A forum for family, friends and carers of pancreatic cancer patients

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
CurlyLittleMiss
Posts: 23
Joined: Fri Apr 01, 2016 12:25 am

Dealing with Mum's diagnosis...

Postby CurlyLittleMiss » Fri Apr 01, 2016 11:10 pm

This is my post from earlier, copied on to here as I piggybacked on to another thread:

Hello all,

I hope you don't mind my addition to this conversation but the title caught my attention.

My mum was diagnosed with pancreatic cancer on Christmas Eve and since then "lost" is pretty much the word that sums up how I feel.

Her diagnosis came as a complete shock to all of us, as we'd been told it was probably gall stones causing her symptoms. Looking back now, I can see that's what her GP wanted it to be, but I cannot praise him enough for how quickly he got in touch and got mum back up to the hospital when her blood tests had obviously shown something else.

Mum ended up being in hospital for a month fighting an infection and having various attempts at procedures to insert a stent to help clear it. She has now been home for just over two months and my dad has done such an amazing job at taking care of her, but it still breaks my heart every day to see them in this situation. I'm struggling to cope with seeing my bubbly and lively mum having to summon the energy to get to the bathroom and having naps every afternoon.

Yesterday we went to Guy's to meet with her consultant to make a final decision as to whether mum had chemo or was discharged back to the local palliative care team. Although we knew she had already made her mind up, actually hearing her say to the Dr that she didn't want the treatment made it all become that bit more real that we are losing her.

The selfish part of me wants her to have treatment because she's my mum and is far too young at 59 to be going through this. The more realistic and level headed part of me knows she has made the right decision for her. Although she is weak and has lost a lot of weight, through sheer bloody mindedness and determination, she has got herself back to a stage where she can do a few more things for herself and doesn't want to lose that by putting herself through chemo which she has been told will make her feel ill. This is one of the only things mum can control in this horrible situation.

We obviously all want the miracle cure and get her back to how she was before, but we know that isn't possible. We just need to be able to enjoy the time we do have together and get her out and about when she feels up to it, visiting the places that brought us all happy times as a family. In her own words, she is 'content' and somewhat accepting of the situation. I think she has handled it better than the rest of us, but as she said, it's happening to her so only she knows how she feels and it's worse for the rest of us on the outside looking in.

I just feel so useless. I know I'm doing everything I can, but it just never feels like it's enough. I am lucky I have very supportive family and friends, and my boss is doing everything he can to help me, especially as we have my elderly grandfather to look after as well after his bout of ill health. It is all just so unfair. Mum has never smoked, barely drinks (although she did say a nice G&T would have been lovely the other day!) and has generally been in good health all her life. As horrible as it is, it is comforting to know there are others out there going through similar things.

I didn't realise quite how much I'd rambled on, but it feels good to get it all off my chest again. The local hospice has been good, providing a social worker/counsellor to come and speak with us and she always gives us a lift. She manages to get all the emotion out of you but still leave you with a smile on your face when she leaves.
CurlyLittleMiss

Posts: 1
Joined: Thu Mar 31, 2016 11:25 pm
Top

Fifi

Re: Dealing with Mum's diagnosis...

Postby Fifi » Fri Apr 01, 2016 11:18 pm

Hi,

Thank you for posting. A place none of us wants to be, but is the only place where we all understand more than anyone.

I am so sorry to read your Mum's diagnosis, and so very young. My own Dad was diagnosed at 61.

Has your Mum been offered chemo? I know it her decision and that chemo is tough, and it really can buy precious time. What has the consultant said?

How is your Mum's appetite? Is she taking creon?

This disease is just the cruelest and you have to be very strong at times. We all know what you are going through, you are not alone here.

Leila xx

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Dealing with Mum's diagnosis...

Postby Sueoliver » Sat Apr 02, 2016 8:12 am

Hi,
I am sorry to read of another Mum being diagnosed! My Mum, although older than yours, fought bravely for 19 months! You can read my story on the thread "Mum's diagnosis" . If I can be of any help at all I will try. I supported my Mum through the whole journey so I know how you are feeling right now.
Stay strong but look after yourself as well. Thinking of you.
Sue x

CurlyLittleMiss
Posts: 23
Joined: Fri Apr 01, 2016 12:25 am

Re: Dealing with Mum's diagnosis...

Postby CurlyLittleMiss » Sat Apr 02, 2016 3:11 pm

Thank you both for your replies.

Mum was offered chemo, but they said physically she was borderline where the negatives would outweigh any positives, plus the fact that she would have to keep going to Guy's rather than to one of our local hospitals put her off. She is very accepting of her diagnosis and wants to keep herself as healthy as possible so that she can enjoy herself, so felt that chemo wasn't in her best interests. Although I fully understand and support her decision, as well as knowing I probably would have come to the same conclusion in her situation. It still makes me so angry that there's nothing that can be done apart from making her comfortable when the pain gets worse.

Mum is taking steroids to help boost her physically and thankfully her appetite has come back with a vengeance (shares in Hartley's jelly will go through the roof soon with the amount she's eating!) and has to have daily injections of claxene(?) as she developed clots on her lungs while in hospital, but she is currently able to manage any pain with something beginning with 'f' I think-too many names to remember especially with all the medication my granddad is on too!

Mum Is able to walk and bit more and is wanting to go out, even if it is just for a walk around the garden. Mum is tough and stubborn despite her short stature and will give it everything she's got. In all honesty it's the infections that she picks up that remind you she is ill. When she has a good day you almost forget what's going on.
hopefully today is a good day :)

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Dealing with Mum's diagnosis...

Postby Didge » Sat Apr 02, 2016 5:46 pm

Go with what your mum wants. If she wants to go out or do anything at all, try to support her - never say "you're too ill, weak etc." in other words put your worries aside. My partner had 2 raucous parties in the last 10 days of his life in the hospice! And managed a full day at Silverstone less than a month before he departed. I do hope she has many more outings whether it is round the garden or somewhere further afield. That is what 'quality of life' is all about! Didge x

CurlyLittleMiss
Posts: 23
Joined: Fri Apr 01, 2016 12:25 am

Re: Dealing with Mum's diagnosis...

Postby CurlyLittleMiss » Sat Apr 02, 2016 7:40 pm

Didge, your partner sounds like mum's type of person!
I would also never dare tell her she can't do something, even at 29 she can still terrify me! But thankfully, she knows her own limits, she knows to pace herself and tries to have visitors every other day so she can have a 'lazy'day in between. CLM

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: Dealing with Mum's diagnosis...

Postby sheena » Sun Apr 03, 2016 7:44 pm

Hi sorry to hear about your mum .my hubby had a relatively good 10 months of doing everything he wanted .He is stubborn and pushed himself every day to do his own thing,sadly we are close to the end but he put up a good fight for 13 months.let your mum go with the flow I am sure she will surprise x

CurlyLittleMiss
Posts: 23
Joined: Fri Apr 01, 2016 12:25 am

Re: Dealing with Mum's diagnosis...

Postby CurlyLittleMiss » Mon Apr 04, 2016 4:32 pm

Hi Sheena,

I'm sorry to hear about your husband, but hopefully seeing he was able to do most of what he wanted is of some comfort. Mum is extremely stubborn and knows that only she can push herself-we know there is no point telling her what she can and can't do! She does set herself little targets for the day or week. Yesterday's was to sit at the dinner table for lunch, something she's not been able to manage since she came home. I know my dad was pleased not to have to eat his Sunday dinner off a tray on his lap!

I sometimes think because I see mum every day I don't always see any improvement (although the 'bad' days are certainly noticeable) so it is nice when we have visitors who haven't seen her for a few weeks and they say they can see the difference, it certainly makes her feel happier too.

I think having made a final decision about her treatment has been a relief. She hasn't got to psych herself up for trips to the hospital and can do her own thing. Mum being mum is still more concerned about the rest of us than she is about herself! CLM x

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: Dealing with Mum's diagnosis...

Postby sandraW » Mon Apr 04, 2016 4:53 pm

Hi CLM,

How you mum feels about things is the most important, and as a brave lady she will always worry about you all first before herself. good for her doing her own thing and being stubborn gets you a long way.
Its good to hear she is feeling stronger and lets hope we get some nice weather as a bit of sun always seem to make you feel better.
Take care of yourself too you will need to be strong for this journey, sandrax xx

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

Re: Dealing with Mum's diagnosis...

Postby Proud Wife » Tue Apr 05, 2016 6:53 pm

Hi CLM

So sorry to hear your Mum's story. 59 is far too young. Your mum is so very brave to refuse chemo but I can totally understand why she would want to chose quality over quantity. Such a hard decision to make but I am sure it's the right one for your mum. All we can do is respect what our loved ones want.

We are here to support you in any way we can.

Love PW xx

CurlyLittleMiss
Posts: 23
Joined: Fri Apr 01, 2016 12:25 am

Re: Dealing with Mum's diagnosis...

Postby CurlyLittleMiss » Sat Apr 09, 2016 9:51 pm

Proud Wife, as hard as it was to hear mum tell the Drs her decision, hearing them agree that it was the right one for her made things slightly easier.

Sandra, my mum is one of the most stubborn people I have ever met (can't imagine where I get it from..!) and is determined to do things her way, including cooking dinner when she can.
She has been in a little more pain this week, but thankfully she was only on a low dose of her painkillers so they were able to up the dosage for as long as needed.

Mum has had lots of visitors this week (she previously worked in a school, so all her colleagues who are on holiday have been booking in their slots!) and has pretty much told me to go out and enjoy myself this week, which has been hard, but I've managed. Although there were still those feelings of guilt afterward for enjoying myself when all this was going on.

I saw the parent of a friend of mine today, who coincidently had grown up in the same flats as my mum. We had the usual "how's your mum?" conversation and filled him in on the details since we had last spoken. I'd said that we were working together to make sure my dad wasn't shouldering the whole responsibility for everything and making sure he looks after himself, and then he asked me, "Who is looking after you?" It's one of those things, everyone says make sure you look after yourself etc, but then it struck me quite how much my best friend is looking after me right now. without him, I think I would have completely fallen apart months ago. Mum has always said you meet everyone for a reason and now I think I understand why we met when we did, so that he would know my mum before she became ill, in order to help me be strong enough now. CLM

Jim
Posts: 11
Joined: Sat Nov 08, 2014 10:20 pm

Re: Dealing with Mum's diagnosis...

Postby Jim » Sun Apr 10, 2016 2:01 am

Hi CLM

Saw your posts & we are in the same boat at the moment with our mum. Surprised how good her appetite is, I'd have thought it would be the other way but I'm glad as she is really enjoying her food. We are glad our mum is home now after a month in hospital.

CurlyLittleMiss
Posts: 23
Joined: Fri Apr 01, 2016 12:25 am

Re: Dealing with Mum's diagnosis...

Postby CurlyLittleMiss » Sun Apr 10, 2016 2:18 pm

Hi Jim, sorry to hear you are also experiencing a similar situation with your mum. I will say as hard as it has been, it has been so much easier to cope without the daily visits to the hospital. I hope your mum is glad to be back in familiar surroundings, it's certainly made a big difference to mum. CLM

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Dealing with Mum's diagnosis...

Postby shelda » Tue Apr 12, 2016 12:20 am

Hi CLM, I've not been on for a bit but definitely been thinking of you all. Everything such a rollercoaster with this cancer!!! Glad to hear you have some great support, I try to be very blinkered and focus on what mum needs, but I know I have good support if needed and this forum is definitely one of them. Love to you and your super brave mum xxx Shel xxx

PCUK Nurse Rachel C
Posts: 61
Joined: Wed Jan 14, 2015 4:25 pm

Re: Dealing with Mum's diagnosis...

Postby PCUK Nurse Rachel C » Tue Apr 12, 2016 2:10 pm

Dear CLM,

Welcome to the forums, although I do appreciate its not the place anyone wants to be. It is good that you have felt able to post, and I am sure you will find this a very supportive community and can see that you have made some bonds already.

I am very sorry to hear about your Mums recent diagnosis of pancreatic cancer, so our thoughts are with you and your family at this very difficult time. My name is Rachel and I am one of the nurses working for the charity and please do not hesitate to get in touch if needed.

As I mentioned above, I'm sure you will find this forum community a great source of support and comfort.

Best wishes,

Rachel

Pancreatic Cancer Specialist Nurse
Support and Information Team
Pancreatic Cancer UK
email: support@pancreaticcancer.org.uk
support line: 0808 801 0707