A forum for advanced pancreatic cancer issues

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LST
Posts: 10
Joined: Mon Feb 04, 2019 7:14 am

My Mum

Postby LST » Sun Feb 10, 2019 10:45 am

Hi everyone. I’m hoping I can get a bit help and support.

My mum was diagnosed on 7 jan 2018 with stage IV PC with very small mets to her liver. Tumour is the the main body of the pancreas.

She has been keeping well, no weight loss, eating well, and only a little pain which she’s been controlling with one paracetamol 3 times a day.

2 weekends ago we ended up at the hospital with a blood clot in her leg and small ones in her lungs. She’s now on injections to stop any more from forming ... hopefully.

Mum has seen oncologist and is to have a liver biopsy on 18 Feb with chemo planned to start by end feb. I can’t remember which one but it’s a mixture of 2 with 3 weeks on one week off.

The last couple of days the pain in her back has got worse and she’s moved onto cocodamol to manage the pain. Can anyone tell me how quickly the pain gets worse? She’s been doing well up until now and I’m anxious this is the start of the slippery slope and she’ll go downhill quickly? She has no other symptoms apart from this.

I’m constantly uptight and upset, I’m not sleeping and I can’t stand the thought of losing my mum. It’s overwhelming! Any help or advice To help me through would be most welcome x

Thanks

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: My Mum

Postby Proud Wife » Sun Feb 10, 2019 11:36 am

Hello LST

Welcome to the forum although I know you don't want to be here. You will get lots of support from both "forum" family and our wonderful specialist nurses who I suggest you give a ring in the morning, just to chat things through.

Everyone is different as far as PC is concerned so it's impossible to predict how your Mum's disease will progress. However, my husband had his tumour in the body of the pancreas and I can tell you, he was in agonising back pain for a couple of months before I could even convince him to go to the doctors.

Having seen my own father lose his fight with cancer, my husband always said that if he ever got cancer, he wouldn't have treatment. So of course, on that dreadful day when we were delivered the news, his immediate reaction was no thanks. However, he was gently told that he needed chemo to deal with the pain and I think that was the best advice he got. Once he got his meds sorted and had a couple of cycles of chemo, he went from skeletal and grey from the pain, to a man you'd never know was ill. As a result, we had 9 amazing months together out of the 14 he survived from diagnosis and we lived those months to the full.

Try not to worry about your mum going downhill quickly at this stage, especially as she has no other symptoms. Easier said than done though, I know. Looks like there's a good treatment plan in place and hopefully your Mum will respond well to chemo. I think it's likely she will be on Gemcitibane/Abraxane, judging by what you've said but of course, I am no doctor.

You've not mentioned how old your Mum is or whether she has grandchildren etc but my advice to you is take full advantage of the time your mum has whilst she is well, make memories, take oodles of photos and videos with the family and just try not to think "how long" simply because no-one can tell you. As I said to you at the start, everyone is different.

Take care
PW xx

LST
Posts: 10
Joined: Mon Feb 04, 2019 7:14 am

Re: My Mum

Postby LST » Sun Feb 10, 2019 11:58 am

Thank you PW for taking the time to respond.

My mum is 76 and has one granddaughter who is 22. I brought my daughter up in my own and I have no partner. I don’t have any sisters or brothers and I have no aunts or uncles for support. So I’m feeling really scared about the future without mum. I lost my dad to bowel cancer 9 years ago and that was a traumatic experience for me.

Yes I’m spending lots of time with mum and making memories. Just so very hard to accept all of this.

Can I ask PW did your husband have any side effects from the chemo? And what kind did he get? And did the chemo slow the growth of the cancer! Sorry if these questions are too personal I’m just trying to work out what the future might hold .

I’m hoping the fact that mum is doing well at the moment apart from the pain that it’s a good starting point for the chemo. I just need a bit more time with her. She’s a fighter so fingers crossed she can get a few more months with us x

LST x

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: My Mum

Postby Proud Wife » Sun Feb 10, 2019 5:59 pm

Of course you can ask! I love to talk about my husband...it keeps his memory alive and that for me is just so important.

Long story short, he was put on 12 cycles of Folfirinox which is the alternative to Gemcitibane/Abraxane. I don't know how oncologists decide which regime to start first but I think (not 100% certain) that Folfirinox is the stronger of the 2.

However, having said that, he breezed through chemo. I used to joke the nurses were putting water through his veins. That may be because he chose to have his once every 3 weeks (it's normally given once every 2 weeks) as he also wanted quality of life and it worked for him. With steroids and anti sickness medication he was able to eat normally - in actual fact - he ate more during his illness than he'd ever eaten during our 21 year marriage!

His oncologist then put him on a 12 week chemo break, despite his CA19-9 markers steadily increasing so by the time he was put on Gemcitibine/Abraxane as a 2nd line chemo, the very first cycle almost finished him off and the rest as they say is history.

I hope and pray your mum does well on chemo and that you get more than a few months to make memories. Unfortunately, nothing with PC is certain and everyone reacts differently to chemo but with you in her corner, I am sure she will do as best as she possibly can.

Finally, I do understand about how scared and lonely you must feel about the future. My son and I can count family members on one hand but have quickly learnt, it's quantity, not quantity that matters.

You will quickly learn that we become your (PC) forum family and are here for you for support whenever you need. I don't often post and I probably won't after today but rest assured you and your mum will be in my thoughts and prayers. If you would like contact with me outside of this forum if it would help you, then please ask admin to pass on your contact details.

Take care xxx

PCUK Nurse Rachel R
Posts: 60
Joined: Thu Jan 25, 2018 10:52 am

Re: My Mum

Postby PCUK Nurse Rachel R » Mon Feb 11, 2019 1:56 pm

Thanks Proud Wife for your lovely words and wise advice.

Hi LST,

I also wanted to welcome you to the forum on behalf of the Nurses. I'm sorry also to hear of your Mum's diagnosis and all the anxiety and upset that you are going through.

Please know that we are here for you and stand with you in the difficult time. Please be in touch with us if you would like to talk through any thing.

Kind wishes,
Rachel

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

LST
Posts: 10
Joined: Mon Feb 04, 2019 7:14 am

Re: My Mum

Postby LST » Sat Feb 16, 2019 7:20 pm

Thank you everyone for replying x it really does make me feel that I’m not alone.

Mum was doing well until today but today her pain is quite bad. I persuaded her to take the oromorph the GP gave us. Mum thinks this is her on her way out now she’s having to take this but I’ve tried to explain it’s for her own good. Her dosage said 0.5ml or 1ml hourly if required. I gave her 0.5ml this afternoon and it had no effect. I’ve given her 1ml at tea time hoping it might kick in. Im worried I give her too much - can anyone advise if I’m doing this right? I know it says she can take it hourly but that seems excessive.

Mums been out with me today to the shops she was in pain but got about so she’s not bed bound with the pain but you can see it on her face she’s in pain. I just want to help her.

I’m finding this journey all very emotional and honestly I can’t face the thought of losing mum and my future without her. How can I be braver and less emotional? I’m so exhausted with overthinking everything and I’m not sleeping.

Mums biopsy is Monday then oncologist again Friday. So we’re all a bit tense and anxious. Another busy week.

Any advice would be so welcome xxx

LST

Kerry
Posts: 26
Joined: Wed Jun 20, 2018 7:22 pm

Re: My Mum

Postby Kerry » Sat Feb 16, 2019 9:54 pm

Hi LST

Do you have support from community nurses/doctors? My dad was under the care of our local hospice and they were able to advise dosage of pain relief. They monitored this regularly and increased it when it was needed.

If you’ve been told 1ml per hour then it must be ok. My dad was on a much higher dose. You may find some days your mum will be in more need than others. I wouldn’t hold back if she’s suffering and would give her the dosage they’ve recommended if she needs it. It’s awful seeing them in pain and it’s something that you can help her with.

Has anyone mentioned slow release tablets? Keep a note of how much pain relief she’s having and she may be offered a slow relief tablet which can be topped up with the liquid morphine for break through pain.

It’s perfectly understandable that you’re emotional. It’s a terribly emotional time. I’m sure you will find the strength from somewhere to deal with this. Some days will be easier than others. If you feel you’re ‘over thinking’ it talk through your thoughts with friends, family or call the nurses or another support line.

I wish you and your mum all the best x

LST
Posts: 10
Joined: Mon Feb 04, 2019 7:14 am

Re: My Mum

Postby LST » Sat Feb 16, 2019 10:12 pm

Kerry

Thanks for your message. The district nurse came on Friday but mum was out the the GP getting bloods taken so she missed her. Hoping to phone Monday to get in touch with them.

I’m hoping she is better tomorrow as she is feeling really down today because of the pain. She’s been so upbeat and positive up until now it’s hard to see her like that.

If she’s no better tomorrow I’ll phone nhs 24 for advice.

Thanks for taking the time to write back x

Take care x

PCUK Nurse Jeni
Posts: 1078
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Mum

Postby PCUK Nurse Jeni » Tue Feb 19, 2019 4:39 pm

Hi LST,

Just wondering how your mum is now?

Are the pain levels improved?

Please do feel free to contact us - we are all ex-NHS nurses, and can offer specialised advice regarding pain relief and other pancreatic cancer related matters.

Kind regards,

Jeni.

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

LST
Posts: 10
Joined: Mon Feb 04, 2019 7:14 am

Re: My Mum

Postby LST » Tue Feb 19, 2019 8:09 pm

Hi Jeni

Mum was in for her liver biopsy yesterday and I knew she would be in more pain after that so I managed to speak to the district nurses and arranged for them to come in today. I also managed to speak to the GP and she’s chased up the hospice palliative care nurses who hadn’t yet been in touch. They also very kindly came out to see mum today.

The palliative care nurse has reviewed mums pain relief and is going to speak with the GP to move her onto morphine tablets as she thinks that would be a better option for mum.

Thank you for replying to me and offering help. It’s a worry trying to make the right decisions for mum and horrible when she’s in pain I just wanted to make it all better for her.

Next step is oncologist again on Friday and if all goes to plan chemo will be organised. Keep your fingers crossed.

I’m just exhausted with it all. I’m working in a very busy job and still working full time. I’m not sleeping or eating that well and it’s just exhausting! I know I need to keep strong for mum.

Thank you all so much for your support it really means a lot to me x

LST

PCUK Nurse Jeni
Posts: 1078
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Mum

Postby PCUK Nurse Jeni » Wed Feb 20, 2019 4:00 pm

Hello LST,

That's great that there has been some progress in terms of the palliative care services.

Hopefully, as you say, the morphine will be helpful. I hope the oncology appointment goes well on Friday LST.

I wonder, LST, whether you might be able to see your gp and explain the pressure and exhaustion you are under right now? Its probably likely that you need some time off - it can be very, very difficult to carry on with life outside of a pancreatic cancer diagnosis, as there is so much to assimilate, learn and navigate. So, its not surprising that you feel exhausted.

Please do look after yourself too.

Kind regards,

Jeni.

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

LST
Posts: 10
Joined: Mon Feb 04, 2019 7:14 am

Re: My Mum

Postby LST » Thu Feb 21, 2019 11:09 am

Jeni

Thank you for your advice.

I suffer normally from anxiety and I normally find it good to have the focus of work to keep me from falling off my perch. You may be right that I need time out as I do feel overloaded at the moment. I’m hoping once we have a treatment plan we can be a bit more positive.

Mum has been in a bit of pain following her biopsy and has been quite down about it. I’m trying so hard to keep her motivated but it’s hard. Has anyone got any suggestions how to help? It’s all the harder because she doesn’t want anyone to know so I can’t tell anyone! I’ve tried to persuade her but all she keeps saying is I don’t want people’s sympathy. She’s only told one neighbour and that was after I forced her into it. Is this normal not to want to say to people?

I know nothing about chemotherapy but I am assuming it’s likely she will lose her hair? Am I correct? If this is the case she’ll need to say to people but to be honest I can see her becoming a recluse in the house and not going out so people can’t see her.

I know it’s hard for her to come to terms with the fact that she’s on borrowed time but I need her to fight this! I’m not ready to say goodbye to my mum x

Sorry for the garbled message. Just so much in my mind. Hoping tomorrow ls oncologist appointment explains things better xx

Thanks again everyone.

LST

Kerry
Posts: 26
Joined: Wed Jun 20, 2018 7:22 pm

Re: My Mum

Postby Kerry » Thu Feb 21, 2019 3:21 pm

Hello LST,

I completely understand how you feel overwhelmed as I did too. I had not had a day off work in years but I got to the point where I couldn’t concentrate at work and found it too stressful with everything going on. I got signed off for two weeks and looking back I’m glad I did. My work were brilliant about it and didn’t make me feel bad at all. You’ve got so much going on you may benefit with taking work out of the equation.

My dad got very down after his diagnosis - I think it’s part of the process - it must be so shocking and so hard to come to terms with. PC can also cause depression which of course doesn’t help. I’m not sure I can give you any help with this, apart from saying just be there to listen to your mum when she needs to or wants to talk. Maybe mention it to the nurses (if she has any visits from them). I think my dad found it easier to talk to them about his worry’s sometimes.

I think maybe your mum doesn’t want you to tell people as this makes it more ‘real’. Give her time. We cannot begin to imagine what it must be like to be the person suffering with PC and we have to let them have control of the few things they still can control.

Btw - my dad didn’t lose his hair - not all chemo does that.

Wishing you and your mum all the best x

LST
Posts: 10
Joined: Mon Feb 04, 2019 7:14 am

Re: My Mum

Postby LST » Sun Mar 03, 2019 2:07 pm

Hi Kerry

Thank you for your reply. I did reply to you but some how my reply seems to have gone?

Anyway I’ll give you an update. Mum got her biopsy and was very sore afterwards. We saw the oncologist and she decided to delay her chemo by one week so we could get on top on the pain.

They increased her slow release morphine to 2 tablets but the increase make her really dizzy. So they changed the morphine to a different make and unfortunately that make mum really sick. So she’s had a week of feeling nauseous and just feeling rubbish. She’s back on the old morphine but on a reduced dose so it doesn’t make her dizzy but she’s in pain all the time. Surely that shouldn’t be the case? There must be something to make her pain free? But the palliative nurse has seen her and mum spoke to her today but she’s not changing anything. I feel completely lost as to what to do to help.

She starts her chemo on Thursday and I just want her to be well enough to get it. I’m feeling really down today about it all. I feel quite helpless.

Any suggestions?

Thanks

LST

PCUK Nurse Rachel R
Posts: 60
Joined: Thu Jan 25, 2018 10:52 am

Re: My Mum

Postby PCUK Nurse Rachel R » Mon Mar 04, 2019 2:06 pm

Hi LST,

I'm sorry to hear Mum's pain is not well controlled at the moment. I imagine you must be incredibly anxious for her.

Do give us a call LST or send an email if you would like to discuss directly with us - details below.

Kind wishes,
Rachel


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