My world has been turned upside down

[natty1976]

I have been looking at this forum for eight weeks since my lovely mum was diagnosed with stage 4 pancreatic cancer. Eight weeks ago life was normal my mum was her usual active self but had a problem with food, she just felt sick all the time, cut a long story short and a private scan for suspected gallstones our world fell apart. The next day after the scan we had a phone call from the doctor to bring mum in and we were told it was terminal, we were shocked my mum is such a good person she doesn't smoke, drink or even swear how could this be happening. That's when I found this forum but I never had the guts to write anything I think it has taken me this long to accept what is actually happening. Since the initial diagnose we have had two hopital appointments the last one was with the specialist who confirmed there is absolutely nothing they can do she had to stay in hospital for a over a week to sort her medication out and now we have her home. Every day mum seems to get weaker and weaker she is very yellow in colour and now can't move around at all, she hardly eats or drinks it's absolutely heartbreaking to see this happening, we now have a hospital bed in the living room, We have a very close family and my dad, sister and I are particularly with her all the time caring for her every need. I don't know how long this is going to go on for but any advice on how to cope with all this would be grated appreciated. The local authority have done all their care plans but all they keep focusing on is the "journey" is it wrong to ignore all this and just enjoyed every day with her why should mum have to accept what is happening? Anyway enough of me going on just wanted to make myself know.

[Sueoliver]

Hi I am sorry to hear about your Mum's diagnosis. It sounds so much like my Mum. Have you seen an oncologist? If she is yellow she may need a stent! Does she take creon tablets? You should ask to be referred to a specialist who knows about this sort of cancer. You could phone the nurses on here as they are really helpful. My mum was 76 when diagnosed and offered chemo! Do you have a local hospice who could help you ours have been wonderful. By local authority do you mean district nurses?

I'm sure if she could see an oncologist they would offer some sort of treatment that would be suitable for her. The jaundice needs to be dealt with please ring the nurses on here for advice.

Take care and please keep posting on here we will all try and help if we can.

Sue x

[natty1976]

Thanks for the reply. We were told at the hospital by the oncologist that we had missed the boat, that was actually her words no sten couldn't be fitted her liver is full of cancer, they were also treating her for two clots on her lung and it was later mentioned the cancer has spread there too. The hospice people ring once a week and ask if we are alright and the district nurse comes once or twice a week but to be honest she just writes in a folder. We are lucky to have a nurse living across the road she has been our angel she sorted out the bed for mum as well as advising us on things like bed sores. We just feel so helpless like we are watching her die. Mum is a very popular lady in the community and visitors have been constant I am starting to get angry now that they are fulfilling their peace of mind of seeing her where I want quality time with her. It's so unfair that we were normal only a few weeks ago.

Nat

[Sueoliver]

Hi Nat,

I am so shocked an oncologist would say that I would be upset like you. See if you can get hold of a community hospice nurse who will come out and see you all. Can you speak to your Mum about visitors maybe you could arrange it so there is only 1 or 2 visits a week.

This is a shocking cancer and I can feel your despair. Please contact the nurses on here as they are really helpful and lovely. Don't be afraid to pester the hospitals, nurses who see your Mum if you need advise or help.

My Mum is currently very poorly in hospital so I understand how you feel. How old is your Mum?

Seek all the help you can get and don't be afraid too. Stay strong.

Love Sue x

[natty1976]

Thanks Sue,

Mum celebrated her 70th birthday on the 13th of may. I feel for you having your mum in hospital it was only a couple of weeks ago for us when mum was in hospital, it's so restricting on times mum used to phone me from her hospital bed during the rest times and ask me to come and get her, the day room became our living room.

The community hospice people are there if we need them I know that but maybe it's because getting their help means accepting what's happening. My sister was very upset the other day she said she feels we know nothing even the everyday things like are we washing her correctly are we moving her the correct way. It's just all happened so quick.

On a positive hospital did a good job at making mum comfortable reassuring her and sorting out her medication so she is fairly pain free.

I hope your mum is improving and you are getting all the support you need as me and my sister say it takes someone to be really going through this to truly understand.

Nat x

[sandraW]

Hi Nat,

I really feel for you, with all you are having to cope with at the moment, of course its not wrong just to live for the moment and enjoy the time you have together.

I lost my husband 8 weeks ago and although he had surgery and then chemotherapy,and he had 18 goodish months and 1 not so good month at the end, when the end came it was very sudden. He went in for a drain fitting, which they did and just 10 days later he was dead. We knew that the cancer in his liver was increasing, and when he was in the hospice we found out there were suspect nodes in his lungs too, so very similar to your Mum. We were told by the hospital that there was nothing more they could do for him, that was when we moved to the hospice, for his last 3 days.

I would get the community hospice involved if I were you, I know its hard to accept, but get all the help you can in place just in case you do need it, to make your Mum as comfortable as you can, and just enjoy your time together.

Even though it is so hard to accept what is happening, I was just so glad that my husband didn't

suffer he to had good pain relief, and had a very peaceful death.

Sending you love and strength sandrax

[natty1976]

So sorry for your loss Sandra and yet you talk so positively , how wonderful that you still support others going through this when it is still very current to you.

The doctor came to see mum today and was surprised on how good she look (me and my sister still do her hair and make up everyday) the doctor talked about the hospice a bit more and I know if it gets too much and mum needs more professional care we will use their services.

Mum sleeps a lot and recently has began coughing up mucus I'm sure is is because she is lying down a lot now. I stayed with her for a few hours and I'm going back to watch the soaps with her this evening.

I think I'm over reading on the whole death thing I am constantly looking for signs I need to stop doing that and enjoy each day for what it is and not what tomorrow will bring.

Nat

[sheena]

Enjoy every moment together I'm scared as well I don't know how long my husband has left but I'm sure gonna make it a good day week month life is so horrid at times but we have to keep going for our loved ones t c x

[kittycat]

Nat, I know just how you're feeling right now. My husband was diagnosed in March and at first all I could see was the end and it was tearing me apart but now, although I know what's in store, I just appreciate every day we have together and don't think about tomorrow. If he has a bad day we just make the most of it and if he's a little better we try to do a little something. Life will never be the same but he's here now and that's what's important and I just want to look after him and do the best I can for him, although it is hard.

The support I've received on here has been invaluable and the nurses have given me excellent advice on how to control some of his problems and it does help knowing that you're not alone. Just keep doing your best for your Mum and take one day at a time.

Take care.

Sue

[Didge]

Nat, just a small tip. When I was young I had a lot of lung problems and was told never to lie or sleep on my back. If your mum is doing this it might be better to prop her up when awake and encourage her to sleep on her side or front. Didge x

[natty1976]

Thank you for your responses

The last couple of days has been awful I have stayed at mums for the past two nights she is so very weak and the nurse came in tonight and said in her experience it's not looking good.

My mum is so brave I am so proud of her.

Nat

[natty1976]

Sadly mum passed away in our arms yesterday she is now at peace and free from pain.

Nat x

[Guest]

So incredibly sorry for the loss of your Mum.

Leila xx

[Didge]

Nat, so sorry to hear about your mum. As you say, she is at peace and free from pain now. Xxx

[sandraW]

Dear Nat,

So sorry to hear of the death of your beautiful Mum, glad that you were with her, when she passed, take care sandrax

[jay]

I am so sorry Nat,

love Jayne

x

[kittycat]

Nat, so sorry for your loss. This really is a dreadful disease!

Sue

[Slewis7313]

Nat, so very sorry to hear your Mum has succumbed to this damned thing.

Steve

X

[EmmaR]

Rip Nat's mum xx

[Sueoliver]

I am so sorry to read about your Mum. This makes me so sad as my Mum is fighting so hard at the moment! Take care and look after yourself as well. Xxx

[PCUK Nurse Jeni]

Dear Nat,

We are so sorry top hear about your mum.

We would like to extend our sympathies, as a nursing team, to you and your family, and also to say, we are still here for you if you wish to speak to anyone.

Kind regards,

Jeni,

Support & Information Team.

[RLF]

Sorry for your loss Nat, im glad you were able to be there for her as she passed away. Big hugs x

[natty1976]

Thank you for your kind words 2.5 weeks on since mum left us and it still hasn't hit us all I can say is the horrible world of pancreatic cancer is fading and them awful weeks are slowly fading as mum's beauty and love for life is taking over. I have no regrets I am blessed we had mum home with us where she needed to be. Take care everyone xx

[sandraW]

Hi Natty,

I am glad you are doing ok, and that the bad memories are fading and you are remembering your Mum as she really was, and not the poorly Mum.

Its 11 weeks since I lost Trevor, when I think of him I do so with a smile, I can of course remember the short time he was in hospital/hospice at the end but just put that out of my mind and remember him laughing smiling and enjoying life, as he did.

Sending love to you all and stay strong but don't be afraid to have a good cry, I do, when something I see or hear brings back memories, but they are sad/happy tears if you understand what I mean take care sandrax

[natty1976]

Thank you Sandra

I understand exactly what you mean by the sad and happy tears. I do feel cheated and so sad that my children especially my 5 year old will not have mum around. I think I prepared for this as I was doing too well, the last two days have been awful but that could be to do with the funeral coming up on Tuesday I am hoping to speak. It's just so sad so many of us have gone or going through this.

I know it's early stages for me and my emotions are all over the place, 11 weeks is still no time for you too.

Lots of love Nat x