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

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jihiy
Posts: 5
Joined: Mon Sep 10, 2007 8:30 pm

Much Aloha to all involved with this disease.

Postby jihiy » Sat Sep 15, 2007 6:33 pm

My sister was diagnosed with Pancreatic Cancer in July/August of this year. I can't remember exactly when. She told us that she had gall stones, but cancer was found and a stent was inserted.

She was scheduled first for chemotherapy and later for radiology treatments, but has not had ANY treatment yet. It is the middle of September already. I feel sorry for everyone and everyone who is involved with the National Health System. My sister lives in a highly populated area of Yorkshire, but has to travel miles and miles to the nearest treatment center. She is shuttled from Doctor to Doctor, and there doesn't seem to be a primary care doctor involved. She is very depressed right now, as the journey to the treatment center was very difficult for her as she has other medical problems, which make travelling very painful and uncomfortable, and no treatment was started. She was all pumped up and positive to start her treatment of radiology and chemo, but oh dear! nothing happened, except she was given another scan and told to wait for the result. According to her, appointments were mixed up and she was given the wrong information.

It is very difficult to hear her relate her problems and she has become very depressed right now and bemoans the system. I get frustrated for her. Last week, when I called her she was so looking forward to having treatment and had a very positive outlook.

Is this the normal way of doing things in the UK? I feel that for this cancer there is a certain level of urgency for treatment to start, which seems to be ignored in her case. I have lost a dear friend within six weeks of diagnosis of this type of cancer.

She also does not seem to be getting any counselling of any description to help her cope with this diagnosis. I want to be there to hold her hand, but I cannot as I live on the other side of the world. I phone her every weekend and just talk to her.

Thank you for having a place for me to vent. Much Aloha to you all.

sharmayo
Posts: 23
Joined: Wed Aug 01, 2007 9:21 pm

hi jihiy

Postby sharmayo » Sat Sep 15, 2007 8:06 pm

First of all I am sorry to hear your sister has pc,my dad went into hospital with suspected gallstones but had pc with a 2 stents fitted.
I am sorry that your sister has not recieved not very good treatment it must be different in certain ares of the uk as my dad had very good care up to the day he died.
I wish your sister well and hope she gets the support and treatment she needs.

sharon

jihiy
Posts: 5
Joined: Mon Sep 10, 2007 8:30 pm

Thanks

Postby jihiy » Thu Sep 20, 2007 4:40 am

Thanks for your reply Sharmayo. I hope when I call her the next time, my sister will be feeling better. It is so hard being so far away and being unable to be with her.

Lollipop
Posts: 2
Joined: Sun Jul 01, 2007 11:29 pm

Postby Lollipop » Thu Sep 20, 2007 11:49 pm

So sorry to hear about the bad experience your sister has had. My dad was not offered immediate treatment and decided not to have any anyway so I am not familiar with the process I am afraid.

I hope and pray that she gets sorted soon and starts her treatment as soon as possible. Mc Millan nurses will offer counselling so if she has not been contacted by them then she should contact them herself.

My thoughts are with your sister and her family
x

jihiy
Posts: 5
Joined: Mon Sep 10, 2007 8:30 pm

Treatment starting

Postby jihiy » Sun Oct 07, 2007 11:09 am

Finally my sister is getting Chemotherapy!. Maybe it's because I emailed her local MP and told him about the treatment she had received. I received a very nice reply. :D The treatment wont start until October 17, but we cant say that she was not offered any!

Lollipop
Posts: 2
Joined: Sun Jul 01, 2007 11:29 pm

Postby Lollipop » Mon Oct 08, 2007 1:16 pm

Good news - I hope all goes well for your sister.x

claude
Posts: 14
Joined: Wed Jun 27, 2007 7:11 pm

Postby claude » Wed Oct 10, 2007 12:23 pm

hi
i too am sorry to hear about your sister and the terrible time shes been having.Along this journey with mum we have had times when we have literally had to fight tooth and nail for the best care for her.It sounds like you've got the right idea emailing the mp etc. If i've learned anything from this experience its not to just accept and do as your told.Ask questions research things for yourself and then pester till you get what you want for her.As long as your calm and polite people will eventually listen. I'm sure she will feel more positive now she is having chemo its that feeling of fighting and doing something.
Good luck to you and your sis if either of you have any questions however silly they seem post and we will do our best. claude x

jihiy
Posts: 5
Joined: Mon Sep 10, 2007 8:30 pm

My sister died on Thursday, March 6, 2008

Postby jihiy » Mon Mar 10, 2008 5:43 am

My sister died on Thursday, March 6, 2008. She was 67 years old. She was an intelligent, beautiful person. In her life she was an athlete, scientist, linguist and a hard working mother.

She kept most of the details of her suffering from me and the rest of the family. She would joke that she read the Obituary every day to make sure she wasn't mentioned in it.

She had a lot of complaints about the Health System and told me how arrogant some of the doctors she had visited were.

I was able to call her many times and talk with her. I thought she would be able to live until I visit England in April.
The last conversation we had on the Sunday before she died, I had told her that I had been to a Rock Concert with my oldest son, and had seen the Police. She told me quite vehemently that Sting could not sing. I replied that he had done very well the night I saw him. Her last words to me were, "God bless you too."

One day there will be a means to detect this insidious disease before it gets started and there will be a cure.

God bless and keep all of you who are going through this disease with your loved ones. I want to send fondest, warmest Aloha to you all and to thank you for all your replies and sharing, and for making me welcome in this group.

angelinamacc
Posts: 29
Joined: Sun Jul 08, 2007 11:51 am

So Sorry

Postby angelinamacc » Tue Mar 11, 2008 12:44 pm

So sorry to hear about your sister and just want to send love and prayers to you at this sad time.
My mum died on November 25th 07, after a long struggle so I feel for you.
Angie

sharmayo
Posts: 23
Joined: Wed Aug 01, 2007 9:21 pm

so sorry jijhi

Postby sharmayo » Tue Mar 11, 2008 1:17 pm

I am so sorry to hear of your sister's passing.
My thoughts are with you and your family.

Sharon
Last edited by sharmayo on Tue Mar 11, 2008 1:19 pm, edited 1 time in total.

sharmayo
Posts: 23
Joined: Wed Aug 01, 2007 9:21 pm

so sorry jijhi

Postby sharmayo » Tue Mar 11, 2008 1:18 pm

I am so sorry to hear of your sister's passing.
My thoughts are with you and your family.

Sharon

rosieh
Posts: 69
Joined: Sat Apr 14, 2007 11:42 am

Postby rosieh » Tue Mar 11, 2008 5:56 pm

I'm sorry to hear about your sister.

Take care,
Jan
x