My Mum

[LST]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[Kerry]

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]

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]

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]

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]

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

[LST]

Hi everyone

Unfortunately my wonderful, loving, caring Mum passed away in 5 April. Not even 3 months after diagnosis. I am absolutely devastated! When she was diagnosed she said ‘I thought I had more time’ and so did I. In a blink of an eye she was gone.

Mum got one round of chemo. She was in a lot of pain but tolerated it well. The night before the second treatment she said she felt the best she had in months.... we had hope!

Next day the chemo was delayed due to low white cell count. Next day (Friday), blood tested again, still too low. Told to come back on the Monday. On the Friday afternoon I didn’t think mum was great, she was really dizzy. Phoned cancer help line was told to bring her into hospital. Turned out she had delirium! Caused by the strong pain meds, her body just couldn’t take the high doses of morphine. It was a terrible week, she was really confused, asking where my dad was(he died 9 years ago), not recognising me, sleeping lots, she couldn’t walk she was too dizzy and she lost so much weight. Very upsetting.

She got better (week and a half in hospital) but was was left very very weak. Hospital transferred her to Hospice to get on top of her pain. She was in there just a week and a half. The day before she passed away the consultant was talking about getting her home to build her strength to start her chemo again!

Next morning 2.26am the phone call came. I drove like a maniac to get to the Hospice but I didn’t get there in time.

We had been told we had potentially a year if she took chemo. We had hope! and it was all just cruelly taken-away so quickly.

I miss her so much! I’m so upset I didn’t get a chance to say goodbye. I feel so lonely in life without her as I don’t have any siblings or a husband. my anxiety is terrible and I’m not sleeping. There’s a huge void that I’ll never fill.

I really hope you get longer with your loved one x just make the most of each day, tell them daily you love them, as things can change so quickly. No one thought my mum would go as quickly as she did.

Sending my love to you all x

LST

[PCUK Nurse Rachel R]

Hi LST,

Rachel here, one of the nurses. I'm so incredibly sorry for the loss of your lovely Mum. My heart goes out to you for all the pain you're going through. Please do accept our deepest sympathies. I will email you directly, please don't feel you're alone.

Kindest wishes,

Rachel, Dianne, Nicci & Jeni

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[LST]

It’s nearly 8 months since I lost my mum to this horrible disease. I’ve had my good days and bad days but I’m really struggling with Christmas coming up.

I can’t bear to look at Christmas decorations or listen to Christmas tunes on the radio. I can’t believe I won’t ever buy a card that says Mum on it. I am reliving last Christmas in my mind and I’m sad and upset that it won’t ever be the same. Christmas cards have stated to arrive addressed to mum! With messages saying ‘hope you’re well, hope you’re looking forward to 2020’. Messages mum will never get. It’s upsetting.

I can almost accept how I’m feeling, I loved my Mum so very much and the pain of losing her some days is unbearable! What I can’t get my head around is those people who think I should be okay! People just don’t understand. I need my own time to grieve ! And that time may be longer or shorter than others, but it’s my time. And that makes some days upsetting, unbearable, unliveable.

I need to ask, am I the only one who feels like this 8 months on? Still missing your loved one and struggling with the first Christmas? Because some people are making me feel that I’m odd, nuts, unstable. Some people have said ‘its 8 months, your mum

Passed away ages ago!‘ Yet in my mind it’s just a blink of my eye!

I am seeing a counsellor to help me cope and she is great. She tells me it will take time and time will heal me. I’m just struggling to understand why some people, just don’t understand and make it so difficult for me to just get through each day and don’t understand I need some support.

I would love to hear from anyone who is going through the year of ‘firsts’ to share your feelings so hopefully I can feel that I’m I’m not the only one feeling this way xxx

LST

[sandraW]

Hi LST,

I'm so sorry that this truly horrendous disease took your lovely Mum away from you.

People just don't understand how the death of a loved one can affect you, and particularly when the death is much quicker that expected, and the passing so traumatic.

The firsts are always terrible first Christmas, first birthdays, first anniversaries, Its actually 4 years and 7 months since I lost my husband, we had been together for 50 years when he died.

I promised him I would be strong, and tried to be for his sake, think what your Mum would want you

to be, its so hard but it does get easier with time, hopefully you can think of your Mum with a smile,

and soon with laughter.

Don't listen to what the others say, just grieve in your own time and in your own way, you will get through it, it just takes time. take care sandra x