Feeling totally lost

[Linda G]

Hi Shelda, this is such a difficult time for you all. I agree with Catherine that the only way is one day at a time. Try not to think too far ahead and enjoy as much time with your mum as you can. My husband also expressed fear and anxiety and our MacMillan nurse spent some time alone with him enabling him speak about how he felt. He was reluctant to talk to me in this way as he knew it would upset me. There is medication that can help with anxiety, although Stewart declined it. As Sandra says you will find strength you did not know you had. Crying is very exhausting isn't it, but it's also a release valve. Don't try and keep it in. My thoughts are with you and your family.

XXXXX

Linda G

[shelda]

Thank you for all the good advice I'm kind of switched onto auto pilot now and taking things day by day, mum had an awful weekend it was so upsetting to see this once vibrant, bubbly lady unable to open her eyes properly, coordinate herself to drink and to be rambling incoherently. She had a blood transfusion on Sunday then 3.5 litres of fluid drained on Monday and she is more awake and there is less rambling, but she's still not great bless her. We've had my sons 10th birthday on Monday and it's my daughters 2nd birthday on Friday and she always said when she was diagnosed she'd have to see these milestones and true to her word she has.

I've added the link for my just giving page PW as asked hope that's okay with admin...up-to £800 for this amazing charity, that's £100 for every week I trained for my boxing match, I'm so pleased xx

Hello

Donating to my JustGiving page is easy - just follow this link and click Donate:

http://www.justgiving.com/owner-email/pleasesponsor/Michelle-Davies-Prev-Griffiths

JustGiving sends your donation straight to Pancreatic Cancer UK so it’s a quick and safe way to donate.

[PCUK Nurse Jeni]

Hi Shelda,

Thanks for posting an update about your mum - its good to hear that things are slightly improved anyhow - suspect there was some electrolyte imbalance, which seems to have been corrected, and she is feeling better.

Thank you for posting your link - and for your generosity.

Kind regards,

Jeni,

PC specialist Nurse,

Support Team.

[Proud Wife]

Sponsored! Always happy to support a fellow forum member who's more active than me for such a worthy cause.

So, so sorry Shelda to note that your mum has not be doing so well. I can only imagine how distressing it must be. Milestones are really really important so once your little one's had her birthday on Friday, I hope another one is set. Belated happy birthday to your son xx

[shelda]

And the rollercoaster continues, mum had a good couple of days following the draining of the fluid, a little trip to her favourite fish and chippy, she managed a couple of mouthfuls, but then by Friday she was feeling like the fluid was back and then yesterday she threw up pretty much all day and was very confused and unsteady again today....it's so so unfair seeing her like this (as you are all sadly aware) my dad has started to actually open up this past couple of weeks about mums illness which he'd refused to do and I'm glad he is finding a release now I'm worse if I bottle it up so goodness knows how he's managed this past 10 months. I'd really hoped mum would be here to see me turn 40 this year but I'm not hopeful, we'd planned to have a family getaway for a weekend of bbqs and a girly afternoon tea, I'm finding I'm getting upset about all the things we'll never do again....I really want to tell mum all the things I'll miss and that I'll always love her but don't want to cry and upset her, but I want her to know how lucky I feel to have her as my mum plus I want her to know this whilst she's pretty lucid...life is so damned unfair xx

[Dandygal76]

I have donated to you as well my lovely with my contact details if you want to talk. Just love and support each other... that is all you can do. The reactions and coping of everyone involved is so complex and so different, don't beat yourself up over any part of it. Your mum already knows how lucky you feel to have her as a mum. I promise you. x

[PCUK Nurse Jeni]

Hi Shelda,

So sorry to hear about this turn again, and that your mum has had a bad day with vomiting.

Shelda - you mention she had fluid drained recently - did they do any blood tests for electrolytes? (I am sure they did), which would show if there is any signs of dehydration there? If she is vomiting, then there is a risk of dehydration - and especially as you mention confusion - this is a classic sign of electrolyte imbalance within the body - often, it can be corrected by correct hydration, and also, if there is a specific electrolyte which is low or high, things can be done for this.

Its difficult when a person is having large amounts of fluid taken off to keep that balance in the right proportions, and this might be whats happened. Maybe she could have a quick check up? Just to say also, sometimes, a person can end up vomiting if they have a blockage in the bowel (obstruction) - has this ever been mentioned?

I hope that you can find some answers to solve the vomiting, as its really distressing and draining for your mum.

Do contact us if you have further questions.

kind regards,

Jeni.

Pancreatic Cancer Nurse Specialist,

Support Team.

[shelda]

just when you start to pick yourself up, you are knocked right back down!!! I've just got home after being in a and e since 8.30 Monday night, took 5 hours to see a doctor but once he started things moved quickly. She'd begun to throw up dark green liquid in small amounts but by 6pm there was roughly a litre!!! Mum was in alot of pain too and very distressed!!! It took till 6am this morning to settle her and get her comfortable....after ecgs, vitamins, fluids, antibiotics and god knows what else she had a couple of scans which show the cancer has metastasised to her liver and her kidneys are in failure as a family we took the decision in discussion with Dr, do not resuscitate as the high levels of potassium put her in danger of heart attack and no invasive treatment of the kidneys as the only way to help is dialysis and that's just not fair when she's suffered enough already!!! We are looking at days now and I'm just beside myself we all are. I'm so mad as Dr said her kidneys are so bad as severely dehydrated, I've been telling the oncologist, Macmillan and our gp for months she's not drinking enough but because mum argued she was they took her word not mine and didn't do iv fluids, I could really punch one of them!!! Going to try for some sleep now before heading back tomorrow xx

[boa]

Shelda, I'm so sorry to hear this. You have done brilliantly to support your Mum. I'd just like to comment on what you say about your Mum not drinking enough but your Mum saying she was. One thing, amongst many, I learned whilst supporting my husband through his journey was that it was very easy to 'take over' and try to make decisions for him. But I think it is important that we let the person express him or her self. So please try not to hold anger and recognise that you have given you best to your Mum. I hope you find her more settled today.

Catherine

[Sueoliver]

Hi Shelda,

This sounds so familiar to my Mum I wanted to reply! Mum had the vomiting several times just like yours and stayed in hospital on IV fluids! My Mum had surgery to unblock her stent and bypass the blockage this definitely gave her more time and she managed to go to her granddaughters wedding. This might not be possible for your Mum but it's worth the question. Recovery is hard though Mum was in hospital for 3 weeks! They told us several times it was days or hours but Mum always proved them wrong!

It may be that your Mum is too unwell but never give up hope and keep asking all those questions. I never stopped asking the Dr's and nurses. Also look into the possibility of her being transferred to a hospice. They are truly wonderful and make such a difference.

I am thinking of you and I know exactly how you feel and what you are going through! You have done everything you can for your Mum just be there.

Stay strong and I hope things are a little better today. This disease has so many twists and turns. Keep asking those questions!

Thinking of you,

Love Sue xxx

[Proud Wife]

Hi Shelda

I am really upset to read your update. I wish I could offer you words of wisdom but all I can do is pledge my support. I can't tell you how sad I am to hear of your mum's decline.

I have had some amazing support from some really lovely kind people but most have already lost their loved ones. I think it's fair to say you are the first person I've connected with that is now moving towards the end of their journey although as Sue says, there are so many twists and turns, your special Mum may well surprise you yet!

All I can say is, speaking from the heart, I hope your mum does not suffer a lot more and is comfortable. I just feel your pain, especially for your mum and of course your Dad as well as you and your family.

You will be in my prayers tonight xx

[shelda]

Thank you sue & Catherine, well considering yesterday they said mum probably wouldn't come round again she did, we've managed to get her into a lovely hospice this afternoon and it's so peaceful and calm there I feel easier this evening. Dr's keep reiterating she's not going to improve but I tell you what she's not going anywhere without a fight, she's had a couple of little conversations asking was she in the poo without a shoe but we think she meant up shit creek with out a paddle!!! She has asked a couple of times could she go home and was she dying

Someone definitely has it in for us though as my poor dad had to be rushed to hospital this morning (he'd only just gone to have a quick shower) with a dvt!!! Honestly never rains but it pours!!!

PW, I totally get where you are coming from I almost feel I'm chatting to my aunty with you I will ask for your details so I can private message you, thank you for praying for us we could definitely use some help. Hope all is okay with proud hubby's chemo treatment...so unfair we are all going/gone through this dreadful disease xxxx

[boa]

Shelda, so pleased your Mum is in a lovely hospice. She will be very comfortable there. So sorry to hear about your Dad. Keeping you in my thoughts. I hope you find your Mum peaceful today.

Catherine

[sandraW]

Shelda, Sorry to hear your dad is now not well too, I hope he improves soon, as you say it never rains but it flipping pours down.

Glad to hear you have got Mum into the Hospice they certainly are amazing places, and as you say you can relax a bit more now, as you know she has people there 24/7 should she need them, and just spend quality time with your Mum. She seems a strong lady, and lets hope she surprises the Drs with her fight back.

Our loved ones seem as though they make their own minds up when they leave us, the Drs can only read the charts and look at the test results, and give us their views, they told me Trevor would die a full 8 days before he finally passed.

Sending you love and strength for the next step in this awful journey, sandrax xx

[PCUK Nurse Jeni]

Hi Shelda,

So sorry to read your recent update about your mum.

Very hard for you - I remember the first email you sent on the day she was diagnosed.

Its great that she has been moved out of the "hectic" environment to the peaceful surroundings of the hospice - she will be well cared for there.

Thinking of you all.

Jeni,

Pancreatic Cancer Nurse Specialist,

Support Team.

[Proud Wife]

Hi Shel

Stupid question, how are you today? How's things your end? What's this I hear now about your Dad? Is he still in hospital? That must be truly awful for all of you and I bet your Dad feels terribly frustrated that he can't be in 2 places at one time.

I would love you to make private contact. I have very little family and would love an adopted niece! Just ask the moderators to pass on your email address to me and we can natter day or night my lovely.

As hard as it is, keep up the spirit. Easier said than done I know and don't get me started tonight on how vile this disease is.

Hugs and kisses to you all xxx

[Linda G]

Ah Shelda, so sorry to hear about your Mum. Its good that you managed to get her a bed in a hospice. You know she will be cared for in every possible way. The staff become like family and make you all feel loved as well as cared for. My thoughts are with you and your family. Wishing your Dad a speedy recovery .

Linda G

XXX

[shelda]

Lying in the recliner next to my beautiful brave mum so I thought I'd touch base with my lovely brave fellow pc warriors. Mum is fighting with her all to stay here with us, she's relatively pain free I'd say 90% of the time but she's so uncomfortable and has terrible trapped wind. She has barely eaten or drank anything for 3 days now, she is wanting hugs and kisses everytime she manages to wake but bless her she is so weak she can't lift her arms round us, I feel like she can hear everything that is going on but doesn't have the strength to wake properly.

The staff here at the hospice are absolutely amazing, I can't believe the level of care for mum and also me, my dad and brother are receiving they truly are angels and I don't think I could ever thank them enough for what they are doing.

Cancer really is a cruel and relentless disease I'm so angry/sad watching what this disease is doing to mum. Considering the Dr in a and e thought she wouldn't see the week out or interact with us again, I feel so lucky she's been awake I've been able to say all I'm thankful for in having such an amazing mum who was also my best friend and thank her for all the precious memories I have from our life together, we've also had more cuddles and kisses than I thought we'd have a week ago.

This ticking clock feels physical, with every hour that passes it's an hour closer to being without her and it hurts, my stomach is in knots as I just don't know how I'll carry on without her, I know I have to for my own children but I'm feeling so much pain and it's getting harder to keep it inside.

My poor dad is really struggling, he thinks mum is upset with him for not taking her home I want to cry everytime I look at him.

I just wish if a person has to have cancer or any other terminal illness why can't it be pain free, no suffering but you get given an expiration date almost...so you can enjoy the time you have left, still eat, drink, remain mobile because watching mum suffer and become unrecognisable is so so cruel.

xxxshelxxx

[Proud Wife]

Hi Shel

So pleased you post, have been thinking of you and wondering how your mum was doing.

You keep talking to you mum, even though her eyes may be closed and you think she's sleeping, I'm sure she will be listening and hearing you. They say that hearing is the last to go.Your last paragraph has just brought tears to my eyes. So very very true.

Wishing you all strength during this horrible, horrible nightmare.

Lots of love

PW xx

[boa]

Shelda! Thanks for posting. Though this is a very difficult time, it's also very peaceful from what you say. Try to reassure your Dad if possible because the way in which you describe things suggests your Mum is content where she is. Catherine

[sandraW]

Shelda, as PW says keep talking to your Mum, its all so hard and so scary but you will find the strength from some where to carry on I promise you will.

I understand exactly how your poor dad is feeling too, Trevor wanted to go home, but it wasn't possible for him either, I really do think she is in the right place, but I still regret not being able to bring Trevor home, please send your dad my love and tell him he is not failing his lovely wife in any way, sometime these things are just taken out of our hands.

sending a cyber ((hug)) love sandrax xx

[Guest]

Hi Shelda,

Your post is so very raw. I know those feelings all too well. I too sat with my Dad all the time, I would just watch his chest rise and fall, we take life for granted. I knew I was never leaving that hospital until my Dad had passed away. I once read that grief could be a physical pain, and it definitely can.

Sounds like you have had precious moments with your Mum, and in time they will bring you comfort. I promise you that your Mum can hear you. She will know you are there and she will take great comfort in hearing your voice. Keep talking to her, she can hear you.

I understand how your Dad feels bless him, but sometimes there is nothing you can do. My Dad always told me he didn't want to die in hospital, and I tried so hard to get him a bed at a hospice, but by the time I did, they said he wouldn't be able to handle the stress, but it was my call. I kept him in the hospital. All I wanted was for him to be comfortable, and I was always there, so I hope that was enough. It is something I regret, but I hope he knows I had his best intentions at heart.

Cancer is cruel, and our loved ones don't deserve it. There is so many bad people in the world, and they get an easy ride.

As I have said times before, when my Dad first passed, a nurse put her arms around me and said " He only takes rhe best ". I just wish my Dad and your Mum wasn't one of the best.

Thinking of you and your family.

Leila xx

[Linda G]

Hi Shelda, my heart is breaking for you reading your post from last night. It,s so hard to sit there and watch one you love suffer and disappear before your eyes. It seems hospice staff are fantastic wherever you are. Stewart (my husband) was in a hospice for three weeks before he died. We wanted to be at home and I felt so bad that we couldn't be. Before he went to sleep for his last 12 days we talked about it and we both realised we could not have managed his pain and other symptoms at home and accepted that the hospice was the next best place to be. Make the most of the time your Mum is awake and responding, it's lovely that you can tell her all she means to you and your family.I talked to Stewart constantly during his last 12 days and I have to believe he could hear me. It's good that your are with your Dad and children as you can support and help each other- love is love no matter what the relationship. My heart goes out to you all at this difficult time.

Regards

Linda G

XXXX

[PCUK Nurse Jeni]

Thinking of you Shelda.

Jeni.

[Proud Wife]

Me too xx