Caregiver perspective
So the treatment plan presented to us is, chemo and radiation. The chemo is given on the first day of radiation, the 22nd day and then at the end of the course of rads. The chemo is Cisplatin. The oncologist requires a PEG, so that was put in last week. He doesn't have his 1st trmt until 8/8. Not happy about the length of time between putting the PEG in and starting treatment. I wish we had pushed back on having it done so soon. Boy is this a learning process. Not happy about the PEG at all, but from what I've read on this board, seems like it may be needed at some point.
I work full-time and our son is headed to college as a freshman on Aug 25th. I'm curious, I know everyone reacts differntly, what are the chances he will be able to drive himself to his treatements? I was planning to take him to the 3 where he has chemo and radiation, but maybe should plan to take him to his radiation the day after? They have prescribed all kinds of drugs for controlling the nausea. Some he has to take before the chemo and then after. I am also thinking I will need to drive him the last few weeks as well. He doesn't handle sick well.
He still is very angry about this whole thing, not that I can blame him. He doesn't smoke, never did, rarely drinks. But here we are. I am dreading this, I know this treatment will be hell. I'm hoping to find support, a listening ear, and any helpful tips that any of you are willing to share.
Comments
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Chemo/Rads/Medication
I peronally have not had chemo, but I had IMRT radiation therapy, was on a cocktail of drugs and generally was loopy because of the medication and radiation therapy. I had to have my husband drive me to my appointments at the Cleveland Clinic. Because we lived an hour away, he had to go into work an hour early so he could leave an hour early to get me to the clinic for my rads at 6:00 p.m. (I was the last treatment of the day).
You need to be careful while he is undergoing all this treatment. Check the meds carefully to make sure there won't be any interaction with each other and/or food and to make sure they don't make him drowsy, dizzy or just plain in a funk.
If you are unable to take your husband to his appointments, you might want to check with the clinic or hospital to see what services they can help provide to cover the transportation. Your husband could sail through his treatments (and meds) with no problem, or he could need assistance. It's impossible to know beforehand so a backup plan is a good idea.
Good luck and you will be in my prayers.
Blessings,
Teresa0 -
Welcome
You most certainly are in the right place for tips, support, and willing listeners. I'm sorry you all had to go through the post-tonsillectomy hemorhhaging - That was one of my fears.
As far as his ability to drive himself to and from treatments - well, let me be the first to remind you - we're all different. I hope he can. I was able to; I met a man, though, who was normally a "healthy" specimen who had to be brought into the rads waiting area in a wheelchair to get his treatment three weeks in. I think there are quite a few of us who were able to transport ourselves the whole time. I will say, though, that during the induction chemo phase, I had to have someone drive me home from the three chemo infusion appointments, because the Benadryl I got made me too drowsy.
I, too, got the PEG before I needed it - it was placed a month before rads started. I hated it. I resented it. Later, I came to rely on it, and was very glad to have it. Then, of course, very glad to have it removed.
It's fine in my book for him to be angry. Then the anger can turn to determination. This won't be fun, but you all can do it. Keep us updated.0 -
Hi there. Your husband's
Hi there. Your husband's story sounds familiar to a lot if us here, for sure.
I think his peg was placed at an appropriate time. I would not push it closer to treatment. I think I had my teeth pulled in early March, then my Peg placed on 3/15/09, then I started rads on 4/6/09. This way you guys can get used to the peg in case he needs it, and he is healed up from having to poke that through his belly. Idk about him, but mine hurt like an SOB for the first week or so.
As far as driving himself everyday, a lot of people could, and some couldn't. I was in the couldn't camp. Even in the begining, when I wasn't sick and throwing up yet, I had to take benedryl, before I had my amifostine shot, which makes me comatose. So, on the way home I was usually either throwing up, or my head was bobbing up and down because I was falling asleep, or I was in too much discomfort, or on too much fentanyl to drive safely. Towards the end I was pretty bad. I would go home, and get right in bed, my step mom wouldn't even let me have my little dog, until dinner time. After rads, I passed out and would sleep for 2-4 hours. So much of my medication and plus the stress on my body, that was my passing out cold time. I would actually start falling asleep towards the end of radiation. Some days I don't even remember walking out the hospital. That afternoon nap, sometimes was the only sleep I would get.
So, I guess it just depends on the person, their reaction to treatment, the meds they have to take, and how they react to those. Maybe you have a retired good friend, or a relative with a more flexible schedule, that can take him if he has trouble. Or I believe the American Cancer Society also can arrange transportation to treatment for people who need it.
You will find plenty of support here, these people are great. There is lots of info, and feel free to vent or post here anytime. You will usually find a person that has been where you guys are at and can probably help.
Also, if you haven't checked it out yet, take a look at this thread for lots of helpful links on all kinds of topics related to HNC.
Wishing you and your husband well,
Sweet0 -
Dang it, this site is actingsweetblood22 said:Hi there. Your husband's
Hi there. Your husband's story sounds familiar to a lot if us here, for sure.
I think his peg was placed at an appropriate time. I would not push it closer to treatment. I think I had my teeth pulled in early March, then my Peg placed on 3/15/09, then I started rads on 4/6/09. This way you guys can get used to the peg in case he needs it, and he is healed up from having to poke that through his belly. Idk about him, but mine hurt like an SOB for the first week or so.
As far as driving himself everyday, a lot of people could, and some couldn't. I was in the couldn't camp. Even in the begining, when I wasn't sick and throwing up yet, I had to take benedryl, before I had my amifostine shot, which makes me comatose. So, on the way home I was usually either throwing up, or my head was bobbing up and down because I was falling asleep, or I was in too much discomfort, or on too much fentanyl to drive safely. Towards the end I was pretty bad. I would go home, and get right in bed, my step mom wouldn't even let me have my little dog, until dinner time. After rads, I passed out and would sleep for 2-4 hours. So much of my medication and plus the stress on my body, that was my passing out cold time. I would actually start falling asleep towards the end of radiation. Some days I don't even remember walking out the hospital. That afternoon nap, sometimes was the only sleep I would get.
So, I guess it just depends on the person, their reaction to treatment, the meds they have to take, and how they react to those. Maybe you have a retired good friend, or a relative with a more flexible schedule, that can take him if he has trouble. Or I believe the American Cancer Society also can arrange transportation to treatment for people who need it.
You will find plenty of support here, these people are great. There is lots of info, and feel free to vent or post here anytime. You will usually find a person that has been where you guys are at and can probably help.
Also, if you haven't checked it out yet, take a look at this thread for lots of helpful links on all kinds of topics related to HNC.
Wishing you and your husband well,
Sweet
Dang it, this site is acting weird again. It keeps booting me out, and I keep having to log back in. Plus my link isn't there. It wont let me edit my post, so here is the link:
HNC SUPERTHREAD0 -
Your mileage may vary
It sounds like your husband will have a similar treatment schedule to what mine had - he did his chemo on Fridays to have the weekend to recover and so drove himself to all his radiation appointments the first few weeks. I had 6 weeks of leave saved up and was planning to wait as long as possible to take time off - that ended up being after week 4, I think. He developed uncontrollable nausea after the second chemo (it was put off a week because of blood count) and it lasted for weeks. He lost 40 lbs and so I would have worried about him making the hour-long drive even if radiation wasn't taking its toll. What we learned was that that the side-effects of treatment are pretty unpredictable. (By the way, the antinausea drugs are generally very effective - make sure he takes them all as prescribed. Many folks feel so good after 3 days that they stop everything, but that is when the secondary nausea sets in.)
So, plan for all contingencies. If you are not able to take a lot of time off, start working out who could take him to radiation if he can't drive. Can you work part-time? I could not, but if I could have, it would have been possible to drive him to radiation in the mornings and work afternoons, as he generally slept for hours afterward. The last two weeks of treatment and first two weeks after that were times I had been told I would almost certainly have to take off, but was warned to be ready to take off earlier than that (they were right). My back-up plan was to go on leave without pay if I ran out - I figured that if he got that sick, I was going to want to be with him.
This is a great board and you will get lots of help. I recommend you check out the caregivers board as well (it's the first under "other discussion boards") as there are veteran caregivers there with lots of advice. It can also be a nice safe outlet for things you don't really want to discuss with him when he's sick (fears, your own anger, etc.) - Doug stayed away from reading anything on that board until after he got better.
Encourage him to read some of the H&NC board - he will find he is not alone, and that many are familiar with the anger he feels. I think it helped a lot to hear success stories - a few were beacons of hope on very dark days.0 -
hi
I was diagonosed with stage III NPC in Jan 2011. They started my treatment in early March with three rounds of Cisplatin and 5 FU I was a le to drive myself to the hospital an hour away during this whole process. In late April I got my peg installed and started my 35 sessions of radiation along with 5 additional sessions of Cisplatin. I was able to drive myself all the way to the last week. My wife have to do the driving for the entire last week. Every body is difference, I would prepare to have somebody to drive your husband to the hospital in the last few weeks.
Thuy0 -
Kicking You....sweetblood22 said:Dang it, this site is acting
Dang it, this site is acting weird again. It keeps booting me out, and I keep having to log back in. Plus my link isn't there. It wont let me edit my post, so here is the link:
HNC SUPERTHREAD
I keep kicking you because your iPhone is sucking up all of the bandwidth....LOL.
Just teasing, I haven't had any problems tonight.
JG0 -
JG Skiffin16 said:Kicking You....
I keep kicking you because your iPhone is sucking up all of the bandwidth....LOL.
Just teasing, I haven't had any problems tonight.
JG
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"Baby you can drive my car"
(Beatles reference)
I think others have pretty much covered the bases, Fern, particularly with the notion that we are all different. I will advise further, though, that if hub is claustrophobic in the least, he might need a little something to get him through those rad treatments and if that is the case, it may be unwise for him to be driving back and forth to the treatments.
In addition, from a survivor's perspective, it meant a lot to have my wife with me for those chemo treatments, even if we just read different books most of the time and listened to music through our headphones (my chemo elixir included benadryl, by the way). She was also almost always there for the rad treatments but it helped that she worked in the same hospital for those.
Also, let me expand on something an other respondent mentioned: if you can't do the driving, seek out others willing to do so, perhaps fellow church members, perhaps family and friends who are available, and if neither of those is on the table, check with ACS about local groups who have been established specifically for that purpose. I found out only after the fact that one of my soccer moms was the president of a local charitable group established in honor of a young cancer victim, and that one of their primary missions was to provide transportation for survivors.
Finally: welcome! And remember, to be a good caregiver you need to take good care of the giver too!
Take care,
Joe0 -
Contact the American Cancersoccerfreaks said:"Baby you can drive my car"
(Beatles reference)
I think others have pretty much covered the bases, Fern, particularly with the notion that we are all different. I will advise further, though, that if hub is claustrophobic in the least, he might need a little something to get him through those rad treatments and if that is the case, it may be unwise for him to be driving back and forth to the treatments.
In addition, from a survivor's perspective, it meant a lot to have my wife with me for those chemo treatments, even if we just read different books most of the time and listened to music through our headphones (my chemo elixir included benadryl, by the way). She was also almost always there for the rad treatments but it helped that she worked in the same hospital for those.
Also, let me expand on something an other respondent mentioned: if you can't do the driving, seek out others willing to do so, perhaps fellow church members, perhaps family and friends who are available, and if neither of those is on the table, check with ACS about local groups who have been established specifically for that purpose. I found out only after the fact that one of my soccer moms was the president of a local charitable group established in honor of a young cancer victim, and that one of their primary missions was to provide transportation for survivors.
Finally: welcome! And remember, to be a good caregiver you need to take good care of the giver too!
Take care,
Joe
Contact the American Cancer Society. They usually have volunteers that will drive you to your treatments, as long as you don't live too far. They'll probably give you the number of the ACS person near your area whose job is to organize a volunteer for your transportation needs.
I know how it is being a caregiver while working full-time and not having anyone else to rely on during the treatment phase.
GOD bless you.0 -
Tonsil Cancer
I had very similar in January 2009...
Started around October although I did have a slight discomfort in my throat right side.... It didn't get worse, but wouldn't get better after several weeks. I finally went to my GP who put me on antibiotics for 10 days, no improvement. Levaquin for an additional 10 days..still no improvement. By this time I also had a lump pop up on the same side behind and lower of my ear.
On January 2, 2009 I saw my ENT, he scoped me, sent me for a CT and to come back that same days... He was 95% certain of SCC..and as I have never been a tobacco user, more than likely HPV derived (something you might ask about).
Only reasoning on asking about the HPV, is that HPV derived cancer tends to respond a little better to treatment.... But bottom line, cancer is cancer.....
Anyways, he took the tonsils out on Monday January 5th...confirmed that night it was indeed, STG III SCC Tonsil Cancer, later biopsy results identified HPV+ as the culprit.
Nine weeks of chemo in three week cycles (Cisplatin, Taxotere and 5FU)... I had a port installed into my chest prior, the mask was made also... I had no PEG during treatment and for me that worked fine... 90% usually get one or need one it seems, at least historically on this forum.
After that nine weeks the tumor or lump was gone....confirmed by CT. Because of the location (near the carotid artery), they decided to see what effects the chemo and rads would have on the lump before deciding on surgery (dissection).
Nest came seven weeks of concurrent chemo/rads..weekly chemo (Carboplatin), 35 daily injections of Amifostine and 15 minutes of rads, completed mid June 2009.
All PET's and CT's have been relatively clean with no apparent evidense of disease.
I drove my self during all of the rads other than days of chemo. Even taking Xanax those first few days of rads didn't effect the driving, it just took the edge off of the anxiety.
My wife drove me on all chemo days.
Some people can do it, some can't ...doesn't have any bearing on how tough you are, or any other controllable factors.... some people tolerate treatment well, others don't...
But, even though it's rough, you can endure, and have a very good chance of beating it....
Welcome to the forum, awesome people here, and tons of experience and real time history.
Best,
John0 -
Capabilities
In the early stages of treatment I drove myself to the rad/chemo treatments, later as they started wearing me down I had to have someone take me to the sessions. I was surprised after my first chemo treatment. I was expecting it to knock me silly but I left the hospital feeling better than when I went in. I did not realize they added drugs to the chemo to alleviate problems and the next day I felt like there were 10,000 mini-Pacman bugs in my body. Thats when I learned that if they tell you to take a med - TAKE IT WHEN THEY TELL YOU TO IF NOT SOONER.
I too saw people driving themselves everyday and others who were down after two treatments. I would plan for the worst (drive every day) and pray for the best.0 -
Wow thanks everyone!
the support on this board is amazing! Thank you to everyone. Soccerfreaks - love the Beatls reference. We love the Beatles in this house. Can't believe I don't have tickets to see McCartney tonight at Wrigley, but at the time they went on sale, we were living in so much uncertainity, didn't want to make any commitments.
He has scheduled his rads at 4:00, the choices they gave him were 7 am or 4 pm, he is not a morning person. So 4 isn't bad, I can go into work early and leave early to take him. That is what I did when I went through rads 3 yrs ago for DCIS. So I am very familiar with the drill, however my side effects were really minimal. So this is going to be a much bigger impact on daily living from what I have read here and elsewhere.
Last night my brother's girlfriend who is a teacher offered to help with the driving, my mother has offered to help (but she lives 45 miles away), and a neighbor has offered as well. So my village is coming together. I'm really not worried until the 25th when our son goes to school, cuz he can help until then, but after that its just me.
Again, thanks to you all, it is inspiring to see what many of you have gone through and yet here you are, and it sounds like many are doing well. We will get through this ...with a little help from our friends.!
Fern0 -
This is the 4th time I haveFern60514 said:Wow thanks everyone!
the support on this board is amazing! Thank you to everyone. Soccerfreaks - love the Beatls reference. We love the Beatles in this house. Can't believe I don't have tickets to see McCartney tonight at Wrigley, but at the time they went on sale, we were living in so much uncertainity, didn't want to make any commitments.
He has scheduled his rads at 4:00, the choices they gave him were 7 am or 4 pm, he is not a morning person. So 4 isn't bad, I can go into work early and leave early to take him. That is what I did when I went through rads 3 yrs ago for DCIS. So I am very familiar with the drill, however my side effects were really minimal. So this is going to be a much bigger impact on daily living from what I have read here and elsewhere.
Last night my brother's girlfriend who is a teacher offered to help with the driving, my mother has offered to help (but she lives 45 miles away), and a neighbor has offered as well. So my village is coming together. I'm really not worried until the 25th when our son goes to school, cuz he can help until then, but after that its just me.
Again, thanks to you all, it is inspiring to see what many of you have gone through and yet here you are, and it sounds like many are doing well. We will get through this ...with a little help from our friends.!
Fern
This is the 4th time I have started this only to get kicked back to the Board so I will make it brief. I have been unable to work because I had to drive my husband from the start and he has had every side effect and been hospitalized twice. As was stated, everyone is different. I pray your husband is among those who sail through with no problems.
Blessings
Debbie0 -
driving to treatment
he fern
My husband Jim had 35 rad treatments, no chemo, however, he drove to the hospital ( round trip 2 hours) every day. Personally, I know this kept him feeling normal and motivated. It was good he managed as after the treatment finished he was pretty poorly and no energy for at least 6 to 8 weeks.Hang in there, all I can say is when we were first told about the cancer and also the rads treatment we felt negative and panicking about how Jim would get through. As everyone else will tell you, you get through and there is a big shiny light at the end of the tunnel. Difficult I know, try not to think too far ahead or you will drive yourself nuts!, one day at a time helped us to get there.0
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