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In awe of the spirit, support and love

Yolllmbs's picture
Yolllmbs
Posts: 216
Joined: May 2014

I'm in awe and grateful to find this discussion group.  I feel a certain comfort in knowing that others truly understand what is happening inside my head and body.  I'm the mother of 10 (all out of the house) and the Nana to 10.  I've always been the core of the house.  I retired 6 months before the cancer reared it's ugly head.  I kept active by taking over my husband's business accounts.  In any case... I'm tired of hearing people say.. "you're a tough bird you can handle it all".  I am tough but sometimes it feels like there's always an additional thing added to my plate.  In the end, I find perspective and gratitude.

Last Thursday, my third cycle of Folfox was removed.  I have had a relatively easy time the first two cycles.  Yesterday (day 6, cycle 3), I woke up with a toothache, sinus issues, stye in my eye, nauseaand MAJOR headache.  My first reaction... Isn't it illegal to have to deal with other issues besides chemo?  So I find myself pissed off at the adhesive that is still stuck on my skin from  6 weeks ago.  I am tired of sorting out and putting all the different cremes in all the right places.  It takes me an hour just to sort out the eye cream...butt paste... etc etc.

So, after not having used marijuana since I was 18 ( a few years ago)... I went and got my official marijuana card.  The doctor explained all the ins and outs and told me what he thought would be the most effective for me.  So.. off I go with candy, pills, oils..... I decided to try the pills.  THAT sent me into the worst "scene" I've ever felt.  I felt like a neon light with my body going off and on focusing of course on the nausea and the tingling in the hands and feet.  I could not wait for the effect to end.  Not sure if that's what pyschadelics are like BUT I was racing in my chair and hadn't moved. 

Through all of this I hear my darling lovely husband say to those well wishers who call.. "She's a champ... doing just fine."

Just fine... I have poison in my system, a stye in my eye, my butt is sore from the runs, my hands and feet are tingling, my tooth hurts, the corners of my mouth hurt, my head is pounding, I cut off my hair and nails... I'm doing just friggen fine!  Not to mention... I waited until 60 to have my drug encounter.  I've got 9 more treatments to go.  I will report to duty and be grateful for my life and my ability to fight for it...BUT REALLY??...I'm almost fine but not quite....

Love and prayers,

Yolanda

 

lp1964's picture
lp1964
Posts: 883
Joined: Jun 2013

Going through chemo is a terrible process. I would take ten surgeries over any chemo treatment. you sound like you have been too strong for too long. I want to encourage you to express yourself about your vulnerability and let others know that you are "not fine". For people like you it is the hardest thing to accept help or accept pitty. But it is ok to do so in these circumstances. Let people help you and if they don't, demand it.

Trubrit's picture
Trubrit
Posts: 1609
Joined: Jan 2013

I am so glad that you are here with us. We are here for you. Your description of the side effects sound so familiar, and all of the weariness that come along with them. I remember at its worst, I didn't think I would ever be able to go more chemo if I had to. Of course now that I am a year out, and the possiblility of chemo is high, I would do it, but when you're going through it, it just wears you down. 

I am a HUGE believer in letting people know exactly how I am feeling. Now I know that this is not everyones way, and that is fine, but for me, if someone asked me how I was and I had just spent five hours on the loo, I would tell them that I was sick of pooing my guts out and not being able to sit down properly. Some people ask but don't listen, in fact, I found that happened quite allot. Interesting. 

Tell you husband (if you want) to let people know that things are getting rough for you as opposed to making out that all is well. I have told my husband that when people ask me how I am doing, to tell them to call me. I feel so let down by members of my church. I know their lives are busy, and I'm sure that some of them are sincerely concerned for me, but I would love a call now and again.  

Have you tried meditation? I got into meditation after buying a CD to help me calm my racing mind when I went to bed; and it was life-changing. I found that I could follow the guided imagery very easily, and bring myself peace, which in trun helped me with some of my side effects. Just an idea. I still meditate. 

9 more treatments is allot, but every week you can count down and it will get less and less. When I got to four, I was so excited. It really felt like it was finally coming to an end. 

Also, some people here say that instead of everything getting worse with each treatment, they actually felt better, so I am hoping that this will be the case for you. 

Come to us. Tell us your woes, your joys and we will walk with on this long journey. 

Blessings and cyber hugs. 

Yolllmbs's picture
Yolllmbs
Posts: 216
Joined: May 2014

For all of the advice.  I've been trying to get on the upswing.  This third treatment brought all the tingling in hands and feet, electrical type shocks and just plain tiredeness.  It is very hard to find something for someone else to do.  I'm certain it's my natural instinct to take care of them all.  I have tried explaining that somedays I wake up counting down the hours till bed time.  I am up and managing the every day things.  I'd hate to waste a day I'm alive not living to the best of my ability.  It just seems that what they see is not what they hear.  Yes I'm up but it doesn't mean I'm not struggling.  Here in these forums I've found so many caring, loving people who TOTALLY understand me.  What a relief!  I have done the rinses! I found out from my dentist yesterday that vaseline is the best thing to put on the corners of my mouth.  I've been putting neosporin but the Dr. said it killed good and bad bacteria.  Said I'm salivating wonderfully!  YOOHOO! In the meantine, I did call the oncologist to report the new symptoms, in case they need to change doses next week.  I'm on the countdown... like a parolee waiting for their release date... 3 down 9 to go...

 

Yolanda

Lovekitties's picture
Lovekitties
Posts: 2989
Joined: Jan 2010

You are right, everyone here gets it, no matter what "it" is as it relates to being a fighter in this war.

You might want to make up two signs...Today is a good day...Today is a not so good day...or something of the sort.  Then find a prominent place where you can post the appropriate sign expressing how you feel.  It can serve as a reminder to those around you how you are feeling without you having to say a word.  If they forget, just point them to the sign!  You could even expand it to signs like " Need help with the chores today".

Definately let your onc's staff know of any or all changes in how you feel or any new side effects as soon as they appear.  They should have answers on how to help, be it new meds or dosage changes or even dietary changes.

Wishing you easier times with the treatments.

Marie who loves kitties

 

TheLadySkye
Posts: 100
Joined: Oct 2013

The "just fine" was one of the hardest things for me too.  When I was first diagnosed, even though statistics for small intestine cancer are dire, my family said I would be "just fine."  I had surgery, and the first thing my parents said was, "Well, that's over with.  Now you can put it all behind you and you're just fine."  !!!!  Yes, because the ordeal ends immediately after surgery?  Onto chemo.  Rough side effects, remaining neuropathy, several months of hell.  But I'm doing, "So well and will be just fine."  Chemo is over.  Now my family insists I really AM done and can put this in the rearview mirror.  Nevermind the years of anxiety and scans ahead and the absolute PRAYING that this never comes back by some miracle.

I appreciate their optimism.  I love their support.  But OMG I am so NOT "just fine."  And I sometimes wonder if I ever will be :(

You don't HAVE to be "just fine."  This is HARD.  Please know that you have my prayers and support and I this wonderful forum to lend information and strength.

UncleBuddy
Posts: 687
Joined: Aug 2013

Sometimes, as caregivers, we just like to tell other people as little as possible. Some people ask because they are nosy, others because they care. Sometimes we don't want to worry others. I never thought of it your way. I get calls and FB posts asking me how my brother is doing. Instead of going into the whole story and telling them that he still has the runs and has accidents, so he wears pull ups and they lowered his dosage because he was hospitalized so many times from side effects. I just tell people he is stable at this point and we will know more when he has his PET scan. I tell them he is hanging in there. I don't live with my brother, but I see him many times a week (that's why I am moving him and dad closer to me). He doesn't hear what I tell others. It's something to think about, though. Thanks for expressing your feelings. It makes us all think.

Lin

PS I hope you start feeling better soon!

Annabelle41415's picture
Annabelle41415
Posts: 4347
Joined: Feb 2009

Yes indeed your plate is full.  There is no one that truly comprehends what we are going through and when you discover that you have colon/rectal cancer all your dignity goes through the window with everyone looking at your butt, feeling your butt and poking and proding.  It is truly a humbling experience.  I'm sorry that you have so much going on as it can just build up and keep piling and then becomes so overwhelming.  My husband sees what I've been going through, but he truly doesn't understand (like last night upon waking to go the bathroom discovered that #2 came during sleep - shower, clean up, floor washed, clothes a mess).  It's frustrating and no one knows but you and this board.  Thank you for sharing because even though you are going through the butt part where we have been, to have all that going on at once is more than you should have to handle.  I'm hoping and praying that you feel better soon.  You be a trooper when you feel like it, but don't pretend.  We all have our breaking point.  Hugs!

Kim

Yolllmbs's picture
Yolllmbs
Posts: 216
Joined: May 2014

Kim, 

   I appreciate you being so open and vulnerable. That is what's so amazing with these discussions. I feel understood and I understand. I'm always panicked when we are doing family outings with the grandkids. I'm looking for the nearest bathroom. I'm always planning how long after I eat will I need a potty. Trying to get someone else to understand potty RIGHT NOW means just that. I've never taken so long to get moving or shut down for the day. By the time I get the creams and lotions in all the right places, it's an hour. Then all the vitamins and prescriptions. Im also a type II diabetic so it's sugar checking etc.  Then going to bed, I'm analyzing if anything else hurts etc...and if it's cancer related. Finally I bring myself to inventory the goodness God has given me and the gratitude for the ability to fight this thing!  It's a process. I want to get to the point where I can skip the cancer worry part and go straight to the gratitude. All in all, I've never felt so understood as I have on this board. 

 

Yolanda

Kathleen808's picture
Kathleen808
Posts: 2316
Joined: Jan 2009

Yolanda,

Thank you for sharing so openly.  i helps for me to read , over and over again, how it is for the person dealing with the cancer.  It makes me remember that I really don't know what it is like but reminds me of the things I can do to help my husband.  I know that you are not "doing fine" but I love your spirit.  We are here for you.

Aloha,

Kathleen

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