Hi Jane hoping things are improving for you and that you are feeling a lot better. I know once Pete had the stent fitted he started to feel better quite quickly. Sending love.
Elaine
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Re: Jane's story
Hi All
Thought I would post an update. I spent 8 days in hospital and had a biliary and a duodenal stent fitted. Started to feel stronger and stopped being sick. Came out of hospital last Tuesday and started my first course of Folfirinox yesterday. I'm at home now with a pump which gets removed tomorrow. I've also started taking Creon with meals. I got told off by my lovely McMillan nurse for not taking enough pain relief, so now have a low dosage morphine patch and liquid morphine when required. The pain isn't sharp or severe, more low level discomfort and queasiness. Loss of appetite is a big problem, but early days. I'm grateful that I'm now receiving treatment to attack the tumour at last, rather than just symptom management. As always, I'm being treated like a queen by my fantastic family!
Thought I would post an update. I spent 8 days in hospital and had a biliary and a duodenal stent fitted. Started to feel stronger and stopped being sick. Came out of hospital last Tuesday and started my first course of Folfirinox yesterday. I'm at home now with a pump which gets removed tomorrow. I've also started taking Creon with meals. I got told off by my lovely McMillan nurse for not taking enough pain relief, so now have a low dosage morphine patch and liquid morphine when required. The pain isn't sharp or severe, more low level discomfort and queasiness. Loss of appetite is a big problem, but early days. I'm grateful that I'm now receiving treatment to attack the tumour at last, rather than just symptom management. As always, I'm being treated like a queen by my fantastic family!
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Re: Jane's story
That's a very positive post Jane. Really good to hear from you and I'm sure the treatment you are getting from your family is nothing less than you deserve. My hubby was always told to stay on top of the pain rather than to wait until it was bad for pain relief. Easier to control that way.
Fingers crossed your appetite soon returns. My hubby's did after a couple of cycles of folfirinox.
Big hugs
PW
Fingers crossed your appetite soon returns. My hubby's did after a couple of cycles of folfirinox.
Big hugs
PW
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Re: Jane's story
Hi Jane
Just seen your post over on Stepuha's thread. How exciting! I think it's brilliant that the wedding has been brought forward. The slight delay to cycle 5 should not make any difference and I think it's absolutely the right thing to do so that you can enjoy your daughters special day and your very proud role being Mother of the Bride!
I don't know what meds you are on but my hubby took dexamethasone (steroid) and metoclopramide - both of which boosted his appetite and enabled him to eat because like you, he struggled. Just a thought.
I wish the bride and groom all the health and happiness in their future lives together and may their wedding day be the one that dreams are made of.
Let us know how it goes!
All the very best
PW xx
Just seen your post over on Stepuha's thread. How exciting! I think it's brilliant that the wedding has been brought forward. The slight delay to cycle 5 should not make any difference and I think it's absolutely the right thing to do so that you can enjoy your daughters special day and your very proud role being Mother of the Bride!
I don't know what meds you are on but my hubby took dexamethasone (steroid) and metoclopramide - both of which boosted his appetite and enabled him to eat because like you, he struggled. Just a thought.
I wish the bride and groom all the health and happiness in their future lives together and may their wedding day be the one that dreams are made of.
Let us know how it goes!
All the very best
PW xx
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Re: Jane's story
I thought I had posted exactly the same thing yesterday but it did not post (or was removed). I absolutely recommend you walk to your dr and ask for steroids and anything else they can think of to make the day lovey. It is not a long term solution but it will work... have a lovely lovely day. x
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Re: Jane's story
Hi All
Well on Saturday my lovely daughter Lizzie got married in a 'festival' wedding at Evenley Gardens near Buckingham. A marvellous day full of love and laughter, and I stayed the course, dancing to the Motown band till nearly midnight. The wedding was originally planned for July 2018 but they brought it forward because of my condition - stage 3 inoperable advanced pancreatic cancer, diagnosed in March this year.
My oncologist agreed to delay my 5th round of Folfirinox so I could be as well as possible on the day. I was due to start it today but was unable to due to high temperature and dodgy blood test. I have come home with a course of antibiotics for a week, but feel terrible and am in bed. I've been lucky enough to control any pain with a morphine patch, but now I have intermittent stomach and back pain, I'm also taking liquid morphine and paracetamol. Just wondered if anyone has had a similar experience with pain returning? Any advice will be very welcome.
Well on Saturday my lovely daughter Lizzie got married in a 'festival' wedding at Evenley Gardens near Buckingham. A marvellous day full of love and laughter, and I stayed the course, dancing to the Motown band till nearly midnight. The wedding was originally planned for July 2018 but they brought it forward because of my condition - stage 3 inoperable advanced pancreatic cancer, diagnosed in March this year.
My oncologist agreed to delay my 5th round of Folfirinox so I could be as well as possible on the day. I was due to start it today but was unable to due to high temperature and dodgy blood test. I have come home with a course of antibiotics for a week, but feel terrible and am in bed. I've been lucky enough to control any pain with a morphine patch, but now I have intermittent stomach and back pain, I'm also taking liquid morphine and paracetamol. Just wondered if anyone has had a similar experience with pain returning? Any advice will be very welcome.
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Re: Jane's story
What a wonderful picture! You both look fabulous. So glad you had a wonderful day and I do hope you feel better soon xx
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Re: Jane's story
Hello Jane,
What a beautiful picture! Thank you so much for sharing - I believe the first to share a picture on the forums! Well done on mastering the technology!
It was also lovely to speak with you this am Jane.
Hopefully, some of the measures we talked about will improve things, and we will await to hear from you next week to see how things are going.
Kind regards,
Jeni.
Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707
What a beautiful picture! Thank you so much for sharing - I believe the first to share a picture on the forums! Well done on mastering the technology!
It was also lovely to speak with you this am Jane.
Hopefully, some of the measures we talked about will improve things, and we will await to hear from you next week to see how things are going.
Kind regards,
Jeni.
Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707
Re: Jane's story
Lovely picture (you'll have to give us a tutorial on how yo do that!) And it sounds like you had a super day...but sorry you're feeling rough now. I do hope you feel better soon.
Vx
Vx
Re: Jane's story
Hi Jane, it really is a lovely picture, and what a fabulous day it sounded. Sorry to hear you are not feeling well, but I am sure you had some fabulous advice from our nurses, I hope with the antibiotics you will feel better soon. take care sandrax xx
Re: Jane's story
Dear Jane
I hope that by now your pain is well under control again and that the antibiotics are working.
And thank you from me too for sharing that gorgeous photo of a stunning bride and beautiful M.O.B.
W&M xx
I hope that by now your pain is well under control again and that the antibiotics are working.
And thank you from me too for sharing that gorgeous photo of a stunning bride and beautiful M.O.B.
W&M xx
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Re: Jane's story
Hi Jane I have been following your story and am a similar age and have a similar diagnosis to you. I had a biliary stent which came out and I now am in hospital needing a new one and also a duodenal stent. Have tried to send you a private message but the facility doesn’t seem to be working so I wondered if there is any other way we can connect?
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Re: Jane's story
Hi Stronglady,
Unfortunately, we do not have the facility to send private messages on the forums.
Kind regards,
Jeni.
Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707
Unfortunately, we do not have the facility to send private messages on the forums.
Kind regards,
Jeni.
Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707
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Re: Jane's story
Sorry I was sure I saw that other people send pms and have added Jane as a friend where it says send Jane a message
Re: Jane's story
Some of us are in contact off the forum. You can ask the nurses to pass your details onto Jane and then it's up to her if she gets in touch.
Vx
Vx