My mum - Stage 4 PC with liver mets

[PCUK Nurse Jeni]

Hi dee123,

Thanks so much for posting this - the timeline is really helpful, and it shows clearly that your mum seems to have a sensitivity to chemotherapy. Such good news that stability of the disease can be achieved - this will bring hope to many who are about to embark on chemotherapy.

Of course chemo does have its side effects, but it is really good to hear that your mum is going to carry on with chemo due to the good response. Well done to her - she sounds like a strong lady.

Once again, thanks for your post.

Kindest regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Dee123]

A quick update.

My mum has just finished another 12 sessions of chemo however the last few days she has felt unwell. We took her temperature on Friday morning and it was 38.8 degrees, we called the hospital and were advised to call an ambulance straight away. They took her to A&E.

They have been doing tests and it turns out there is an infection (sepsis) around both of her stents (biliary and duodenal) caused by a blockage. She is on antibiotics to help the infection and then they are aiming to replace both stents.

Another week or so in hospital now.

I hope that everyone reading this is doing ok x

[PCUK Nurse Rachel R]

Hi Dee123,

Sorry to hear this news about Mum, I hope now that she has a had a few days worth of antibiotics that she is feeling slightly better and that there is a plan about the replacements stents.

You know where we are if you's like to chat, or if there's anything we can help with.

Kind wishes to you and Mum,

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Dee123]

My mum has been in hospital twice this month with biliary sepsis, she came home this week.

She has been told that there is no more treatment available for her in terms of chemotherapy as the cancer has spread further to the liver and lungs. The hospital replaced her biliary stent which has relieved her jaundice slightly.

She came out of hospital with bed sores so we have had a hospital bed delivered at home. She's also got ascities and oedema in her abdomen, legs and feet but has been prescribed water tablets rather than a drain for now. She has been prescribed something for thrush in her mouth. She has fluid/mucus on her lungs which she is coughing up regularly.

We have been referred to a district nurse and hospice at home carers.

I hope everyone is ok and have a nice Christmas x

[sandraW]

Hi Dee,

I am sorry to her about your Mum no longer being well, this is such a horrendous disease, I do hope the hospice at home can help get some stability for you. Just to let you know I am thinking of you all.

take care sandrax

[PCUK Nurse Rachel R]

Hi Dee123,

I am sorry too to hear that Mum's chemotherapy has been stopped. I know these won't be easy days. I really hope Mum is comfortable and getting the support and care she needs. You know where we are if you'd like to chat or email. We're closed the bank holidays but open 10am -2pm the other days in-between Christmas and New year.

Thinking of you, Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Dee123]

My mum has been out of hospital for a month now, the district nurse has been visiting every few days to check on her bed sores and ascities. We have a carer visit once a day to help wash her but other than that we have been left on our own to care for her.

She has been experiencing high temperatures and confusion so we requested for the GP to visit who prescribed antibiotics.

She is in a lot of pain and hardly sleeps.

Yesterday she had violent sickness and diarrhoea, she was throwing up blood every few minutes. It was black but it turned out to be blood. The hospice wouldn't answer the phone so we called 111 and they requested an emergency ambulance. She was taken into hospital and diagnosed with bleeding from her oesophagus.

I think it is called esophageal varices due to liver cirrhosis.

She had 3 blood transfusions in A&E overnight.

To our surprise, this morning (less than 24 hours in hospital) she was discharged and we are now with her at home on our own.

She is very confused, spaced out, weak, tired but we called the hospice and she doesn't qualify for care at the hospice yet. They will visit tomorrow to discuss potentially offering us more carer visits at home.

I've never had any experience of end of life care before but it does feel like we are very alone.

[PCUK Nurse Tracey]

Hi Dee 123,

Thank you for your post.

I am so sorry to hear about your mum.

I am going to email you directly.

Will be in touch soon.

Sending heartfelt thoughts.

Tracey Buckley

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Dee123]

Just to let you know that my mum sadly passed away on Friday 31st January 2020. She was diagnosed on 9 July 2018 and she fought hard for 18 months. She never gave up or complained at any point. Everyday she said "I'll be better tomorrow"

In total she had 24 weeks of GemNab chemo, Jaundice (twice), Bile duct stent (twice), Duodenal stent, Sepsis (twice), 24 weeks of GemCap chemo, 3 blood clots on her lungs, 4 stints in hospital, bed sores, ascities and oedema, mouth thrush, fluid on lungs, 4 blood transfusions and Esophageal varices.

After my last message, my mum was getting more and more confused, restless and agitated what I now know is "pre-active dying" until she could no longer walk or swallow. She was sleeping more and more.

We signed a respect form which says we agree to having no more hospital treatment.

We called the district nurses who fitted her with a syringe driver on the Friday (a week before death) and this provided her with morphine and relaxant, as she was very agitated. She had a catheter fitted as she could no longer move. Mum fell asleep on the Saturday and did not wake up.

The hospice agreed that it was the right time for her to go and they ordered transport for her. It took 6 hours for this to arrive and by the time it arrived they were worried about her dying in the ambulance. She survived the journey and they didn't expect her to last the night.

She survived 6 days from this point, unconscious and unresponsive but still breathing. We were able to stay at the hospice so we camped out in her room the whole time. In the end, she died peacefully in her sleep with family around her, she waited until the end of her favourite TV show. We are grateful to have spent the whole week with her and also to have 18 months to say goodbye.

She was the most amazing, kind and caring mum and I will be so lost without her. 

I hope that in the future we can find better and faster diagnosis and treatment for pancreatic cancer (and a cure!)

Thanks to everyone for your support in the last 18 months and the nurses for their help and advice. The nurses have been amazing and really helped throughout our journey xx

[J9pkr]

Hi Dee, not sure if you remember me but I lost my amazing Mum back in July. I keep logging on to see how your Mum is and I am so sorry to hear you have lost her too.

It is tough without them but know and take comfort from the fact they are no longer suffering from this horrible disease.

You may not feel it now but you will smile again and even laugh, you will begin to think of your wonderful Mum as she was rather than poorly.

It was too soon for both of them. Thinking of you and I am so sorry for your loss.

Janine xx

[PCUK Nurse Rachel R]

Hi Dee123,

Very sorry to hear the news of your lovely Mum's passing. She sounds like such an incredible Mum and you have been so blessed to have her in your life. I'm sure that she too felt remarkably fortunate to have a Daughter that has loved and cared for her as you have over the last 18 months (& longer).

On behalf of all the nurses here please accept our heart felt condolences and kind thoughts to you. We are here if you wish to talk.

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707