Feeling totally lost

[Proud Wife]

Hi Shel

Have noticed that you've not posted the past few day. How is your mum doing? How is the confusion and have you managed to get her eating. Hope all is well with you?

Lots of love

PW xx

[shelda]

Hi P, I've just been so tired and falling straight to sleep this past week (must be the boxing) so haven't been doing my late night visits. Mums confusion seems to have cleared think it was dehydration, she's drinking more, not really eating still but she's been very down and sad these last few days and commented today that no-one listens to her mum has never been one for self pity so it's very sad seeing her like this, I said is it because she's worrying about her scan results and oncologist appointment on Tues?? Yet again me and my poor dad feeling completely useless as we just can't do anything to help her. It's awful isn't it as I just can't begin to imagine the pain/fear/etc that she must be feeling. Fingers crossed and positive thoughts for Tues I really hope it's not a bowel obstruction and I pray the cancer hasn't spread.

Lots of love everyone xxShelxx

[Proud Wife]

Hi Shel

Not surprised you are so tired, don't forget emotions take their toll as well and can really wipe you out.

I'm sure your mum is really worrying about her scan results and wishing the days away until Tuesday.

I too will keep my fingers and toes crossed firmly that Tuesday brings you some good news. Your mum certainly deserves it.

Take care and keep us posted. If I don't come back on again before Tuesday, the very best of luck to you all. Will be thinking of you xxx

[shelda]

Well not a great appointment today, oncologist said CT showed new growth in coeliac area and the pancreas tumor was slighter bigger and the decision has been made of no more chemotherapy, he said it causes too many problems with her platelets and magnesium levels so it's really affecting her quality of life they feel she'd be more likely to die from chemo complications or another infection, so they just want to get her as comfortable and pain free as possible. They finally agreed to the Creon, thanks Jeni for all the information I went in with.

I feel very numb right now and it's as if everything is hopeless, no coming back from this is there!!!

[boa]

This sort of news is very disappointing. From my husband's experience I think that chemo complications can be worse at times than the disease itself. Take time to enjoy being with your Mum and I'm sure the nurses and doctors will get her pain free and comfortable.

Catherine

[sandraW]

Hi Shelda,

Sorry to hear the news is not good this disease is truly horrific, as Catherine says just concentrate on spending quality time with your mum. take care, sandrax xx

[Proud Wife]

Hi Shel

I'm so so sorry to hear your news.

It's bad enough having to become a member of this forum family but hearing "no more chemo" must be horrendous. My heart goes out to you and your family. I really hope they can make your mum more comfortable now and as everyone says, concentrate on having quality time together. Easier said than done I know but try not to think too far in the future because all it will do is spoil the time that you have with your mum. It's taken me 11 months to realise that and I still have to remind myself each day not to think about the "what ifs".

Take care because we care xxx

[Guest]

Hi Shelda,

I am so sorry to read your latest post. I know what is feels like to hear No more chemo, and it is like a bullet to the heart. I hope so much that you are both able to have precious quality time together. Every second is precious, every single second.

Leila xx

[shelda]

Thanks for your kind words Catherine, Sandra, P & Leila....keep hoping that something will change sadly I know I deluded in thinking it will just go away!! Mum seemed to take the news in her usual brave matter of fact way and seemed alot brighter by the weekend, but then yesterday the vomiting started again whilst we were in Tesco bless her!!! She felt dreadful today and wanted to be left alone her Macmillan nurse is going out tomorrow so hopefully she'll be able to help. Hope everyone else is doing okay xx

[Proud Wife]

Hello Shelda

I'm so pleased you posted as I have been thinking about you and your mum and how you were doing. How is she feeling today, I do hope the Macmillan nurse has helped and your mum not feeling as dreadful. It's not going to go away but you are not deluded at all, you just care enormously. Having read some many stories now, I see that things can and do change quickly so fingers crossed your mum perks up really quickly and you can still enjoy some quality time together. xxx

[Guest]

Shelda,

I am so sorry you and your Mum are going through this, I really am. I am sure she doesn't really want to be left alone, she just doesn't want you to see her like this. She's your Mum, she is trying to protect you.

Leila xx

[shelda]

Hi all, sorry not been on for a bit, everything very hectic at the moment!! Mum isn't feeling great she is tired all the time not in pain as such but she just can't settle and get comfortable bless her. She heads back to the oncologist tomorrow I can't go though as I have my brothers little boy for the day. It's so frustrating as I think mum wants to eat but nothing tastes good and she just can't face it. I have two weeks to go until my charity boxing match for pancreatic cancer UK, so far I've raised just over £300!!! I'm off work for next two weeks so off for a mini break with mum and dad next weekend and hopefully spend as much time with her as possible xxx

[CurlyLittleMiss]

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.

[boa]

HI CurlyLittleMiss

I am sorry that you are another daughter with a Mum with a PC diagnosis but I think you will find support here. I have read a lot about how relatives feel when their loved one decides that they do not wish treatment. You are approaching this very well and I am sure that you are doing all you can to support your Mum. You are certainly not useless. You might like to start your own thread so we can support you.

Catherine

[sandraW]

Hi Curly Little Miss,

Welcome to the forum the place where no one wants to be, but where you will get lots of help and support.

I agree with Catherine, if you start your own thread, it is much easier to watch out for your posts, you could always copy and post your first post on to the new thread.

I am so sorry to hear about your Mum, this disease is just so cruel, I lost my husband Trevor nearly a year ago, It must be hard, to cope with your Mum's decision, but only she knows how she feels and we will never know which decision is the right one.

Don't worry about the ramble that's what we are hear for, for you to get things off your chest and hopefully get some help and support as we all know exactly how you are feeling.

The nurses on here are also a great source of support and knowledge, should you need to contact them, they are so approachable too.

Just being there for your Mum is the best thing you can do, we never feel as though we are doing enough, but I am sure you are doing all you can, its nice to hear you have a good boss too, as well as your family and friends around you.

I wish you all love and strength as you face this journey, take care sandrax

[shelda]

Hi curly, it's just awful isn't it and reading your words are just like someone has read my mind!!! I've found this forum my sanctuary when I'm at my lowest ebb, it took me a while to write in here but in some ways I wish I had sooner as the care and support is so genuine and heartfelt, as sometimes I feel very isolated and as I'm going thru this I find lots of my friends don't really understand and I can almost feel I'm boring them wanting to talk about mum and my fears!!! Mum got told on Tuesday she will no longer see the oncologist all her care will be handled by the Macmillan nurse, I feel like that's it, the waiting game well and truly begins, she's growing weaker day by day and seeing this is just tearing me apart, I can't focus properly, I'm so snappy and emotional and my husband just can't handle my mood swings I feel like anyday he'll just walk out and leave which do you know what right now doesn't bother me as he is being so unsupportive and sulking that he isn't my priority, really upsets me that when I need him the most he's failing me, is anyone else's partner like this or just mine!!! Oooo sorry that's a right rant, just need to get it off my chest. Love to you all xx

[Guest]

Hi Shelda,

I wanted to answer with regards to your husband. Before my Dad was diagnosed, I was a ' yes sir no sir' kind of person. I kept my thoughts to myself and was an all round nice person, let people walk all over me nice. When Dad was diagnosed, I couldn't be like that anymore, had to grow and backbone and fight with him.

I was so strong, that when I wasn't with Dad I was a raging ( better not say the word)!!! I would snap at anything my boyfriend would say, I also started swearing like a trooper. He couldn't take and would tey to walk away. I had so much anger and rage, I would follow him and scream and shout until I was breathless. He was rubbish, absolutely rubbish, until it mattered. I never expected him to be so good when my Dad's last week came.

I found it wasn't just him that let me down. My Mum and her side of the family were disgusting. I will never forgive my Mum for how bad she was while my Dad was ill.

Sadly, people that aren't in your situation, even though they are living with you, just do not get it. They do not understand what you are ging through. Your husband doesn't realise that it isn't him you are angry with, bit what is happening to your Mum and you need to get that anger out. , he will just see it a personal attack.

To stay strong for your Mum, you need to release your anger and your grief. I say grief as I believe that we do grieve, from diagnosis.

Take care and I hope your husband starts to try to understand how much you are hurting.

Leila xx

[shelda]

Thanks Leila, some days I feel like I'm losing my mind and I literally feel my blood boiling I'm that angry and I feel like I'm being the worst mum/wife ever, I have tried explaining to my other half and like you say they just don't understand. I feel one step away from having a complete meltdown, someone is going to say or do the wrong thing and I'll lose it completely and that scares me as I've always been very like you were Leila, I'd let people get away with anything just for a quiet life. I'm sat in floods of tears again now at your words as its comforting (strange word I know for the situation) to know it's a not just me that feels like this. Mum has been so calm and accepting of everything that's going on I feel a failure for not showing any of her strength, I love her so very much and I feel like I'm losing my best friend I try not to think much further than day by day as I'm absolutely petrified of what is in store for her, life can be so cruel I thought I had a least another 20 years to make memories, my 2 year old will barely have her own memories, life just won't ever be the same xx

[Guest]

Hi Shelda,

I really can feel your frustration and pain. You sound exactly like I did. I could feel my blood boiling, especially in my arms, it was like a torent. If someone had upset Dad, or Dad was distressed, or if someone, like my boyfriend, said something against my Dad. I wanted to smash something. The slightest thing would set me off. I think once, my boyfriend said my Dad was eating too much of the wrong foods, I literally wanted to throttle him. Stood up amd screamed in his face. Basically just being so over protective towards my Dad, who was fighting for his life.

You are not failing in strength, tou have to let these feelings out, and you can't do that in front of your Mum. That is called strength.

You are not a bad wife, or a bad Mum, you just love your own Mum. She has been diagnosed with this horrible nasty disease, which sadly she is not going to get better. You want to do anything and everything you can for her. That is a good person. Others don't understand this and it isn't happening to them. They don't know the fear and deep pain you are feeling.

And plus, you are having it extra hard, as you are having to be strong for your own kids, having to choke back the tears.

Life is cruel, but your love for your Mum is so clear, so your Mum will know how much you love her.

Will your Mum let you take pictures? Some pictures of you and her, and your Mum with your daughter?

Leila xx

[shelda]

Hi, well I did my charity boxing match yesterday it was scary and amazing I have so far managed to raise £730 for Pancreatic cancer UK with money still coming in I won charity champion for raising the most money. It was a close one I lost the match 29 points to 30!!!!

Mum sadly seems to have taken a real turn for the worse over the weekend, very confused and incoherent, restless and her tummy has ballooned, gp saw her today and says it's all fluid and she will need admitting into hospice for it to be drained. Can anyone tell me how they will do this will it be horrible for mum?? She is still not eating and drinking very very little, Dr says she is anaemic as well, she looks so frail and old, she's only 63 it's just not right. My dad is struggling as he is disabled himself so me and my brother are going to start taking it in turns to sleepover and help mum in the night as she keeps getting up and about at all hours she is confused thinking its morning then sitting downstairs in the dark and I'm worried she will have a fall or something. Plus I have started to worry about her taking her meds correctly so far she's been stubbornly independent about them even dad doesn't know what's what so I've written everything down, dosage, time to take them etc and I'm going to sort them into weekly pill boxes for day and night. Not really something I'd thought I'd be doing for another 20 years or so!!!

Leila mum is fine about pictures, I got some lovely ones whilst we had our couple of days away especially of her and the kids lots of memories.

[Didge]

Just a quick reply as on bus to work. Draining fluid is not bad experience and will probably make your mum much more comfortable xx

[Proud Wife]

Hi Shelda

Good for you! You are still a winner in everyone's eyes. If you want to post a link, I will happily add a little to your fund raising.

I am so sorry that your mum has taken a turn for the worse. My hubby is nowhere near as bad as your dear mum but his disease is progressing too so I understand how hard it must be on you. It's great your parents have the support of you and your brother and I think its a brilliant idea that one of you stays over. As you say, there is always that slight chance meds might not be taken correctly. Your dad is probably panicking seeing your mum so poorly as well as coping with his disability, it's not fair is it?

I am thinking of you and if you want to have a quiet "chat" over email or whatever, you only have to ask the moderators to pass on your details. I'd like to offer whatever support I can to you xx

[shelda]

Well things are not great and I feel I can't bury my head in the sand anymore in hopes this would all go away. I went back to my Dr yesterday as I lay awake all night knowing this fluid isn't a good sign and it's time I got signed off work to be with mum!!! I said to my Dr is it ascites and are we looking at weeks as apposed to months and she said after examining mum on Monday yes she's very weak and it's probably a few weeks. I am so scared and just want time to stop, I don't think my mum or dad realise how little time we may have and I don't have the heart to tell my dad what the Dr said yesterday, I have told my brother as its too much for me to keep to myself. I've been there most the day tidying and sorting her meds and also meeting Louise her Macmillan nurse, mum is suffering anxiety and said how scared she is as she's not ready to go, I've barely stopped crying since I got home as its the first time my brave wonderful mum has admitted she is frightened and there isn't anything I can do. This is all so hard I want more time it's not enough, but I don't want her to suffer either.

Thanks PW I'll probably take you up on that offer xx

[boa]

Shelda just a word of support and I know this will be a difficult time. My experience is to take each day as it comes and try not to worry. Sending warm thoughts to you. Catherine

[sandraW]

Shelda,

Your feelings are understandable, its all so scary, you think you can't cope but you can, these things come as such a shock, but then you absorb them and you will find you can move forward, the strength just comes from somewhere.

I also understand how you feel about not wanting your mum to suffer, but of course you don't want to loose her either its something we have all been through, and it is so hard, but you just have to go with the flow and try to make the best of the time you have left with her.

Your poor mum I am sorry to hear she feels worried and anxious, but perhaps you could have a word with the doctors and see if they can sort out some medication to help with these feelings.

Its good that you can get the time away from work to be there for your mum and dad, and hopefully when Mum's fluid is drained, she will feel much brighter. Sending you a big cyber ((hug)) love sandrax xx Well done on your fundraising too xx