Practical tips for day-to-day matters- please share with us

Moderators

CanaLoon,

Welcome to Breastcancer.org! Thank you for sharing your tip and it sounds like you may have a new business on your hand!

We look forward to hearing more from you soon!

--The Mods

NeverForsaken

@ Bigbhome: Excellent recipe ideas, thanks!

Leapfrog

I've just come across this thread. I've done most of the same things others have done. I'm a clean freak/neat freak so it's been difficult for me to allow the house to get untidy but I prioritise what I'm going to use my energy on and have decided a few books, papers and shoes that are not in their place really isn't anything worth worrying about.

Because of my bone mets ironing is too difficult for me so I now have that picked up and delivered to the doorstep again the next day. To have clean, ironed clothes is a blessing and money well spent, even though I always found ironing therapeutic.

My biggest decision, though, was to buy my meals through a website and have them delivered. My husband and grown up son can both cook and are only too happy to cook their own meal but, because of my nausea, sore mouth and loss of appetite issues, along with food sensitivities, I've become very difficult to cater for. After some experimentation I found a site that has very healthy meals of the type I like and I can choose soft foods so I'm now having my favourite meals of chicken, fish or lean beef mince with brown rice and lots of fresh veggies every night. This has been a big help. I've put on some weight and all we need to do is heat up my meal each night. When you take into account going to buy the food, putting it away, meal prep and cooking, it really isn't a huge expense.

When it comes to needing a nap, my body doesn't just tell me, it shrieks at me to stop and take time out so I do.

I'm learning, for the first time in my life, to put my own needs first and not to feel guilty for looking after myself and doing what I want to do instead of my old attitude of not allowing myself to rest unless all the work was done. We all know a woman's work is never done and that applied to me. It's difficult but I don't really have a choice. I just can't do what I used to do.

Lita57

Amen, Leapfrog, neither can I. It's frustrating, but it's our reality.

L

SandyPage62

hi

I was diagnosed with stage 2b breast cancer in 2009 and after a double mastectomy and chemo I was C-Free until June 2017. Metastasized in my liver - 3 tumors- one 9cm- did 9 rounds of chemo. Now all have reduced by 50% and I stopped chemo and replaced it with a trial taking ribocyclib and letrozol. I am tired a lot but and have trouble getting moving in the morning. Gone to part time work and hoping to collect disability insurance. I really cannot believe I only have a 22% of being here in 5 years- I plan to fight hard and practise accepting my energy fate.

Hoping God and this new drug regime will bring me a miracle cure.

Anyone out there who have had what I have and are here - I would love to hear your story!

Cheers

Sandy

Moderators

Hi Sandy-

We want to welcome you to BCO! We're so sorry you find yourself here, but we hope this community is a source of support for you. The members here, and in this forum in particular, truly understand what you're going through.

The Mods

Maire67

Leapfrog. I was folding pillowcases today and thought that was the first thing I learned to iron . Then I moved up to underwear. My mother had us all ironing ny 7. We thought it was fun. The woman was a genius. Now I take them out of the dryer 3 days after the beeper goes off. I look around and think of all the time I was nuts about the clean house. Now finally am letting go because I'm so darn tired. I took a 3 hour nap today after a night of no sleep with bone pain.. Neulasta is working hard.

Hi Sandy. Welcome. Lots af great support here.

Maire

Leapfrog

Lita, Maire....it's good to know I'm not alone in this. It's good for all of us to know. It takes me all day just to get a shower and get dressed, prepare a simple meal, eat it, clean up as necessary and do the same again and again because of the tiredness and lethargy and the necessity to stop and rest my back frequently because of the pain. Then, every mid afternoon I have a pain spike despite the Tramadol, Targin and Fentanyl I'm on so I just have to lie on the couch with my back fully supported and look at the mess around me and just learn not to care.

Hi Sandy....my story is different but near enough to know how you feel. You'll get lots of support, as Mair has said. The way I look at it, though, is not to google statistics and worry about how long you have. It's different for all of us. You're very lucky to be on a trial of Ribociclib and Letrozole. Ribociclib hasn't reached Australia yet. I'm on a trial of Palbociclib/Ibrance and Letrozole and I'm very fortunate to have been accepted on that as it's only a small trial. If you're able to have Ribociclib that's a plus and, if .....a big if....it stops working there will be more new treatments coming on stream. I look on my treatment only in positive terms and absolutely, flatly refuse to be negative or to lose faith. We need to look on every day as a blessing and enjoy it to the max. Everyone should do that that, not just us, but for us we need to find the simple joys in life and live, no matter our limitations we have to find a way of finding that joy. The only thing that is different for us from the way it is with those who are healthy is we know our time may be limited so we don't take anything for granted. Everyone has a time span for their life but we're aware of it. Any time you need support we're here for you.

Hugs

Lita57

Thanks Leapfrog....I needed your little "kick in the pants" today.

My eyesight is really starting to go because of the brain mets. I was warned of this. I won't get another MRI for at lest 4 weeks. Whole brain rads ended Sep 20, and they like to wait 2 months at least.

I have leptomeningeal involvement with these 20+ mets, so my time now is REALLY limited. I just want to be around for one more Christmas and hopefully be okay enough to go to the desert again in March. That's 5 months from now. We don't know if I'll be here then. The docs don't know either. I'm still on chemo, but the pain and fatigue are getting worse.

I have to cut myself slack every day and just be grateful....but I can certainly tell the difference between where I am now and where I was a year ago. We can't make those comparisons on a daily basis if we want to remain sane, however.

Enjoy the weekend!

L

Leapfrog

Oh Lita.... you didn't need a "kick in the pants"..... you have a great attitude and I'm so, so sorry about your progression, I really am. I wish I could reach across the oceans and hug you. Your remark "we can't make those comparisons on a daily basis if we want to remain sane" is something I will remember and hold in my mind when I think of you. It's very profound. Be kind to yourself and know that you are loved and treasured. I wish I knew what else I could say that would be of comfort to you but I can only think to tell you how much I care and how I will be praying that you make that trip to the desert. I love you.

Leapfrog

CanaLoon, I don't know whether this is a good idea or not but it just popped into my head after reading your post about house cleaning and people offering help. We've all experienced it from when we were diagnosed.... about fifty people say, "Let me know if there's anything I can do" and you say. "Thank you" but you don't because you have no idea whether they mean it or what, specifically, they would do for you. I've posted lots of articles on Facebook on How to Help Someone Who Has Breast Cancer. They all say the same things, i.e. prepare meals for them, bring them flowers, send a card (I personally don't see how that helps much. I'm all for practical help). But, how about if those of us who need help, especially when we're like Lita and myself and many others, who have spinal compression fractures and rib fractures and are limited in our movements.....how about if we posted on our Facebook pages something like "Some friends offered me help in the early days of my diagnosis and I was ok then but now I really do need help with......." and list the things that we do want help with. That way people will know what they can do because most of those who offer help are genuine but feel they're intruding if they keep asking. Just an idea for another tip that you could do whichever way suits you.

But, you know, if you wanted someone to cook some meals or ferry you somewhere you could perhaps organise something that way.

As Lita said, stay in touch with whichever discussion thread or threads help you. There's an enormous amount of support and knowledge here.

On the emotional side, you'll have days when you feel cheated, angry or just plain frustrated and that's ok, this isn't a fun trip that we organised for ourselves. That being said, I try not to waste my precious energy dwelling on that too much. I intend to live with cancer, not see it as something that might possibly take my life one day. I can't even say the words about the alternative to living with it, not because I'm afraid of dying; I'm not, I just intend to live as much of my life as I can and not spend any time on self pity. And that's where getting practical help comes in. When you're no longer struggling around trying to do things that you're no longer physically capable of doing, you can do something nice for yourself and why shouldn't we all do that for as long as we can? We're forced to do a lot of things we don't want to do; in my view we deserve time off for good behaviour.

bigbhome

Great advice leapfrog! I had a friend who would send me funny, silly and sometimes heartwarming cards every few days and they always made me smile and feel thought of. Find the simple beauty in everyday. Lita is a wonderful role model, with that lovely smile and fabulous sense of humor!

Hugs and prayers,

Claudia