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
x

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.”


Currently

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.

http://www.mystlukes.org.uk/tinrobo


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



Friday, 31 May 2013

St Luke's hospice today

Yesterday was a lovely day, the sun was shining and I had friends who came to visit. Linda and heather are good friends. They came over and we chatted in the garden over a coffee. 
Linda came over late morning. She had just lost her lovely cat, so sad as they are such a part of the family. It was lovely to see her. 
Heather came over in the afternoon, she was laden with goodies, home baking at its  best, I managed a piece of her lemon drizzle cake.
I had done a lot yesterday, for out about.  My breathing is still difficult but is improving every day.
I didn't have a very good night, I need to sleep and it isn't happening.

Last night was the same, I didn't sleep well. I feel so shattered today. Siobhan's friend took me into st Luke's, I met my friends Ali and Ann here. Jayne came in a little later. 
Was lovely to hear a nurse who is looking after me talk about my dad as she had nursed him. I feel he is close by now. 
Going to close now as I am tired but I will update when I can. Thank you for all your support x x x

Thursday, 30 May 2013

Getting support.

I have been busy today with phone calls, sorting out the car as Livi's hand brake is slack.
RAC will come out to the house and do that.

I took a sleeping tablet last night and it affected my breathing so that was a bit frightening.

I have been in touch with St Lukes, our local hospice and will be going in tomorrow at 11:00am.
It is for System management. My head is a mess as I feel terrified that if I fall aslppe I won't wake up as I don't feel I am confident and in control of my breathing.
The cats will have to be dealt with as when I do get to sleep, Storkie boy decides that 5 am is the right time for breakfast. He gets close up to my face and at the moment I can't cope with that.

I am getting oxygen in the house, something else that will help my psychological state.

Short and sweet today.

Tuesday, 28 May 2013

Update

I had a visit from my friend Ann today, She came over, at my request, to be here when my GP turned up as I had rang to have a home visit today.
He arrived and was quite certain that all my issues were with Mesothelioma. I asked about having antibiotics IV as the hospital have aid he would need to refer me and that the GP could access all the services to support me.
I tried to explain that I was under no illusion about my illness and I can live with mesothelioma. He was very blunt, telling me the worst, I was heartbroken. I don't feel ill, I am trying my best to eat, I stayed in bed all day today at Siobhan's request. I am doing the nebulisor 3 - 4 times a day. I have had productive muck 4 times today, all green in it. That is telling me that the chest infection is still ongoing. He wasn't happy about me having IV antibiotics. He seemed surprised about what the hospital has said yesterday.

When the GP had left, Ann and I burst into tears, I kept saying over and over again, this can't be it. I feel well in myself, my weight is good. A chest infection is a tough thing to get over for anyone. The two need to be separated, deal with the chest infection, if it is Theo kicking up, that has to be a separate issue. Last night at the hospital I was asked about an asthma attack and if I had had one before, I never have. I have 4 respiratory problems going on, no one should assume any one thing is making all the problems.
After the GP had left, the nurse from the local hospice came over. I am not end of life yet, I need support with my breathing. I am hoping to get into the hospice for some symptom management. The hospice are so very helpful and when she had left i felt so much better.

Onwards and upwards, I have done well today with my diet, 3 biscuits, 2 complan drinks and water while trying not to aspirate. I hope I can prove my GP wrong. I want to walk into his surgery and show him it isn't over yet!!!!!

What a nightmare.

I haven't updated for a few days,it has been so hard to get the energy to do very much. My breathing is the worst it has ever been. I feel very let down by the system at the moment. I went into hospital again last night only to be sent home and told my GP needs to put things in place. I have him coming out for a home visit today and will get something in place. Siobhan is doing everything, she is in great demand, my arms,my legs, my support. I am totally reliant on her.
I have a chest infection thats needs conquering now, it would help if someome would listen to me, I have been saying this since February.I need a voice, I am doing it all amd am so tired, I need someone fighting my corner.
I have got a nebulisor at home now but it doesn't seem to be enough. I have been told I need to request oxygen at home. I will have to ask about that as well.


Thank you my warrior friends for the lovely flowers I got today. They have brightened up my day.


Friday, 24 May 2013

Massive catchup

I have had such a time of it lately, I have been too tired to write the blog. i am going to try and catch up now.
I have been struggling with breathing for a few weeks now and not seemingly getting on any further.
I am tired although the pain has gone, I have more of an ache in the top right of my back, like a finger being pushed in and staying there.
I have been nebulising for the past few days which has helped a lot but not much further ahead.
Siobhan has been my legs, my arms and everything else round the house. I don't know what I would do with out her to be honest. I have had great support from my friends, Mandy took me out for a little break on Monday which I thoroughly enjoyed and will go out again next week.
I am out with Chrissy on Sunday and now have a wheel chair until Tuesday. Jayne has been wonderful also, offering up her soup and bread and a meal at hers. I couldn't go to hers this week as I can't manage the steps.
I woke up this morning, had a cough, whoopee.... how thrilled was I to see a lovely shade of yellow with my mucus this morning (apologies for being graphic) To top that, it is a bank holiday weekend so I will have to ring the Drs.
I had a home visit with my Dr, she was wonderful, happy to give me a script for more antibiotics.
My lovely legs, siobhan, came with me to pick them up.
All sorted for the weekend.

Good luck to Kieran who is doing his Relay for life walk. He does this every year in Cornwall.
Such a quick blog, have a lovely weekend everyone, thanks for all your good wishes : )




This morning outside my house : )

Thursday, 23 May 2013

My dream

My dream.

I typical isn't it, I go off to sleep beautifully on 22nd may at 10:30 pm.

I am tired so drift off quickly.

At last, a good nights sleep in my bed.

Next thing I know I am asleep and I am laying here, my left lung has such a sharp pain in it.

I can hear rumbling, the pain is bad in my left side.

I can see a thorn like thing coming out of it.

I am panting, I can't breath, I need the nebuliser.

I start to tell myself there is pain and I am so out of breath when then I realise something. (I am still dreaming at this stage and can still hear this rumbling noise)

Someone is messing with me, I keep telling myself this over and over again. I am saying the f word though just to make it more real. I was angry and repeating it over and over again, someone is f ing with me.

I have the pain, the breathlessness, the thorn like thing, the rumbling.

As I start coming out of my dream, I tell myself that my pain is in my right lung and not my left. The rumbling is still going on and I am coming out of the sleep even more now.

It's 1 o'clock in the morning and my neighbour has decided this is the right time to put their wheelie bins out for collection.

The thorn like thing is a feather like spike , I was talking about the film the black swan with my friend earlier in the day.

I woke up completely, still feeling like I was out of breath.

I told myself to stop it as the pain would be in my right lung. I did and the pain went, no pain, no spike But still the rumblings from my wonderful neighbours.

Thanks guys. Now I am awake. I am not out of breath atall. There is no pain in my left lung, none in my right for that matter, wide awake and writing this. I could do with a coffee but don't want to venture down stairs as all is good with the breathing. I have to try and get back to sleep ...... Bummer : (

Wednesday, 22 May 2013

Graham



Lisa with her dad, Graham. x x x x


It is with sadness that I heard of the loss of another courageous warrior.
I met and became friends with Graham's daughter, Lisa, through facebook for a while now and have followed Graham's journey.
My heart goes out the the family as they start the next chapter with out him.
We have become a family ourselves with the meso warriors always there for each other and I hope Lisa, Jeanette and all the family can gain comfort in the fact that we are there for you all when you need it. It is one of the hardest things to do in life, letting go is so painful. He will always be with you, watching and holding your hand when you need it.
Sending you all love and strength at this very painful time x x x








Another bad night

I am so tired this morning. I took such a long time to get to sleep, my mind just can't switch off. I am so worried about going to sleep and not being able to breathe. I am terrified I won't wake up. My confidence has been knocked so hard. I can't get over the issue of not being in control of ,y breath, I want to know that I am improving but that isn't what i a hearing from my family and friends.
I went to st Luke's palliative care yesterday, I have stopped taking the tanpantadol,as I felt trapped inside myself if you can understand what I am saying , maybe going cold turkey on it didn't do me any good. This feeling could be symptoms of coming off the drugs too quickly.
I don't like sleeping in my bed for some reason and laying down brings on more fears.  I am so paranoid, maybe paranoia Ian a side affect too. I wish it would go.
I was told by dr Mary that I could start chemo. I need to speak to dr D but I think this will help with my. Confidence as I will feel that here is something inside me bashing theo and putting him back in his place.
I am so disappointed that the chest infection wasn't dealt with in the first place and was left so long. I have been let down by the system and left with all this to deal with as well as my mesothelioma. I have to get through it. I don't feel this is my time over, I don't want it to be.

Monday, 20 May 2013

Oh what a night.

UI was all twitchy last night, feeling so trap inside my body because of the opioids I am taking. One tablet 100 mg in the morning and 100 mg in the evening with a top up of 50 mg of Tanpentadol  (Palexia) if I need it. I googled the side affects and, again, it is a respiratory depressant. I don't want my breathing compromised anymore, I have been doing breathing exercises and trying my best to get mobile. I feel like I am blocked in but I have now found the key to get out, I hope.

Last night I decided not to take the top up. The pain had started and I was looking for a hot water bottle. I went onto facebook and said I needed a hot water bottle. One of my warrior sisters in Australia suggested getting a plastic drink bottle and filling it with hot water......  EUREKA....... of course!!
I looked in the kitchen and found a conditioner bottle. I washed it out and filled it with hot water, it worked, the pain went and I haven't needed a back up tablet. I am not going to take the 100 mg tablet this morning. I am very twitchy though, my fingers shake and sometimes I can't control them and amhitting buttons on the computer for no reason. Not good, I hope it stops.
Pain started again so a filled my bottle again, with the heat, the pain went. I am feeling it is working, only time will tell.
Thank you so much Vickie in Australia for your suggestion. I have had pain relief from heat so I know what I will be doing from now on.



Saturday, 18 May 2013

Feeling much better.

The weather in Plymouth is beautiful, it is like a Summers day. The sun makes me feel so much happier, Kieran has gone to his dad's, he has been very helpful while I was in hospital and while I have been so ill. He does his own lunch and gets himself off to school. Siobhan has been helpful too, we went to the shops this afternoon, this was my first time out since getting out of hospital. My breathing is still low, I am hoping it will pick up a little more each day.

I am going to have a YAY for the DAY.

This is a phrase Barry, a warrior friend from Australia used to say everyday. He had gained his wings a few years ago. He had a YAY every day. I am still in touch with Lyn, his wife.


So my YAY is a big thank you to everyone who is supporting me. I have had the most frightening experience of my life. Not being able to breath is terrifying and I am now trying hard not to panic when I do go out. I have lost a lot of confidence with this. I look at the stairs like they are the biggest challenge in the world. I went to the local shop with Siobhan, we went in the car, wonderful to get back in Livi, and we went onto to the supermarket. I took a slow walk around the store while using the trolley for support, we managed to find one that worked. We walked around slowly, well done me : )
I was so proud of myself. Poor Siobhan had to listen to my steroid head rant on. I natter away when I am on steroids, I am a natural natterer anyway so this is even worse.


This is the lovely blue sky outside my house today and here is the proof. My friends up North have grey clouds and rain. This weather has been really strange, never the same everywhere.
Snow last week on Dartmoor, rain, hail and now sun. I hope it continues and spreads itself all over the country : )
I am having a drastic moment. I am changing my hair, when I start the chemo it will come out anyway so I thought I would colour it again and get a short haircut later when I speak to my hairdresser and TOF friend, Jacqui..

I have Pilar cysts coming up on my scalp so am going to look like a Furby who has been splashed with water .... bumps all over my head.   : )
They will have to be cut out at some point, something else to deal with but very minor compared to what is going on at the moment.

I hope everyone has a lovely day tomorrow, I hope the sun shines for you x x

Thursday, 16 May 2013

2,000th post.

Well 2,000 posts on my blog and I am going to dedicate to my wonderful children.

Thank you so much Siobhan and David for looking after me, I really don't know what I would do with out you. I promise to be a good mum and rest all weekend, no challenges, I love you and Kieran so much and am so lucky to have you in my life. Richard isn't here but I know he is thinking about me, love you too Rich. I feel like the wealthiest person in the world and must have done a good job having such wonderful people around me. 

How many 16 year olds make their own lunch, get them selves off to school on their own, make their own meal and don't complain about going to the shop and are so helpful to everyone in the house. There are some around, Kieran is one of these, thank you so much Kieran. You are a star. Well done, be proud of yourself.

You all have so much to be proud of, Kieran has had a tough time and is coping well with everything. 

2,000 posts and what a way to celebrate. Thank you so much all of you.



At home.

I am home at last, breathing isn't great but better than it was. I have a mountain of tablets to take, pain killers, antibiotics, anti sickness. 
Siobhan, Kieran and Siobhan's boyfriend, David, have been wonderful, so helpful. 
I did push myself today to get motivated, really wanted to walk out of the hospital fighting fit. It was never going to happen so I have to rest and listen to my body.
I have had so many lovely messages of support, cards, flowers, so many people wishing me well. Thank you everyone of you. A couple of emails, from Robert in Kent and from Irene in Scotland, So sorry I haven't replied much. I will get back to you. 
I know you will both understand, I need to get myself up and at them again, 

 

Flowers from warriors and ADAO (Asbestos disease Awareness Organisation) Thank you so much.





Windmilll from Rachel and Photo taken by Rebecca with a card. Such a talented photographer. Thank you so much girls x x

Wednesday, 15 May 2013

Lovely day yesterday.

I have had some lovely visitors come and see me over the last few days. Rachel and Rebecca came in, Rachel gave me a little windmill, it is so sweet and Rebecca and photo she had taken of a damsel fly. It was beautiful, she is such a talented photographer. Siobhan had been in, she is a sweetheart, I forgot my pills and she brought them in for me. My friend Tina who brought me in on Monday. Thank you all of you x x I hope I haven't forgotten anyone, if I have, I do apologise.

Yesterday was a cyber visiting day, I was skyping, Skype is a phone call on the computer, Mavis in the UK, Linda, Suzanne and Ann in the USA and dear Lou in Australia who couldn't do it due to bad weather. We missed her. We all chatted and had a coffee together. It was wonderful, while we were chatting flowers arrived and chocolates from them, what a surprise, thank you so much, what a lovely thought x
To top it all, Siobhan arrived, it was a wonderful morning.

I am feeling much better, my breathing is better, I feel I have more capacity. Getting on top of the chest infection has been the thing today and as that as gone I find the pain has gone too. So, it wasn't the meso causing the pain, it was the muck.
I am walking a lot further than before but can't get the fear of not being able to breathe out of my head, climbing stairs is terrifying me at the moment. The phycological side of cancer can be worse than having it at times. I think I ned to talk to someone about it.

I want to say a big THANK YOU to all those people who are supporting me, the blog helps me a lot with dealing with this illness. There are those that will try and tear you down but they just make me stronger, fuel my fire. Thank you again to those lovely people, family, friends, warriors and my children for helping me get through this. This chapter has been a hard one.
I am in for my procedure today to close off the TOF, I hope I can go home tomorrow and talk about starting chemo again. Once that is out of the way, I want to get back to work.
It would be so nice to have a normal life : )

Tuesday, 14 May 2013

Back in hospital.

I came back in hospital yesterday, I have my dilatation on Wednesday. This is a procedure to widen the oesophagus because mine has decided to not allow me to eat solids. This is a normal occurrence for a lot of people with TOF ( tracheo- oesophageal fistula).
I hope that Wednesday I can close the fistula for good as it causes me a lot of problems with chest infections and choking.

I had Oxynorm last night for the pain as I had run out of my usual tablets and it was too late to request anymore. I had a horrid nightmare, al my family were zombies and we were on Plymouth hoe in the moonlight. I wasn't sure if I was one or not. I did know one thing though, that I felt stunning in my floaty nighty, we all looked good : )

It's 3-30 am so I thought I w,old update. I am still a little shaky as the dream was scary, I will get back to sleep soon. In the mean time, I am looking forward to getting tomorrow out of the way and to improve my breathing so I can go home, that is my biggest worry.

Thank you to all the people who have sent lovely messages of support, each and every word stokes my fire to win this battle. You all inspire me, so glad I have so many wonderful people in my life, I am so lucky x x x

Saturday, 11 May 2013

Back home.

I was admitted to hospital on Thursday by my GP. My oncologist suggested it was the right thing to do as my breathing was difficult and the TOF was playing up, I am choking on solid foods.
I am all booked to have a dilatation on Wednesday. A dilatation means the oesophagus will be stretched to it's normal size so I can eat solid foods again. The consultant is also going to try and close the TOF. I hope it works.
I am trying to get my breathing back up, I think it has improved but it is difficult to tell.
I came home today, managing to walk from the ward to the main entrance, considering I had a wheel chair to the ward on Thursday, I think that is a bog improvement. I still need to take it easy.

I have come home and will go back in on Monday. Kieran is back home after his time away, he has enjoyed himself.
Siobhan has been busy making me soup and keeping me under control : )
I have visits from my lovely friends, thank you for taking the time to come in.
Not much more to tell.


Thursday, 9 May 2013

Nearly at 2,000 posts.

I am hoping that when I get to my 2,000 th post I will be in a better state than I have been.
It has been a struggle since February to get my chest infection sorted out. I feel so let down by Dr's and medical staff who saw no urgency at all in treating my chest infection. I am now at a point where I hope I can recover.
At the moment everything is a challenge, going upstairs, walking around the house, trying to do a little bit of house work. Not only is it frustrating, it is frightening. Breathing determines wether I live or die, it is one of the most important things we do as human beings.
In February I was having reactions to antibiotics, I have since found out I am allergic to penicillin. The only way I got any antibiotics was to be so ill that I had to be taken into hospital. No one would prescribe them.
I now have some that are, hopefully, going to do the job.

I am thinking of our little wonder woman in america as well, Janelle is having such a rotten time at the moment. Our mesothelioma community is wishing her well and hoping she will be home soon and she gets better very quickly. I don't think anyone appreciates how scary this all is until it happens to them.
Get well soon Janelle honey, we all want you home and healthy as soon as possible x x


I went out last night, just to my friend Jayne's house for something to eat. I met Chrissy and Cheryl there too who looked after me well. I managed jacket potato, I took things slow as I don't want to be back in hospital again with aspiration pneumonia.
I managed to get down all the steps at her house, Siobhan was very worried about me. I hope I assured her I would be alright. Going up the steps was a different matter. I did one flight at a time and did them very slowly, there are 3 flights at Jayne's.
Jayne did offer to carry me up the steps but I think doing it myself was more of a challenge and it will keep me moving.

I am supposed to be checking out the college that Kieran wants to go to today, that is not going to happen, I won't be able to walk very far so will have to cancel it.
I will have a day at home, home made soup for lunch I think made by Siobhan, can't get much better than that. I am drinking lots of Complan too.

I had some lovely things in the post yesterday, I am so proud of our Mesothelioma community on Facebook, we all look out for each other.


Thank you Mary for this lovely little note book. It is beautiful x x


Thank you also to my friend, Rachel, for this lovely card.


...And thank you so much as well to Shelby who sent this lovely pendant. People are so very kind and generous, Shelby lost her husband to mesothelioma, she makes lovely pictures and asks others to pray for those who are going through a difficult time. She has turned a very miserable negative into a wonderful positive. Thank you Shelby for all you do for others. It is appreciated I can assure you x x x

Wednesday, 8 May 2013

Information about Aspiration Pneumonia.


Aspiration pneumonia is inflammation of the lungs and airways to the lungs (bronchial tubes) from breathing in foreign material.
Aspiration pneumonia occurs when foreign materials (usually food, liquids, vomit, or fluids from the mouth) are breathed into the lungs or airways leading to the lungs.
This may lead to:
  • A collection of pus in the lungs (lung abscess)
  • Swelling and inflammation in the lung
  • A lung infection (pneumonia)

Causes

Risk factors for aspiration or breathing in of foreign material into the lungs are:
  • Being less alert due to medicines, illness, or other reasons
  • Coma
  • Disorders of the esophagus, the tube that moves food from the mouth to the stomach (esophageal stricturegastroesophageal reflux)
  • Drinking large amounts of alcohol
  • Medicine to put you into a deep sleep for surgery (general anesthesia)
  • Old age
  • Poor gag reflex in people who are not alert (unconscious or semi-conscious) after a stroke or brain injury
  • Problems with swallowing
Acidic material that is breathed into the lungs can cause severe lung injury. However, it may not necessarily lead to pneumonia.

Symptoms

Other symptoms that can occur with this disease:

Exams and Tests

A physical examination may reveal:
  • Crackling sounds in the lungs
  • Decreased oxygen
  • Rapid pulse (heart rate)
The following tests may also help diagnose this condition:

Treatment

Some people may need to be hospitalized. Treatment depends on the severity of the pneumonia. You may receive antibiotics, which treat bacteria. Some people may get special antibiotics to treat bacteria that live in the mouth.
The type of bacteria that caused the pneumonia depends on:
  • Your health
  • Where you live (at home or in a long-term nursing facility, for example)
  • Whether you've recently been hospitalized
  • Recent antibiotic use
You may need to have your swallowing function tested. Patients who have trouble swallowing may need to use other feeding methods to reduce the risk of aspiration.

Outlook (Prognosis)

The outcome depends on:
  • The severity of the pneumonia
  • The type of bacteria causing the pneumonia
  • How much of the lungs are involved
If acute respiratory failure develops, the patient may have a long-term illness or die.
Many people who have aspiration pneumonia have other serious health problems, which may affect the outlook for recovery.

Possible Complications

When to Contact a Medical Professional

Call your health care provider, go to the emergency room, or call the local emergency number (such as 911) if you have:
  • Chest pain
  • Chills
  • Fever
  • Shortness of breath
  • Wheezing

Prevention

  • Avoid behaviors that may lead to aspiration, such as excessive alcohol use
  • Become aware of the risk of aspiration

Alternative Names

Anaerobic pneumonia; Aspiration of vomitus; Necrotizing pneumonia; Aspiration pneumonitis

References

Donowitz GR. Acute pneumonia. In: Mandell GL, Bennett JE, Dolin R, eds. Principles and Practice of Infectious Diseases. 7th ed. Philadelphia, Pa: Elsevier Churchill Livingstone; 2009:chap 64.
Torres A, Menéndez R, Wunderink R. Pyogenic bacterial pneumonia and lung abscess. In: Mason RJ, Broaddus VC, Martin TR, et a. Murray & Nadel's Textbook of Respiratory Medicine. 5th ed. Philadelphia, Pa: Saunders Elsevier; 2010:chap 32.

Update Date: 2/19/2011

Updated by: Linda J. Vorvick, MD, Medical Director, MEDEX Northwest Division of Physician Assistant Studies, University of Washington, School of Medicine; and Denis Hadjiliadis, MD, Assistant Professor of Medicine, Division of Pulmonary, Allergy and Critical Care, University of Pennsylvania, Philadelphia, PA. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
A.D.A.M Quality Logo
A.D.A.M., Inc. is accredited by URAC, also known as the American Accreditation HealthCare Commission (www.urac.org). URAC's accreditation program is an independent audit to verify that A.D.A.M. follows rigorous standards of quality and accountability. A.D.A.M. is among the first to achieve this important distinction for online health information and services. Learn more about A.D.A.M.'s editorial policyeditorial process and privacy policy. A.D.A.M. is also a founding member of Hi-Ethics and subscribes to the principles of the Health on the Net Foundation (www.hon.ch).
The information provided herein should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Links to other sites are provided for information only -- they do not constitute endorsements of those other sites. Copyright 1997-2013, A.D.A.M., Inc. Duplication for commercial use must be authorized in writing by ADAM Health Solutions.

Thank you so much Mavis for finding this, it explains it very well for those who don't know what it is all about.