post from another board. I need all of you. Please read it. Cancer

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UC since'76
Regular Member

Date Joined Dec 2006
Total Posts : 77
   Posted 7/1/2009 9:23 AM (GMT -6)   
I just posted on the Ulcerative Colitis forum. I just found out I have cancer. I kept getting the brushoff from everybody. The post tells all about it.
I am having depression, too and I would like to hear what the people on this forum have to say about what all happened to me.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
No meds. 

Forum Moderator

Date Joined Apr 2007
Total Posts : 32602
   Posted 7/1/2009 9:58 AM (GMT -6)   

Posted by UC since'76 on 7/1 @ 9:06 AM On UC Board:

have had UC for 33 years. It started with just some odd cramping for two nights in the middle of the night right after my wedding in 1975. At some point it became pancolitis. It was always pretty mild. Mostly, it was urgency.

I had my first flare after having UC for 30 years. I was in the hospital being treated for bronchitis. I did not have a personal physician. They just assigned a doctor. He must not have known a lot about UC because he started ne on magnesium pills that I was to continue at home. When I took the first pill, my colon sprang to life. I had a formed stool with no blood. Over the next daysI deteriorated into my first flare. I was hospitalized, treated with solu-medrol and was OK.
Had my every two years colonoscopy March 2008. It showed remission and normal biopsies.
There are only two hospitals in this town. My insurance only lets me use one of them. Last March they sent me a letter saying they were in negotiations and I might not be able to use that hospital either. This upset me and I started bleeding. They sent me a list of new places to get medical care. They were all small clinics in small outlying towns. Most of them did not even have a GI. For $707.00 a month, I was going to have to get in the car, drive away from the city to a little hick town to get medical care!
In March I went to the ER and was a little anemic. They said "Oh, you are only a LITTLE anemic," and sent me home. They did not do anything...and I HAD CANCER!
In April I was having pain. I went to the ER. They gave me about a dozen prednisone tablets and sent me home...and I HAD CANCER!
Two days later I came back and insisted on being admitted. I did not want to see my old GI. He had gotten angry and upset me terribly when my insurance changed and I could not afford Asacol. So my personal physician called in a GI from a new group. He never showed and he was supposed to be my new forever GI. Maybe he did not understand this because my personal physician does not speak English very well.
Another doctor from the new group came into my room and immediately started backing towards the door. I was frantically trying to ask questions. After five minutes, tops, he said in a slightly loud voice "I've got to GO." and he left. Some woman came in (their nurse?)  and said she had seen my Cat scan and all it showed was a little irritation, not inflammation and so no colonoscopy. A young doctor from the group came in and all he wanted to talk about was my Xanax.  He said I would not get that if I came to his clinic because he didn't mess with that junk.They were not going to do anything so my personal physician sent me home...AND I HAD CANCER!
While in the hospital, I told everyone who came into my room that it felt like I had four hot charcoal briquettes just inside of me. All I got were blank looks. One little nurse had never even heard of Ulcerative Colitis.
So I made an appointment at Vanderbilt in Nashville about a two hour drive. I had to wait two months to get in. I had a colonoscopy day before yesterday. The doctor showed me pictures when I woke up. I HAD CANCER!
How did it grow so fast? I was always told if you had your colonoscopies, if they ever found cancer it would be small and they would take out your colon and you would be alright. But this thing is big. And I have been having strange weakness and shortness of breath for a few months.  I can barely make it to the mailbox and back. I am bleeding and have to take one or two pain pills every day. Yet it was not even time for my next colonoscopy (March 2010) and my last one showed remission.
I kept trying to tell people I was having symptoms but they just kept brushing me off. This thing was smaller in March. That could have been a matter of life and death for me. And what about the CT scan. Did they not see it? Was it even there in April?
Today, the surgeons office is supposed to call to make me an appointment. Surely they won't make me wait for months with cancer?  I just want this thing out but the GI says they may want to do other things first like radiation and chemo.
I have not slept . The GI called last night with the bad news. I don't think I will ever sleep again. I am actually having hallucinations right now. That happens when I don't sleep. The firplace logs are pink and green and jumping up and down. I was having hallucinations in the hospital in April because no one ordered me anything for sleep and I was up for three days. I told the young doctor about  it and he asked if I had ever seen a psychiatrist!
The whole time my grown daughter was deciding to move to San Diego immediately instead of next year. She dropped out of nursing school and moved June 9. She has a new husband she hardly knows that she got off the Internet. He is getting out of the Navy next week. She does not know about the cancer. I need her so bad. I am going to have to cope alone with a new ileostomy
 and all the bags plus chemo plus terror and having to travel two hours each way.
I live with my son and a sick cat. I can't ask my son to help me with the bag. He is already having to take off work to drive me. He has heart trouble and headaches. I saw him crying last night after he got the news.
I may not have long to live. I may not be here for Christmas. I will not know the stage of cancer for a long time. It will be after the surgery and any chemo or radiation they do. I am used to being here. I do not want to be dead. My son and my cat look a little strange to me. I think I already miss them.
This post is too long. I am sorry. But you and my son are all I have and I needed to write this.

Forum Moderator

Date Joined Apr 2007
Total Posts : 32602
   Posted 7/1/2009 10:15 AM (GMT -6)   

Dear UC,

I copied your post from UC to here so it would give the members an understanding of what you are going through.

I am so sorry it took so long to dx your cancer. Now let me see if I can help in some small way.  First of all I know you are very angry at how things played out in your medical treatment but once you get past that please know that your battle with cancer is a tough one but it can be won.

If you are confirmed to have colorectal cancer, further tests may be done to assess if it has spread. For example, a CT scan, an MRI scan, an ultrasound scan.  This assessment is called 'staging' of the cancer. By finding out the stage of the cancer it helps doctors to advise on the best treatment options. It also gives a reasonable indication of outlook (prognosis).

When you are told you have cancer, the diagnosis affects not only you, but also your family and friends. You may feel scared, uncertain, or angry about the unwanted changes cancer will bring to your life and theirs. You may feel numb or confused. You may have trouble listening to, understanding, or remembering what people tell you during this time. This is especially true when your doctor first tells you that you have cancer. It is not uncommon for people to shut down mentally once they hear the word "cancer."

In your case you are feeling very angry and I know I would be feeling the same way.  You have my support. There is nothing fair about cancer and no one "deserves" to have it. A cancer diagnosis is hard to take and having cancer is not easy.

Now is the time to be your own advocate. Even though people facing cancer cannot change their diagnosis, they can seek out reliable, up-to-date information and talk to family members, friends, and their health care team. Finding good sources of support can help people with cancer take control of their situation and make informed decisions.

I know we have not met before but I come from a family with a huge history of cancer and I have had skin cancer myself.  I lost many to this disease but also watched many battle this disease and come out winners.  So plan your battle and know we are here for you.

Keep talking with us.

Gentle Hugs,




Moderator: Osteoarthritis, GERD/Heartburn
Anxiety/Panic, & Depression
*~* *~*
"When you find peace within yourself, you become the kind of person who can live at peace with others."
Not a mental health professional of any kind

Regular Member

Date Joined May 2009
Total Posts : 85
   Posted 7/1/2009 10:19 AM (GMT -6)   
First of all I have to say that I am very sorry you have to go through this tough time. I cannot imagine how tough it must have been for you when you got the news, and it has to be frustrating that they took so long to diagnose it. I hope that you can find the strength to fight it and that you can make it through.
My prayers are with you and your family at all times, please keep fighting and posting with us.
You can do this!

UC since'76
Regular Member

Date Joined Dec 2006
Total Posts : 77
   Posted 7/1/2009 10:56 AM (GMT -6)   
Thank you for moving my post. I did not know how to do it.

I am just sitting here alone waiting for the surgeons to call. My poor son is coming to take the cat to the vet at lunch. His feet keep swelling up really big for no reason. It costs a lot. Once it was $400.00 They give him a cortisone shot and it gets better but the shot can make him diabetic at any time. Because he is a slasher at the vets and would need frequent blood work, he would have to be put to sleep if he became diabetic. I couldn't bear to lose him right now.

This house is poorly built and even with a regual exterminator, chiggers get in. I am covered in bites and scratching uncontrollably. Benadryl helps some.

The hallucinations are terrible. It looks like everything is moving and alive. I don't know anyone and have no family except my son and absent daughter. It would be so nice to talk to anyone.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
No meds. 

getting by
Forum Moderator

Date Joined Sep 2007
Total Posts : 40404
   Posted 7/1/2009 11:00 AM (GMT -6)   
Hi there,

Just remember that you can live a long time with a colostomy bag. It isn't the most pleasant thing, but it is doable. I hope that you have a good prognosis.

I am sorry it took so long to get a diagnosis. That just doesn't seem fair to me. I think that they should have taken this much more seriously and gave you some information much sooner than they did. With that being said, remember that we are here for you and will support you through this.

Everybody here is so kind and compassionate and understanding. So stick with us. We are here for you.

Try to relax. Stress just adds to the pain and discomfort. Try to do nice things for yourself.

Best wishes for a wonderful day.

Hugs, Karen
  Moderator-Depression and fibromyalgia
fibromyalgia, Chronic fatigue, depression,allergies

UC since'76
Regular Member

Date Joined Dec 2006
Total Posts : 77
   Posted 7/1/2009 11:26 AM (GMT -6)   
What is so bad is that I have to wait so long to see what stage my cancer is. It will be after the surgery and anything else they do first. My doctor seemed annoyed that I wanted to know this so badly.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
No meds. 

Forum Moderator

Date Joined Apr 2007
Total Posts : 32602
   Posted 7/1/2009 11:40 AM (GMT -6)   

Hey there,

I am so sorry about your kitty and hope all is well.  Our pets are like family members.

Surgeons can sometimes be stand offish as they do not really have the answers until they actually do the surgery and see what they find.  They don't like to guess and then be wrong in what they actually find.

I know my sister's surgeon would not even confirm it was Ovarian cancer until surgery even thow all things point to Ovarian but the surgeon claimed you cannot know until you see the tumor and biopsy it for sure.  It was of course ovarian cancer. My sister was treated for Ovarian cancer pre surgery and it was a long time before surgery as she went through chemo and had other issues arise.  She was dx in August 08 and had her surgery at the end of January, 2009. 

We all helped her and she did make it through her surgery. 

Take care and you can keep talking right here.


Veteran Member

Date Joined Mar 2009
Total Posts : 1190
   Posted 7/1/2009 7:42 PM (GMT -6)   
Hi UC,

I'm sorry for the terrible pain you're in right now. It's understandable why you would feel angry and upset. I can't top the advice you've already been given here, but I want to second the idea of reaching out to as many people as you can, getting as much information as you can, and asking for as much support as you can. You have my very best wishes and prayers, UC. I will keep checking back here to see how you are doing, and offer whatever I can in the way of compassion and support. ((((hugs))))
Moderator, Depression Forum
“Hope is the pillar that holds up the world.”  ~Pliny the Elder



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