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need a pep talk

melbas's picture
melbas
Posts: 43
Joined: Jul 2010

Hi Y'all. It's me again, Melodie. I just got out of the hospital yesterday...2nd time in 2 weeks. The first time I spent 5 days in, due to a defienency in my enzyme or what ever. I also had the shedding inside of the mouth, loss of balance, painful (extremely!!)BM's. So I got home that Sunday, and was back in on Monday till yesterday. So I had my frst radiation treatment on the 6th of July, the chemo on the 7th. They took me off the cheom after 4 days, and decided to go with just radiaton, but with all the hospital time I've only received 9 treatments. I'm startng to lose hope of ever even beginning to get better. I have to use a walker now, I'm 39 yrs old, if I get up to go to the bathroom my husband wants to know where I'm going. I live in an upstairs apartment so unless I just sit on the balcony, I feel like I'm a prisoner in my own home.Sorry to be so whiny, but when I asked my husband to go get one of my meds, he made a HUGH sigh and rolled his eyes. I know this is hard on him, too. I would do more for myslef if I could. Anyways thanks for listenng. Melodie

cujuja4evr
Posts: 106
Joined: Jul 2010

Sorry to hear you're having such a hard time. There was a time when I thought that I would never get better, but guess what...not only am I getting better, I'm encouraging others who have to go through what I did. Some people had a worse time of it than I did and, believe me, I had a rough time! Only focus on today and only today. When we think too far ahead, recovery seems to be out of our hand's reach and we begin to lose hope, but when you only have to worry about what is going on today, before you know it, the day has gone by and you made it! As far as your husband goes, yes, I'm sure it's hard on him. Cancer is a life-changing thing. You and everyone else around you is affected by this disease. But, don't feel that you are being a bother! You can only do what you can do. My suggestion is to post on the Caregiver's board to ask some of the caregivers what he may be going through and what to expect in coming weeks. I was in the chatroom with a caregiver this morning and she was awesome! I only wish I could have talked to her during my treatments; she would have been a great help to my husband and mom who were taking care of me. She was very knowledgeable about cancer even though she never had it. She has spent years working with family members who had cancer and other patients in hospice. I'm sure you will get much support from that board. Hope all goes well for you. I wish you all the best during your treatments. Please keep in touch with the board so others will help to support and encourage you and your family.

Hugz
Judy

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

Hi, Melodie,
You certainly are having a difficult go of it. I also support Judi's idea of going to the Caregiver Board.... you and/or your husband.

Try to do some things that are distracting and enjoyable to both of you. I know my husband lined up Netflix stuff to watch - I spent mornings on treatments and appts and sleeping again (ativan helped) and then the afternoon zipped by watching some really good movies with him.... you may need to make it evenings if he is working days. We were sort of "prisoners" except for medical appts because we were having a snowy winter. Keep meals very simple - soup and bread or even protein milkshakes. Do you have friends/family who can help bring in some meals?

I am sorry to hear that you need the walker but that is better than falling and getting hurt. Hopefully that need will be short-lived. Having some quirky body chemistry definitely complicates things! I ended up with transfusions because of anemia. Yours sound even more threatening. I sure hope they can/will resume the radiation so that you can get through this. Because it has been awhile since your last radiation, will they have to modify the plan?

Take heart,though. Things will definitely get better!

Keep us updated as you can.

Thoughts and prayers winging your way.
Priscilla

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I'm sorry you are having such a rough time. I hope that you can get back on track with your radiation treatments and get to the end of them without further complications. You are wise to have gotten the walker. You certainly don't need a bad fall to make matters worse. Please don't give up on getting through your treatment--you can do this! I'll be keeping you in my thoughts and prayers.

melbas2
Posts: 108
Joined: Aug 2010

Thanks for listening,and for your support and kindness. We did actualy have a sit down, and I thinks he's got the prisoner thing establshed in his head, he sees where I'm having such a hard time adjusting to all this. Before the cancer,I traveled the states, opening new store, settinmg them up for success, and then moving on to the next one. A good year was one that I was home about 90 days...thou not at the same time. Then I would spend my days home cleaning, cooking, tryng to find time to be wth my husband and family. My husband s checking into a house this week, so at least I'll be ground level and be able ot get bacj into gardening. And the loss of my income has made a huge lifestyle change. WWe are coming up on 17 years together and thought we were getting to the comfortable financial part of our lives finanlly. I know we've always gotten back, it just seems like we take 2 steps forward and then 15. Anywas, I resume radiation in the am, see if can get thru without anymore setbacks. I actuall had whole food tonight.So far, so good, Gotta go to bed now so I'll be able to see doc in the am. I hope someone out ther is getting wome good news, Good nght all, Melodie

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

Hi Melodie--

I will be thinking of you today as you resume your radiation. I hope all goes well. Please keep us posted. You're in my prayers.

Martha

SueRelays
Posts: 489
Joined: Dec 2009

Dang Melodie.....I just feel for ya! I was complaining because I was only 49!!! And I too had the most painful BM's you can imagine. It is so hard to see past any of it when you're in the middle of it. There were days, I just couldn't take it. I so wish I had this board then. It's awful not to be able to talk to anyone about it!
I'm sure your guy is like all guys, and is so used to you taking care of him....he is struggling with this new role!!! Mine tried hard, but I know at times he just didn't get it. I'm not the type to verbalize my pain too often, so he just really didn't know what I was going through, or how I felt. Sometimes I felt like he was probably so SICK of hearing about cancer.....I just tried not to talk about it. I felt sorry for him too....his life changed so much also. I'd always been the one to take care of everything, and was always optimistic, so I tried to maintain that. It's so hard to maintian your relationship and take care of kids and go through all you are. Wish there was something more we could do for you....but hopefully having a place to come where you can TOTALLY be yourself....helps :)
BIG HUGS to you!!! Change is comin!!!!

susan1069
Posts: 30
Joined: Mar 2010

Hi Melodie,

I also had trouble with the chemo, although I didn't end up in the hospital until the 2nd dose. After spending almost 2 weeks in bed, I came home extremely weak. It's hard to expain to someone unless they've been through it, but going up a flight of stairs required stopping at least twice and sitting down. My legs felt like jello and I couldn't believe how weak and deconditioned I got so fast. Take it easy for now. Just know that you will get through the treatment and then you'll have time to get back into shape. You're using a walker now but you won't stay that way. It's temporary so don't get down on yourself.

I'm a little over 3 months out of treatment and I feel just as in shape as I ever felt. I try to take walks whenever I can and, honestly, I feel back to normal. The treatment for anal cancer is hard but it's short relative to other cancers. It sounds like you're almost 1/3 of the the way through, so keep making short goals. You can do it - you WILL feel better.

sissy310
Posts: 300
Joined: May 2010

I'm glad you mentioned your legs feeling like jello. I'm not quite out of treatment yet, three more rads left but even taking a shower causes me to shake all over and feel so weak. I was beginning to think I was being too wimpy about everything and not trying hard enough. Reading what others go through helps to realize that this is a hard treatment program and we have to be patient with ourselves and our partners and friends and family need to also be patient with us.

z's picture
z
Posts: 1250
Joined: May 2009

Hi Marilyne,

I too had the jello legs, it took several months for me to get my stamina back. You are by no means a wimp, you are a very strong woman. You need to be patient with yourself as you are doing well, and you will continue to do well. Lori

sissy310
Posts: 300
Joined: May 2010

Hi Melodie - sorry to hear all this. It's hard enough going through the treatment without other issues being there. My husband is the same way. I have to ask him a couple times for things and sometimes he gets cranky about it. After I came home from the hospital (was in there for five days so they postponed my rads a week towards the end - have three left now I have to do next week) he brought me a bottle of water and said "just like the hospital right?" and I said "not quite" and he became a little upset with me until I explained that being a caregiver when someone is ill like this entails more than handing them a bottled water. We had a long talk and he now understands but still most men are not real caregivers, I mean not like a 'mom' type. When I was in the hospital, I felt like I had a bunch of moms taking care of me and it helped. Do you have family nearby that could come in and help out a little here and there? Hang in there. Marilyne

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