5 Years ++ Stage IV Survivors

Get that foot checked out. It is unusual for neuropathy to just appear out of the blue, when you are not in active chemo.  I know there are late-term side effects, but I have not heard of neuropathy being one of them. Worth a talk to your Onc when you see him. 

I hear your 'voice' and you sound tired. You have been through so much, and it is not suprising that you want to question if it is all worth it. You are still recovering, physically and emotionally from your huge surgery, and now you are faced with chemo. That is enough to bring you down and questioning. 

I know you can't be in your speical mountain place all of the time, so you need to bring a bit of that mountain peace to your life in the valley. Do you by any chance listen to healing music? It is not everbodies cup of tea, but it is something that, along with other things, has helped me in my journey.  Here is a link to just one of my most healing pieces of music, by Steven Halpern  https://www.youtube.com/watch?v=ZaNJeGUZynw&list=PL3F7ClbnI0hyeXRr0LAMAdbDn13iu76nU&index=3&t=0s  

You ask for a story of hope, and I don't know if I have one, because, compared to you and many, many others, my Cancer journey has been relitivly easy.  My life on the other hand, was not. So much childhood trauma which left me with physical and emotional damage. While I was a pretty 'normal' person on the outside, the inside was a mess - again, both physical & emotional. I lost two babies and had neumerous surgeries to repair damage, which worked, and now I have two lovely sons. I never sought emotional help, but found it in a book when I turned 40. I was just getting to a great place in my head when I was diagnosed. You would think that Cancer would ruin all the hard work I had put into being 'well' in my mind, but it did the opposite; it literally healed me. It healed me from the trauma of my young life. I guess the moral to the story is, there can always be something positive in a negative situation.

Now I've rambled on about that, I do want to let you know that you are allowed your low moments; your questions of 'is it all worth it?' as long as you pull yourself out of them, and, like you say, put one foot in front of the other and move forward. 

You are a treasure. We all love you, and are behind you as much as we can on a forum. And I have no doubt you are surrounded by people who love you in the real world. We are all here to help you, to carry you if need be. 

Tru

myAZmountain said:

5 year survivors

As a Stage  4 with mets to more than one area i would love to hear from them as well! Mojo here is a Youtube from a couple of survivors but it is over an hour--if you have time you may find it very interesting. Will you be having a reduced dose of chemo for mop up?

Here is clip https://youtu.be/qReudtklq9Y

Happier days that live on in memory. 

HUGS!

Tru

mojogirl67 said:

I can't even wrap my head around another resection coming down the road at this stage, lol. My pain has just gotten to where I can handle it and do what I need. I just wonder if there will ever be a day when I don't "feel" pain, a twinge, or something where my liver is. I can simply walk and feel the landing of my footsteps in my right side, lol. My incision healed well on the outside but it feels like someone is inside my stomach at times cinching everything tight. I know the deep ab muscles were cut and will take time to heal but my stomach feels so numb in places. I can finally sleep without a dozen pillows for support, lol. I'll be honest. I have moments where I can cry at the drop of a hat from frustration because all I can do at this point is continue with the plan in hand and hope we kill it all. Not having my best friend to comfort, hold, and push me thru sucks as well but I guess anything can be worse so I try to stay positive and keep pushing thru..he would want that. Thanks about the pic. I'm just at a point where I can look at a few but not often. My heart is just still so tender.  That pic was taken the day we got home from his 3rd Folfox treatment. He was optimistic and ready to fight. I had planted tulips by the creek that were coming into bloom with Spring and he wanted us to take a picture in front of them. His pastel striped shirt matched the different colors in the tulips...it's a sweet memory. If you don't mind sharing, what is the worst long-term side effect you have from all of it? Hope it was dry in your neck of the woods with sunshine somewhere! It poured rained here all day, lol..Hugs, M

 

Rain may be a pain in a lot of places, but here in South Cali, every drop is a blessing, and we've had a great winter full of storms. My fruit trees and plants are bursting with color and life. Aside from the aching hole in my heart, I couldn't say one thing stands out as the worst effect. I started this as a busy 49yo contractor who loved his life, and had enough time and money to chase the interesting, fun stuff of a family life. Now I'm going on 61, and energy and money are in shorter supply. The bad ankles/feet were a lesser factor then as well. Now I have to chose where I can spend my energy, knowing there's a clock on the time I can move without creating a pain beyond the reach of the pills I have. Some of this certainly would have shown up on it's own by now, but I do mourn the loss of drive, and the ability to do as I once did. You mention the effects of cancer pain and I realize I've never felt them. Besides a little blood in my stool, my body has never expressed the effect of having cancer. All the effects have been from the treatments for it, and fixes for the surgeries. Tomorrow rain's coming, so I'll finish this and go work in the yard, as today is beautiful, and sometimes that is all it takes to restore my soul, such as it is, lol......................................................................................Dave

mojogirl67 said:

Treatment Effects..

Hope you finished the work in your yard and got the needed rain today. Reading your comment on the "hole in your heart" choked me up. Got one myself but I am trying everyday to fill it up with the good memories we made and I know you do as well. You are an inspiration here with encouragement and sharing your own experiences and thoughts.  I know she is proud and smiling somewhere because of it. My chemo was put off for one more week so I drove back to the mountains until next Tuesday. You said rain was coming for you today. I drove home to the mountains today. It has been in the high 60's and brilliant sunshine today. I soaked it up, lol. When I asked about long term effects, I meant from treatment, not from the cancer itself. I was doing some hard hiking in these mountains right up until the day of the colonoscopy that found the cancer. Like you, I had blood in my stool, but chalked it up to hemmorhods. I had pain in my right flank from the liver, but at the time, I thought I had just pulled something. I am just praying that the neuropathy doesn't set in with the remaining treatments I have. I won't claim anything until it comes my way, lol. One question...Did you or do you have a lot of burning and numbness with your incision scar from the resection? I know it's early for me, but I have so mush numbness and random burning sensations even when I haven't done anything. I pray that will get better with time . Hoping your day has been full of good things!...M

When you mentioned pain in your flank where the liver is, I suddenly recalled that I had a dull pain there as well, but it turned out to be a swollen appendix, which had been going on a month or two before diagnosis. The seatbelt hurt right there and I was always shoving a towel or something soft on that side. After diagnosis I forgot about the ache until the doctor came in post-surgery and said they took my sigmoid section, my appendix, and fixed a bellybutton hernia. I guess I was fortunate the appendix wasn't cancerous, and since then have heard a number of CRC people had their's taken at the same time, as well. I wasn't real direct about the long-term effect from treatment, drive and energy being the first loss I think of, but I have some hand and foot neuropathy, mostly tingly, clumsy hands that don't sense light touch very well. I compensate by grabbing things harder then necessary, which creates it's own issues. I didn't mention neuropathy before because the dystrophy I have, that mainly effects my feet, also gives me numb hands, and I can't really say how much, if any came from the chemo, and stayed with me. The resection scars and the hernia repair were big scars, 14 inches up the middle, a foot to the right, marking two sides of the liver[I measured]. The hernia fix lengthened the original lines so they could anchor mesh to functioning muscle, They had five drains in me, and I went home with three, for a week or so. I felt numbing, tingling, itching while they healed and for some time after, but they feel normal now, They look like intersecting railroad tracks , from all the stitches, lol. The day's been fine, the rains have me fixing things in the house, whilst the kid handles the work load. Hope the day is kind to you, as well.................................................Dave