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will decide for myself but soliciting opinions

LaCh
Posts: 509
Joined: Dec 2012

Will decide for myself but soliciting opinions regarding when to ask my sister to come from another state to help me. She'll come when I need for as long as I need, but from a practical point of view, she just can't stay for weeks and weeks on end.

Week 1 of chemo (from what I can tell) isn't usually very challenging but as an "over reactor" to drugs, I have some concerns about it nontheless. But the peak of blood cell issues don't peak until 4 weeks after the first round of chemo. From what I can also tell, based on others' experiences, the radiation doesn't become a real problem until some time around week 4.

So... Maybe come in for week 1 and the first round of chemo and she can go home? Then come again for week 4 of radiation which cooincides with the peak of blood cell problems with the chemo? I'll also ask the radio oncologist and medical oncologist their take on it next week when I see them, but wanted some opinions from those who've experienced this. Ultimately, I'll put it all together nd make my best guess.

Also... anyone have any problems with the port? Discomfort? Infection? Scarring after removal? Blood clots? Anything?
As always, thanks in advance to all.

mp327's picture
mp327
Posts: 2851
Joined: Jan 2010

I can only speak from my own experience, which is not necessarily the same as yours will be. I was able to drive myself to radiation treatment the entire time. I did fine during the first week and really didn't feel the need for any assistance then. However, my husband accompanied me to my first and second chemo infusion and it was comforting to have someone there with me. I would say you have this pretty much right--sometime around week 4 or 5 at the latest, you may need or want some assistance. I found that up until that time, I really just wanted to be left alone to sleep a lot.

I had no problems with the port. It was a little uncomfortable at times, but not painful after the incision healed. I have minimal scarring, as the incision area for insertion and removal are the same.

eihtak
Posts: 818
Joined: Oct 2011

As far as needing help since I had some other issues I needed help off and on throughout and was also hospitalized. As far as the port goes though, absolutely no issues what so ever, and going on two years later still have it. I get it flushed monthly, but never have had discomfort, infection, or pain.

sandysp's picture
sandysp
Posts: 743
Joined: May 2011

I bumped along pretty well until about my fourth week, when the accumulative effects of radiation and the chemo treatment I had during the first week took it's toll. I was T2N1 and had a higher amount of radiation than the protocol due to the lymph nodes involved. My blood counts dropped and i was hospitalized. My husband just showed me a picture I had never seen of me at the time of my hospital admission. Oh My God! I gained twenty five pounds in a matter of hours as a reaction to a blood transfusion. So I spent a few days in the hospital which, thank God didn't have a mirror in the room. They lowered my chemo dose for the second round. All I am saying is between weeks 6 and 10 things got pretty rough but in the beginning it wasn't too bad. So I would have her visit after you are a few weeks into the process to help you.

Honestly, when I started treatment it was actually better than having the diagnosis and having to wait for tests, etc. (I had to have a surgery before they could begin). What I am saying is you are in the worst part of this whole thing in a way. If you are like me, you just want to get whatever you have to do over with. If you have a friend who can go with you for emotional support you first chemo treatment, that might be preferable.

All the best,
Sandy

LaCh
Posts: 509
Joined: Dec 2012

Hi sandy,
Yes, I agree, the waiting is wearing a little thin, although I have to say that it's been a whirlwwind since the diagnosis was made and next week will be another (the treatments start on the 17th). But yes, I can't say that I don't have "moments" because I do, but most of the time I feel mentally strong and mentally ready (easy to say when nothing's happened yet, maybe) and ready to begin. But yeah, I feel like, "Let's just get the show on the road." The sooner it starts, the sooner it'll be over, or at least this part of it will be over. I really don't have a friend to accompany me, but I figure it won't be so bad; the chemo given in the office is two days out of six weeks; I can stand to be alone for that. I'll be walking back and forth to the radiation treatments alone too and my only concern is the actual walking part. Will I be able? Will I be sick? Will I be in pain? Then I've got five flights of stairs to climb and a dog that needs to be walked. I have people lined up to walk him when I can't but that won't be possible for every walk, every day. Only because I have a history of bizzare reactions to drugs, I may ask my sister to come for the first round of chemo and then she can go home and to come again during the second round. Of course, everything is up for revision because I can plan all I want but at the end of the day, I really don't know how things will unfold. I found out today that although my lymph nodes were negative, they're going to irradiate all of them prophalactically, groin, abdomen, all. I'm NOT happy with that. My feeling is, yes, maybe th tumor wil be gone but I'll be left with a myriad of problems that I don't have now, problems that will affect my quality of life. Hips, bowel leakage maybe, all things that I don't have now and don't want to have. But... really, that's just the deal because there are only two options. Yo treat it or not. And if I treat it, that's the package that comes with it. I'm going to use this as an opportunity. It can bring out the best in me if I allow it to, and that's my intention. Maybe the rest is just the rest.

eihtak
Posts: 818
Joined: Oct 2011

The ACS can help you with volunteer drivers if it does turn out that you need help to and from appointments. Otherwise a lot of churches offer assistance too. After my husband was released from the hospital and I became too sick to drive him we made use of this type of help occasionally. We also had a visiting nurse a few times. These are things you may never need but good to know that they are there if do, and worth checking out before you feel too lousy to do so. I worked at a local school for many years and there are a lot of trustworthy kids out there that would love to help with walking your dog, sometimes they can get credit for community volunteer work.

7243
Posts: 211
Joined: Feb 2011

Hello dear LaCha....I was fine until the last week ... Needed to be driven to treatments and was so tired by that point it was helpful to have someone prepare healthful meals and keep track of my pain meds. I also found it helpful to have my husband keep me primed with fluids wherever I happened to lite. I also appreciated the moral support at that point. I actually became fearful of being alone .... An interesting development given I was a strong, independant woman prior to diagnosis. I became weary both in body and spirit.

A suggestion if I may? Consider journaling your experience. I recall my first radiation treatment and the initiation of chemotherapy...it was surreal for me and to this day it is still odd to think cancer is part of my story.

Also consider discussing pain management proactively with you radiation oncologist; it is essential to manage our pain in order that we can rest well and preserve our immune system. Pain is stressful to the body. This is just a thought. Pain and it's management is quite individual.

Strength to you! When do you begin?

LaCh
Posts: 509
Joined: Dec 2012

'!!!@grrrr!@!$%% Posted a question in another thread about the slowness of this website and I wrote a rather involved response to your post which was lost when it timed out..... Ok, I'll try again. With regard to having someone here with me, I'm going to try to hold out as long as I can on my own because my sister simply can't stay here for weeks on end. When do I start treatment... Tomorrow, I meet with the radio oncologist, Wednesday I get the planning or simulation or whatever it's called, Thursday back to the medical oncologist, Friday I get the port put in and next Monday the 17th treatments begin. I'm getting concerned about the lack of a plan for transportation to and from the radiaton. It's actually quite close to my house, about a 10 or 15 minute walk but that's when I'm healthy (I also live in a 5th floor walk up AND I also have a dog. I've made arrangeements for someone to walk him when I can't but the stairs are the stairs and there's no way around those). So transporation is a problem. I've called around to several local and national organizations but so far nothing's panned out. I'll try to speak to a social worker about a possible solution if I can. The issue with pain management meds is also a bit worrisome since I can't take most pharmaceuticals without major, major problems. I'll try to manage with topical remedies and OTC pain medications (those that aren't contraindicated). As for journaling... funny thing is, I write. I HAVE to write, it's "my drug of choice." I eat, drink, sleep, breathe and write. It's as necessary to me as that. But I've never been able to journal. Just can''t do it for more than a day or two. So there are still lots of questions and a lot of unresolved issues that need to be resolved now, not later when I can't.

Marynb
Posts: 1134
Joined: Aug 2012

I hope your transportation can be worked out. Walking alone in the city in winter when you are not feeling well is going to be a challenge. I am sensitive to all pain meds and I actually never needed them. Tylenol was enough. Yes, there will surely be some discomfort towards the end, but it is not that bad. Those stairs don't sound fun at all!

I don't know what form your writing takes, but maybe a short story, or a play would be just as beneficial to you.

Hang in there!

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

you can do it without meds if you can take the pain. I hurt terribly but was sooooo afraid of constipation (and the pain that causes) that i did not take any pain meds at all and yes it was pretty bad... but i also should have at least tried to stop my diarrhea faster and pain meds would have helped that. so my point is that it can be done without pain meds... i still hurt every time i go to the bathroom just not as much. sephie

Dog Girl
Posts: 100
Joined: Sep 2010

LaCh,

I am a side/tummy sleeper, so my port insertion site was sore for a few days, but after that subsided no problems. I just used a pillow to prop up the side with the port while on my stomach. You'll also be hooked up to the chemo pump, but you'll figure out how to sleep. While I was hooked up I put a stool next to my shower for the pump and just kept my back to the water for the most part. If you can't have a hand held shower nozzle take a large plastic cup or pitcher in the shower with you and use that to rinse off your front while hooked up to the pump. You can also temporarily tape part of a zip lock bag over your port too.

My sister came over for my first day of chemo/radiation and then went home. It was nice not having to drive myself, but I could have done it. As someone said earlier, it was more of an emotional crutch than a necessity. I worked the first whole week (except for the first day because I had to go to the hospital for one chemo, and then my dr's office for the second chemo (the pump for 5FU), and then radiation. I didn't need anyone until the 5th week (I had to have 28 radiation treatments and while the PET/CT scans didn't show lymph node involvement, they radiated mine too. I think that is pretty standard.) I had bad burns and ended up being on pain medicine around the clock for about 10 days, so I did need someone to drive me for my last three rad. txs and then the followup dr. appts for the next two weeks. I wasn't eating much at that point except for a vanilla milkshake a day (I had plenty of fat stored up of which I lived off :)) so basically my sister and brother took care of my animals and managed my pain meds. (I had to start a list because I couldn't remember if/when I had taken my last pills.) Basically I needed someone with me for a very end of the tx and the couple of weeks afterwards. But as you've read here, everyone is different, but you did ask for opinions/experiences and that was mine.

I'm sorry, but I'm not sure if you are female (La?) or male. If female I would suggest planning on wearing gowns and going commando. I used white towells which I could bleach to sit on to protect the furniture/sheets (just pull the gown up to your hips as you are sitting and you are still covered), but you can also use disposable paper pads called Chux which I would recommend if you have to go down the 5 flight of stairs to do laundry. Make sure that your bladder is as full as possible before rad tx as it helps to lift the bladder out of the rad field. I have slight thickening/damage to part of my bladder wall due to rad tx, but it mainly means my bladder doesn't expand as far as it did before tx. More of an annoyance than a real issue. If/when you start using any kind of lotion (Aquaphor; Silvadene (sp?) or demoblast which is a numbing spray used after childbirth) make sure you remove all traces before rad tx as it can make you burn worse. You can always take your stuff with you and put it on at the drs office right after you receive tx that day. Good luck and let us know how you are doing.

LaCh
Posts: 509
Joined: Dec 2012

Thanks for the input Dog Girl...

But as you've read here, everyone is different, but you did ask for opinions/experiences and that was mine.
>>>of course, yes, of course, this is exactly what I want... I'm not afraid to hear anything; I'm afraid of not hearing enouh and being unprepared. ("afraid" is a bit of an overstatement but you know that I mean).

My sister came over for my first day of chemo/radiation and then went home. It was nice not having to drive myself, but I could have done it. As someone said earlier, it was more of an emotional crutch than a necessity.
>>>>> The thing is, I need to use my sister's time judiciously, and that means asking her to come when I physically can't make it anymore. She lives in another state, and I wouldn't ask her to come here for moral support.

>>>>>>>>As for driving, I live in Manhattan, in NYC, in reality just a short distance from the radiation place. The traffic is congested and although cabs would solve the problem of transportation in theory, in reality, they're out of the question. Taking 10 cabs a week (there and back x 5 for 6 weeks) would cost hundreds of dollars. I need to try to resolve this now. Going to speak to the radio oncologist today and ask him if he can refer me to a social worker.

>>>>>>>The laundry issue: I'll send it to a service; expensve, a bit of a rip off but I won't be able to do it myself.

>>>>>>>>>> I've lined up people to walk my dog, although I'll have to pay for it, so I'll do it myself as often as I can (which will be a little difficult going up and down the 5 flights). I'll see how it goes...

>>>>going commando sounds good; I just need to get a reliable bed pad; I've read conflicting reviews of chux. Some say they're good, some say they're poor quality and offer little protection.

>>>>>>>I was able to get the hand-held shower attachment and read elsewhere on this site that it's a good way to manage pain; a light spray directed to the painful area...

Thanks very much for all your helpful input; it's very appreciated.

Phoebesnow
Posts: 447
Joined: Apr 2011

Hi

I drove the hour each way to radiation every day. The last three days my husband drove me. This is when I needed moral support to force myself to get those last three treatments.

I cooked, I cleaned, I shopped and took care of my four pets everday, thru tx and after.

I preferred to be alone in my misery as much as possible.

I had a very difficult time with the burns, but it was manageable.

The chemo for me was a breeze both times. Chemo for this cancer is termed chemo light.

I also am super sensitive to meds. At first I was offered no pain meds. As soon as I started taking them, things got a lot easier for me. Tell your doctor what meds you have taken in the past and your reaction, they will find something that will work for you based on that info.

I would not have been able to work, but as you can see here, some did.

It certainly will not be easy.

My biggest mistake was resting too much. I think it delayed my recovery for several months. Your 5th floor walk up might be a godsend, that is going to force you to get the exercise you really need.

When the 17th is over, you will say, I CAN DO THIS!

I will pray for you Lach that your tx will be effective and as easy as possible.

LaCh
Posts: 509
Joined: Dec 2012

Thanks Phoebesnow,
(You not THE Phoebe Snow, right?). Well, as it turns out, not suprisingly, the radio oncologust said I wouldn't have any difficulty with the radiation in terms of very bad burns, very bad fatigue, very bad anything. So basically, this will be nothing. Ask 10 people, get 10 different answers. Western medicine and those who practice it and I have a long, acrimonious history and so far, nothing in this experience has done anything to change that. The cavalier attitude of CT scan after CT scan, PET scan after PET scan ("How can this be safe?" I asked--again. "This is the protocol" was the answer. "Yes," says I, "but that wasn't my question." The answer is (finally, after dodging it) "We can't promise that you won't develop cancer 20 years down th road from this.") Ok, great.

So I'm either going to be cured from cancer or I'm going to cure one and cause another, I'm either going to have a rough time of it or it'll be like nothing, I have either a 60% chance of taking cure with chemoradiation, or a 70%, this guy said, "It's well, well over 70%" My response was, "Well, well over 70% is, like 90%" Why oh why oh why can a person not just get a straight answer? It's my own fault. I really shouldn't ask any questions.
Anyway, sorry for the diatribe, I'm just at my frustration tipping point. Tomorrow's the set up or whatever it's called, Friday the Port-A-Cath and come Monday, Let the Games begin.

Marynb
Posts: 1134
Joined: Aug 2012

Hi. I certainly understand your anxiety and frustration. It is just a very emotional time. As far as all the scans, I did not have numeroous scans. I recall 3 ( one was for a different cancer) . I have noticed that many posting on this board have numerous scans post treatment. The cancer center that I go to does not do post treatment scans for this cancer, for the very reasons that you bring up. That is certainly your right to question.

If you don't mind, i would like to suggest something. Why not have your sister come the first week. Do not underestimate the need for moral support. I am a pretty strong person, but I was so happy to have my sister with me that first week of chemo. It was scarey as hell. I was alone, as my daughter was away at college. I feel the same way that you do about medications, doctors, etc. and to have chemo being pumped into me all week was anxiety producing, to say the least. I would not have done as well if I didn't have my sister there. We were in the city and she had me out to restaurants, walking around, etc. Sleeping with the pump whilrling that stuff through your body can be so stressful. Physically, I did well....but if I had been alone and anxious, I don't think I would have done too well. I just want yu to make this as easy on yourself as possible. I really feel terrible thinking about anyone alone going through this. If your sister can be with you the first week, I think it would be much better.......then the last week of chemo. If anything is going to go wrong, it will be during the weeks of chemo. I did great until my white blood counts got too low.....then I needed those horrible shots and felt so sick. I was like a wet noodle and chemo had to be stopped twice.

As far as the rides go, how about planning to take the cab the weeks of chemo at least? Or play it by ear and plan to take it if you need it.? Can your sister help out with money for the cabs? If ever a family needs to rise to the occasion, it is now.

Just my thoughts. You need to be able to spend all your energy on getting well, as much as possible.

LaCh
Posts: 509
Joined: Dec 2012

Thanks for the response marynb. As this week has unfolded I've pretty much decided not to have my sister come in, at least not now. I'd reached that decision a few days ago (it was a process) and after today's radio oncologist's cavalier (but true??) take that I'd have no trouble walking, living, doing the things I have to do, I decided to go with my decision. (I told him about the 5th floor walk-up but not my dog). Moral support is nice but not something I'd ask my sister to come to NY for. As for the scans on top of scans on top of scans... I was thinking about it as I walked home. Presumably, the only reason to do another PET post treatment is to look for remaining cancer. Well, I'm going to have biopsies done; that's already been explained to me. In addition, they're not going to see any cancer in the nodes because they don't see any there now. What's more, unless they have something more to offer besides surgery if the chemo and radiation fail, there's no reason to have another PET, at least not right away. The surgeon told me that if the chemo and radiation fail, the only surgical option would be a colostomy, which I've chosen not to have should it be recommended to me. So logically, there's no reason to have another PET post treatment.
I sincerely hope my bloods stay where they should; I don't want any detours but simply want to start, keep going and finish. As for the rides, the radio oncologist seemed to feel that I wouldn't need them, but I have a sneaky feeling he downplayed pretty much everything. In any case, I''m going to leave that question unresolved and deal with it if and when it arises. My day today has gone way off the aggravation scale. I'm in a very crabby mood with very little patience and all around just generally annoyed.

With hypertension and leg cramps dependent on the magnesium that I take (because I don't take pharmaceuticals), and the possibility that I may have to stop taking it if I develop diarrhea, the radio onc said he wanted to speak to my internist about it. Well, THAT raised my pressure. I told him that the decision to take a pharmaceutical for hypertension was my decision, not my internist's. Then I called my asthma doctor just to ask her if there was anything I needed to tell any of these guys with regard to drug contraindications. She said I needed to get the names of the drugs I'd be taking (it was a voicemail) which I already know, and that she would speak to the oncologists or they could call her, I dont even remember anymore. It was a simple question; she could have just spoken to me. All this subterfuge with this doctor speaking to that doctor, that doctor speaking to the other doctor. Hey, you know what? How about you guys speaking to ME? I'm feeling the utter lack of control that defines this situation and am in a very foul mood and that's not good for anybody. Sorry for the rant; I had to get it out.

Marynb
Posts: 1134
Joined: Aug 2012

This is a good place to vent because we have all been there! It is tough to go through this alone. I can surely relate. That is why I really think it would be great to have someone who cares about you with you the first week. Someone to laugh and cry with.

For me, evertyhing did not show up in the scans. Shortly after my treatment for this cancer was completed, I was diagnosed with a second cancer. My second cancer is very rare and there is no effective cure for it. Hearing that news puts things in a very different perspective. I cherish my life. I have a beautiful young daughter that I want to be here for. You say you would not want a colostomy if it came to that. That is a personal choice, but I can tell you that I will do anything to be here for my daughter. All I can advise you at this time is to take one day at a time. Think positive thoughts. This experience will challenge you emotionally, spiritually, and physically. It is hard for some of us to allow others to help us. You will decide for yourself, but I would advise bringing someone who cares about you with you the first week. It can be totally overwhelming.

You will get through this! All will be well. Get some good rest and trust the doctors that you have chosen to treat you.

Lorikat's picture
Lorikat
Posts: 555
Joined: Jul 2011

Wow! You are really going to make yourself crazy! My "first" doc told me, "no problem! That tumor will melt like butter with radiation!"! Thankfully my family doctor made apps for me at MDA. There I was told that I would need chemo/ radiation because even though my cancer had not metasticized it WAS invasive. I was told that every person handles the treatments differently. Everyone has different side affects. I decided right there that I would have to trust in my doctors.

Please don't misunderstand, like you, I asked all the questions you've asked. I tried to prepare for every possible side effect, and was ready for most things. Until the last week or so I climbed the stairs instead of using the elevator. I went for walks, I went and walked around stores with my husband trying to lose as little muscle as possible. (Houston is TOOOOO hot in the summer to be outside much!). However, when I was tired I rested.

So it seems our mind sets are quite similar only you are not yet ready to trust in your team. When you can you will feel so very much better. I know that all the radiation could give me another cancer in the future. I also know that WITHOUT the radiation I would not have to worry about the future. This is a really tough time. Once tx starts you will fill better. Peace, Lorie

eihtak
Posts: 818
Joined: Oct 2011

That phrase is always lurking in the back of my mind, usually moving to the front in the middle of the night! My hope and prayer is that if that is the case, by the time it has caused another the magic cure all will have been found. I do feel like the physical-ness???? of cancer can be cured in many cases but what it does to us mentally is there for keeps! All in my prayers.

LaCh
Posts: 509
Joined: Dec 2012

Whatever happened to the Hippocratic Oath, "First do no harm?" It's more like, "We'll save you now, cross our fingers and toss a pinch of salt over our shoulders, hoping that what we do now won't harm you in the future." I need to feel that I have some measure of control over SOMETHING. No post treatment scans for me.

All the reasons that I've developed zero trust in the medical profession over the years has been confirmed to me these past two weeks and this is just the pre treatment phase. Nothing's even HAPPENED yet.

You know, I can accept the possibility that the cancer might return. I can live with that. What I couldn't live with would be having a new cancer develop that was caused by curing the old. It's western medicine, it's just western medicine. It's what we do.

Jeeze, what a day. I'll have to get my feet under me again tomorrow because this kind of attitude, this kind of aggravation just won't serve me well. I've come a little unraveled today.

eihtak
Posts: 818
Joined: Oct 2011

Let me know how you do with that. I think once treatment starts you will gain a sense of control even though that seems to make no sense. At least you will be actively doing something to move forward. Some docs do more post treatment scans than others and I'm not sure why that is but most likely an insurance thing. In my case, I still feel the benefit may have outweighed the risk and am glad I was scanned. It was at my one yr PET scan that my breast cancer was found. My BC was a rare slow growing tumor with no symptoms and often not seen on mammograms until late. It was estimated that I've had it for 10 yrs, so not caused by any Anal cancer scanning. I did have a double mastectomy, but would likely have not survived with out it spreading much longer, so feel that PET scan saved my life. I'm one of those people who would never win a debate because I can always see the other side of the coin though. I've had a lot of dental work requiring x-rays since I was young....did they contribute to it in the first place???? I am lucky to have doctors that I truely trust along with a faith that some things are just meant to be in Gods hands. Sorry....kind of rambling, and trying to convince myself that last fridays scans will all come back clear. (won't know till this friday) May have a whole different attitude then!

StruTanToot
Posts: 108
Joined: Aug 2012

The last week and the two weeks following treatment were the hardest for me.

LaCh
Posts: 509
Joined: Dec 2012

Hey StruTanToot,
Thanks for the info on your experience of it. It's encouraging to hear. I'm feeling better over all about what's coming up and will try to hang onto that feeling. Thanks.

pializ
Posts: 256
Joined: Nov 2012

Good luck for next week. I'll be strating mine on Tuesday, so we can look out for each other. We need to make sure we eat well for body to repair. Also rest will be good. Taking dog out though will be good for exercise part, & when that gets too tough (just from observations of others experiences) your sister will be there to help out.
Best Wishes
Liz

LaCh
Posts: 509
Joined: Dec 2012

Well, as they say, the best laid plans.... My sister can't come, she has a cold and I can't risk getting sick, so the backup (and less ideal) plan is that my cousin is coming tomorrow night (from Massachusettes) and will be with me for Monday's radiation/port/chemo extravaganza and then leave on Tuesday morning. I say less ideal because my main concern is an acute reaction to the chemo when I'm alone, which I will be for most of the week. But there's nothing that can be done about it. Monday will be a looooong day. Plus, the forecast for NY is for rain. Makes a trying day just a little bit more so. In any case, my sister was never going to stay (if she had come) long enough for me to get to the point of being fatigued; she was going to stay till Friday or so and then go back home. I have someone who will walk my dog when I can't (and Monday afternon will be one of those times). Are you also getting a port? How many weeks is your radiation planned for?

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