Colon Cancer Diary

this is the page that i wrote during the treatments as a daily diary of sorts.....i tried to write down everything that we were told during this time.....

Hello from a caregiver. My husband has recurrent colon cancer in the lymph nodes; one is about 5 inches in size very quickly appeared between his 3 month ct scans.

His lymph nodes were positive during colon resection surgery in Jan.97 docs were sure it would be back to haunt us very soon. His advanced adenocarcinoma was the size of a large grapefruit; grew thru & blocked the upper Transverse colon; it was attached to the abdominal wall so badly that he was closed with a mesh type material under the skin.

This spot could not be cleared of all cancer cells - required radiation with 5 fu chemo and leukovorin. This treatment was also to delay the cancers return.....to buy some time they say.

He wore the fanny pack on his belt for 6 weeks during radiation, so the chemo was given 24 hrs 7 days week. He said it was dam sure inconvenient.

They mentioned poorly differentiated cancer cells and rapid growth. We had no idea how quickly it would progress, but we soon learned it was too rapid.

Our first oncologist was a rude guy that would not let hubby ask questions - he simply said please do not interrupt - let me finish. Then his answer was everyone is different - every cancer is different. We have medications to treat any side effects. What a jerk! We complained big time at the cancer center and that doctor soon left to enter research - perhaps he is better with the rats !

Our second oncologist seemed friendly and sincere till things turned bad - then he didnt want to cross that line of discussing the last few months. He simply wanted to try clinical drugs to prolong the suffering. Another jerk!

Charlie told him that he wanted good use of whatever time was left and would not be treated as a guinea pig or spending those last days in the hospital regretting that treatment.

The previous treatments in the spring were mild, but this time around, docs were trying to shrink a tumor that was already causing severe pain, since it was located in the left lower ab, just below the kidney. The mass must have been causing pressure on everything inside to hurt so much.

The port had clotted back in the spring & was replaced with a groshong catheter for the chemo injections, but still its better than the arm sticks ! so they say !!! Our opinion about that changed later. Ports are dangerous but who would tell you that up front .

He caught a cold, coughed real bad one nite then the groshong catheter started slipping out. Our wonderful oncologist met us at the cancer center in the middle of the night in a thunderstorm, just

This being his 3rd "port/cath" which we hoped it was going to get better, however, the surgeon ( dr harris or his helpers ) had screwed up..........He left the ends open....no caps.....open to bacteria or could possibly suck air thru his heart ! This was an all day crisis as we waited for "someone" to locate and deliver the appropriate caps needed, listening to whom might be really to blame. Several cultures of blood was drawn to send to the lab, but it all came back just fine, so they say.

Little did we know the infection would show up about 2 months later. No one said how long the infection could be there and grow and make him sick, thinking it was the treatments causing illness.

After the treatments were over, his pain continued. Docs prescribed Bentyl for an irritable bowel; says it is very angry now at the radiation but should improve.

They prescribed Loritab for his pain which was never enough, Ambien for bedtime, Compazine for nausea finally, Oxycontin at bedtime....docs say that oxycontin is a morphine based opiad tablet helps him to rest better. These pain meds are adjustable, more can be taken if needed.

recover. Some patients are said to have had diahrea during the iv !!! At first it only showed a 15% response rate. It might buy some time, but it's time in the hospital for dehydration, so is it worth it?

CPT11 is used only when 5fu fails. Sometimes it's referred as palliative care for the patient. I put out a message on the boards tho and got many good responses that the docs are handling the side effects much better now for the patients.

As a caregiver I have learned many things along with flushing the cath, taking care of his personal needs medications . It can be very frustrating to not be able to help ease his pain, but he knows I care; he knows I am here for him.

I do talk with his doctor, ask about his condition & bloodwork. His "chemo-brain" sometimes forgets to tell the doc certain things that should be discussed so I make a list. But of course he doesnt want me saying anything to the doctor.

Also it is good to have a little time alone; to get a breath of fresh air or just to get out run errands or to have a complete telephone conversation with a friend. I love the outdoors and flowers and try to spend as much time as possible out in the yard. It would be easier if his family were more involved, but they are so busy :(

Remember to take time out for yourself. Spend quality time with the children ! Inform them very slowly & tenderly of the cancer, and the possibilities. Children deserve honesty - they also need to ask questions and prepare for the inevitable.

In November the doc said statistics for this advanced cancer show that people usually live only about a year. But it's progressing so quickly. Only God Knows !

Our oncologist on the other hand will not discuss time or what the next possibility really is...we get no warnings about what to watch out for.....this disgusts me because my husband tries so hard to make the most of each moment and i know that if he knew this month was his last, he would try to move heaven & earth to do something really special for our children. Although he does try to make each day perfect now !!

3/16/98 the ct scan showed possible liver involvement, we feared the worse was near....but doc was not prepared to accept this diagnosis - he scheduled a gallium scan that is much more sensitive and Charlie had to lie still for nearly an hour for the scan - This ruled out liver mets !!!

Now he gets a month off to think about the cpt11 treatments and the doc says they are now following with taxotere/cisplatin when cpt fails which is not so bad on most patients, so he says.

The scans did show the mass went down from 9cm to 7cm but docs think this is not enough - they expected much more to go away with the radiation treatments - chemo is a must. There was also another 7cm mass next to that large lymph node which docs think could be only a cyst which does occur with radiation treatments. Our fingers are crossed ! But it could still be another cancer ~`and God help us if it is.

Colon Cancer Recurrence - It is our understanding there is nothing to prevent recurrence when cancer is found in late stages. Once it is found in the lymph nodes there is always a chance of recurrence; treatments may help delay that. Chemo 5fu is very mild and did not help our situation at all - the cancer recurred during the treatment ! CPT11 is terribly harsh and is currently showing a 30 % response rate which only means a response ( shrinkage ) and not a cure. Most patients stop cpt after the first or second dose !

I would advise everyone to read up and learn everything they can about the cancer and the treatments - check on line daily news for updates also.

8/96 A long hot humid summer made Charlie feel so tired every day. One day he came home with a stomach ache and was pale as a ghost. He just wanted to lie down and rest. Wondered if he had gall stones, but was not a man to visit a doctor - No Way.

Vomiting and pain for several days, that started turning very very dark green. I knew this could not be bile - this was awful -it completely stained our white wash cloths. This was day and night and he refused to see a doctor.

12/25/96 After being up all nite long - the phone rang at 3 AM and the message was that my father had died. His artificial aortic valve must have collapsed.

12/31/96 Finally, he agreed to go the ER....where he was found terribly dehydrated and a mass showed up on the ultrasound.....he was advised to get help right away.

Jan 1997 colon resection surgery to remove large grapefruit sized mass. He lost 100 pounds this month. His incision was left partially open to heal stronger to allow drainage. A nurse came to our house twice daily to change the packing. He was in a lot of pain.

I found myself being both mother father suddenly to our 3 children handling all the "situations" that arise, alone. The washing machine broke, the fridge started leaking, we lost some shingles from the roof when a tornado went over nearby, our daughter had a minor car accident coming home from school. The kids were ok but her neck pain that goes down the arm has hurt ever since, even after physical therapy.

Clotted port caused severe arm pain that went up the neck and into his head. It appeared like an oncoming stroke, but the cancer center just gave him more pain meds instead of realizing the danger his life was in at that moment. One nite we rushed to the ER and his surgeon was appalled at what was happening - he immediately disconnected the chemo pump and started Charlie on coumadin plus heparin injections to dissolve the clots.

Nov 97 CT scan shows a mass. It is a large lymph node about 3 inches. Hubbys pain in his side and back are increasing - he is taking more pain meds getting very little relief. Why was the mass so dang big??? It just pops up suddenly and is large?? Or did they overlook it before?

Surgeon looked at this and said inoperable and incurable - hopefully, maybe a year left. But Dr Harris said the surgery could be complicated since he had been thru radiation, plus there would most likely be several new tumors before he had fully recovered from the operation. So now he will consult with oncologist.

Dec 97 The oncologist wants to use CPT11 - hubby said no after he described its side effects. He did not tell us the dangers involved - i found them online and in the support groups. Dr. Morrison seems frustrated with me because I have some knowledge.

It was during this time that a good online friend spoke to me of her father taking 2 treatments of CPT & was terribly ill one night. I asked her to please take him to the ER because I had read so much about it and she later told me that I had truly saved his life. It took him 2 months to get better but has put his life in God's hands and refused further treatments. . . Her father passed away one day after Charlie's death. But he managed to have some quality time after refusing more CPT.

His weight came back up to 242 - wow. Before cancer this guy weighed 265 and resembled the Grizzly Adams actor. A strong handsome man who worked his butt off to earn what he had & for his children. Quite the romantic too!

Jan 6, 98 hubby's ct scan showed the lymph node to be 9 cm X 7.5 - it was growing. He doesnt feel like he will be here much longer and starts talking more about our handling things later on. He says he doesnt want me to spend the rest of my life alone- that i should remarry someday and find happiness. Oh God !

Jan 14 his groshong catheter in his chest started slipping out. Our oncologist met us at the cancer center at 9pm in a thunderstorm to tend to it. wow.

Jan. 19 he was sedated and got a new cath put in. this one was deeper and hurt something awful. His pain was so bad in his shoulder, that they feared it was dislocated.

Feb 10....Treatments are over....Got a Gallium Scan to see why he is still having so much pain with his shoulder....The port looked good...no clots- had a portagram to be sure. Ultrasound shoulder xrays were ok too....cannot explain why there is so much pain after the cath was implanted.

The liver looks different and could be involved. The radiologist told me to look at the pictures with him - said this is not good. He has seen this many times before. He also said an Onco can't read this pictures!

There is also a 7 cm mass next to the old one...it could be a cyst, but did the radiation cause more cancer? This makes a 14.5 total mass in his left side causing much pain and pressure on everything else.

The CT scan was awful this time - the injection of contrast dye ruptured a vein in his arm and he was screaming of pain - they had to stop everything and I rushed to his side, where he began to vomit and they called for the doctor to check on him....after a few minutes it eased up, but left a big knot in his arm for a while.

March 28 The guys chauffered the trip to Biloxi Casinos and Charlie had a great time....said he could play a couple of hours and then go to room to rest up and take his meds, then go back and win back his losses. He had a wonderful time but was exhausted when he got home.

I have never been so mad in my life !! But i thank God they didnt have a wreck over the weekend...he would have bled to death.......why didnt they call us Friday nite and change his dose of coumadin .... idiots...

I was on a field trip with the first graders to the Zoo when this happened and was called home to check on him by our daughter. She thought he was having a seizure and was very frightened.

Now there is a spot on his liver - it could be fluid or damage done by treatments. It could be fluid known as ascites or a sub serosal. According to the National Cancer Institute articles , it could mean 6 months left. He was sick all morning and took his meds and slept most of the day after that.

The CT scan was awful again - drinking the barium made him vomit terribly and they fear his pictures are incomplete......what if something failed to show up this time. Maybe this was a sign of a new blockage?

But once again they showed me the pictures on the spot- the rad tech even let me sit with her while she ran the machine so that i could observe the machine as well as watching Charlie thru the window while it worked. She said it was very strange how i came down the hall at the very moment he got sick - she said that he and I have a special connection there if I could sense his pain.

April 22 he woke up sick and hurting again. The blood culture is positive - he needs 14 days of iv antibiotics( Rocephin ) and removal of the cath soon.

April 23 the antibiotics are given in a vein in his hand now and he is already nauseated each day from the infection...so now he just takes his meds and rests from it all.

April 28 seeing the oncologist he says the fluid spot on the liver may be nothing to worry about - maybe due to the infection from the port right now. The mass is larger but dying on the inside - could be just an inflamation from the treatments.

Ironic thing here is during the beginning of the talk the doc said the liver was fine....after he finished talking I said hey - what about that fluid spot? He was not going to mention it ! May I kick him now?

April 29 The infection in portacath is called staphlycoccus and his antibiotic is not working. Changing to vancomycin which causes redness in face during iv has many side effects. Of course they didnt tell him one doggone thing about the side effects....i found it online ! then questioned them about it.

April 30 While reading the file at the cancer center I noticed part of the doctors notes that mentioned possible palliative care I am afraid he is about to give us some bad news. But he never brings it up ! Why doesnt he just say it ??

May 2 much pain in the evening in his back all across his stomach under the ribs. It was a bad nite. He hugs the heating pad constantly and sofa pillows around his belly.

May 4 ditto but now having cool sweats and vomiting the green stuff again. Cancelled all doctors appts - he does not want to ride at all - wants to sleep after being up all nite. About a month ago he was vomiting this green stuff too - just like the first diagnosis of colon cancer - we are very scared. Our children were afraid to go to school this morning - afraid daddy may have to go to the hospital again :(

May 5 - still vomiting nasty green - he saw the doc about 9am thinks it is a combination of having cancer, having staph infection all those meds are working on him.....starting several ivs we spent the whole day at the center getting re hydrated regained his color as well. They used decadron for the nausea it worked. He got his vancomycin for the staph infection and then lots of fluids.

May 6 - more ivs usual pain. The surgeon removed his groshong catheter from his chest said Charlie is not looking too good. He has been fortunate to have had this year should have his house in order.***The surgeon is the only person who has been up front with the truth......the cancer center will not discuss "time".

I want to hug him ! But that is impossible. He is in so much pain. He gets very irritable. This is not fair. HE deserves proper pain management.

May 8 - terrible back pain side the nausea is starting again. Had his daily ivs of vancomycin...only a few more to go......then after midnite he started vomiting dark green again. It appears that nothing he eats is going thru .

But he changed his mind went for the iv antibiotic just in case, it could be the infection making him sick. How long does this staph work on you?? Or is it the vancomycin making him vomit??

I wonder if there isnt more colon cancer blockage - he is due another ct scan around the 20th. His belly is so hard and swollen and his color is ashy.

My husband is tired. Charlie is tired of being sick and he is tired of the treatments and the complications. He doesn't want our children to see him crying.

I want to put my arms around him and never let go - but it hurts him to be close. His body is so sore and achy I cannot hug him anymore or snuggle up to him at night - this is getting more difficult than i ever imagined. The children cannot even Hug their Daddy now. A little kiss and a little pat :(

Some of you wonder why I get on my Soapbox - Now maybe you will understand what i do with my time when he is sick and there is nothing i can do. There are times we talk about the things that need to be done - we cannot ignore the inevitable. He has tried to take care of things like his will and he has talked with our teenagers about their life after he is gone.

Our 7 yr old does not know what lies ahead but she knows the word cancer and knows that daddy is not getting well. We do talk about dying and becoming angels and she understands that parents do not live forever. She knows that daddy cannot play tag anymore and was not able to hide the Easter Eggs this year and handles it well. She understands his tummy ache and he needs a nap - I take her hand we go out for a bike ride or a swing. We water the flowers in the flower bed he and she made for me 2 years ago we are always planting more there.

I want a cure and I want the truth about everything to be available to all cancer patients. It is true that they are already frightened enough BUT they do not deserve lies and deception.

OUR family wants to know each step and the risks involved with it so that we are prepared to do whatever is necessary when a complication occurs. When we are allergic to something - we avoid it. When we have children - we learn cpr and move our cosmetics and cleaning supplies to a higher shelf. It is a way of life for Most of us - just being prepared.

But most important is the fact that HE wants the truth. HE wants to know what's in store if he agreed to taking CPT or another option. HE wants to be able to decide . HE wants Quality Time for whatever is left. He does not want his last days to be in the hospital and HE does not want more agony.

For those that do not agree or understand my mission to reveal the truth....I am truly sorry......BUT this information should be found at the cancer center instead of the internet.

FDA has approved these chemo drugs after their clinical trials and SO they must be safe. IF not then they should tell us so up front. AMA is aware of what they do Oncologists should be able to share the truth with us.

The medical staff is at fault when they withhold certain facts about treatments they are giving us AND deserve the kick in the pants that i am about to give.

Chemotherapy drugs have saved many lives. For this I am grateful. BUT what did it do to the others? How many are forewarned that the chemo can do more harm than good?

May10 Our oldest daughter is driving and going to graduate from high school Friday. She takes a turn today to drive her daddy for the ivs. This gives me a little while to plan prepare the party she wants to have. We are praying that he will be here for all this.

May 15 Antibiotics are completed and infection should be all cleared. Doc wants tests like upper GI and another CT to see what is causing the nausea. He said there is obviously something else going on in there. Hell yes it is obvious !!!

It's graduation day and relatives are coming in for the weekend and dear hubby puts on a big smile acts like nothing is wrong. Lots of pictures are taken, many wonderful memories are recorded. Everything is beautiful and happy.

Our son is scared and cannot handle this....he wants to move out and stay with friends for a little while....i have to let him go although it is very frightening to do this, but it is summer time and he wants a life too.

He stays with some good friends for 3 days realizes how much we all need each other then comes back with a warm heart & helping hands. I thank God for these beautiful children .

May 19 He has been sick all nite and the vomiting has started but this time it is brown water like feces. He doesn't want me to tell anyone especially the doc. He cancels the upper GI today and does go in for the iv nausea meds of decadron and kytril.....when we leave the center he throws up on the grass .

May20 is a better day - after all that vomiting he is totally empty actually feels "relieved" - nibbles a little food all day - BUT a restless nite is in store.....It is building up again...not going thru.

While we are having a better day I take the girls to the mall and we have a little talk about daddy and the fact that he may be soon going back to the hospital - i want them prepared for a babysitter also, because i will be spending nites with him also if this happens. We walk and talk and just let it all out.

Our 7yr old understands about heaven and that parents do not live forever i do bring this up again. I told her that God may need daddy someday soon to come to heaven and be an angel like papa & granny to help do the Lord's work from there. She is very calm as she starts her usual 20 questions.

May21 Vomiting all morning and agrees to go get more iv nausea meds if I will not tell them that it appears to be brown water or fecal matter coming up ......darn it. But we go & i keep quiet about what is happening. This is his own decision and I had promised to obey his wishes....am i stupid??

May22 Gets more iv decadron/kytril plus one liter of fluids per docs orders....HE has lost 7 pounds this week and doc wants him to see a gastrointestinologist ? for an upper endoscopy and the colonoscopy as soon as possible. He suspects a blockage needs to know where what it is. He said Charlie is looking bad he is very worried. He has lost too much in the last 2 months.

He also said that the doctor who previously did Charlies colonoscopy was a surgeon - that it's time for him to see a Medical Doctor .......arent they all MDs??? What is going on here? A personal conflict between the docs maybe?

He did say that an obstruction can rupture and cause immediate death if not taken care of right away. I know this - that's how his mom died - she had a stupid doctor too.

I asked the oncologist if this could be the end working on Charlie, like the surgeon had predicted.....He slapped his folder down on his desk and frowned...saying NO one has the right to tell him when he is going to die !

May23 A wonderful day - no nausea ! He ventured out in the heat to teach our 16yr old to change the oil in the cars. He sat in a lawn chair and gave instructions.

May 23 A good morning, got his ivs, and rode his new riding mower around the yard for half an hour. Napped all afternoon with more pain. Had a good lunch but no supper.

May 24. More ivs today i think he may stay off the mower LOL Men are so stubborn ! But he has been hurting so bad in his back and side....They never found anything wrong with his back......must be that large lymph node is his side maybe causing pressure...docs wont say. Of course they never say too much do they??? Docs wont tell..... He hurt so bad, that he almost didnt make the trip to the center for those nausea meds today....it hurt to sit in the car.

May25 He said his legs are weak for some reason. He has so much difficulty climbing the two steps into the front door today. Everything else is about the same.

May 26 He found he could hardly step up on the deck today while we were out in the yard....legs still very weak we do not know why. Kids played under the lawn sprinkler and we sat out and watched - so hot tho he sure doesnt need to be sweating and lose all those fluids the doc is giving him each day.

He ate pretty good today but not supper - and his pain is still there, but he gets a little break when the Loricet kicks in - boy that stuff is Slow ! I do not understand why they cannot improve his medications.

Things change when you are tied down like this; we can't go out anymore do the fun things we used to do we can't entertain friends like we used to do and now they just don't want to disturb him, cause he needs his rest. But it would be nice to have someone there to listen or help.

OH he was ! Very personable and understanding, the doc will do both procedures next Tuesday, with hubby sedated - If he finds a mass in the colon, he can force a tube thru the center of it in order to give him some type of passage without surgery.

As he poked around on hubby's belly, he found several hard areas and some very tender areas, suspecting the cancer is spreading even more. He also said the liver felt hard and involved. He is so concerned!

The tumors around his bladder were very touchy. I wonder how big they are now.....could they have doubled already? I know that Charlie hurt really bad after all that poking around. Maybe there are more tumors in his belly now....is that what the doc felt?? Is that why he hurts so bad now??

Hubby had gained 4 pounds this week. His bp was 120/60 which seemed odd to me but nurses say it is still good.....his pressure has never done this before. Could it mean something new is going on?? Does anyone have any answers??

May 28 Not a bad nite till 5 am - he woke up with terrible pain in his side and back almost wasn't able to ride to the center for his ivs - he said the pain was nauseating, the Loricet took 3 hours to ease it a little this time.

Upon his return from the cancer center, he was barely able to walk into the house - holding on to the wall and legs terribly weak; his stomach pain was so bad, that he would not let me hug him or sit on the bed next to him. I quickly got his Loricets; took the kids outside so he could rest. In a couple of hours he started vomiting and finally got some relief there. Once again it was brown stuff . Apparently all is not going thru.

May 29 We did not see the doc but he did get his ivs again and his blood pressure was now 108/62....strange. Barely eating anything he feels better empty.

One of his favorites is Biscuits and gravy....so I made this for supper and he tried to eat, but started crying at the table when he could not swallow it. Our 7 yr old rushed to him and hugged him and cried too. We could not speak. This is a moment that we just never forget. Samantha is so young to see this.

That afternoon diahrea began - pretty often. He has spent the past year terribly constipated from the irritable bowel syndrome and the medications... and now.....we have no idea what brought this on he is afraid to take anything for it. He spent the nite going back and forth to the bathroom and his tummy hurts like hell he says, all the way across now.

May31 - The liquid diet starts today to prepare for those tests the diahrea is still persistent. He is willing to try one pepto tablet. At noon he says his tummy hurts so bad that he needs food - tries some soup, but cant get relief - takes his Loricet and tries to lie down for a while.

The soup was difficult to swallow and caused pain in his chest. This is really getting scarey. He hurt something awful all afternoon and talked about going to the emergency room, but he will NOT go. Why would his chest hurt?

He is having very sharp stabbing pains in the abdomen now - very sudden and short pains, that sometimes ease. He also had pains trying to urinate and this has never happened before, maybe those tumors there are growing . It's definitely going to be a restless nite. I have the relatives on call just in case something happens - but hopefully his pain meds will help him rest.

There have been several visits from the family and several friends calling this weekend to wish him well. They understand he is hurting really bad. His brother doesn't stay very long.

His aunt says he has never looked this bad before, not since his surgery last year, and is afraid we are about to lose him. She had brought him a peach pie and is so loving - she fills the void that we both have now that our parents are deceased. Aunt Angeline is his mom's baby sister and has been a very dear friend. She has regular checkups and colonoscopies after three of her sisters have been thru colon cancer & one has ostomy.

The kids summer activities and outings are picking up and I am so grateful - they need to be enjoying their summer. I guess the more they are out - the less pain they will see.

I am so discouraged by the oncologist - hubby needs something fast acting for his pain and he hates those long trips to the center for his ivs each day. They say there is nothing else they can do so I dont see why we cant go back to our family physician for better treatment and comfort.

My husband is not willing to be a guinea pig he says. He just wants a decent quality of life for whatever is left., they arent helping him with that. I dont want to see him suffer. After the procedure on Tuesday I must encourage him to consider making a change, before things worsen. But he does NOT want to spend his last days in the hospital. He wants to be home with his children.

The family physician is an old friend and quite able to handle hubby, as well as the rest of the family as the end comes near. He would not hesitate to order Hospice care .

June 1 - After his meds kicked in he did rest a little last nite and today hurts a little more and decided not to go to town for those ivs - the ride would only make it worse. He starts the GoLytely after while. He is so tired, nods off in his chair. Hurt to lean over to reach for his drink. He doesnt look up at anyone today, just holds his head down while he hugs the heating pad and pillows around his tummy.

The pain increased thru out the day i called the doc for more !!! They will call back later. His brother came by and told him to not wait much longer to get help. It's getting much worse - belly hurts with each breath. The right side is worse as well, over the liver. His urine is very dark yellow and very little, still much pressure to go.

There are stains in his underwear like his bowels are moving and he doesnt know it, for the last 3 days. He just finds it there when he goes to the bathroom.

I called the gastro specialist twice for help. They will call the cancer center and light a fire under their butts to get Charlie something for pain.

I called the oncologist for a different pain med & all they were concerned with was his prep for the test tomorrow and got angry that I cancelled it. They said he could have one more oxycontin i said Bull...... it doesnt work. Are all cancer patients treated like this at the end? I wont have it !!! SO i called our family doc and he said to come over right away to pick up a new prescription and it is dilaudid - he said if it didnt work i could call and get something else. He also called Hospice to see us tomorrow. Hospice will make this right! They look out for the pain and treat it, plus they help the entire family. He told me to not call the cancer center again if they cant help. He will be there for us at any time day or nite.

I called the cancer center for help twice. I told them he could not pee barely at all now and every breath causes his belly to hurt. He could not swallow food anymore - only popsicles now. The phone nurse advises another oxycontin.

Dam. I told her that I was terribly disappointed with them and she said she would talk with the doctor once more for me but they didnt bother to call me back. So much for the Montgomery Cancer Center being compassionate!

Our family physician says if Charlie was NOT getting cancer treatments from them, then he should not have been in their care at all for this. Sounds like these cancer centers are out for the money because they are absolutely no help at all at the end. This whole treatment process has been wrong. He could have been getting his fluids nearby at the doc's or even here at home thru Hospice if it had been ordered properly.

As things worsen I sent my little girl to a friends to spend the nite and gave instructions to the teens - like "what if". They stay with us here at home all evening.

The dilaudid is a little better after the first hour ! For the last 3 hours he said his tummy was feeling better but he had this awful feeling in his chest like he had gas. He stretches his arm up above his head saying his shoulder hurts.

I have packed our bags and we are ready to go to the hospital when ever he decides. It is his decision now. He can't ride in the car because it hurts and will not let me call an ambulance.

9pm while we were talking - his head fell over and he joined the Angels in Heaven. He was not alone and he was not with strangers . He was resting in God's arms now.

I rushed to his side hoping that CPR would bring him back to me but he did not want to come back. As I was screaming for the kids to call 911, they were screaming for me to make him breathe. Each time I blew into his mouth, it just came right back out into mine. It was going nowhere! The next thing i knew, the paramedics and neighbors were here pulling me away from him, so that they could do their job.

I ran out the door and could not bear to watch the paramedics work on my husband. Then they came to me after a while and said i needed to make some decisions.

Our son drove up and down the street stopping every minute or so to see if there was a change, while Beverly stayed with the paramedics as they worked.