Devastated

My father who is 64 found out he had cancer of the tongue last year.  He was taken into hospital pretty quickly and had that part of his tongue removed.  They also removed a couple of surrounding glands as a precaution, they said.  He had a course of radiotherapy to kill off any cancer they missed during surgery.  He seemed to be doing fine.  He came out of the surgery well and was making very good progress.  He was having periodic check ups with his doctor and was told he was doing very well.  Unfortunately, as bad luck would have it.  After his surgery he had a minor car accident, where another car drove into the side of his car.  He didn't appear to be injured at the time and was still making good progress.  Some weeks afterwards he started to feel some discomfort in his right thigh.  He went to see his doctor, who upon hearing he had had a car accident, gave hime some pain killers and sent him away.  The pain killers helped for a short time and gradually the pain started to get worse and worse.  When he saw his doctor who performed the treatment for his tongue cancer, he just told him that if the pain persisted then he would take a look at him, but he didn't seem too concerned.  Months passed by and my father kept on seeing his regular doctor and he just prescribed Morphine to help him with the pain.  My father had lost a lot of weight because he was in too much pain to eat anything anymore.  Finally the doctor decided to send him for a bone scan.  Whilst at the hospital my father was having some problems urinating and was advised to go to the ER if it persisted.  So that is what happened.  He ended up spending 2 weeks in the hospital.  During that time he was told that his cancer had spread.  He now had it in his hip.  It has apparently passed through glands and into his blood and then his bones.  He has some spots of the cancer in his liver now also.  He was transferred to a Hospice so they could help control his pain.  My father did not want to be in there and demanded to be at home with his family.  So currently he is at home but it is a very stressful time for my mother who is taking care of him at present.  I go and stay with them when I can to help her out.  To tell you the truth I am a little unsure how this is all going to end.  We have been told my father only has a matter of months to live.  We are all devasted and of course my father has not taken the news too well at all.  I am upset and angry that this wasn't detected sooner when something could have been done about it.  But I am sure that is just a natural reaction.  I am trying to keep a calm head about this although I am having a hard time with it.  I just sit and cry, I can't help but think of my father and how he used to be when he was fit and healthy.  Baring in mind he was always a fit and healthy man.  He took up Taekwondo in his 50's and got his blackbelt a few years later.  He has never smoked or ever drank alcohol in excess.  It just seems so unfair.  And it also makes me think weather this is something that could possibly be inherited.  My grandfather died of hodgkins disease (in the 1970's).  Has anyone been through this or is going through it right now with a loved one.  I would be grateful for whatever advice can be given.

Thank you.

Paula:

Does your father qualify for Home Health?  When my husband decided he wasn't ready for Hospice we found help with home health who could also give pain meds.  They can often help with bathing and other care that Hospice might not be able to do.  Hospice in our area was available at home..actually the same nurse...and Burge, 51, died at home where he wanted to be with our children and his family present.  

 Also call the American Cancer Society in your area.  Each office is a little different, but we found out, after the fact, that they may have volunteers who would help your Mom with household chores, etc.

 You have a right to be angry about the spread of the cancer without detection.  My case was a little different and went more than three years, but we held lots of anger against the first surgeon who messed up my husband's colon resection.  I still think he was wrong, but that doesn't matter anymore and putting it out of mind has helped us find peace. 

My husband, Burge, died July 28, 07 and we are now in the grieving stage.  It doesn't sound good for your Father and I am so sorry.  Please live each day as if there is a tomorrow, but pack everything you can into each day.    Tim McGraw has two very good songs that may help, Old Friend and Live as if you are dying. They might put things into prospective.

 Wish I could help more.

Nikki 

Thank you Nikki, I am sorry for your loss.  We are in England so things are a little different here.  My fathers doctor wants him to go back into the hospice but we are fighting to keep him at home where he wants to be.  We have a nurse who comes to replace his medication in the driver each day (a little machine that puts medication into his arm).  He has Fentanyl patches on his body and we give him Oxycodone when he needs it.  But it seems he needs that a lot more often right now.  The doctors here just dont want to deal with him at home.  But we are going to fight them to make sure he stays there.  A MacMillan nurse came to see him last week (a specialized cancer nurse) but I am not sure if she was of any help.  They certainly dont make it easy for us to keep him at home but we are working hard at it.  That is what is keeping us going right now, just taking care of him and focusing on the daily care and not thinking too much about the future.  I know he hasn't got long left now.  Thanks for your advice.  My thoughts are with you also it still must be a difficult time for you.  Take care x

 

On 8/11/2007 Paula1970 wrote:

My father who is 64 found out he had cancer of the tongue last year.  He was taken into hospital pretty quickly and had that part of his tongue removed.  They also removed a couple of surrounding glands as a precaution, they said.  He had a course of radiotherapy to kill off any cancer they missed during surgery.  He seemed to be doing fine.  He came out of the surgery well and was making very good progress.  He was having periodic check ups with his doctor and was told he was doing very well.  Unfortunately, as bad luck would have it.  After his surgery he had a minor car accident, where another car drove into the side of his car.  He didn't appear to be injured at the time and was still making good progress.  Some weeks afterwards he started to feel some discomfort in his right thigh.  He went to see his doctor, who upon hearing he had had a car accident, gave hime some pain killers and sent him away.  The pain killers helped for a short time and gradually the pain started to get worse and worse.  When he saw his doctor who performed the treatment for his tongue cancer, he just told him that if the pain persisted then he would take a look at him, but he didn't seem too concerned.  Months passed by and my father kept on seeing his regular doctor and he just prescribed Morphine to help him with the pain.  My father had lost a lot of weight because he was in too much pain to eat anything anymore.  Finally the doctor decided to send him for a bone scan.  Whilst at the hospital my father was having some problems urinating and was advised to go to the ER if it persisted.  So that is what happened.  He ended up spending 2 weeks in the hospital.  During that time he was told that his cancer had spread.  He now had it in his hip.  It has apparently passed through glands and into his blood and then his bones.  He has some spots of the cancer in his liver now also.  He was transferred to a Hospice so they could help control his pain.  My father did not want to be in there and demanded to be at home with his family.  So currently he is at home but it is a very stressful time for my mother who is taking care of him at present.  I go and stay with them when I can to help her out.  To tell you the truth I am a little unsure how this is all going to end.  We have been told my father only has a matter of months to live.  We are all devasted and of course my father has not taken the news too well at all.  I am upset and angry that this wasn't detected sooner when something could have been done about it.  But I am sure that is just a natural reaction.  I am trying to keep a calm head about this although I am having a hard time with it.  I just sit and cry, I can't help but think of my father and how he used to be when he was fit and healthy.  Baring in mind he was always a fit and healthy man.  He took up Taekwondo in his 50's and got his blackbelt a few years later.  He has never smoked or ever drank alcohol in excess.  It just seems so unfair.  And it also makes me think weather this is something that could possibly be inherited.  My grandfather died of hodgkins disease (in the 1970's).  Has anyone been through this or is going through it right now with a loved one.  I would be grateful for whatever advice can be given.

Thank you.

Hi Paula,

I am sorry for what you and your family are going through at this time.  My dad was 71 when he was finally diagnosed with lung cancer.  My dad and my husband was not diagnosed early enough.  My dad complained for a year or more about his chest and back pain before he found a doctor that  that finally wanted to run test.  By the time the test were performed, both lungs had tumors that were confirmed cancerous.  He went throught he cemo and radiation treatments but in Novemember of 2004, he lost the battle.  In 2003, my husband, which went regularly to the doctor for blood test and check-ups, experienced sickness when he ate.  I told him it sound like gall stones and needed to make an appointment to see his doctor.  He did just that and the doctor told him he had a bacterial infection, therefore perscribing him antibiotics.  Once he had completed the atibiotics, he did not feel any better.  The doctor finally ordered an ultra sound which confirmed he had gall stones, but there were more than stones in the picture.  They discovered a mass on his right kidney, so the doctor ordered a ct scan.  It came back with devistating results.  My husband had tumors spread from his right kidney all the way over to his left, with the largest of them measuring 12 cm on his left kidney.  After several test, they confirmed it was cancer and they were going to remove the left kidney, adrenal glands, a few lymph nodes and the gall bladder.  Eveything went well.  We ask the urologist if he would need radiation or chemo and they said no, I then ask what was going to be done to keep a check for recurrence and they said xrays and blood test would be sufficient because they were 99% sure they got it all.  They did a c-scan 6 months later to check because my husband was having some pain in his side.  The test came back showing all was still clear.  This year when my husband went back for his annual check up with the urologist, he dicided to order a c-scan and found the cancer was back and had spread to the lungs and in several lymph nodes.  He is now seeing an oncologist which has told us he has metistatic recurrence renal cell carcinoma and it was terminal.  He is on treatment with SUTENT, and we will find out if the drug has stop the spreading of his cancer.  We are now making plans to go to Moffit cancer center in Tampa to see if there is more that can be done.  I am sorry I got so long winded, but I felt I needed to give you this information to let you know you are not alone.  One thing we have learned is that the doctors, while extremely educated, do not look do what we think is enough at time.  I don't know if this is something the insurance companies have caused or just the lack of concern of the doctors.  What ever the reason, we have found that patient persistance is the answer.  We all know when something is just not right in our body (sometimes) and we need to be the ones to direct the doctors sometimes (easier said than done at times).

I wish you and your family all the luck in your fight, and pray that your dad will beat this nasty disease.  If you just need to talk sometime, e-mail me any time and I will reply as soon as possible.

Hang in there!

jeff's girl 

Do these stories sound too familiar. My husband was being treated for Renal Cell with Nexavar and Sutant. His leg kept giving him a problem and the oncologist kept saying it was probably do to the Sutant. Wrong, the cancer spread to the spine. I had him 2X in the same week to the oncologist. The third visit the same week was to the primary care doctor who checked his reflexes in both legs and had none. He looked at me and said get him to the ER right away. If the oncologist had maybe reacted sooner he would have maybe had a chance. The neurosurgeon had him in the operating room but then pulled him out 20 minutes later. He came out and said he had signals on the spinal cord. I think he pulled him out because of the screw up from the oncologist and his quality of life. I learned don't have all your faith in doctors.

I had my husband home with Hospice then unfortunately the pain could not be controlled at home. The Hospice nurse felt is was better to have him admitted to Hospice, which I stayed with him. They were able to control the pain there but I did all the care taking. Thats the way I wanted it. I wished that I was able to keep him at home. Cancer is a terrible disease and I hope one day they find a cure.

Best of luck to everyone who is fighting this terrible disease and the caretakers.