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sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Hello all my wife (53) has advanced cervical (adenocarcinoma) stage 4B.
I am struggling as the caregiver and she has been in bed for the 3-4 days, feeling very tired, pain on and off, not feeling well, she feels hungry but does not feel like eating anything. She gets home care 3-4 times per week, I dont know what to do especially trying to keep her eating. She is supposed to get her 6th chemon round next week but dont know if she can handle it.

Any suggestions from others who have been through this I would appreciate.

Thanks to all

John

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

John,
I am so sorry that your having to go through all this. This whole cancer thing s***s BIG time!
Besides the home care, do you have support for yourself? Are there children involved?
I'm at a lose for words...other than saying this site is a good place to rant/rave. There are really great people here for support. Myself, I was dx at IVA and remain in remission at this time. The cells started changing again about 10 months ago, but I've been taking all kinds of herbs and so far so good. Are the docs using the chemo for pallitive reasons or do they believe it may kill off some of those nasty cells?
I have not been to the extent you are, but if there is anything I can do...just let it be known.
((HUGS))
Becky

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Becky,

Thanks for the words of encouragement, this disease really does suck and just takes your lives over totally especially the worse they get. We have home care and they are increasing the visits and today decided to have her put on a pump for the pain, we all know her time is limited at least I think it is. She has taken a real slide since Dec 24 and has been getting progressively worse. We have 3 kids all in their early-mid 20’s one at home two are on their own, the one at home is the one we get the least amount of help from. Currently I don’t have too much time for support for myself, as I am caring for my wife. I do see a social worker at the cancer clinic usually 2-3 times per month which does help.

I am glad to hear you are in remission so far and lets hope and pray you can stay that way. The docs started using chemo in early October once they found cells in her lungs and liver, and she was doing well with that it seemed. They changed her drug on the last chemo as the previous combination was doing nothing for the liver, and once they changed is when it seems she started to slide. At this point her care is palliative and I don’t think she will be able to take the next round of chemo she is too weak.

Thanks for listening.
John

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

John,
It does sound like your wifes tx is pallative. It's good to hear that the home care team is stepping up their visits and ensuring your wife remains comfortable. I know how helpless you feel at this time. I have lost numerous family members to this miserable dragon and have been there at their bedside till the end. I am also an RN and have had a lot of experience with pallative and end of life care. Doesn't matter if it's a family member or a patient...it's never easy. Ensuring their comfortable is one of the few ways we can intervweave all our feelings into what's happening. Acceptance, although difficult, is the first hurdle we need to achieve. It sounds like you wife may be reaching this level with her refusal to eat. Is it possible your child at home cannot accept what is happening, hence their uninvolvement?
Your wife is so young, it's so unfair. The two of you had your whole life ahead of you. Why don't the doctors really listen to us when we seek their opinion?! Too many of us have sought them out only to be brushed off and then down the road find out this disease has progressed beyond the point of no return. I know their only human, but D**N IT, they have all that high tech equipment at their disposal! Working in the medical field, I have seen too much...know too much of what goes on behind the scenes and it frustrates me to no end!! Sorry, I needed to vent.
I know your life is chaotic right now, but you need to make sure you take time for yourself. If a few minutes here is all you can do, well, at least it's something. My heart goes out to you and yours. Keep posting. This site has been very theraputic during my journey.

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Hi Becky,

Not sure what you mean by the acronam of tx is palliative, could you please explain( I understand what palliative is). The home care nursing team has been stepping up a bit and have put her on pump using hydromorphone, but she is still getting sharp pains in her low side pelvis when she stands up, when she sits or lies down she is ok. The daughter at home I agree with you I think her way of coping is to run away from it. I have told her she has to be around a bit more I still need to work, and we can not leave her here unattended as mobility is becoming an issue because of the pain. Hopefully we can work this out together, the other daughter lives 2 hours away and is back every week for a few days and she is very helpful. This is the first time I have been so close to this horrible disease, I have said many times I would trade places with her than to be the one left behind so young still dealing with relatively young children, I know it could be worse could have 3 school age children to deal with.

I find her oncologist to be pretty good she does listen and will give us time together or individually with her to discuss what is going on, prognosis, etc.. I do try and make time for myself usually by walking, I used to walk twice a day. I don’t get to do it as often now as I need to be home more often, but will try to walk to get groceries, bank, etc..

Life is chaotic for us right now and I know we have a very difficult journey ahead of us still. This does help to vent and talk to others like yourself who have been through it and understand, there are so many people who truly don’t understand. The number of people who tell they know how I feel because they have lost a parent, I remind them it is not the same as losing your spouse in your early 50’s.

Enough about me how is your battle going everything still looking positive.

Thanks
John

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Sorry for using acronyms...tx stands for treatment. I'm sorry to hear her pain is getting worse. I sure hope the pain pump does it's job!
I can truly understand your wishing you could trade places with her. I was grateful that if it was going to happen, it happened to me. I'm not sure how I would have dealt with it had it been my spouse or children. I know we are all here but a limited time. I've had a full life and am ready to deal with what life throws at me. My husband and I have discussed at length what I want in the event things turn around. He doesn't like to talk about it, but it's the only way I can find peace with everything that is/has happened.
There's no magic bullet to help your daughter at home become more involved. Time. I'm glad to hear your other daughter is helping as much as possible. And that you are getting a chance to get out a bit. Only thing about walking is ... so much more time to think. Do you have friends/neighbors that are supporting you? I know when you talk to others and mention the "C" word, you find out real fast who your true friends are. I lost some, made new ones, and built a stronger relationship with those that did stand by me. What's up with that? It's not like it's contagious! It's good to hear you have a doc willing to spend time with you both or individually...and really listen. They are a rare breed.
Thank you for asking how my battle is going. It's going...which way I'm not sure. I have things growing that shouldn't, don't appear to be cancer. The docs write up the scan reports as "appear to be..." That's very reassuring:( No one is willing to go in and investigate...just keep scanning and cutting out what they can reach. It is what it is!
I hope others will stop by and chat with you. You will not find anyone here that has been diagnosed with IVB, but there are a few IVA still out here fighting. There are a few other boards on this site where people in your situation post. Maybe they can give you more insight than I can. I can't say I know how you feel, but I can say know how it feels to be the one fighting for the right to live.

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Becky,

Thanks for the explanation of the tx, the pain has been worsening but the pump helping we had 8 hours at the hospital today, she had to have blood done, visit with the oncologist and they wanted take off her nephrostomy tubes, but they were only able to remove one. It is truly amazing how everyone on this sight gets it and understands what we are all going through, very few people in the outside world get it.

I do get a few others to chat and you are right there are not many 4B folks here, if they are it is the caregivers the actual patients with 4B just do not have the energy or the strength to even spend time on the computer. Becky you have a good idea what it is all about this horrible disease has taken you 4A but at least able to keep fighting back, keep it up and try and keep the devil bay.

Thanks again,
John

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

So, has the pain pump helped? Why are they removing her nephrostomy tubes?
Glad you've found a few others to chat with. Yes, we all understand what you are going through.
Hope your wife has had a better day!

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Becky the pain pump is helping except it broke down at 3:00 am last night so we had to call the after hours number and a nurse came out and it turned out to be defective. They ordered her a new one but didnt come until this afternoon, she went to chemo today and had to use her break through pills. They wanted to internalize the nephrostomy bags I think it was stents, they were only able to internalize one. Now she has one bag and the other drains the normal way. She is tired tonight from the Chemo I hope she is not too bad tomorrow.

Thanks have a good night.

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

John,
The two of you just can't seem to get a break can you? Hopefully the new pump does it's job. It's good to hear your wife was able to do the chemo. Which one are they using at this time? Is this the last dosing or do they plan to continue as long as possible? I know some of the chemos are well tolerated, but others really hit you hard. From the bottom of my heart, I hope she has a good day today. I remember the steroids they used to pump me with on chemo day and I felt like the energizer bunny for the next day or two. Felt too crappy to do much, but really really wanted to. Like taking a hit of speed while tied up in a straight jacket :(
Hopefully they'll be able to remove the other nephrostomy bag too. I haven't had a personal experience with them, but I have cared for many patients with them...I know they are not a lot of fun. I've been given the gift of a bladder that has a mind of it's own, but I am not complaining...it still works. The radiation has caused thickening of the walls, so it's holding capacity just isn't what it used to be. Road trips can be a little tricky when your always searching for the next bathroom. Luckily, we drive a lot of seasonal roads or backroads and I've become quite the expert at utilizing the side of the road without getting wet:) The joy of change!
Only a couple of days till the weekend and the hopes that your daughter is able to visit and you might have a few minutes for yourself.
((HUGS))
Becky

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Becky

You are right every step through this horrible disease it has been one added problem after the next, I asked her doctor if she is having a harder time than most and she said no and added that advanced cervical is probably one of the worst cancers to have in the late stages. The chemo drug they are using now is Taxol one dose every 21 days, she was on cisplatin and topotecan, the new one does not make her as sick but her legs get really weak and sore. She has to take the steroids but they don’t have an effect on her like they did with you. You are fortunate that that your bladder still works maybe not quite the way it did but better than not at all, the problem my wife has is one of the ureters is blocked which I know is common.

It is amazing how we all have to change with this disease you are still getting out and enjoying life and that is all we can ask for no matter how the plumbing is working. We have both daughters here until Saturday it gives me a bit of a break. Any plans for your weekend upcoming, I would like to get away for a night but will have to see what games the chemo plays.

Stay strong
John

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Hi John,
By chance, was your wife ever offered a chance to participate in any trials? I don't have a lot of knowledge in how they work, but I've read many posts from women who've sought this option. With technology advancing so rapidly these days, it's hard to keep up.
I was told the bone pain, especially in the legs, is related to the bone marrow in the long bones going into overdrive trying to reproduce. And it hurts like h**l! Pain meds didn't seem to help too much. They only way I could get it to subside minutely was with walking...not an option with your wife. Aghhhhhhh...I hate this disease!
I have found too, that I'm not as sympathetic to people who whine about minor ailments. This is not good, as I know that everyone's preception of pain is different...but requiring time off from work cause you shut your finger in the door and have a blood blister?...Come on, grow a set! I had a co-worker show up at work the other day, to let everyone know she was in pain due to just having one, seriously one cervical biopsy sample taken, and how horrible is was and how much pain she was in and she couldn't even sit down...aghhhhhhhhh! I looked at her and said, "Are you serious?" "You stopped by on your day off to tell us this?" Then I went on to say a few other things that I should have kept to myself. I did breakdown and call her last night to apologize for minimizing her discomfort...the nurse in me. But I did stick to one statement I said, "Hope you never really get sick." I was stating is sarcastically, but I don't think she caught on.
Your correct about the ureters. Scar tissue is a menace after radiation or surgery. Is your wife dealing okay with the tube she has left? I know they can be irritating.
I do hope you get a chance to get away for a evening of R&R this weekend. I know where your head will be even if you do, but a little distraction is better than none. When I got diagnosed, my husband had just found something he'd always dreamed off...a fixer upper '46 Ford Coupe. He's always wanted the chance to rebuild an antique. So, on our way back from my appt. with my surgical oncologist, we stopped at the bank and I signed for a loan so he could fullfill his dream. Just because my dreams might be getting flushed down the drain did not mean he had to stop living his. This was a very scary decision, because I knew money was going to get tight for a while. I also knew that he needed a distraction, something to focus on other than what I was going through. When I don't feel well, I don't want to be bothered. It worked. He was always right there if I needed him, but he was keeping busy and being the simple/loving man that he is, the car consumed him:) It also gave me a little bit of distraction cause on several occassions it was necessary for me to deliver the fire extinguisher to him asap as him and his brother-in-law had flames shooting out from under the hood. Gave me a chance to vent, respectfully, on his stupidity for not keeping it handy! It worked out well for both of us:)
My weekend will be filled with working 12 hour days. They are long, but I don't mind. A lot less bosses around on the weekends! But first, I'm going to meet my bff for lunch today and we are going to celebrate my recent bday.
Respectfully,
Becky

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Hi Becky
She has not been offered any clinical trials it is worth asking about I know they are going on but I think they are pretty specific as to who participates in them. You are right this disease is just horrible I have never been this close to it as I am now. I really get frustrated in not knowing how to deal with my wife’s emotions of it all. When she feels a little better she gets frustrated because she still cant do much and she feels she is a burden on all of us, which of course she is not.

Good for you to speak up about the biopsy I did see most of it when she had hers in the summer and have admit does not look pleasant at all, but I am sure anyone with cervical cancer would trade it in for 100 biopsies. I am sure she thought you over reacted but just so people don’t think about what they are saying and to who. I cant comment on the biopsy as I don’t first hand experience but it cant be as bad as dealing with this awful disease. People who have not dealt with this first just have no idea what it is all about. She is ok with the bags they don’t bother her just an aggravation. Over the holidays I was changing them in bed for her when she could not get up and go to the bathroom.

I think when this happens you do have to try and refocus your energy and resources, we were supposed to be in Maui this past November and we had a cruise booked to the Panama canal and S America for next month. We cancelled both and got most of the money back except for the air fares and our trip is now in our living room in the form of Mac notebook computer and LCD TV, I wanted to do something with our travel money that she could enjoy. I figure I will have time in the future to do what I want right now I feel it needs to be about her. I don’t know if we will get away this weekend will have to see how she is feeling.

I know my wife would die to be able to go to work she too is a nurse, but has not been able to work since August. Sounds like yours is under control is you are able to work a 12 hour shift which is good and let hope and pray it stays like that for you. When was your birthday, all of us except for my wife are December birthdays which makes for a busy month. Hope you had a good lunch today, right now will probably be shopping and house work for me tomorrow.

All the best
John

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

It's a slacker job John. Show up...get paid...shuffle papers...babysit.

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Well Becky at least it keeps you busy and you do get paid still better than doing nothing.
We all think doing nothing would be great but only if we have our health to go along with it.

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

I'm not a good sit around person John, so healthy or not, I would go stir crazy! This winter has been really harsh. How are things going this week?

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

I know how you must feel, it is hard not to do anything that is what depresses Tracy I know with this whole situation. This week has been about the same as last but she is really feeling tired and weak, dont know if it still after effects of chemo or just the disease progressing and wearing her down. I have seen a real change just depressed, tired doesnt talk much, etc..

The winter always sucks doesnt I take it you are not in the sunny south.. For us it has not been too bad a little snow at Christmas and had about 6 inches yesterday and more on the weekend, and this has been the 1st week so far this winter it has been cold.

Hope your week is going well.

John

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

This morning 430 she was getting a sharp pain in her stomach, never been there bfore any ideas from anyone. The cervical cancer has spread to her liver and lungs is it possible this would be pressure on th stomach coming from the tumors in the liver.

Thanks for listening

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Oh John, I am so sorry for Tracy. This could be a number of things. Is her stomach bloating? Which side of her stomach is being affected? Have you called her doc? Did the pain pump help at all?
This was not a productive post was it? All I did was answer your question with more questions. Wish I had an answer. Oh how I hate this disease!

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Hi Becky
You know the next day she did not even remember having having stomach pain, it could also be bloating of the liver as she does have 2 tumors and countless cells growing there. Could not get the dr yesterday she has been in bed all day so far today, very weak very tired. Last night she was up with me from 12:30-6:00 with low back pain, the pump was not helping only me rubbing her back helped.

Becky you are always a help and big support to me going through this, every problem brings more questions i know that. How is your weekend any plans. Yes we all hate this disease it is my first real experience with it. My Dad died last Feb of a stroke at 80, he was gone it 5 days that's the way for sure.

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