A forum for advanced pancreatic cancer issues

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Kerry
Posts: 26
Joined: Wed Jun 20, 2018 7:22 pm

Re: My Mum

Postby Kerry » Tue Mar 05, 2019 7:43 pm

Hi LST,

I’m so sorry to hear your mums pain hasn’t been sorted. Give the nurses on this site a call. They were so helpful when I spoke to them.

Hope you get your mums meds sorted soon. That will make a huge difference once she has the pain under control.

Kerry x

LST
Posts: 9
Joined: Mon Feb 04, 2019 7:14 am

Re: My Mum

Postby LST » Tue Mar 26, 2019 7:12 am

Well the rollercoaster continues!

Mums pain meds were changed and she was better and ready for her first chemo. All went fine with it apart from some fatigue and a slight upset stomach. 2nd round was planned but platelets were low so delayed one day. Next day platelets still low so delayed 2 days that’s when things went pear shaped.

Mum had a reaction to the meds she was on and I had to phone the emergency number. She was admitted to hospital. She was suffering from delirium, caused by her medication, she didn’t know where she was, who she was or who I was and was so dizzy she couldn’t walk. I was so scared and was convinced I was going to lose her, very upsetting and traumatic week.

She’s still in hospital a week and a half later. Delirium has eventually gone but it’s left her very weak. Her meds are being tweaked and she’s still in pain. She’s lost a load of weight and her hair has started to fall out too. Oncology consultant is moving her to the hospice for rehabilitation to get her back on her feet to go home. They are still saying they’ve not totally given up hope she’ll start the chemo again but she needs to be so much fitter than she is for her to get it. Mum asked if she was going to hospice to die but consultant said no just to get rehabilitation, you’ll come out again. Do you think she’s telling the truth?

I’m just not sure they will give chemo again and if I’m being honest I’m not sure she’ll get home. When we were offered chemo they said it probably would give us a year! I just can’t believe everything has gone so wrong. I’m so upset and anxious and worried about mum. I’m not sleeping, I’m trying to work and go visit mum. I need her to be here a wee bit longer as I feel we’ve not had the chance to fight this horrible disease!

Maybe I’m just a pessimist but as each day passes without chemo the tumour grows! And her time with he ticks away.

Maybe the hospice will work wonders and she will get home again .... please everyone keep your fingers crossed x

LST

PCUK Nurse Nicola
Posts: 9
Joined: Tue Sep 04, 2018 9:40 am

Re: My Mum

Postby PCUK Nurse Nicola » Wed Mar 27, 2019 4:30 pm

Hi LST,

Its Nicci here, one of the nurses working on the support line at Pancreatic Cancer UK.

LST, I am so sorry to hear that your Mum has had complication’s from her medications, she must have felt dreadful and I am sure you are all most upset and frustrated that she hasn’t been able to continue her chemotherapy at present.

LST I am going to send you a direct email with some further information, which I hope will be helpful to you. Please be aware you can also contact us on the support line number (see below in the signature) as and when you need. We are open Mon-Fri 10am- 4pm.

Kindest Regards

Nicci

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

LST
Posts: 9
Joined: Mon Feb 04, 2019 7:14 am

Re: My Mum

Postby LST » Mon Apr 22, 2019 10:00 pm

Well it’s with a heavy heart that I have to tell you my mum passed away on 5 April 2019.

Mum started her chemo on 7 March - all went well. A little fatigue and a little bit of an upset tum but all okay. She said a week later that she felt the best she had felt in 3 months since she was diagnosed!!!! Great news x
She went for her second dose however, her platelets were low. That was the Thursday, she went back on the Friday and they were still low- she was booked to go back on the Sunday.
On the Friday night, 15 March, she was very dizzy and I thought she had an infection. Called the emergency cancer number, and she was admitted. Mum had delirium caused, we think, from her medication. She was away with the birdies for a week - very frightening! At one point they thought the cancer had spread to her brain, which was terrifying for us.
She recovered to a certain degree, she was left very very weak and with substantial weight loss. Oncologist decided to send her to the a hospice to rehabilitate her and to get on top of her pain. She moved to the hospice on 27 march. Spoke to Oncologist and she was still hopeful she would get rest if chemo and get home.
Mum settled well in the hospice but was still in considerable pain! They chopped and changed things but mum was still weak and pain was still an issue especially during the night.
I spoke to the consultant on Thursday 4 April and we talked about how we could get her home, possible chemo options and what was next. All positive.
At 2.39am on Friday 5 April I got the call. I drive like a maniac but I didn’t make it in time unfortunately abd mum passed 5 mins after they phoned me. That will always make me sad- I wanted so much to be with her.
So just 3 weeks after delirium struck and the day after I spoke about the future chemo options I lost my wonderful, supportive, caring mum. I’m devastated!
I feel we never really had a chance at a fight! Diagnosed 7 Jan 2019. Chemo 7 March 2019. Delirium 15 March 2019. Her passing 5 April 2019.
We were given 3 months possibly longer without treatment and up to a year with treatment. We didn’t get either. In a blink of an eye, in a short breath, in a hesitation, she was gone. I’m so angry we never got to fight this!!! Why? I wasn’t ready to say goodbye. she wanted to fight it!! She was my mum my best friend. How I go on from here I don’t know. I don’t have a husband or partner or brothers or sisters x I feel so alone so frightened x life is so very very unfair xxx

Wishing you all the strength and courage to fight this and I hope with my heart you have more time with your relatives x treasure each moment xx

“Until we meet again Mum xxx”

PCUK Nurse Rachel R
Posts: 50
Joined: Thu Jan 25, 2018 10:52 am

Re: My Mum

Postby PCUK Nurse Rachel R » Tue Apr 23, 2019 4:19 pm

Hi LST,

I'm so incredibly sorry and sad to read of your lovely Mum's passing.

Thank you for sharing Mum's end of life story and pouring your heart out.

Your Mum sounds such an amazing and brave lady. I'm certain she is massively proud of you and thankful for all you did as you tried to fight this dreadful disease together.

On behalf of all the nurses here, we would like to extend our deepest sympathies to you - please know that you are in our thoughts. Please know we are here for you if you need some support in the weeks ahead.

Thinking of you,

Rachel, Dianne, Jeni & Nicci.
Pancreatic Cancer UK Support Nurses