A forum for family, friends and carers of pancreatic cancer patients

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Ange
Posts: 2
Joined: Sat Jul 28, 2018 7:23 am

Put the brakes on!

Postby Ange » Mon Jul 30, 2018 6:55 pm

Hello to all you lovely, caring people. This is my first post and I'm still reeling from the shock of my brothers pc diagnosis 4 days ago. He has been told to go home and take steroids for 2 weeks as he is too weak for chemotherapy. No one has asked the dreaded 'how long' question, and we feel like this awful decease is the end. He's 59.

Michaela1
Posts: 49
Joined: Sat Jun 30, 2018 11:16 pm

Re: Put the brakes on!

Postby Michaela1 » Mon Jul 30, 2018 11:48 pm

I think here does not seem to be a specific time, but a specific person to each specific treatment! I start my 1st round of folrinox chemo tomorrow. I am stage 4 metastasized to the liver and around he cavity, still don't really know what it all means....now I guess just trying to focus on treatment and see what brings after the first 6 sessions?
My family are reeling a bit, I think for me it is easy to be the one that has it rather than the family members who has to try and deal with their loved one having it. Hope the steroids help and he can start treatment soon.

Marmalade
Posts: 58
Joined: Thu Jul 06, 2017 4:29 pm

Re: Put the brakes on!

Postby Marmalade » Tue Jul 31, 2018 1:11 am

There is no way of telling when or how someone will go. Some, who are otherwise in good health and where surgery is appropriate or there is a good response to treatment, may have years. For others who have more complex health issues or who are older or weaker may go within weeks or months. No two people are alike. The main thing is to develop a really good relationship with your GP who in the end is the person responsible for your care, make sure you understand ALL the treatment options (including no treatment). Ask to meet the palliative care team who may be based at a local hospice, they are not just there to care for the dying, they are experts in dealing with treatment side effects like nausea, tummy upsets, diet, exercise and lots of other very useful stuff like caring courses for those who may be looking after you at home, teaching them how to support you. You also need to make sure you get a formal diagnosis and form DS1500, your GP or specialist nurse may get this for you. Everyone with this diagnosis is entitled to fairly substantial non means tested financial help which you should claim, even if you don't need it now, it will be accruing for a time when you may need extra help at home or taxis or any other expense you may have because of hospital visits and so on. MacMillan Finance via the Macmillan web site handle this for you over the phone so it's really easy.

I hope some of this helps and wish you luck

Marmalade

PCUK Nurse Rachel R
Posts: 24
Joined: Thu Jan 25, 2018 10:52 am

Re: Put the brakes on!

Postby PCUK Nurse Rachel R » Tue Jul 31, 2018 3:38 pm

Dear Ange
I just wanted to welcome you here to the forum on behalf of the nurses. I am sorry to hear about your Brother's diagnosis. I can only imagine how difficult and anxious a time this is. I do hope that his condition improves to enable him to receive some chemotherapy if this is his wish.
Please don't hesitate to call or email us if you would like to chat directly with us, you are very welcome.
Kind wishes
Rachel

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

toodotty
Posts: 110
Joined: Sat Jun 09, 2018 4:17 pm

Re: Put the brakes on!

Postby toodotty » Tue Jul 31, 2018 4:04 pm

Ange,
I am sorry to hear about your brother, 59 is not old in terms of Pancreatic Cancer (PC), half of all cases are diagnosed in people 75+ with complex medical needs. Unfortunately the NHS has a one size fits all approach to Stage IV PC, which is basically go home and put your house in order ....
This does not need to be the case but your brother will need to fight all the way to get help. Do use your GP (who may also be out of their depth) and your brother is entitled to a second opinion. The treatment does vary from postcode to postcode so he may get treatment elsewhere.
You haven't given much information about his condition, if he is suffering from jaundice then he will really feel awful but will need a procedure to put in a stent.
So sorry that you have to post on this site, but you will get great support including from the lovely nurses.
"We are each our own statistic" and shouldn't be dismissed so easily.

toodotty

Ange
Posts: 2
Joined: Sat Jul 28, 2018 7:23 am

Re: Put the brakes on!

Postby Ange » Tue Jul 31, 2018 5:37 pm

Thankyou all so much, I feel so much better after reading your comments and good wishes. I'll return here when I have more insight into my brothers condition. I'm up for the fight, not ready to lose him just yet. Much love to you all.