tess
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Hi Gavin, that’s great news about your Dad, how wonderful to hear. You’ll have to keep encouraging your parents to find some humor and peace in the new transition, and get them out there to enjoy the summer weather…. it’s not going to be easy! Thanks for the update and for sharing the wonderful news.
-Tess
Hi Sarah, we’re thinking about you and John! My Dad also experienced those same random fevers for a peroid, and the majority of the time they broke on their own- just like John. We did find that he was more succeptible to infection during that peroid and on one occasion ended up with one in his blood, which took lots of antibiotics to remove. You can always call another doctor for his/her professional opinion on your concerns.
Keep us posted!
Tess
I’m so sorry Swarty, losing a Dad is like losing a chunk of our own hearts, and it leaves a big empty hole in our lives. You’re not alone. It’s hard to know what to do next, it’s just one day at a time – especially when the grief is deep. You’re right, it’s a scary ride. I lost my own Dad to cc in March, so I do understand your loss. My coping mechanism is to just keep talking to Dad like he was still here, and holding on to the hope that I’ll see him again.
Sending many hugs to you, for strength and peace in your heart.
Tess
Hi Barbara, what a frustrating road block for you! A couple months back when I was speaking with an insurance specialist about payments for ‘alternative’ procedure, she indicated that each hospital works differently when it comes to working with insurance providers. A doctor can put together a letter of necessity, arguing for why a patient should receive a certain service, substantiating the necessity for the procedure. This can be performed as an appeal if the patient is initially denied. Alternatively, there may be other close proximity hospitals whereby the treatment may be covered. Just a thought….
You’re in out thoughts Barbara!
Tess
ljg, you make me cry and at the same time you are an inspiration and comfort. Love and prayer are the transfer of energy, no matter the direction you send it. I’m sure your Mom feels that. Through all the many ‘little things’ you do in honor of your Mom, she feels your love & loves you back!
Hugs to you ljg,
TessHi Pam, thanks for sharing your story. You’re Mom was certainly communicating with you through the flowers and the cloud breaks! I’m sure she’ll continue to find ways to do so! My grief hit much like yours, when the thankfullness for the peaceful death started to give way to the fact my Dad was gone. He passed just a couple weeks before your Mom, and the grief is still there so strong some days. Dad’s cell number came up on the TV the other day, and I almost lost my lunch- until I realized we were watching a taped show on DVD- which had recorded an earlier call from Dad. He’s still on my answering machine, his cigarettes butts are still in the ashtray on the porch, and I wear one of his old sweatshirts around a lot just to feel him a little closer.
You’re right, we are going to be OK, but somedays the tears just won’t stop coming…. and that’s just part of this long journey….
Many hugs coming back at you Pam.
Best,
TessThat’s a beautiful story & great news Daleymom, we’re all so glad to hear it! We’re wishing your Dad the very best!
-Tess
Dear Ron, I can’t imagine how you’d feel anything but what you’re feeling. You continue to be in our thoughts and prayers and you have many people on this site pulling for you…. you’re not alone.
-Tess
Along with Marion and Lainy, I’d like to pass well wishes on to you and your Aunt Sophie. I too miss seeing her on the board, & keep her in my prayers. Let her know that we are thinking of her, wishing her well, and sending hugs. You travel safe & enjoy the weekend too Hollie!
-Tess
I too wanted to tell you how sorry I am for what you’re going through. It is a very difficult journey to take with the ones we love. It appears everything has happened very quickly with your Mom, and its hard to digest things – before the next wave of questions hit. My Dad too was slightly agitated and uncomfortable at times, but I don’t think it was ‘pain’ as one of the last questions I asked him was if he’d like a pain pill and with a clear mind he said no. My experiences with Dad are much like what Marion has said, it was all about keeping Dad comfortable- and if that meant sleeping, then that was okay. My Mom really fought this at first, forcing him to get up and shower & shave- thought it would inspire him to stay awake more, but to no avail. My brother wanted him taken to the hospital every time his status changed. Dad just wanted to sleep, with or without his pills. With three brothers and a strong willed Mom, we had some heated discussions about what the right steps to take were. Keep discussions going with your hospice nurse and trust your heart. Whatever choice you make will be the right one for your Mom.
Sending you wishes for strength,
Tess
Hi Wendy, I’m glad you had a chance to connect with Gavin, he has much experience to offer. Good to hear from you Gavin!
You keep your spirits up to Wendy, and remember to take care of yourself, the caregiver-daughter/son role can be very exhausting & gratifying on so many levels.
As an aside, for the dozen second opinions we found for Dad, none were referrals and there is often disagreement (even amongst the specialists) about potential treatment options. In our case, we had to go search out our own doctors & then Dad’s original oncology office sent his doctor records and CD imagery to these other specialists in FedEX overnight delivery packages, such that they could be tracked. It meant that the docs. could review all the records and let us know if they could perform any treatments outside of chemo, and that we didn’t have to travel to get these opinions. 10 out of 11 doctors said no to resection, and one said yes (if the tumor could be shrunk a bit via chemo & radiation). His oncologist said that resection was the only option for survival in Dad’s case (but everyone’s story unfolds differently), so we were shooting for the stars & desperately wanted it out. Mind you, they were willing to attempt resection on Dad, even with advanced stage 4 intraheptic cc. He was just about to start the radiation when he passed. He did tolerate the chemo (gemzar) quite well, as it effects everyone different. He was very tired, his appetite went down, at times he felt a slight bit nauseus, and his tastebuds were effected. But he was still able to go sit on the porch and enjoy the sun! Like your Mom, Dad had repeated problems with the stent (in his case it was a biliary catheter used to divert the bile), you have to stay on the doctors with any issues as soon as they arrise. Dad had his catheter changed out 3X in 4 months, and they couldn’t figure out why it would quit working, but each time they put a bigger one in. He also got an infection in his cath, which had to be treated asap. His had to be flushed daily. He too got very jaundice again when they’d start acting up, but the itching did not return. They do offer prescriptions to address the itching and a moderator on this board (Lainy) suggested SARNA cream, it’s over the counter, and that too seemed to help (it’s a US product, but I’m not sure if it’s available in the UK). I’m sure it is driving your poor Mom crazy.
It would be wonderful if your Mom could get back out into the garden again, even if was just for tea and relaxation…. hope is never ridiculous, it’s all we have & the small pleasures & moments count for so much in life!
Best to you Wendy,
Tess
Kristin, we have to get one thing straight… your good news is music to our ears and you should never be shy about sharing it! It is inspirational and you are an inspiration. While the cancer impacts everyone differently, there are measures one can take (regardless of if they have cancer or not) that can significantly improve quality of life, and the tools you use to do so should definitely be shared!
Keep it up, we’re sending you tons of great wishes for continued strength!
Best,
TessI sure do know your concerns Wendy, it’s a rollercoaster ride for the whole family & you’re definitely not alone. One of the most important things I’ve learned from this site is that everyone responds differently to the cc, and to the various treatments, it is virutally impossible to predict the course of the cancer. Some people survive for years! My Dad was was not one of them, and we lost him in March.
I think your Mom’s symptoms are pretty typical of cc, as they reflect much of what others indicate at the time of their diagnosis. A good oncologist can help your Mom deal with many of those symptoms & the stent should help with the itching (it totally stopped my Dads). He also took meds to try & increase his appetite & he drank the powder nutritional shakes if we mixed them in a blender with some ice-cream. We also went after numerous second opinions, which you can start at any point if you choose, as different docs approach the cc treatment plan differently. As far as how advanced the cancer is, they were able to determine that my Dad was stage 4 – at the time of diagnosis.
I know how hard it is Wendy, and I can tell you’re in for the fight. You’re family is lucky to have you as their advocate!
Come back and post anytime with your questions. If you post a new thread in the introductions section, many more people will see your note & you’ll likely get more feedback- just a thought….
Best,
TessHi Wendy, and thanks for the post. Gavin is such a fighter on behalf of his family and was one of the first to welcome me to this site, I am certain he will help you any way he can. My Dad had cc, and at the time of research options we too considered Radio Frequency Ablation (RFA)- which appears to be comparable / perhaps synonymous with Microwave Ablation (http://www.liverpancreas.org/radio_micro/). Perhaps others can provide more insights. They do use RFA as a tool for cc. One hospital here in the U.S., providing a second opinion to us, indicated that tumor size and proximity to a major vessel prevented Dad’s candidacy for RFA. You may wish to search this site for others that have experience with it, there are many varieties of treatments that surface on this site.
We are wishing you and your family strength too Wendy.
Best,
TessGreat to hear about your weekend Barbara- you have a fighting spirit within, that can not be stifled! I am certain that at the next conference, they’ll have to chain the Italian gal to her seat to keep her from voicing her thoughts & questions at the mic! You have a great team of supporters behind you, and on behalf of the many quiet voices and broken hearts that don’t have the strength to advocate as you, we are sending many thanks and virtual hugs straight out there to you in Chicago!
Best,
Tess
