Mum Diagnosed with stage 4 pancreatic cancer on 13th June

[worried daughter]

Hi Everyone, I am so glad I found Pancreatic cancer Uk,

To be honest, I don't know whether I am coming or going! My Mum has just been diagnosed with stage 4 pancreatic cancer, which has spread to her liver, this has come totally out of the blue, they thought she had IBS for years & then now this!

Yet another night with no sleep despite having sleeping tablets from Dr, I wish my mind would just switch off for a few hours at night like it's supposed to but oh no all it does is spin round n round thinking of my Mum & wonderin what the the oncologist means when he says a few weeks to a cpl months, it's a month since he said that on the 13th June!!!

She has had 3 sessions of chemo - I understand the chemo cant cure it, it's just trying to prolong her life a few weeks it's only a mild one called Gem.???.... something it doesn't make her lose hair.

It was just too late they said it could have been growing 10 years!! I'm so happy she isn't in pain but I'm watching for any flinch coz shes a tough one n will say oh im ok

.

She doesn't look any different whatsoever she just gets tired more quickly, I'm watching for her skin changing colour n having yellow eyes, there's none of that yet, her blood tests have been ok for her to have 3 sessions of chemo (prob coz I'm shoving berry smoothies down her left right n centre as they're supposed to help the red & white blood cells poor mum - good job she loves them lol)

The district nurse came for the 1st time to measure her up for a wheelchair last week so my hubby can take her out a bit (I have agoraphobia) then she asked if she wanted a Macmillan nurse yet my Mum said no not yet thank you, then asked if she wanted any Morphine tablets she said no, then the district nurse she said later on a special bed will come for her & will be put up in her bedroom.

It's just like a massive nightmare how can she be so ill when she looks the same but more tired!! I'm not ashamed to say I am absolutely papping myself with it all & having to be so positive & strong & making the very best of each day is now making me a bit weary especially with no sleep

We have to see the oncologist again who diagnosed her on the 18th July to see if chemo is working & is giving us a few extra weeks, if he says it's not working , what then??? Soooooooo scared for her! They say it happens really quick, one min they are ok the next not! I just don't know what to think, this taking it day by day is horrible!!!!

I'm so so worried about her she's 67 I'm supposed to go live with her in her tiny bungalow when she needs more help, but am absolutely terrified (I suffer with agoraphobia a clinical depression panic attacks etc) if she 'goes' & there is just me there I'll have a fit & dont think I can do it has anyone any idea how often macmillan nurses come & do they come in the night? I'm so sorry about all this panicking xxxxxxxx

[Bee]

Hi, welcome to the forum.

I am so sorry to hear your mum has been diagnosed, it's such an awful disease. Despite her diagnosis it soundslike your mum is doing ok, pain free and coping with treatment, which is great.

Gemcitabine is the chemo and it is generally well tolerated and as you said unlikely to cause hair loss.

Sadly you have no choice but to go one day at a time, i think everyone on this forum lives life for now. In our house we deal only in definite facts and stages of treatment, I find "what if" leads me to dangerous and scary territory so I avoid it all together.

All I can suggest is that you write down all your questions about treatment etc and ask at the oncology appointment and/or email the nurses on here. Also you could ask to meet the Macmillan nurses to see what service they offer etc as they are are also there to provide support to carers.

You must be exhausted and it does feel surreal after diagnosis, it still doesn't feel real to me. Try to look after yourself too and use the forum it's fab,

Take care

Bee xx

[LindaH]

Hi,

Please try ...number one...not to worry and ....number two....don't panic.

Okay, I was diagnosed with a 6cm tumour in my pancreas on December 4th having been taken into hospital on December 2nd with Jaundice and Diabetes.

Your mum will be on Gemcitabine ( I also take Cisplatin) and yes, it doesn't seem to have the affect of your hair falling out, but once cut - or shaved legs - it doesn't seem to grow back. By the way, I am a 59 year old female.

I think (only my opinion) if the Chemo isn't working, they may try giving your mum Cisplatin as well. Mine has spread to my liver, but mine has reduced in size both in the pancreas and the liver. I started my Chemo on March 1st. I really do not feel that her Oncologist will just 'give up' on your mum, it's not in their nature to do that.

It's really good news that your mum seems to be coping well with the Chemo and that she it keeping fit and healthy because that could be her saving grace. If she can cope with everything, she stands a good chance of prolonging the cancer from spreading further.

I (at the minute) feel fitter than a butchers dog and yes, tiredness does come into it, but when I feel tired I rest, but when I feel good I go for walks and try to keep active as much as I can.

It might be a good idea if your mum would change her mind and take advantage of the strength a Macmillan nurse would give her, simply by just calling to see how she is and just being there (on the end of a phone) if your mum should need some advice.

I know you're worried, after all, it's your mum, but you need to look after yourself. You certainly need sleep or you will become poorly through tiredness. Maybe your GP could give you a very mild sleeping tablet .... just for a couple of days....until your sleep pattern returns.

It's an awful time, believe me I know, but concentrate on making the most of the time you have together with your mum and with a bit of luck and a good wind, she may have longer than you think *fingers crossed*.

I am so pleased you came onto the PCUK site, the nurses are fantastic and the people are fantastic, I couldn't do without this site, so welcome and ask as many question as you want, the answers are here.

Take care ((hugs)) to your mum.

Linda x

[welshgirl]

Hi there,

Just read your story and I am in exactly the same position as you, my mother is 75 and was diagnosed last October with PC. She has been doing very well on her chemo but I found out today that it has gone to her liver!!!! My poor poor mother.

I too am finding it VERY hard to cope knowing that I'm going to loose her one day, I am totally devastated but what keeps me going is the fact that I have been and will be at her side each step of the way until she takes her last breath. Some people are not so lucky but I get strength from knowing this and from the fact that she will not be alone.

Keep your strength up, you now need to be strong for your mother.

Take care and keep in touch.

Nia x

[J_T]

hello and welcome. I'm so sorry to hear about your mother.

As Bee has said, its one day at a time. I'm sure you are going to be great looking after your mum, you will be surprised at the reserves of strength that you never knew you had.

Good luck.

Julia