Time

[Fairy]

I feel as if time has stood still. My mum was diagnosed with pc in January 2018 and given 12-18months to live without any treatment. She started palliative chemo in February and managed two rounds before neutropenic sepsis took hold. Got out of hospital in April. Was relatively pain free for a month or so and then pain took hold again. No further chemo allowed as it might kill her. She doesn’t want radiotherapy as offered maximum palliative dose of 25 rounds, said she didn’t think she could cope with it. I think I just need to put my thoughts out there with people who understand. Everyday I have to give her a clexane injection after work, I feel awful, it hurts her but I understand why she needs it. I spend all my time worrying about her pain, if she’s eaten at all, panicking in case she runs out of oromorph, never felt so overwhelmed in my life. Hospice support where they can but I’ve never felt so helpless or exhausted in my life and I feel guilty saying that because I’m not suffering anything like she is. I work full time and am the main breadwinner in our family with three kids., our lives are all affected, my kids hardly see me. Such a ghastly disease. I am truly shocked at how many people’s lives it affects. However I am amazed reading some posts on here how long people survive with stage 4, I had no idea it was possible. I just need to not give up hope that I’ve got my mum around for a while yet, I think I’m saying I’m trying not to count the months down, but it’s really hard. I’m saying my prayers for those in need.

[Veema]

Don't feel guilty. You are doing your best in an almost impossible situation. We've all had those guilty feelings that we aren't doing enough or what we are doing isn't actually helping much. But you can only do what you can. I'm sure there should be some additional support you could tap into, perhaps give the nurses a ring and see if they can suggest something. It will be no good if you can't function because you're exhausted.

Vx

[PCUK Nurse Jeni]

Hello fairy,

Thank you for your post, and sorry that you have ended up on this forum and that your family has been affected by pancreatic cancer.

I am sorry to hear how difficult things are right now.

Can I ask, do you know what chemo your mum has had? And has she had a second opinion from another oncologist at all?

It might be that the chemo she had was the very toxic combination, which causes neutropaenia, but there are other drugs out there which are not so toxic - has this been discussed at all?

Please feel free to email us or call us to discuss further. The contact details are in the email signature.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Fairy]

Veema wrote:

> Don't feel guilty. You are doing your best in an almost impossible

> situation. We've all had those guilty feelings that we aren't doing enough

> or what we are doing isn't actually helping much. But you can only do what

> you can. I'm sure there should be some additional support you could tap

> into, perhaps give the nurses a ring and see if they can suggest something.

> It will be no good if you can't function because you're exhausted.

>

> Vx

Thank you for your kind words Veema, I think it’s very hard to know what to do with everything that worries and concerns you. The last thing I want to do is add to my mums issues. I take some comfort from the support in this forum.xXx

[Fairy]

PCUK Nurse Jeni wrote:

> Hello fairy,

>

> Thank you for your post, and sorry that you have ended up on this forum and

> that your family has been affected by pancreatic cancer.

>

> I am sorry to hear how difficult things are right now.

>

> Can I ask, do you know what chemo your mum has had? And has she had a

> second opinion from another oncologist at all?

>

> It might be that the chemo she had was the very toxic combination, which

> causes neutropaenia, but there are other drugs out there which are not so

> toxic - has this been discussed at all?

>

> Please feel free to email us or call us to discuss further. The contact

> details are in the email signature.

>

> Kind regards,

> Jeni.

>

> Jeni Jones

> Pancreatic Cancer Specialist Nurse

> Support Team

> Pancreatic Cancer UK

> email: nurse@pancreaticcancer.org.uk

> support line: 0808 801 0707

Thank you, I have sent an email to the address listed above., I really appreciate the help.

[toodotty]

Hi Fairy,

I agree with the nurses, you need and are entitled to a second opinion. Clearly something is not right if after being given 12+ months to live that your mum has suffered so much. It can be a postcode lottery for cancer treatment and it is wrong that she has been written off so quickly. My diagnosis back in April was 4-6 months even with chemotherapy, and I went down hill very quickly whilst waiting for treatment to commence.

Also agree with the nurses that you should get extra help to support your mum at home. She is entitled to claim either attendance allowance or PPI allowance if still young which can be worth £150 per week and could be used to pay for extra caring support for her. Speak again to the nurses about this. It takes a bit of time and set up but they did back pay mine.

And yes, you will feel exhausted especially with a family to look after as well. Don't forget to notify your children's school when they go back, they can also be very supportive both of the children and of you. They are usually well trained at dealing with these situations in a sensitive manner. And don't be afraid to ask for help. My friends husband came and attacked the weeds in the garden, another friend organised a rota to come and groom my horse and give him some TLC. I also got a cleaner in to whizz around and knock the house back into shape once a week.

Most importantly of all, is find a bit of "me time", even if it is a half hour soak in the bath at the end of a day.

Take care of your mum, by taking care of yourself too.

toodotty,

xxx

[Fairy]

toodotty wrote:

> Hi Fairy,

> I agree with the nurses, you need and are entitled to a second opinion.

> Clearly something is not right if after being given 12+ months to live that

> your mum has suffered so much. It can be a postcode lottery for cancer

> treatment and it is wrong that she has been written off so quickly. My

> diagnosis back in April was 4-6 months even with chemotherapy, and I went

> down hill very quickly whilst waiting for treatment to commence.

> Also agree with the nurses that you should get extra help to support your

> mum at home. She is entitled to claim either attendance allowance or PPI

> allowance if still young which can be worth £150 per week and could be used

> to pay for extra caring support for her. Speak again to the nurses about

> this. It takes a bit of time and set up but they did back pay mine.

> And yes, you will feel exhausted especially with a family to look after as

> well. Don't forget to notify your children's school when they go back,

> they can also be very supportive both of the children and of you. They are

> usually well trained at dealing with these situations in a sensitive

> manner. And don't be afraid to ask for help. My friends husband came and

> attacked the weeds in the garden, another friend organised a rota to come

> and groom my horse and give him some TLC. I also got a cleaner in to whizz

> around and knock the house back into shape once a week.

> Most importantly of all, is find a bit of "me time", even if it

> is a half hour soak in the bath at the end of a day.

> Take care of your mum, by taking care of yourself too.

>

> toodotty,

> xxx

Hello toodotty,

Thank you so much for your comments. It’s so hard to know what to do for the best. I’m looking after mums house, doing her washing bed changing etc. Housework. Wish she would let me cook, prepare some meals for her but she says she can’t face food. In the last four weeks she’s gone from 7 stone 4 to six stone 7. Have to speak to dietician on Wednesday. Looking at everyone else’s experiences on here I had no idea treatment options varied so greatly. An operation was never an option for mum due to location and vessel involvement. Hospital discharged mum very quickly, hospice all the way now which when we were told felt very shocking. Far too quick. Trouble is I trust the doctors know what they’re doing.......I don’t. Thank you for taking the time to respond. I’m truly grateful xXx

[Marmalade]

Dear Fairy,

I'm so sorry you and your Mum find yourself in this position. Please do contact Macmillan Finance and get your Mums claim for financial support rolling if you have not already done so, their number is on the Macmillan website. You need for DS1500 from your GP or specioalist nurse and them Macmillan will do the rest over the phone. This money is for additional help at home, taxis or anything your Mum wants to spend it on. You may also be entitled to a carers allowance but again Macmillan Finance will help with any claim. This means that you can get someone in to clean and deal with laundry etc if that's what you want.

You may find it useful to read my thread "Our Journey without chemo" in the carers section if your Mum decides not to have treatment. Your Mum does not need to be in pain, between them the GP and the palliative care team can keep her comfortable but you need to establish a good relationship with them. PLEASE take advantage of any caring courses being offered by your local hospice whatever your Mum decides, they are really good at teaching you what to do to help the patient, what's available and what to expect as time progresses. They are brilliant at helping with side effects of chemo and other treatments. This gives you tremendous confidence in handling situations that may come up, knowledge about diet, tummy upsets, exercise, exhaustion and pain control.

You must not blame yourself for feeling overwhelmed, Veema is quite right, we all feel that way. This is a safe place to come and say how you feel without being judged.

I hope some of this helps, good luck and keep posting

Marmalade xx

[Fairy]

Dear Marmalade,

Thank you for your kind words. I’ve had so much frustration with gps who simply won’t help, it’s as if well in their eyes mum is “terminal” and quite frankly they don’t care.

Mum is going into the hospice tomorrow so they can try to manage her pain and little bit of jaundice. She’s struggling to stand at all and weighs only six stone seven pounds now, it’s heartbreaking to watch. I’m hoping if the hospice team can get her medication right mum might be able to return home with some quality of life.....here’s hoping. I am a carer by profession so that helps but I still have no idea what to expect as the disease progresses. Macmillan could be the answer, thank you.

You are all so very kind on this forum and I’m so very grateful for people to talk to.....it’s the toughest road I’ve ever been down.

Thanks again, take care,

Fairy.

[Michaela1]

Hi Fairy,

I am afraid i do not have any words of advice for you, but like you am taking great comfort in just being around other people who are going through this rollercoaster of a ride. I really hope they can get your mum comfy at the hospice, all I have heard is wonderful things about them....sounds like the best place to try get her pain under control so she can come home again. Keep us posted.

Michaela

[PCUK Nurse Rachel R]

Hi Fairy

I am glad to hear that Mum is going to the hospice for a time and I do hope they are able to get on top of her symptoms. Please do keep us updated. 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

[Fairy]

Oh my goodness.........no two days are the same. I was lucky to get mum into the hospice yesterday and I have never seen anywhere so marvellous. The nurses, doctors, volunteers are all amazing people and made mum so welcome. The doctor spent ages with us trying to assess mums needs and I felt huge comfort. Mum even managed to eat a little. I felt good. I handed over all the medication and our own home version of a m.a.r chart for their records, the control freak in me was struggling to relinquish her grip on “helping mum”. I went home last night comforted that mum was being looked after.

Today I was devastated to find mum not dressed when I arrived (as she had been the day before and fairly comfortable) and curled up on her bed in so much pain and very obviously jaundiced. I headed straight to the doctors station and mums lovely doctor talked to me saying they were adjusting her pain meds, I was hyperventilating because mum mentioned a syringe driver.......doc explained that it was just being used to dispense pain and nausea meds so mum doesn’t have to swallow them. I feel so gutted for her. The doctor explained that he’d taken bloods and following the results has requested an urgent scan for mum.....all he would say was that mum is very very poorly. The bottom has dropped out of my world.......I was hoping I had done “enough” to stop the thing inside her. Doesn’t seem like I have. I apologise for rambling I just can’t get it all down, so hard not to be able to talk to my husband, he hasn’t even acknowledged I’m home. I’m the sort of person who needs to feel listened to, like I matter too. Sorry everyone self pity kicking in.

I’m so hoping when I go in tomorrow the syringe driver has worked it’s magic and oxycodone (if that’s how you spell it) and metaclopromide have done their thing overnight. Mum looked so frail.

Thank you everyone for your kind words of support.

Night night

Fairy

[Fairy]

So, we are just over a week at the hospice and what a week it’s been. Mum improved on the driver with the increased meds, so the doctor thought he would see if he could get all the meds in a patch with a view to mum returning home without the driver. Poor mum, the patch was a disaster, she looked and felt horrendous, she was vomiting and sleepy, just so poorly, so back to the driver we go. The doctor spoke to me after seeing images of her ct scan, official results not in yet. Mum needs two stents.......a bile duct stent and a duodenal stent, doctor told me that these can be painful, uncomfortable and quite a traumatic procedure for someone as frail as mum. He explained he’d tried to talk to mum about it but she hadn’t seemed particularly keen. He told me that the images showed mum was full of food.....waste that wasn’t getting through the way it should and that he was worried about biliary infection. I feel as if I’ve been punched. I said that original consultant had said 12-18 month life expectancy, what happens if mum doesn’t have the procedure? He thinks mum may only have weeks. I know more than she does, it’s almost as if she wants to block it out bless her. I don’t know what to do with it all. I’m just so so sad.

[Kerry]

Fairy I’m so sorry to hear how poorly your mum is. I know the burden of having information and knowledge about the condition and not being able to tell her. I’ve had the same situation with my dad. I googled everything and found out as much as I could all the way along and my mum and dad didn’t want to know the details. At one point I was told my dad’s cancer was a rare squamous type. The consultant didn’t explain what this meant and I was horrified when I looked into it and found out it was a more agreesive form of cancer and the prognosis was even worse. I was concerned the chemo they gave my dad wasn’t appropriate but it was so hard to talk to my mum and dad about it. I felt like I had all this knowledge and had to decide which parts to share with them and when.

I found speaking to the nurses on this site really helpful. I also spoke to my husband so that I didn’t feel like the whole weight of it was on me.

My dad is currently in a hospice and is very poorly. I’ve questioned whether he would have made more of the time he had if he’d of known how short it was. I’ve also questioned whether it was worth him having chemo as it seemed to make him worse.

At the end of the day you make the right decisions at the time and I think sometimes people deal with it in different ways. I think if my dad had a crystal ball and had seen what was in store (and the time frame) he may have just given up on the day of his diagnosis. He had hope and he dealt with it in his way. In the end that is sometimes the only thing the person with PC has some control over.

Thinking of you and your mum x

[Fairy]

Kerry, thank you so much for your reply. I can so relate to all the “knowledge “ but feeling utterly helpless as to what to do with it. Unfortunately I cannot “talk” to my husband about anything let alone this. I’m feeling more and more alone. I’m not long home from the hospice and this afternoon the doc has spoken to mum and seemed to explain more (as far as she seemed to want to know). I’m not sure how I feel. The ct scan has shown the aggressive cancer has invaded her liver too and is causing the jaundice. Mum acknowledged that her stools are white now too. Doc explained the stent situation and mum asked me in front of him if it was ok that she didn’t have any further treatment other than to ease the jaundice and pain symptoms., what could I say? It is totally her choice of course but my heart is broken at the prospect. She cried after the docs visit and said she’d been in denial, I can’t imagine how she’s dealt with it up to now. I still have this nagging feeling I haven’t done enough......can’t shake it.

I agree I think the chemo nearly killed mum with the sepsis and everything.

I so feel for you, and I hope your dad is as comfortable as he can be.

Can’t thank you enough for your kind words and taking the time to offer some support.

Sending love,

Fairy

[sandraW]

Fairy, I am so very sorry to hear about your Mum. The feelings you have about not having done enough are what we all feel, because we love them so much we want to do all we can to help make them well again, but unfortunately we can't make that happen as much as we wish we could.

My husband was in denial too, that was his way of handling it, who can blame them, it takes someone very strong to face up to something so serious. I am sure your mum is frightened but I am sure the hospice will understand this and adjust her drugs to make it easier for her.

All I can do is send you love and strength to help you and your mum face this difficult journey, my husband in very similar circumstances to your mum, just went to sleep, it was very peaceful I wish the same for your mum, sending love and hugs sandrax

[Fairy]

Sandra,

Thank you so much for your kind words. I just hope as you say the hospice can find the right drugs to keep mum comfortable. Think that’s about all I can hope for. Sending you some love too, I’m sure losing your husband has been so very hard. Thank you for caring enough to post,

Love from

Fairy x

[Kerry]

Fairy please don’t feel guilty. The pain of seeing a parent going through this is more than enough to bear and from what you’ve said you can’t of done anymore.

I’ve said it before but this disease is cruel and wicked. We can only do our best to support our loved ones each step of the way and take each hour of each day at a time.

My poor dad has gone downhill today. The nurse spoke to me today to say he had entered the ‘deterioring’ stage and the doctor later told us he was now in the ‘dying stage’. Even though I knew it was coming it’s still so hard to take in. I’ve been offered some counciling at the hospice and I’ve decided to accept. I have so many emotions all mixed up and although I’m sure it’s normal I decided it may help to talk to someone outside of the family.

I truly hope you find some support and I hope your mum is kept as comfortable as she can be.

Kerry xx

[Fairy]

Kerry,

I am truly sorry to hear about your dad, there is no limit to this disease and it’s wickedness.

I think counselling sounds like a way to talk some of your feelings out, it’s so hard to know what to do with it all.

The hospice are talking about sending mum home next week if she remains stable over the weekend, part of me is pleased and part of me terrified at what comes next. Do I give up work to care for her as she deteriorates, how do I know when the time is right? Feels like I’m flailing around in the dark. Can I get the help at home that I need at the right time? No answers really, one day at a time.

Please stay in touch, sending you love at this very difficult time xXx

[Fairy]

PCUK Nurse Rachel R wrote:

> Hi Fairy

>

> I am glad to hear that Mum is going to the hospice for a time and I do hope

> they are able to get on top of her symptoms. Please do keep us updated.

> 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

Dear Rachel,

I am sorry to bother you but tonight I find myself at my mums, staying the night for the first time as she’s really not very well. She has her syringe driver with ranitidine, metaclopromide and oxycodone in it. She’s taking gabapentin too 600mg three times a day, lansoprozole and paracetamol. She fell yesterday trying to go to the toilet, I managed to get her up with a struggle and I think she’s lucky to have escaped with bruises.

Her appetite isnt great but she’s really only complaining of tightness around her tummy says she feels it’s gripping her. I have liquid oxycodone that I’m allowed to top her up with so one day at a time.

I am concerned about her urine though it’s so dark like mahogany......the hospice said that as her most recent scan showed the cancer had invaded the liver I presume it’s that that is causing the problem. This probably sounds daft but she smells different too, the jaundice is awful. She is sleeping all the time now, I’m hoping Marie curie nurses can help me overnight sometimes, I’m a wife and mum to three kids with a full time job, I have so much to organise. My head is overloaded.

I just hope she’s not in too much pain, she’s had enough now. Thanks for listening, Amanda xXx

[sandraW]

Fairy,

Just wanted to respond to your post, this is exactly how my husband was, it will be the jaundice that is causing the dark urine. And I also understand what you say about your mum smelling different too that also happened with my husband. I hope you can get some help, as its so tiring for you too, sending love and a hug sandrax xx

[PCUK Nurse Jeni]

Hello Fairy,

Sorry to hear about your mum, and that she has had a fall - just wondering, did you call the ambulance when she fell to make sure she was ok? Has she complained at all since then, or is there any obvious injury? Has the gp checked her over or not?

You mention the tummy feeling tight - does she have any fluid in her tummy at all, are you aware or not? And if so, has she been given any offer to treat this? Sometimes, fluid can accumulate in the abdominal cavity, and this can cause the tummy to feel tight - many would describe it as a "pregnant belly" or being tight like a drum, so to speak. Is she feeling uncomfortable at night trying to get into a comfortable position? Have you been using the oxycodone at all, and how often have you had to use it? Has anyone reviewed her medication at all?

As Sandra has said, the urine issues will be caused by the jaundice - do you know if she has a stent inserted at all? Is your mum just under the care of the gp now?

Have you had a referral done for Marie Curie? Are you able to see your own gp for some help with regards to some time off? It does seem as though you have a lot on your plate right now, and it might be good for you to have some time to allow you to concentrate on your mum right now.

Please do contact us at the below email address should you need to.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Fairy]

Dear Jeni,

Apologies for not replying sooner, I haven’t had a minute, but thank you so much for the reply.

If I’m honest I feel really down at the moment, mum didn’t want to go to hospital after her fall, we got her up, cleaned her up and back to bed. I did ring the hospice for advice and whilst they would have preferred mum be checked over mum did not want to spend a night on a trolley in a and e. Long story short, mums elbow and right arm were the worst casualty, huge bruise and swelling, district nurses have kept an eye and today whilst very black the swelling has reduced a little. She’s not keen to use it due to pain which is making movement difficult. Nurses agreed that the hospital probably wouldn’t do much other than sling and rest.

After a few days of struggling in and out of a queen size bed we have a hospital bed. I feel like crying, it doesn’t matter how I move mum I can’t find a comfy position for her as she’s got a pressure sore on her bottom and her spine, her arm is sore and the other arm has the driver in it.

Thrush in mums mouth is really bad.......so many mouthwashes nystan and difflam, fluconazole, nothing helps.

Mum stopped swallowing her paracetamol and gabapentin tablets yesterday, said she can’t do it anymore. The driver is dispensing ranitidine, oxycodone and metaclopromide. I’ve given her a couple of 2ml doses of oxynorm today and still she complains of tightness. I’m still doing the clexane injections, it’s all just miserable. The district nurses are asking does mum want to alter the meds in the driver and she’s saying no? Hospice nurses came in today and she didn’t want a wash and a change of nightie, she just let them help find her a comfy position, I just can’t seem to feel as if I’m doing “enough” it all feels inadequate, I just want her comfy and free of pain, can’t find the words.

Nobody has diagnosed fluid in mums tummy, no mention of that. Gp a waste of space, mum is an inconvenience to him, nurses are amazing, hospice reviewed her meds in August, they were great. Marie curie only available up to two nights a week, they arrive at 10pm, I get home about 10.45pm. I need to make packed lunches for my kids, tidy my house, wash myself, by the time I get into bed it’s time to come back to mum at 7am when Marie curie leave. Please don’t misunderstand me Marie curie are a blessing, I just don’t have any time.

I haven’t worked since Wednesday 19/09/18, no wages for me. My husband no help. I’m living in with mum. Nothing prepares you for this. My poor poor mum.

Everything aside, thanks for listening.

Fairy.

[PCUK Nurse Rachel R]

Dear Fairy

It's Rachel here. I am so sorry to hear about how tough things are for you and Mum at the moment. My heart goes out to you.

Please don’t feel inadequate, you are doing so much for Mum and am certain you will be caring for her so well. Mum will know how much you are trying your very best for her. There are things outside of your control but you are making a difference.

Not sure if you’re aware but you are entitled to some financial benefits. If you’re not able to work or even if a person is working less than 20 hours per week then you are able to claim carers allowance. Mum should also be claiming PIP (if she’s under 65) or Attendance allowance if over 65. Both these benefits are not means tested and go on health grounds. Your Mum may also be able to claim employment and support allowance (ESA). You may have already looked into this but if not contacting your nearest Macmillan Information and Support Centre would be a good step.

I’m aware that it might be better for us to have a chat on the phone or email privately so that we can try to help and support you. I appreciate how limited your time is but the offer is there. Contact details are in the signature below.

Thinking of you,

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Fairy]

Well, now I get to post what I was dreading posting. Mum passed away at 4.53pm yesterday 08/10/18.

The disease won. I have no words and have never seen or experienced anything like it. My heart goes out to all who continue to battle and to their families. I am lost.