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How can I feel this good, and still be really, really sick?

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

People are very kind, but sometimes they drive me nuts. I am constantly asked, "How do you feel?" I actually feel just fine, thank you very much. I get tired easily, but even that is a lot better since the last transfusion. And except for the day or two right after chemo, I hardly know I'm sick.

Then they say, "Well, you look wonderful!" Thank you...I think. I pretty much look the same as I did six months ago, so does that mean I look "wonderful" for a person who has Cancer? What exactly were they expecting?

I cooked Thanksgiving dinner for 15 people, and am doing the same for Christmas. I did all my own Christmas shopping and a lot of my daughter's. But I have a disease for which there is no cure. A terminal illness. How can that be?

At each appointment, the nurse asks me if I have enough pain meds. Why would I need pain meds? Am I supposed to be in pain?

Never having Cancer before, I don't have a point of reference, but if "how are you feeling" has any relevance at all, I'm not nearly as sick as people assume. Or am I? Maybe I'm in denial.

Today (Christmas Eve) is my birthday. Tomorrow is Christmas. All I want for my birthday....and Christmas....is to be as sick as I feel. No more; no less.

Are these crazy thoughts? Do any of them ever cross your collective minds?

kayandok
Posts: 1223
Joined: Jun 2008

So glad to hear you are feeling great!! You must recover quickly from surgery and be handling the chemo well.

Not everyone is that fortunate. My friend who was dx 3 years ago, 6 months before me, has been on pain meds the whole time, and anti-d's and traqs and sleeping pills, not to mention when she has needed all drugs for chemo side effects.

I am like you, never needed pain meds and aside from the awful side effects from cisplatin, I have felt great! I have blistery feet now from the Doxil and although should be taking a bit more easy, I hobble around in my slippers even to church. I coordinated turkey dinner for 130 Sunday, and although a tired camper at the end of the day, I still felt great.

Count your blessing and Happy Birthday!

Have a very Merry Christmas!!

kathleen:)

saundra's picture
saundra
Posts: 1390
Joined: Mar 2007

People say I look better now than before. I feel pretty good most of the time which is indicative of the fewer cancer cells I have now. Haven't needed pain pills since my CA125 dropped to below 100. Yes, I think they expect you to have that death pallor. I do still put on make up and do my hair (sure is thin after this latest round of carbo). I have gone 2.75 years since diagnosis and that amazes most.
Just keep on with your great attitude and enjoy every moment. (((Hugs))) Saundra

jane65
Posts: 279
Joined: May 2009

Ladies,
I can totally relate to this, my favorite is : "Gee, for someone with cancer, you look good."

How are we supposed to look, emaciated and sickly and of course bald?

Oh well, Have a Merry Christmas and a Happy and Healthy New Year to everyone, and their families.

A very Happy Birthday, Hissy-Fitz and many more!!

Jane

Mawty's picture
Mawty
Posts: 137
Joined: Sep 2009

Today is one year since I got out of the hospital after my surgery and finding I was stage III. I'm just so happy to be able to celebrate Christmas. I feel fine, although I'm still taking oral chemo each day. When you first hear you have cancer, you think you're a gonner, and then you learn that this can be a chronic disease. Being positive helps so much. I have one friend who is a cancer specialist who says she believes people can actually heal themselves with a positive attitude. Now she works at a huge hospital down in Chicago. That's pretty amazing. I'm not sure I'm there in my thinking, but I am happy that I feel good, have no pain, and am also being told I look great. I think it truly does surprise people that you can have a horrible disease and be doing the same things they're doing.

groundeffect
Posts: 651
Joined: Mar 2003

Happy Birthday!

Last night (Christmas Eve)I went to a family gathering, and got pretty much the same comments about looking so well. My reaction is to thank them and tell them I feel well, although I really didn't last night, having had IP taxol on Wed. I listen to elderly relatives talking about their aches and pains all of the time, and have learned to appreciate the phrase "less is more", especially in health matters. The only people who can truly appreciate what I'm experiencing are my support group friends, and we don't usually discuss all the details...

Be gracious, appreciate their concern, and take it all as a compliment! Your nurses are obligated to ask about pain meds, just as much as they have to ask you what your birthday is, or whatever they use for i.d.-it's not that they think you need it.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

You can see photos of me taken Christmas Eve, via this link.....
http://www.flickr.com/photos/cmfromtx/

Compared to my avatar pic (taken about a year ago), I think I look pretty much the same now as I did then. Obviously, my hair is different......literally "different". LOL

I don't want to be known in any group as "the one who has Cancer". Added to that is the fact that I am a very private person, so there are a lot of people who don't know about my illness because I have chosen not to tell them. I made my husband promise not to tell anyone else without checking with me first. He thought that was a very peculiar request, but I don't. He told my stepson, who told his mom, and next thing I knew, there was a "thinking of you" type card in my mailbox, with a handwritten note from my husband's ex, whom I have only met one time. I thought THAT was peculiar.

Kathleen......no quick/easy recovery from surgery for me, unfortunately. I was hospitalized for 16 days - beginning with a bowel obstruction - and finally asked one of the nurses if there was a complication I hadn't had. My doctor ordered home health care nurses twice a day for 6 weeks after I left the hospital. I felt so bad when I first came home, I was truly afraid I would never feel well again, but I have slowly returned to my "old self" - with the exception of my old hair, of course, and I have pretty much come to terms with that. As one of the other ladies says in her profile, when I'm having a run of good days, I think it all must be a mistake. HUGE difference from just a couple of months ago!

kayandok
Posts: 1223
Joined: Jun 2008

Wow, your wig is exactly like your hair. Amazing!!

I understand your need for privacy and I think that is normal. After almost three years (it took about 6 months or so for me to process I think) I am pretty open about my cancer and don't advertise but share with anyone who is really interested in knowing. I have found that most people really can't handle the details but are encouraged when I share the hope that I have. "Sympathy mode" is totally dissipated and I have to say that I feel I have a strong network of true support and have no regrets about being open. But that is just me.

I love your spunky attitude!!!

Hugs,

Kathleen:)

saundra's picture
saundra
Posts: 1390
Joined: Mar 2007

You do look great. Thanks for sharing the pictures. Saundra

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

Sue,

I hate to say it.. but you do look well :-D .. it is the radiance that shines from you ~ so it overpowers any cancer/chemo side affects. Shine on my sister and you are right on about being gracious .. I think that is what people say as they don't know what else to say.

Prayers ♥ Hugs ♥ Love

Bonnie

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

Happy birthday .. may you enjoy many many more

msfanciful
Posts: 580
Joined: Nov 2009

Hello my sisters and Happy Holidays to you.

I too feel great the majority of the time. Actually; from the time I was diagnosed, had surgery, treatments, etc., I never ever experienced any pain? I was diagnosed with stage 4 ovarian cancer in Feb., 2007, am doing great to date and the only symptom I ever experienced was a rapid fluid build-up in the abdomen. This question may seem dense to some, but I haven't gotten to that point yet and don't quite know what to expect. Do you experience pain as the cancer has progressed to the tissues/organs? Oh yes that does remind me too, in retrospect I did experience a sudden onset of unrelenting back pain prior to the diagnosis and surgery; so was that the actual tumors they removed causing the pain because I haven't had any since.

Other than a large amount of weight gain (I am working on that now because I'm starting to feel like my old self again), and a hernia I developed (mainly fatty tissue at this point), I'm feeling fabulous most of the time. My last ca-125 in November 2009 was 13?

I guess I'm looking for answers because I've always heard the old tale that when nearing the end with cancer it's a painful experience. Or is this not true? All I know is... I hope I never have to get to that point.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

I was diagnosed in mid-Sept and one of my few symptoms was pain in my upper abdomen, but acutally was more discomfort than pain. It was caused by the 3 liters of fluid they later drained.

I developed a bowel obstruction, and that was REALLY painful. And I had the normal post-op pain. I say "normal" but it was really a painful recuperation. I had what my doctor called "big belly" surgery - removal of ovaries and tubes, omentum, and 8-10 inches of my intestine.

The reference to back pain is interesting. I too had really bad back pain, in the hospital and for about a month afterward. I have a history of back problems - degenerative disk disease, prior diskectomy, etc - so I chalked it up to chronic issues. I did ask my oncologist if he had checked for tumors on my kidneys and/or spine.

Some types of cancer are very, very painful. My dad died of alcohol related pancreatic cancer and he was in terrible pain. Intestinal/gastric cancer is also very painful. I don't know anyone who died from ovarian cancer, so I have no idea if it causes lots of pain or not. I do know that your doctors will give you pain meds at the drop of a hat if you have cancer - or at least my PCP will. I have drugs I am afraid to use.....specifically 25mg Fentanyl patches and hydromorphine tabs. Thanks, but no thanks.

Ravishankar
Posts: 1
Joined: Dec 2009

Nope, they are not crazy thoughts. My father also had terminal gastric cancer (died 13th Dec 2009). He was perfectly all right to the last 2 days. Infact he only felt nausea because of chemo. That was about it. In cancer rarely there are symptoms until the cancer starts interfering with normal functioning of organs. Remember its become a part of you..

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Do you know I feel EXACTLY the same as you. Before my diagnosis I was quite ill as my cancer gave me fluid around my lungs & in my abdomen. I had to have 3 chest drains!!!! However since I have recovered from the chest drains and I can breathe much better I feel 100% much improved. I too think that people expect to see you "suffering" from either sickness or extreme fatigue and since I started chemo I am really well.

People who I don't normally have much to do with phone me up or make a bee line to speak with me and will ask me "how are you feeling?" My answer is always the same "I feel good thanks" and then I usually get the "look" (you know which one I mean, the look of pity & sympathy as if they think I am putting on a brave face for their benefit !!!!!!!!!)

Like you Hissy Fitz I maybe in denial - or are we just being realistic as YES this is an incurable cancer but people are living with cancer for years and years and often they die of something totally un-related.

So, keeping positive is like having an ace up your sleeve because I believe that having a positive attitude gives the chemo an extra boost :)

My hair has gone now and I am wearing my wig. I was very self conscious at first but I am getting braver now as I have taken it off in front of friends and they have said really positive things about how I look. So now my attitude it "I am wearing it as a badge of honor"

So I don't think we are in denial - we are just facing up to an illness and dealing with it the best way we know how. Keep being strong everyone because that will see you through this illness.

Much love to you all xxxxxx Tina

LPack's picture
LPack
Posts: 658
Joined: Oct 2008

Have not looked at pictures, but know what you mean. I get you look so good......even my regular gyn tells me if he did not know that I was going through treatments, he would not know that I even had cancer.

I too do not need pain pills. I do have aching bones and muscles and really don't know if that is from the chemo or the shots or both. I have vicadin but take tylenol if I need something.

I am just thankful to feel good most of the time. I remember my mother with breast cancer and how sick she was most of the time. And both my father and mother in laws with their cancer and how they felt.

I must admit recurrence has been more difficult to go through but body really did not have much time to recup from first time!!

Just like the fiery furnace the Son of Man went through with the 3 men and He promises to go through with me. Praise the Lord, we don't have to go alone.

And Happy belated Birthday!!

Living for Eternity!
Libby

misspokey's picture
misspokey
Posts: 25
Joined: Jun 2009

Hi. I agree with you and the others-I don't feel like have cancer. The most ill feelings or pain does have to do with the chemo treatment, and blood booster shots. Main thing I notice is the tiredness and sort of steam at times but that'd due to the anemia. I'm thinking most of the well-meaning people are used to hearing or seeing the ones farther back in time. Either it's ones that have a worse type, more painful cancer or farther advanced. I think possibly the medical drs have come along more, maybe, with what to give and how to give it, not quite so strong or something. Whatever, I appeciate not feeling that bad. I did feel worse last year with the taxol/cistoplatin combo in the abdomin, over this treatment of gemzar/carbo in IV port. Most times I'm ready to go for lunch or shopping afterwards. Just gets me that don't have all the energy to do all I want to, have to pace myself. It could also be ones have seen or heard others that have been on radiation, which I hear is really rough on a person and can burn them. Glad I don't have to do that. I think it's great most of us feel 'so good' and like we don't have this nasty stuff (for the most part), that helps us keep our smiles and good feelings, which is good for us, keeping positive which is supposed to help keep the monster down. It also helps our family and friends, which again, doubles back to help us. I don't mind them asked, that shows they care and love me. Wanda

Marc_Carter
Posts: 3
Joined: Feb 2014

I hear the same.  I'm puffy from steroids so I don't look sick.  I don't feel sick, except occasionaly.  When they ask, "How are you?" I want to say, "Pretty good for a guy withbrain cancer."  But I can't say that. they care.

 

But I'd just like to be treated like I was before.  I guess the longer I don't die, the more normal things will get.

 

So dammit, I'm not dying for a long while.

 

m

mopar
Posts: 1950
Joined: May 2003

What's going on inside doesn't always show on the outside, for lots of reasons.  But there will be a NORMAL for you, and your conversations will be more of a testimony of your survivorship, as opposed to all the negatives of this horrible disease.

Sending (((HUGS))) and Prayers - hang in there.

Monika

 

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