Cancer Wids?

[smabify]

Hi everyone,

 

I'm wondering how many other cancer wids there are out there?  I know that there are many of us, and that we all have a unique experience, but I just wanted to get a feel as to how many there are.

 

I don't belong in the suicide threads, because, well, not suicide, and I'm not quite sure I belong in the caretaking thread because it wasn't really a long time, in perspective. 

 

Really just confirming I'm not alone!  I don't like to be "unique" all the time, you know?  (Even if I do sing at the top of my lungs throughout Walmart while my 2 year old tells me to shush)

[robunknown]

I am with you. Wife was diagnosed with Stage 4 cancer when our son was 5 months old. She survived for 5.5 years. She was 34 when she passed. I ended up being in the Extreme Caregiving because the last 10 months were hell on earth.

 

You are not alone!

[singinmomo4]

Pancreatic Cancer wid here.  2 months from diagnosis to his death, 3 months if you add in the month it took for them to diagnose it.  I felt we didn't even get the chance to fight.  Watching him in the agony he was in for those 2 months and especially the last one,  and being completely helpless was hell on earth. 

[Shawn823]

I'm a "short time" cancer wid. DH was diagnosed with inoperable pancreatic cancer in early December 2011 and died in mid December 2012. We went through chemo and radiation hoping that he would get more time, but didn't help much. He died the way that he wanted to, finally pain free but at the cost of not being conscious of what was going on around him. We spent so much time trying to keep each other upbeat that we did not spend enough time talking about how much I would miss him and how bereft I would be without him. He was my best friend, knew me better than anyone and would have liked his insights. You are not alone, smabify!

[hachi]

I lost my DH to esophageal cancer 2 years after diagnosis. Though I did not consider myself an "extreme" caregiver, the last few months were pretty difficult. Telling the kids he didn't want any more treatment. Planning a quick wedding as my daughter and husband were determined he would walk her down the aisle. He did, but that was really about it. A couple of weeks later he broke his arm, as the cancer had moved into his bones.

 

He wanted to be in our mountain home, and we were able to make it happen with the help of great friends and family, but it was not easy. I still go there, but it is so different now, even though his mark is everywhere.

 

We always meant to name it "The next stop is Heaven". How little did we know.

 

[Guest littlebirdie]

Gallbladder cancer. Eight months from diagnosis to death. It was fast and brutal and so hard to watch.

[Meema]

Pancreatic cancer, the neuroendocrin type. He was stage 4 when diagnosed, there was a football sized tumor in there that was starting to invade his stomach and there were numerous tumors in his liver. We had just over 2 years from diagnosis to his death--2 years to obsess and research and try almost every conventional and alternative treatment possible, none of which did any good. The surgery might have given him an extra year, but he suffered miserably for most of that year. He was probably sick for the whole 7 years we were married and we just didn't know it.

[AaronP]

Appendix cancer.  Health issues started in early 2010, official diagnosis in September of 2010 after a ridiculous number of tests and hospital trips.  The longer it took to diagnose the worse I knew it was going to be, it's like they were crossing off all the more treatable ailments first.  We were completely devastated as the oncologist said she'd be lucky to live 5 years if treatments went well.

 

DW responded well to chemo which enabled further treatment.  Positive news.

 

Major surgery (oft termed "the mother of all surgeries") June of 2011 - cytoreductive surgery with hyperthermic intraperitoneal chemotherapy.  Was informed by doc he felt he got everything.  She had a ileostomy bag as a result of this surgery.  Months of recovery but fairly positive news.

 

Went back a few months later to attempt reversal of the bag only to find cancer had returned, very quickly!  Devastating news.  I had a horrible feeling the whole time waiting for the procedure to be done, the doc called me in to his office well before it should have been complete.  I knew before he said anything. 

Back to chemo in an attempt to kill cancer cells again.  This is when I knew I'd be losing my wife, best friend and mother to my girls well before her time.  They would never perform that surgery again as they removed too much the first time.  It was about quality of life and making the most of the time we had left.  no matter what I never let her know what I knew - I could tell by doctors reactions how bad this really was. 

 

She responded well to chemo again but they can only do so many rounds.  We were willing to do everything, we did do everything we could.  Hell I had to discover the surgical option myself as our initial oncologist said there was no surgical option!  A lie, they just didn't perform it in BC.  We had to go out of province but there was an option.

 

DW always fought, and we never gave up hope for a miracle.  She was incredibly resilient and strong.  In May of 2013 she went into the hospital for dehydration (commonplace for us with her bag and chemo) and this time never came out.  This was incredibly hard, having to slowly break the news to our girls that mommy wasn't coming home this time.  That we were going to lose her!  Even harder was that she would continually tell the girls that she would be home soon, despite her rapidly worsening condition.

 

I know everything we did extended her time with us and ours with her.  For this I am forever grateful.  We lost the battle in August of 2013.

[Virgo]

Acute Lymphoblastic Leukemia (ALL), he was diagnosed in October 11, 2013 and died February 4, 2014. His first round of aggressive chemo was successful. All of his tests were coming up cancer free. We were so hopeful. Then they scheduled him for monthly treatments. His first treatment went well. When we went back for the second treatment they told us that his cancer was back and worse then before. He went in for his second round of aggressive chemo in January and never left the hospital. He celebrated his 39th birthday at the cancer center and died one week after. His cause of death was ischemic bowel, cancer, chemo.

 

He was in extreme pain the day he died. It started at 1am, he had a CT at 11am (finally!), by 4pm I was begging the doctors and nurses to manage his pain. They brought in a pain pump, and he was finally resting comfortably and fell asleep. He never woke up. Our last words were "I love you" and "I love you too." He went into cardiac arrest just 3 hours after they gave him the pain pump. We made the decision to take him off life assisting machines at 6am because he wasn't showing any signs of improvement. I still wonder if the pain pump was set incorrectly. I question all of the doctors treating him that day in the ICU, and  then his oncologist a few weeks after his death.

[JeanGenie]

Stage IV colon cancer. Diagnosed in December 2009.  Chemo every 2 weeks until he passed in April 2013.  Guess we had it "good" though.  He worked full-time throughout, we took vacations/trips, he played golf the afternoon of his treatments.  He had minor side effects (hair loss, minor neuropathy, fatigue) until the last month when we had to go to the ER and emergency colostomy.  He always said once they operated, that would be the beginning of the end and he was unfortunately right.  Although I miss him every single day and I hate that we are not able to grow old together (he was 60), I know the time since his diagnosis are our most memorable years and such a gift that I will always cherish.  Cancer sucks though...

[SimiRed]

Cancer Wid here. Neuroendocrine, rare and no one really knew how to  treat it.  He did 3 different types of chemo, and many other treatments.  Awful.  @Meema, My husband was sick before he was diagnosed too, they gave him nexium and said it was acid reflux.

 

My late husband was diagnosed at 36, when our son was just three years old.  It took us ten years to even get pregnant , then this stupid diagnosis was devastating!

 

He survived six years.  Like @robunknown, I felt like I would fit in the Extreme Caregiving, but didn't know what "extreme" meant to others.  I had no family around, so I did everything myself, along with taking care of a toddler.  Yea, the last months were hell on Earth.  Horrific, Hard, heartbreaking...you name it.  I had him home on hospice for 3 weeks before he passed.  I still cry when I think about this.

 

In and out of the hospital numerous times, had his gallbladder removed, one kidney removed, then we were convinced to have a pain pump put in   I should have never have let them do that.  They could never control the medication, he couldn't walk...it was making his legs numb. 

 

Doctors knew, they knew... I was told in the beginning "it's manageable", right, false hope.  I stood by his bedside when they had to put a pic (His port got infected and had to be removed) in his arm to give him fluids, and platelets, he screamed in pain.  Only to be told that after 4 blood transfusions his count still wasn't coming up. 

 

Morphine at the end, hallucinations, screaming someone was cutting his legs off   Asking me if I was there to take away the pain, cause he couldn't remember who I was sometimes.  I laid on the couch next to the Hospice bed at home.  I took care of him 24/7, I was exhausted, but somehow managed. 

 

I miss him, I was by his side when he passed...I am thankful for that last moment cause I needed that to survive.  He told me to tell our son that he loves him more than 1000 pancakes and he'd love me forever and ever and ever...and then his last breath. 

 

I brushed his hair and changed his clothes before they came to get him, gave him the paper fish my son made.  I tucked it under his "keeshond" (our dog) tshirt so when he got cremated he'd have it with him   I watched them zip him up in the bag and walked him to the van...I went as far as I could...I promised I would, it was as far as I could go.

 

We were suppose to have our "Someday"  Someday, we'll retire, Someday we'll go to Alaska, Someday we'll grow old and sit on the front porch.

 

Cancer stole my "Someday"...

[Trying]

Tim had neuroendocrine cancer in his intestines that was diagnosed at stage IV,

He was gone within 4 months of diagnosis and inbetween was 3 Hospital stays, an illiostomy and 2 different types of chemo. I was an extreme caregiver for a very short period of time so I can't really imagine how difficult it was for those who did it for years.  5 years earlier my Dad was diagnosed with Pancreatic cancer and gone in 3 months. Neither of them had a chance to work on a Bucket List because they were so sick from day 1.

[lovedroses]

Esophageal cancer - he went in for a routine scope as it was suspected he had an ulcer.  Diagnosed in March, gone n October.  He did radiation and chemo simultaneously, then surgery in July when his esophagus and entire stomach were both removed as the mass was centered where the two meet up.  The surgeon thought he got it all, but before DH recovered enough to start the second round of chemo.....things went badly very quickly.

 

We tried to keep him at home as he wanted, but the hospice nurses, DH and I realized we simply couldn't (gastric pump issues, which he thought was funny as by then he didn't have anything gastric) so the last week was at the hospice.  I was with him at the end, it's the only time I ever lied to him when I told him it was okay to go. 

 

 

[jeff1973]

Cancer Widower here too,

Glio blastoma multiforme,, GBM and 2.5 yrs. later Leukemia,,AML... About a year before diagnosis Pam threw up a couple of times with no idea why and was having vision problems.. Fri. at work she became nausious and was seeing grey stars, Pam never worked again..Aug 30-2010 they removed a marble size tumor by her left ear about an inch inside the skull..Did chemo and radiation until Christmas 2010..

I retired April 2011 to care for her, we knew she would not live long but was hoping for a miracle..June 2011 her brain was speckled with cancer so we used Avastin which for a year and a half cleared it up and gave us hope. 8 months after stopping the Avastin, March 2013 brain cancer came back and leukemia showed up.. We had an excellent match for doing a Bone Marrow Transplant but Pam had turned acute so 7 days before our 35th we had to call it good and just enjoy life the best we could.....3 months later Pam would be gone.

We bought our farm Sept.18-1995, 18 years later the farm is paid for and Sept.18-2013 will be the last full day that Pam will live.. She picked out her casket and funeral arangments and made a big dish of chicken divone on her last full day. We knew the end was near but thought we had a few weeks left. We didn't know..11:28am the next morning I was with her in the E.R. as she took her last breath..Pam was 58,, she took care of the previous housewife of our farm that died from brain cancer and leukemia at 56.. Wives are too precious and I will tear down that house before I sell the place.. I'm not going to gamble with the life of wife #3.

I very much count my blessings in that I never had to watch my wife deteriorate and be in severe pain as many of the other caretakers experianced.. Pam made it into the 3% that live longer than 3 yrs. after diagnosing a GBM..

 

Too many loved ones die of cancer, I hate it,,,Jeff1973

 

 

[DrBanner]

Multiple Myeloma. I had never heard of it before. A cancer in the bone marrow. She died of a massive stroke about 4 months after she was diagnosed.

[klc]

Breast Cancer, two go?rounds, 5 1/2 years out now.

[BrokenHeart2]

Lung cancer. 13 months he was gone. Details are hard to talk about.

Life is not fucking fair as we all know.

[DrMommy]

My husband was misdiagnosed with Stage 4 Non-Hodgkin's Lymphoma at the age of 35. He survived that and was in remission for 13 years. He then suddenly became septic and was eventually diagnosed with a rare blood disorder that was that to be dormant and triggered by the intensive chemo treatment he had received 13 years prior. He was dead within weeks of the diagnosis.

[stormywx]

Colon cancer.. I was his only caregiver. He lived for 2 years after the diagnosis. It was just the two of us when he died in June 2013. I died with him.

[CBB]

Colon Cancer. My husband Chuck Died on May 10, 2013. It all began rather innocently enough. That day he went to work at his usual time. It was about mid October. We would talk or text often but that morning I didn't get a reply. I thought "how strange". A few hours later he walks back thru the front door . I took one look at him and he was gray colored and was complaining he didn't feel well. So I threw on my shoes and out the door to the ER. We live in a rather rural area and the hospital is small but when you are in a pinch , it was the best option. We go thru all the formalities and the doctor examines him and says "well I think you just have some indigestion". My response is ooooooooookay..He is handed a script for Prilosec and sent home.

 

After the weekend, my husband returned back to work. He still didn't feel 100% but he never missed a days work so he soldiered on.. Halloween came and went. He had bouts of just overall fatigue and then starting having bleeding. I took him back in to the docs and this time we were told it was impacted bowels and written a script for stool softeners an sent home with an enema..

 

About a week or so later he started complaining of lower stomach pains again and wasn't keeping food down. This coming from a man that was always a good eater! I took him back to the doctors and said we are not leaving here till you figure this out! Something is very , very wrong! The doctor again assured me that it was the same thing, nothing different! He did have an x ray there and we were told he was just backed up. At this point I am really pissed off and quickly dismissed by these damn doctors who think they know everything..

 

Thanksgiving. We went to the Outlaws and tried to enjoy it but on the way home he asked me to stop the car. He got out and emptied everything he had eaten.. By this point, he wasn't even keeping water down. We went back to the ER and this time he said he was constipated and again sent us home with an enema..(I would so love to use those up on some certain arrogant doctors).

 

At this point, I had gotten online and was researching anything I could find to see if I could figure this out. Everything I looked at was telling me what I didn't want to know, but deep down I knew already. I made one more appointment with our primary and this time I said I want him to get a scan and we need to concentrate on his bowel area. Something is wrong! The doctor orders a scan but we can't get in until Jan. 18th.

 

My poor husband was miserable for those three weeks. Sleepless nights and pain so severe he barely slept at all. He continued to work right up until the 18th. We go for the scan. We check into the hospital and we receive this order from our primary doc. It tells all his information and in the diagnosis box it reads. Possible Colon Cancer with metastases. I think time just stood still in that moment. Our doctor never even mentioned his suspicion to us. We get the scan and are told to follow up with our primary.

 

I get a call from the doctors that afternoon and we are told to come into the office immediately. We go in and are then told he has 9 feet of impacted bowel and that it is colon cancer. We are immediately sent to a specialist in the same day . We are told he is critically ill and will need surgery immediately to save his life today. If it burst he is likely to die. This doctor was brutally honest and told my husband when he was asked "how long do I have doc?" He said at the most 10 months. I felt like someone had punched me in the guts and remember the room just got so small. My husband , being the eternal optimist said: "I am gonna beat it!" We go home and pack , check into the hospital and surgery is performed. (colonoscopy).

 

Surgery went as well as could be expected. He was still struggling to keep foods down but they gave him anti nausea meds and it helped a little and after 8 days we go home. Second phase of the nightmare begins. I became my husbands full time care taker at that point. He couldn't change his bag or even stand to look at his body. I helped him bath, ran for meds and took care of everything at that point. Next course of action was to put in a port for the chemo but he needed to heal up from the surgery first before we could. March 1. Placement of Port. First round of chemo March 10th.

 

He didn't tolerate the chemo at all. It caused him to get very weak and still couldn't eat or keep it down. Dehydration. We were back in for intravenous fluids within days. His pain was increasing rapidly and his weight was plummeting. He was 6 foot and usually weighed between 180 and 190 but now he was down about 40 pounds. We kept trying to get his pain and everything else under control.. Second round of chemo. Worse than the first. The pain was unbearable and in one day I had made 5 trips to the cancer center for pain meds to get it under 

control. He would lay on the floor on an air mattress and just moan in pain.. I thought I would lose my mind! I looked like Sally fields in steel magnolias at the cancer center and refused to leave until I got something that was going to kill his pain! I was taking no prisoners either! At this point we were told the cancer had spread to his liver and lungs and bone and brain.

 

The next month was spent trying to regulate everything and nothing was working.. Finally after much trial and error we thought we were seeing some light , the pain was a little more manageable but we talked and he didn't want to go thru another round of chemo. I had to let him make that decision and personally I know he made the right choice. He never did fully bounce back from the two rounds. We got 4 weeks of managing pain and him being able to tell me all the things he wanted to say and we planned for his death. He got all his affairs in order that he could remember.(there were some he didn't ) and he got to spend quality time with his parents and his brothers and children. His Birthday was on May 3rd. I had a small party for him. Family came and we tried to enjoy it as best we could. He was really weak and tired and very frail. He was about 100 pounds at this point. Just a horrible thing to watch the person you love go thru. I wouldn't wish this on my worst enemy.

 

The last week he fluctuated between semi consciousness. I would change him and bath him.. and every night lay next to him with my arm on his chest so I could tell if he was having trouble breathing. The last thing we got to say each other was "I love you". The last day was so hard. I knew it wasn't long and told the family to come by to say their goodbyes. They all did. Late that night ..I got up for something to drink . It was 1:18 in the morning. I had only left the room for a moment and when I walked back in he was gone.

 

I stayed with him right up till the very last moment . I helped get him ready for the funeral home, watched them zip him up , and walked him out. Some things you just never will forget. Till death do you part. I had his memorial on our 4th wedding anniversary May 18, 2013. That day is still a blur to me.

 

It was 3 and half months from the diagnosis till he passed away. It feels like it was someone else's life at times to me. I didn't think I would survive this long without him. I thought also this would be the worst thing I would ever have to go thru in my life. I was wrong again. I lost my son this past Oct.14 to suicide. At 28 years old. I am coming up on 5 months , 22 months since I lost my husband. The past two years have been the worst ever. Some days it is brutal. I am struggling to make sense of it all. Some days all I can do is lay in bed and want to disappear.

 

Sorry I got so winded in this post. I hadn't been posting a lot on the boards. I had been reading and lurking in the background. Finally, today I felt the need to just share with everyone and maybe this will give me some healing in my heart. God knows I sure could use it . Thanks for listening.

 

Cyndi

 

[Mancino]

Renal Cell Cancer wid here.  I knew that my husband had a history of kidney cancer; he'd lost one kidney when he was a toddler and then half of the other one as a young adult.  We met each other later in life (me in my 40s, he in his 50s) and he had been cancer free for over 20 years.  We both kinda assumed cancer might eventually get him later on, but we thought we had more time that what we got.    He was diagnosed just 3 months after we married after a doctor's appointment for back pain that turned out to be stage 4 RCC that had metastasized to his spine.  The doctor gave him 6 months; he made it 18. 

 

For a long time, I made myself crazy with the thoughts of 'we should have done this' or 'we could have gone there'.  His last 6 months involved a lot of extreme caregiving and I know I did the best that I could with hand that we were dealt.  Watching helplessly as he deteriorated and fought through the pain is something I still have trouble getting past.  He could be stubborn and pigheaded at times (probably part of what kept him going so long), but also had a heart of gold and would give the shirt off his back to anyone who needed help and it was heartbreaking to see such an active guy waste away to nothing. 

 

I find it a little ironic that although he had renal cell cancer, that half a kidney he lived on most of his adult life was still functioning up until the end.  It was the RCC cells that had spread to his spine and other areas that finally killed him. 

 

As we can all attest, life can be very unfair at times and I have to keep reminding myself of the phrase my hubby always used -- it is what it is.  Sigh!

[allan]

Pcns lymphoma,9 months from diagnosis my Katie technically beat the cancer but due to treatment had a bleed on the lung and passed away due to septicemia and pneumonia on August 7 2013.

[SimiRed]

CBB, HUGS!!!! 

 

Everyone here, virtual hugs!  Cancer is a horrible thing, watching a loved one struggle so much, endure so much, and still have that smile for us cause they know we need it.  My late husband is the one who was strong, he was a fighter as I know the rest of the cancer spouses were. 

 

Words seem inadequate to express the sadness, only the knowledge of the experiences that others have had too.  Just makes me sad to see so many.

 

To all of you, my heartfelt condolences. I should feel comfort that my late husband is no longer suffering, no longer looking for that "cure", no longer being poked with needles, filled with medicine and riddled with pain.

 

{{{HUGS}}}

[rifatheroffour]

Hi everyone,

 

I'm wondering how many other cancer wids there are out there?  I know that there are many of us, and that we all have a unique experience, but I just wanted to get a feel as to how many there are.

 

I don't belong...

 

...sometimes I don't know where I belong either.

 

In 2005 my wife was diagnosed with non-specific interstitial lung disease which later became airway centric interstitial fibrosis.  She was treated on and off with prednisone for years until it began to no longer be effective.  In June of 2012 she was put on 24hr oxygen.  In November we were in Boston for what was supposed to be a routine lung function test with her specialist.  We ended up staying in the hospital for a week being worked up for a lung transplant.  We went back home with a few more tests to be done, everything so far was looking good.  The week before Thanksgiving she had to have a mammogram as part of the transplant workup.  They found three small spots on her right breast, three days later we were told they were cancer.  Early stage and treatable through surgery only.  We decided to wait till after Christmas for surgery, it was high risk due to her lung issues.  We were supposed to leave for Boston on Sunday for early Monday morning Dr. appointments to plan for the mastectomy. She died in her sleep Saturday night.

 

I say I don't know where I belong because while I'm sure it wasn't the cancer that killer her directly it was the cancer that kept her off the lung transplant list that she surely would have been near the top of the list for based on her age and condition.

[Blue14]

What we thought was a groin pull turned out to be Stage 4 kidney cancer with metastasis to his bones. The eight months it took to kill him were one shitshow after another, the saddest being losing the ability to walk almost a year to day he finished hiking the Inca Trail. He fought like hell and remained his kind, decent, hilarious and optimistic self through it all. He was the best person I ever knew. It'll be five months on Saturday.