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BromsgroveSister
Posts: 12
Joined: Fri Nov 23, 2018 1:27 pm

Re: My big brother

Postby BromsgroveSister » Fri Dec 14, 2018 11:12 pm

Be hopeful Sam. Your message mum’s bilirubin levels are heading in the right direction which is positive.
I understand your disappointment with missing out on a trial. My brother too missed out on a trial 2 weeks because his bloods weren’t good enough.
Hopefully my brother’s bilirubin level will fall over the weekend and chemo could be considered next week.
I can imagine how hard it is to think about life without your mum Sam, but at this point try and be helpful. I really believe in positive energy and you need to believe that your mum can do this.
I heard that my brother ate a pot of custard today. Sounds quite unremarkable but considering he’s been vomiting for 2 weeks now this is really something to be happy about.
Just take one day at a time. Today is a better day I think.
Hope all our loved ones have a good night tonight.
Xx

BromsgroveSister
Posts: 12
Joined: Fri Nov 23, 2018 1:27 pm

Re: My big brother

Postby BromsgroveSister » Tue Dec 18, 2018 5:18 pm

My big brother has worsened since my last post. He has now been told that his cancer is now too advanced to receive chemo. This is such a cruel blow.
Especially when he was told on the 21st Nov that he shouldn’t “panic” as his cancer wasn’t particularly active so we didn’t need to worry about chemo being initiated in a fortnights time. As a result of that delay the cancer has spread. Bilirubin is now at 148 despite a stent and the consultant does not think this is likely to fall.
My brother is still being sick after feeds although he is still trying to eat and drink himself. Tomorrow they are going to transfer him to another hospital for an endoscopy to try and enable him to keep his feeds down.
I am so angry that he is now being denied the opportunity of treatment because there were initial delays in the system which meant he wasn’t treated with any urgency.
Has anyone been in this position? Is there anywhere to go from here? X

KeithKerry
Posts: 60
Joined: Fri Apr 13, 2018 8:44 pm

Re: My big brother

Postby KeithKerry » Tue Dec 18, 2018 7:04 pm

BromsgroveSister wrote:
> My big brother has worsened since my last post. He has now been told that
> his cancer is now too advanced to receive chemo. This is such a cruel blow.
> Especially when he was told on the 21st Nov that he shouldn’t “panic” as
> his cancer wasn’t particularly active so we didn’t need to worry about
> chemo being initiated in a fortnights time. As a result of that delay the
> cancer has spread. Bilirubin is now at 148 despite a stent and the
> consultant does not think this is likely to fall.
> My brother is still being sick after feeds although he is still trying to
> eat and drink himself. Tomorrow they are going to transfer him to another
> hospital for an endoscopy to try and enable him to keep his feeds down.
> I am so angry that he is now being denied the opportunity of treatment
> because there were initial delays in the system which meant he wasn’t
> treated with any urgency.
> Has anyone been in this position? Is there anywhere to go from here? X


This is awful and perfectly encapsulates what Erika has been saying about how lethargic we are about treating PC in this country.

I am so sorry to hear about this and I do feel your pain, as I'm sure do others that read and post here. This disease just seems so utterly unpredictable. It seems to do nothing and then everything. Having said that, we really do have a lot of learning to do in the UK when it comes to PC and getting treatment underway. An awful lot.

We are just getting it completely wrong far too often.

toodotty
Posts: 165
Joined: Sat Jun 09, 2018 4:17 pm

Re: My big brother

Postby toodotty » Thu Dec 20, 2018 11:44 pm

Hi both,
I became jaundiced 3 days before I started chemo so had full dose Folfirinox with a blocked bile duct. The speed with which the jaundice disappears depends on the stent fitted, the plastic stents do not work as well as the metal ones. I had a plastic stent due to a nickel allergy but my oncologist slightly delayed my second treatment and gave me a reduced dose for two rounds. Yes the side effects were much worse than once the jaundice cleared. Make sure that your brother and mum drink plenty of fluids to help flush out the liver. My drink of choice is very diluted lemon barley water.

Erika.

BromsgroveSister
Posts: 12
Joined: Fri Nov 23, 2018 1:27 pm

Re: My big brother

Postby BromsgroveSister » Thu Dec 27, 2018 12:25 pm

My big brother passed away at 6.18am 26/12/2018.
He never had the chance of chemotherapy as the delays in the system meant the cancer had spread extensively through his liver.
He was official diagnosed on Nov 7th despite being back and forth between GP and A&E from July 2018. That meant he passed 6.5 weeks after official diagnosis.
This has been such a horrible journey and I pray that everyone on this forum does not have the same experience as my poor big brother.
17.01.64- 26.12.18 💜

drtzzr1100
Posts: 7
Joined: Fri Dec 07, 2018 6:20 pm

Re: My big brother

Postby drtzzr1100 » Thu Dec 27, 2018 1:02 pm

I am so sorry for your loss no words can express how horrible this disease is I hope you find some solace in knowing he is out of pain now. My husband is on end of life now he was diagnosed on 1st October 2018 after starting tests in July 2018 so much more needs to be done to find and treat this evil disease earlier to give our loved ones a chance to fight it.
All my love and prayers I send to you x x 😢❤️🙏🏻

PCUK Nurse Jeni
Posts: 1075
Joined: Mon Jun 14, 2010 1:30 pm

Re: My big brother

Postby PCUK Nurse Jeni » Thu Dec 27, 2018 3:25 pm

Dear Bromsgrove sister,

We are so sorry to hear about this sad news - we know how difficult this has been for you all and how devastated you are.

On behalf of all the nurses here, we would like to extend our deepest sympathies to you and your family - please know that you are in our thoughts.

Kindest regards,

Jeni.
Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Samsavan
Posts: 13
Joined: Thu Dec 06, 2018 9:01 pm

Re: My big brother

Postby Samsavan » Sun Dec 30, 2018 12:58 pm

BromsgroveSister wrote:
> My big brother passed away at 6.18am 26/12/2018.
> He never had the chance of chemotherapy as the delays in the system meant
> the cancer had spread extensively through his liver.
> He was official diagnosed on Nov 7th despite being back and forth between
> GP and A&E from July 2018. That meant he passed 6.5 weeks after
> official diagnosis.
> This has been such a horrible journey and I pray that everyone on this
> forum does not have the same experience as my poor big brother.
> 17.01.64- 26.12.18 💜


I am so sorry to hear about your brother’s passing.
No matter what is said , it will hurt for a while.
Take solace in knowing he was in pain but not anymore.
Sending you hugs and I hope he rests in peace .


Sam x