In awe of the spirit, support and love

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 said:

Thank you

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

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

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!