mind, lol!!

Whoever came thus far, I hope you found something in here that encourages you. You need time for yourself, that is not a crime. Taking control of what you can contribute is very powerful. Cheers Andrew.

Thank you

samouatt's picture

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

Thanks

dean's picture

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.


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