Tag Archive for: pancreatic cancer patient

Family Member Profile: Alison Greenhill

Family-Member Profile
Alison Greenhill
Pancreatic Cancer

It’s been little more than a year since Alison Greenhill lost her husband Richard to pancreatic cancer. Richard was 47 at the time of his death and the couple had been married for 18 years. They had a tortoiseshell cat named Nibbles. Richard was a Registered Nurse and Alison worked for and continues to work for a major airline. Despite a history of Crohn’s disease, Richard was a generally healthy guy so when he started complaining of stomach pains in September 2016 he was referred to a gastroenterologist.

The couple had just returned home from a cruise and Richard’s stomach pains were severe enough to send him to the hospital, but all the test results done by the gastroenterologist were negative. The doctors didn’t know what was causing the pain, but it continued through December when Richard was diagnosed with chronic pancreatitis as a possible result of Crohn’s disease. Crohn’s is an inflammatory bowel disease that can cause abdominal pain and lead to a host of other issues so the diagnosis made sense.

But, in January Richard was back in the hospital with jaundice and he received a couple of stents to relieve bile duct blockage. He also had a number of tests done including an MRI and several lab and blood tests, but there still seemed to be no definitive answer as to what was causing Richard to be so sick. Alison recalls being frustrated that they still didn’t have more answers and says she felt like things were moving at a snail’s pace. Richard, she says, thought his symptoms indicated cancer, but on his birthday, also in January, they were told that Richard did not have cancer. “When they said it wasn’t cancer, it was his birthday,” says Alison. “We couldn’t have gotten better news.”

Ten days later Richard started vomiting and was back in the hospital with a blood infection. Alison says he recovered from the infection, but that it had almost killed him and that doctors were still saying they weren’t sure what was wrong. Finally, at the end of February Richard got referred to the Mayo clinic. Alison says they got there on a Thursday and by Friday evening the oncology department had been added to Richard’s daily report. Richard had stage four, pancreatic cancer that had metastasized. “It was the worst possible diagnosis with the worst possible cancer,” says Alison. “We were just numb.”

The Mayo Clinic oncologist suggested Richard start chemotherapy and referred him to a local oncologist who took over his case. Two weeks later, in March, he started chemo. During chemo, Alison says his numbers were going down, but Richard had a bowel blockage, another bout of jaundice, and an infection that interrupted his chemo. They learned that the tumor was covering his pancreas and he had another tumor on his liver. By the end of June he was in Hospice care. Richard remained positive through it all, says Alison. “My husband was like a rock. I don’t know how he did it,” she says adding that Richard made peace with his diagnosis. “We decided we were going to handle things the best we could.”

After his death, Alison says she had a lot of ups and downs and a lot of anger, but that, through Hospice, she got a grief counselor who helped her through each step of her grief. “She was wonderful from the beginning,” says Alison who focuses on remaining positive rather than letting herself get caught up in questioning why they were told Richard didn’t have cancer and why his cancer wasn’t found sooner. “I wish we would have known more. We didn’t know what we were working with,” says Alison, but she knows they did the best they could at the time. “I can’t keep going backward,” she says. “I would never be able to move forward.”

Along with the grief counselor and exercise, which she says helps her to stay positive and outgoing, Alison says she learned to accept help from others. “You have to let people do things for you. As time went on I realized I can’t do this by myself,” she says. Alison received a lot of help from her parents and had a strong support group. “Lean on your family. Let people help you,” she advises. Although it’s been difficult reaching each milestone or holiday throughout the year she says, “I’m better than I was a year ago.”

Now, Alison says it is important to her that others might benefit from what she and Richard went through. “I pray every day that no one else has to go through this,” she says. Richard also hoped his story might help others. “He said that he hoped one day we could help someone else,” she says. “He said people can learn from this.”

Alison wants people to hear her story and know they aren’t alone, but more importantly she wants people to do whatever it takes to get answers.“You’ve really got to speak up for the patient,” emphasizes Alison. “If you don’t have the answers and the doctors don’t give you the answers, don’t take no for an answer. Take it to the next level.” Alison says that patients and caregivers shouldn’t be afraid to ask questions and to push for more information. She says, “Keep fighting for your person.”

Real Stories of Pancreatic Cancer

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.

Patient 1: Female (Canada)

This is my first entry. A friend directed me to a related site today, and somehow I ended up here. I was given the pancreatic cancer verdict the end of last year – after months of testing and being told ‘whatever it is, it isn’t cancer’. Ha! So much for the – it isn’t cancer theory. I was referred to a world class surgeon in Toronto early this year who was able to do a Whipple procedure, removing about a third of my pancreas.

Initially he thought he got it all. However subsequent scans revealed the original cancer had metastasized into the liver. So then it was off for chemo. What a nightmare. Again, an excellent oncologist at an excellent facility. I was put on the 5-FU regime (how appropriate is that name!) from May-Nov. Twelve treatments in total. Nearly killed me. I don’t think I have ever felt as ill as I did during the 2 weeks between treatments. Just began to feel normal when it was time to begin all over again. But, by the end of the year my tumors had reduced considerably, and my oncologist considered me his poster girl. We all knew the reality of pancreatic cancer.

However, by the end of February the party was over. The tumors were back. So another hit of 5-FU. This time the drug concoction plus the accompanying steroids, triggered bleeding abdominal ulcers. It was decided to discontinue 5-FU. I am now receiving Gemcitabine, a less aggressive treatment. I feel I’ve been given a reprieve chemo-wise, but only time will tell if this will work for me or not.

I would be very interested to hear from anyone with pancreatic cancer. I am blessed with a wonderfully supportive husband, family and friends. Life is good. But I hate this disease with a passion. Acceptance of it is not in my vocabulary.

 

Patient 2: Female (USA)

Just found this site and today is my first entry. I was diagnosed the end of June with inoperable pan can. I went through an experimental drug trial for Tnferade in the fall. It was absolutely brutal….and did nothing as far as we know. My tumor has remained basically “stable” since my diagnosis, with my current treatment of gemzar every other week. The gemzar really knocks me down for a few days, but being as I’m still “stable”, I guess it’s worth it. Early September of this year I spent two weeks in ICU, as all of my treatments/drugs created a 5cm duodenal ulcer……Had no idea I had it until it began to bleed profusely…..10 pints of blood later, I’m still here. Back to work now, but only three days a week. Absolutely dreading the winter, having lost 50lbs since this started I don’t have an ounce of fat for insulation!

Feeling so much better since the ulcer was taken care of! I believe it has been a undetected problem for quite some time, but how would you know….I mean was I having a lot of abdominal pain…yes….but I have pan can so how do you differentiate? Best of all I am sleeping better. Prior to the episode, I was usually only able to sleep two hours or so at time! Now my sleep is nearly “normal. I had plans to go to Vegas with my family in October for a family wedding….but of course was side lined by the hospitalization. Was able to rebook my husband’s ticket and mine for the first week of December and am excited at feeling well enough to have a good time…..and have some nice weather, if only for a weekend!!! Of all the compromises this illness has forced upon me, not being able to tolerate traveling much has really been one of the worst things since I got sick. Prior to getting sick I travelled the world extensively. I have plans to celebrate my 50th birthday this March in London…and soooooo hope I will still be well enough to do it!

Hello friends! Still here!!! Have gained back 25-30 lbs. and doing much better! Been off chemo for eight weeks now. The last round has damaged my nerves in my hands and feet. The doctors say they have exhausted all established tx options for me. This is not necessarily bad news, as the reason is more people in my shoes…don’t get this far. My last scan showed my liver mets are nearly imperceptible and the once very large head tumor itself shows a “residual”! They don’t have any idea what this means in the long run, and consider me a “lucky” anomaly. I am far from the person I was physically, before this started…but certainly grateful to still be here. I hope someone reads this post who has been recently diagnosed with inoperable pan can……I know that the odds are so very poor for most of us….but PLEASE believe there are cases like mine out there…..It isn’t always a 3-6 window. When I was diagnosed, I never expected to be here this long…26 months and counting. Not that I was being a defeatist or negative…..It’s just as a healthcare professional myself, I understood the grave reality of my situation. That said….we all MUST remember….ever case IS different and the best advice I can give is to always stay positive!!! Since I the first of the year I have begun to try to resume my life’s passion….regular travels. I have been to London twice, one in March to celebrate my 50th with friends from around the globe, and last month for a music symposium my husband was invited to attend. I plan on getting back to London in a month or two, and to Vegas in September!!! Anyways…thanks for reading…and stay positive!!! XOX

Patient 2: Female Caregiver of Male patient (USA)

Just little background… My husband, 54, was diagnosed with Stage IV Pancreatic Cancer last Sept. We went to have the Whipple procedure and found the cancer had spread to his abdominal cavity. He just completed his 10th round of Folfirinox. The treatment side effects have been continuing to get worse…. he sleeps most of the day and when he is awake he is in pain. His weight has gone from 220 to 150 in the last year and with his appetite gone it continues to go down. We have been holding on to the hope that once he completed 12 rounds of Folfirinox they would do another CT Scan and God willing the spots on his abdominal wall would be gone.

We thought he would then be a candidate for the Whipple. He has a tumor in the head and tail of his pancreas. Today we were told that wouldn’t be happening…. while I understand the reasoning (the lengthy recuperation period, the added weight loss and the overwhelming odds that the cancer would come back anyway) I am heartbroken. I had convinced myself that we were going to beat this. I never let myself think we couldn’t. I’m supposed to grow old with this man, our “golden” years…. we raised three beautiful children together, watched the oldest get married, watched them graduate and go their own ways…. it was supposed to be “our” turn. Our kids are 25, 26 & 30.

Today we had to tell them that time is limited. All I can hope for realistically is another wonderful five years… I really hope I get another 5 years.