A forum for any other issues around pancreatic cancer

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Fairy
Posts: 15
Joined: Tue Jul 24, 2018 9:25 pm

Time

Postby Fairy » Wed Jul 25, 2018 10:06 pm

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
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Time

Postby Veema » Thu Jul 26, 2018 9:27 am

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
Posts: 1016
Joined: Mon Jun 14, 2010 1:30 pm

Re: Time

Postby PCUK Nurse Jeni » Thu Jul 26, 2018 11:55 am

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
Posts: 15
Joined: Tue Jul 24, 2018 9:25 pm

Re: Time,

Postby Fairy » Thu Jul 26, 2018 4:44 pm

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
Posts: 15
Joined: Tue Jul 24, 2018 9:25 pm

Re: Time

Postby Fairy » Thu Jul 26, 2018 5:04 pm

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
Posts: 110
Joined: Sat Jun 09, 2018 4:17 pm

Re: Time

Postby toodotty » Sat Jul 28, 2018 8:14 pm

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
Posts: 15
Joined: Tue Jul 24, 2018 9:25 pm

Re: Time

Postby Fairy » Mon Jul 30, 2018 10:40 pm

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
Posts: 58
Joined: Thu Jul 06, 2017 4:29 pm

Re: Time

Postby Marmalade » Tue Jul 31, 2018 1:28 am

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
Posts: 15
Joined: Tue Jul 24, 2018 9:25 pm

Re: Time

Postby Fairy » Thu Aug 02, 2018 10:38 pm

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
Posts: 49
Joined: Sat Jun 30, 2018 11:16 pm

Re: Time

Postby Michaela1 » Thu Aug 02, 2018 11:49 pm

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
Posts: 24
Joined: Thu Jan 25, 2018 10:52 am

Re: Time

Postby PCUK Nurse Rachel R » Fri Aug 03, 2018 11:19 am

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
Posts: 15
Joined: Tue Jul 24, 2018 9:25 pm

Re: Time

Postby Fairy » Sat Aug 04, 2018 10:08 pm

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
Posts: 15
Joined: Tue Jul 24, 2018 9:25 pm

Re: Time

Postby Fairy » Mon Aug 13, 2018 10:54 am

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
Posts: 19
Joined: Wed Jun 20, 2018 7:22 pm

Re: Time

Postby Kerry » Mon Aug 13, 2018 1:00 pm

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
Posts: 15
Joined: Tue Jul 24, 2018 9:25 pm

Re: Time

Postby Fairy » Mon Aug 13, 2018 10:16 pm

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