Tuesday, 11 June 2013

A message from Debbie's family

Hello, this is Siobhan (Debbie's daughter) writing on behalf of myself and my brothers, Richard and Kieran. By now, most of you will have heard the sad news of her passing.

My mum died on Sunday morning at St. Luke's Hospice in Plymouth. It was sudden and unexpected although in hindsight I think my mum knew it was coming. On the Saturday she was very tired and confused: during the later parts of the afternoon she woke up now and again and would ask me about things she'd imagined, I would reassure her and she would happily go back to sleep. At one point she took my face in her hands, gave me the biggest and most beautiful smile and said, "I love you". It is a memory I will treasure for the rest of my life. I know that even though she was confused and didn't really understand what was going on by that time, in that brief moment she was my mum as I always knew her. She knew what was going to happen.

My partner and I left her sleeping, not wanting to wake her up to say goodbye. The next morning as I was preparing to go back I got the call telling me that she had passed away. I miss her terribly and yet I feel glad that she did things her way and was strong right to the end. Where other people may linger in this world, gradually fading away, mum left quickly during a time when I wasn't around. Of course, as her daughter and her carer, I wanted to be there when it happened but she wouldn't have any of that. She had to be in control and she was determined not to put me through that. She had never liked allowing me to take care of her: as my mum, she felt it was her place to look after me. It was only begrudgingly that she would allow me to take over her responsibilities but when I did, she never hesitated to let me know how much she appreciated it.

I am grateful to the staff at St. Luke's for ensuring that my mum was allowed to die with dignity in a way that was appropriate for her. She was surrounded by the most gentle, caring and compassionate people who I felt genuinely liked her and wanted the best for her. Mum had always been terrified that she would die the way she had seen her dad die. I am so glad that did not happen. So glad she did not have to go back to the hospital she hated.

I think this will be the last entry on this blog. It was her space, not mine. I will be keeping it up indefinitely to preserve her memories and so that people may learn from her journey but I cannot step into her shoes. At a later date, I may go back and categorise things for easier reference but this is something I need to think on in my own time.

Finally, and this is not aimed at any one person in particular, I would like to ask everyone to please remember that although Debbie was a very vocal campaigner for asbestos awareness and loved by many people, she was first and foremost our mum. We have difficult decisions to make and we need to be given the time and space to come to terms with our loss.

Although we know that everybody means well, we are being bombarded with messages, calls and questions, many of which are not related to the painful issues we are trying to cope with right now. We are finding this overwhelming and I know that if she were here my mum would want to protect us and ask you to please, please respect our boundaries. It would hurt her greatly to know that her children were suffering because of the work she did and the name she made for herself.

Please do not assume that you know what my mum would have wanted, however close you may have felt you were. You are perfectly entitled and encouraged to grieve in your own way but please do not force this onto others, especially ourselves.

If you would like to do anything outside of your own personal 'space', we respectfully ask that you request our (myself, Richard and Kieran) permission first and if you feel like it is not important enough to bother us with at this time, then it must surely not be important enough that you must do it right away. We may very well have our own plans for many things and we would be saddened to have them taken away from us before we have even registered her passing.

If any of us need help, we will ask for it. When we have made arrangements for mum's service, you will be informed. We do not wish to speak to any media. Again, I want to stress that this is not aimed at anyone in particular and I hope it doesn't offend.

Thank you to everyone who supported our mum during her life. She appreciated your friendship and cared deeply about you all. I think she would like me to tell you to continue your fights and live your lives to the full.

With love,

Siobhan, Richard and Kieran

Tuesday, 4 June 2013

Janelle Bedel - Wonder Woman

Thursday is “Wonder Woman Day” in Rushville
Janelle Bedel continues to battle Mesothelioma

Melissa A. Conrad
Rushville Republican

RUSHVILLE — Monday evening, Rushville resident Janelle Bedel was honored by Mayor Mike Pavey and members of the Rushville City Council with a proclamation and recognition medallion in recognition of her valiant fight against Mesothelioma. Thursday will be “Wonder Woman Day” in her honor.

Members of the City Council arriving to honor Bedel included president Bob Bridges and members Brad Berkemeier, Brian Sheehan and Brian Conner. Janelle’s father, Bennie Cameron, her husband, Andrew and son, Carson were by her side for the presentation.

Rushville’s Wonder Woman (Janelle Bedel) will be honored Thursday, June 6, at Hardee’s in Rushville. Hardee’s is donating 20 percent of their food sales from 5 to 8 p.m. and is allowing a table to be set up to take orders for Wonder Woman T-shirts.

The public is encouraged to join in Bedel’s fight by supporting this effort Thursday.

While Hardee’s is donationg 20 percent of their receipts Thursday, Janelle has no intention of keeping the money.

“She’s donating 100 percent of what’s raised at Hardee’s to Asbestos Disease Awareness (AsbestosDiseaseAwareness.org),” Janelle’s brother Bennie Cameron II said Tuesday afternoon. “She doesn’t want the money for herself, she’s giving it to ADAO.”

ADAO was founded in 2004 to give asbestos victims and concerned citizens a united voice, to raise public awareness about the dangers of asbestos exposure and to work towards a global asbestos ban.

The Proclamation

The proclamation from the city documents Bedel’s brave fight and reads:

WHEREAS, Mesothelioma is a rare and aggressive cancer. The only known cause is from asbestos exposure. Mesothelioma is a cancer of the smooth lining of the chest, lungs, (pleura), heart (pericardium), or abdomen (peritoneum.)

WHEREAS, Janelle Bedel aka “Wonder Woman” is fighting for her life because of a terrible form of cancer called Mesothelioma. Janelle has been a true warrior fighting this lethal disease for years, longer than anyone thought she could, beating so many odds.

WHEREAS, In 2007 Janelle’s diagnosis Pleural mesothelioma at the age of 31.

WHEREAS, three rounds of chemotherapy, Altima and Cisplatin Thoracentesis, the removal of pleural fluid through a long needle is usually performed for diagnostic purposes. Along with (VATS) video assisted thoracoscopy surgery to insert talcum powder that will circulate the liner and eliminate space for fluid. (EPP) extrapleural pneumonesctomy surgery to remove a diseased lung, part of the pericardium (membrane covering the heart.) Thirty rounds of radiation.

2011 diagnosis Peritoneal Mesothelioma Cytoreductive surgery coupled with intraperitoneal chemotherapy. Restrictive lung disease respiratory disease that restricts lung expansion.

2012 chronic hypercarbic respiratory failure with cerebral edema.

Five year Mesothelioma cancer survivor

WHEREAS, Janelle Bedell has been a true warrior fighting this lethal disease, longer than anyone thought she could, beating so many odds.

She has travelled the country, as health permitted, to gain awareness and rally support to ban asbestos, the most common cause of her type of cancer – Mesothelioma.

WHEREAS, Janelle Badel has brought an entire community together because she is so loved. Hundreds upon hundreds of Facebook users have changed their profile photos to “Wonder Woman” to show our love and support for Janelle and to bring even more awareness to her battle.

NOW, THEREFORE, I, Michael P. Pavey, Mayor for the City of Rushville, Indiana, do hereby declare this day (Thursday, June 6): JANELLE BEDEL “WONDER WOMAN” DAY in the City of Rushville and urge everyone to say a prayer for Janelle and all stand together as a community to lift Janelle up in prayer which she so deserves.

IN TESTIMONY WHEREOF, I have hereunto set my hand and caused to be affixed the great seal of the City of Rushville, at the Mayor’s Office, this 5th day of June, 2013. Mayor Michael P. Pavey.

Janelle’s Journey

Janelle was diagnosed with stage 2 Mesothelioma in 2007 and her long battle has been chronicled in the pages of the Rushville Republican and in the hearts of the community of Rushville. How Janelle contracted this form of cancer is a mystery. It is commonly due to being exposed to materials containing asbestos.

At the time of her diagnosis and as reported in the Rushville Republican, Janelle had just been promoted to the IT department at MainSource Bank, something she had been looking forward to and loved. With a change in her work hours, she began to notice a shortness of breath in the mornings.

“I just chalked it up to anxiety about my new position,” Janelle said at the time. “It was March when it started, and they had been talking about how high the pollen count was on the news and how people had experienced shortness of breath due to that, so I thought it could have been that too.”

The shortness of breath continued for the next couple of weeks, and it got to the point where Janelle could barely vacuum the house without feeling like she had just run the New York Marathon. At the time, she was a smoker, so she quit out of concern for her health. Then, she had an asthma attack, despite the fact that she had never been diagnosed with asthma. So, she went to the doctor.

“He checked me out and thought it was bronchitis,” she said. “So he gave me a prescription and sent me home.”

She was exhausted, feeling like she had the flu, and was totally drained. She took the five-day prescription that her doctor had given her, but her symptoms just got worse.

“I went back, and the doctor ordered a chest X-ray,” she said.

What it revealed was shocking, even to her physician. The X-ray showed a plural effusion on the left side of her body.

“He called me and said, ‘You’re not going to believe what’s causing this,’” Janelle recalled. “I remember him telling me how abnormal it was for someone my age to have this.”

Plural effusion is an accumulation of fluid between the parietal pleura (the pleura covering the chest wall and diaphragm) and the visceral pleura (the pleura covering the lungs). Both of these membranes are covered with mesothelial cells which, under normal conditions, produce a small amount of fluid that acts as a lubricant between the chest wall and the lung. Any excess fluid is absorbed by blood and lymph vessels, maintaining a balance. When too much fluid forms, the result is an effusion.

The effusion was drained the next day in Greensburg by way of a needle between her ribs in her back. It was uncomfortable, but she had been numbed before the procedure. As she watched the fluid drain, almost two liters, she almost passed out.

Life continued as normal. Jannelle was sent home, went back to work, and was scheduled for a CAT scan the day after her procedure. This is a common practice to make sure that the drainage worked properly.

Her lung was half-full again the next day.

This time, the doctor noticed a mass in her chest on the CAT scan screen. He didn’t know if it was related to the plural effusion, but he wasn’t taking any chances. ...

April 13, 2007, Janelle Bedel headed to Columbus to a lung specialist after her family doctor noticed a mass in her chest on a CAT scan.

The lung specialist went over Janelle’s x-rays and previous CAT scans. The fluid drained from her lungs was tested for abnormalities, as well as her bloodwork. Both revealed normality. Janelle was relieved, but her physicians were still perplexed. What would cause a seemingly healthy 31-year-old woman to develop a disease most commonly found in 65-year-old men?

Her next step was to visit a surgeon in Indianapolis at the Indiana University Medical Center on the Campus of IUPUI. Dr. Kessler saw Janelle April 18, 2007, for a consultation to check her lung, do another round of x-rays and more tests. She had another round of thorentesis (i.e., fluid drained from her lungs), which unloaded another two liters of fluid from her chest cavity. The fluid was sent out for testing, which again revealed nothing abnormal.

Dr. Kessler ordered a scan to be done immediately after Janelle’s fluid was drained from her lungs, which would enable him to get a more accurate picture of the mass in her chest.

“The doctor saw the mass right away, but also noticed that my lymph nodes were enlarged in my left breast,” Bedel said. “He sent me for a mammogram immediately.”

While Janelle traveled back to Rush County, her imaging was sent away for a closer look by the doctor. In the meantime, the liner in her lungs was thickening. Her doctor ordered a needle biopsy at the end of April, as well as a CAT scan. This required Janelle to lay still for two hours. While her back was numb, doctors took 14 biopsies while she was awake. Making the procedure even more difficult, she had to be able to hold her breath during the procedure.

A week later, Janelle was delivered a startling blow while at work. Her doctor called with the results of the biopsies.

“He said, this is never 100 percent accurate, but tests are showing that you have Mesothelioma,” Janelle recalled.

Her lung was also full of fluid again.

She remembered sitting at her desk for a moment in shock, because she had a vague idea that Mesothelioma meant cancer, but she didn’t realize all that it entailed. When researching plural effusion and the certain type of mass that she had, the term repeatedly resurfaced, planting the seed in her brain. All symptoms listed were concurrent with her own. She asked her family doctor, who told her not to believe everything she read. Janelle was holding out that he was right, but it was not to be.

In a daze, she walked over to her sister-in-law’s desk, who also worked at MainSource with her.

“I handed her the piece of paper with ‘that word’ on it,” Janelle said, struggling to hold onto her composure. “I said, ‘Is that what I think it is? Is that cancer?’”

It is at this point that Janelle, who has been extremely strong throughout the entire interview with reporter Elizabeth Gist at the time, loses composure at the memory of that phone call and the sudden realization of what had been invading her body.

The doctor scheduled surgery. The game plan was to strip cells, but instead, lesions were found all over her left lung and left rib. Doctors put talc powder between the chest cavity and lung liners and multiple biopsies were sent to pathology. Two chest tubes with heavy silk sutures were inserted to drain the fluid; this time, over three liters.

“It was like having a baby,” Janelle recalled. “I had to be on morphine and Vicodin all day because of the pain. The doctors pushed on my spine and nerve, tapped my lung and I had some nerve damage.”

She spent two days in the ICU and in recovery for four nights. Doctors loaded her up with a whopping eight prescriptions (16 pills total) per day as well as vitamins and folic acid to prepare her for chemotherapy.

May 30, 2007, Janelle Bedel met with Dr. Nasser Hanna and a surgeon at the Indiana University Medical Center. Hanna would be performing her chemotherapy, which was required for the next phase in the fight of Janelle’s life.

After some thorough research and recommendations, Janelle decided on the Memorial Sloan-Kettering Cancer Center in New York City. In order to be treated most effectively by Rusch, Bedel must undergo two rounds of chemotherapy with a PET scan before and after the treatments. So, June 13, 2007, Janelle was taxied to Indianapolis by her sister-in-law to begin chemo, round one.

She writes, “June 14, 2007: Chemo wasn’t too hard, but I felt awful afterwards and very tired and weird. I went to bed at 7 p.m., which made me sad to miss Carson’s swimming lessons which are at the Rushville pool from 7:30 to 8 p.m. He is doing so well. I love to see the smile on his face and how happy he is out there in the water!

“I did get up and get sick through the night, and that was hard! It also makes it worse because when I get sick it hurts my surgery area, I am glad I took two more weeks to heal before starting because it would have been a lot worse! I got sick twice this morning, finally drug myself out of bed and my dad picked up my son. Carson was crying to stay with me, but I need the rest, and Andrew will pick him up in a few hours so he will be fine. I love Carson so much. I hope I can spend a lot more time with him. My husband of course is also great, but there is truly no stronger love than that between a mother and her son.”

The community of Rushville also began to support Janelle beginning with the Janelle’s Journey Poker Run the summer of 2007 and other activities. Some as simple as home cooked meals prepared for her family’s table. The random acts of kindness and community support were an eye-opener for Janelle. The community showed up in force to support her with approximately 250 bikes arriving for the Poker Run.

“The good deeds and the things I have seen people make and donate for my benefit made me realize some of the things I want to give back when it is my turn, or how I will make a difference in others’ lives the way they have in mine so far,” she said.

“I was really tired that day, but so excited,” Bedel said. “I’ve looked forward to this for so long, and I was thrilled with the outcome. I was happy with the thought of maybe 120 bikes showing up. I would have been happy with five bikes showing up. But it was really a testament to this community, the amount of help and support that flooded in.”

Janelle was also able to fulfill a yearly routine during that time in 2007 which was to take her then 4-year-old son Carson to the fair.

“I took him Monday, Tuesday and Friday and definitely overdid it, which put me in bed all day Wednesday and Thursday,” she said of the 2007 Rush County Fair. “But it was worth the exhaustion and nausea just to get to see him smile and have a blast.”

It was time for New York and the treatment available there. She would be seen by one of the best doctors specializing in her form of cancer at one of the top cancer hospitals in the world. There she would have surgery and begin aggressive treatment to get rid of the cancer that invaded her body just a few short months ago.

She was not prepared, however, for the bad news that Dr. Valerie Rusch was about to bluntly deliver.

“Dr. Rusch was hesitant on the success the surgery would be for me,” Janelle said.

After reading all of Janelle’s test results, coupled with the reality of her pain level, Dr. Rusch was almost positive that Janelle’s tumor had grown along her chest wall. If that were the case, he said, he would be unable to remove it and advancement would be too far ahead for surgery or any other treatment to catch up with.

“She was unable to give us any hope,” Janelle said. “However, she said surgery was the only option left, so at least she would get in there and see. She said that I should know by other doctors’ conversations with me that this is a very hard cancer to beat, and to hope for the best but be prepared for the worst.”

After that initial meeting with Dr. Rusch, Janelle headed back to her hotel. She wasn’t prepared for the fact that there would be a chance the tumor couldn’t be removed at all.

“I thought that once I was in New York I was going to hear nothing but good news,” she said.

That night, like many others, Janelle prayed that she could stay here on earth with her family and that she wasn’t ready to go yet. She prayed that God would help guide the surgery team’s hands and remove the tumor.

The night before surgery, Janelle’s family came to New York. Her father, step mother and siblings came to spend time with her and to be there with her through the surgery.

The morning of surgery, Janelle warned her husband Andrew she needed blunt honesty.

“I told Andrew he had to tell me as soon as he walked in my room whether or not Dr. Rusch was able to remove the tumor,” she said. “He really didn’t want that job. He asked me if he could lie, because he wouldn’t be able to tell me she couldn’t and that this was it.”

Andrew was outfitted with an alarm that he carried with him so that when the doctor was ready to speak to him he knew where to go. The surgery was estimated to last approximately three hours.

“Andrew said it buzzed a lot earlier than he thought it would, so he was immediately nervous that the surgery was not successful,” Janelle said.

Dr. Rusch looked at Andrew and related the news.

“She looked at him and said that she was able to remove all of the tumor, and then she smiled,” Janelle said. “He was so happy he cried. The rest of my family thought it was bad news based on that reaction.”

Dr. Rusch also removed a rib bone, as part of the extrapleural pneumonectomy, because when they go in to remove the lung and lymph nodes part of the diaphragm must be removed as well.

“When Andrew walked in smiling, I did a thumbs up and he said ‘yes,’” she said. “I was extremely happy and knew I could get through anything at that point.”

Community support has continued with other fundraisers including proceeds from a whiffle ball tournament and donations from area businesses and numerous individuals.

In November 2007, Bedel’s feet finally touched Rush County soil for the first time in three months.

Bedel had been in New York on the campus of Sloan-Kettering Memorial Hospital in Manhattan, one of the country’s best for fighting cancer.

“The radiation was a lot harder than I thought it would be,” Bedel said. “Maybe it was because I had just had the surgery and was dealing with the pain and the long incision that goes from my shoulder blade down to the front side of my ribs.”

At her first follow-up appointment with Dr. Valerie Rusch, the surgeon specializing in Mesothelioma who treated Janelle, everything seemed to be in order. However, Dr. Rusch did reveal some frightening information to Janelle.

“I did find out that I was in phase III Mesothelioma when she removed my lung,” Bedel said. “I thought of how lucky I was that Dr. Wagner (my family doctor in Indiana) had been so quick on getting me in to see all the right doctors and make all the phone calls to plan out my trip to see Dr. Rusch.”

Dr. Rusch’s orders were for Janelle to walk a mile a day to strengthen her right lung, not a difficult task in New York City.

Janelle met with Dr. Rosensway later that week. Rosensway would be Janelle’s radiation physician at Sloan-Kettering.

Janelle’s treatment was five days a week for six weeks.“Laying flat on the table was a challenge for my incision,” she said. “Treatment lasted about 15 to 20 minutes a day. The doctor said that normally nausea and exhaustion come around week three and worsen through week six. I did the opposite. I was sick from day one. The first two weeks I vomited every day and felt so nauseous. I didn’t think I would make it to week six, especially after they said it would get worse as I went, and laying on my incision was painful.”

On top of the physical aftermath of the radiation therapy, Janelle also had to deal with missing her son.

“I got really depressed and was missing my son, who was back home in Indiana,’ she said. “By week three, my step mom brought my son up to visit for a week, and things took a turn for the better. I was on three nausea pills by then, but seeing Carson was what made me happy and I started feeling good.”

Janelle also leaned on her husband heavily for support.

“My husband stayed with me the whole time,” Janelle said. “He has dealt with this cancer as much as I have. I was lucky that he stayed with me. I couldn’t have done it by myself.”

After a week of reuniting with her family, Carson had to return back to Indiana.

“I said to myself, ‘This is it, I’m halfway done,’” she said. “I knew I had to be stronger to get through the rest of the treatments and get back home to my family.”


After enduring all of the previous trials and tribulations previously outlined, Janelle enjoyed something of a respite from the cancer she fought so hard to beat; unfortunately, it looks as though her time is running out.

Her brother, Bennie, explained that the cancer “never really left. She had been doing things to extend her life through surgeries, chemo, radiation. She has decided on hospice because the meso has gotten to her diaphragm and now she can’t do anymore to extend her life. Now she is just wanting her work to live on.”

Rushville and Rush County, as they so often do, are rallying around one of their own.

The Wonder Woman symbol, which has come to represent Janelle’s battle, can be found all over Facebook and other social media sites and the story has been picked up by television stations out of Indianapolis.

Meanwhile, Wonder Woman’s focus is on raising public awareness and working to ban asbestos in the time she has left.

New look blog

Siobhan has been updating the blog with a new look. Sorry for any inconvenience and I hope you like it.
Also I am adding my day in pictures. I have had a lovely day, lots of friends. Warriors Mandy, Heather who lost her brother, Martin,to mesothelioma, flowers from Emma, she lost her Dad, Ron, To mesothelioma.
My sister Wendy, my niece Rochelle and great niece Lacey. My work friend Rachel, Matt her BF and Kal and Zac her little boys. My friend Ann who lost her sister, Beverly, to mesothelioma. I went to Ann's house for a coffee and took the oxygen tank only to find it was empty. I managed to talk and stay at Ann's with her husband, Jack, for about 3/4 hour. Well done me, I have proved I can go without the oxygen.

Emma's flowers and card

Heather's flowers

Wendy and Rochelle's flowers

Above - Avis's drinks and manicure and Rachel and Matt's Toiletries - below.

Carolyn's flowers (Yesterday)

Wendy, Myself and Rochelle x x

Wendy and I

Wendy and I

 Rochelle and I

 Rochelle and I

Rachel, Kal and Zac with me.

Sunday, 2 June 2013

2 good days in a row.

I have had two days of improvement now, I am so pleased I have turned a corner. I am listening to Billy Idol while writing my blog. My friend Chrissy came over today an did a wonderful foot and hand massage, I has made me feel so relaxed. She is going to stay here tomorrow night and we will have a pamper night. My breathing is still poor but each day seems to be improve. I did manage to do a small walk without oxygen today. The staff here are wonderful. This is a beautiful place, I can see why so many people say that St lukes hospice is so wonderful. It isn't just treatment, it is the psychological elements that are dealt with too. I have been chatting to the staff when I need to. They are all amazing. I am looking forward to having an evening with Chrissy tomorrow, her sleeping here will be wonderful. Siobhan will come in too. She is a wonderful girl. she has decided to do the moonlight walk to raise money for St Lukes. Ann and Bill came over. They are so supportive, always here for me. I am so lucky to be blessed with all these amazing people in my life. Jayne dropped off some clothes, she has a cold so didn't come in. Other friends will be in tomorrow and Tuesday. Siobhan is getting the respite she deserves and so am I. Kieran is will his dad as we all needed a break.

 Chrissy looking out to sea.

Me yesterday

Plymouth Hoe from my room.

View from my room

My room

Lovely sculpture in the garden

White feather in my room.

Siobhan is doing the Moonlight walk in Plymouth to raise money fro St Lukes Hospice. She has raised £230 so far to this very good cause.
Anyone wanting to sponsor her can do so through the link below. Even £1 is a bonus. Thank you in anticipation of your support.


My lovely girl and I, I am so very proud of her and what she is doing x x