Mums terminal diagnosis. 4 months to live. i need support!

[budgie10]

I hope I am posting in the right place and apologise in advance for the long post!

My dear Mum has pancreatic cancer and today we have been told she only has around 4 months to live.

A bit of background info- Mum was a fit and active 65 year old who up until June was fine. She started complaining of backache and feeling full when eating. My Dad persuaded her to visit the doctor who ordered blood tests which came back showing raised liver enzymes. She then quickly went downhill and stopped eating, was spending all day in bed and became dehydrated and jaundiced. She was taken into hospital mid July where numerous tests were done and it was discovered she had a tumour on the pancreas. At this point we were told it was 2cm and inoperable due to being too close to blood vessels. We were also told she would have around 12 months to live. They fitted a stent which did help alleviate the jaundice. She was sent home with creon, build up drinks, morphine and anti sickness tablets. She has spent pretty much all of the summer in bed, eating and drinking the bare minimum and sleeping the majority of the day. She also had several visits to hospital after getting dehydrated twice and for a 2nd endoscopy.

Today we had the appointment with her oncologist. I feel like our whole world has fallen apart. He told us the tumour has grown a centimeter and is aggressive with Mum now only having around 4 months to live. He reiterated that surgery is not an option and offered chemotherapy. He said however this would not improve her quality of life- simnply extend it by around a month. She has agree to give it a go and her first session is booked in for next week.

My Dad has been absoloutely marvellous in dealing with this but I feel so lost as to know what to say to him and my Mum. I am an only child and do not live with them (although not far away). I am 30 and live with my partner and our 2 children aged 6 and 4. I am also pregnant with our third child due in April next year. Today's news has crushed us all knowing that Mum will probably not be here to meet her third grandchild. I know the news is still very raw but I do not know how to cope. I am devastated she will not meet this baby, and do not know whether to tell my children that Grandma is poorly. They are too young to really understand it all.

Mum's quality of life is so poor and the oncologist today said this will only get worse and there's nothing they can do to help with this. it is so hard to see someone who was so full of life, always out and about to now just spending all their time in bed waiting for the inevitable.

I'm not even sure why I've posted on here! Guess it's good to vent sometimes and would be lovely to hear from some other people going through this same absolute nightmare. xxxxx

[Proud Wife]

Hi Budgie10

So Sorry to have to welcome you to this forum. I am sure you will get all the support you need.

First of all, PC affects everyone in different ways and no-one knows how long they have left. My hubby was given 3-6 months and survived 14 months.

Provided your mum is fit enough for chemo and will to go for it, then you never know, without wanting to get your hopes up, it may just give her a bit of extra time - nobody knows how she will respond to it to be fair and a 3cm tumour to me doesn't sound that large. My hubby's was bigger than that on diagnosis with multiple large liver mets. I presume your mum has metastatic disease - i.e travelled to distant organs? The 4 month prognosis would seem to indicate that. Do you know where the mets are and you haven't said, was a biopsy taken?

It is an absolute nightmare and nothing I can say will make it better. All I can say though is that you will find that inner strength from somewhere to cope with this. My son was 4 days off his 21st birthday when his beloved dad died a few months ago and he has been amazing. He was absolutely broken when he heard the news but has been an unbelievable tower of strength. You can be too! I would speak from the heart to your mum and dad - your mum will give you an indication of what and far ahead she wants to talk about.

With regard to your children, I can't answer that because I just don't know but others on here have gone through or are going through the same and I'm sure they will give you their thoughts.

Stay strong and take care of yourself, by my calculations you are newly pregnant and your health is important too.

Lots of love

PW xx

[Guest]

Hi Budgie10,

I am so very sorry that you are going through this. You will find many stories on here that will help you understand how things may pan out and how others are coping or have coped. The prospect of losing your Mum is always going to be hard no matter what takes her and whether we know or don't know in advance it is horrible.

All you can do is encourage your parents to engage with the palliative care team locally as well as the hospital because when there is no more chemo you will need them. Take advantage of caring and coping courses so you can help care for her. Collect things in a memory box for the children for later but above all, make all the time you have left with her as good as it can possibly be.

You will never be alone on here and the nurses are brilliant if you need professional support. From now on we will be walking with you on your journey and nothing you say will ever be wrong. Our arms will wrap around you when you need us and sometimes when you don't. Much love M xx

[Dandygal76]

Oh sweetie, how terrible for you to receive such news about your lovely mum. I am on here because my dad who is 63 has this terrible cancer. He was also fit and healthy and it was such a shock to us. It really would help if you could say if the cancer has spread outside of the pancreas and also if you have access to funds there may be more options to help your mum. Also, is your mum getting Folfirinox for her chemo and has she not had chemo before? No one knows how her tumour will respond until she actually has it so I am surprised the oncologist is being so certain in his pessimism. My thread is called "Thank you and our story... be we are not that far yet." You will see what we have been trying to do to extend my dads life and touch wood he is doing okay.

We all get the coming on here to vent and it does help so much. You vent away and any time you want to and we will be here listening to every word and offering you our support. And remember, you do not have to stick with that oncologist, it is up to your mum where she is treated and it never hurts to get a second opinion and have a good google for a more forward thinking oncologist. I find it shocking he has stated that your mums quality of life will not improve and nothing can be done to improve her quality of life. Do you have a Macmillan nurse or access to a hospice outreach nearby? Your mum should not have unnecessary suffering and there are lots of things they can do to improve quality of life. The big turning point for my dad was definitely anti depressants and I really would recommend broaching that with mum.

Much love x

[Veema]

Obviously I don't know your mum at all, but from what you've mentioned the oncologist sounds pretty negative...yes it's a horrible disease, yes it's not curable without surgery and even then there's a very high chance of it returning, but chemotherapy can keep the disease stable for several years and it can even reduce tumours away from blood vessels as in my husband's case. We've had a good 2 years since diagnosis and luckily the chemotherapy hasn't affected him that much at all.

Don't give up hope and you are entitled to a second opinion.

Vx

[Justamo]

Hello Budgie,

How are things today ? Do you feel a little bit more settled knowing that there are lots of people on this forum who know exactly how you feel, and want to help you ?

I was thinking about you this afternoon, I know what it's like to lose a Mum. Mine died of cancer too, and she was such a strong, clever and multi-talented woman. It seemed unbelievable that she could just die and leave Dad and me - even though I was 35 at the time I still just wanted my Mum. And when I had cancer myself 23 years later I still wanted my Mum.

At 4 and 6 your children are much too young to grasp the concept of loss; a friend of mine told her children that "Grandad had gone to sleep". They were terrified every time their Mum and Dad went to sleep after that. Another friend told her children (a little bit older than yours) that GranGran had gone "Up to heaven with all the angels". The children released helium balloons for GranGran after the funeral.

You must keep strong for your family and for your new baby. Don't hesitate to ask the nurses anything you want; they are amazing and never seem hurried and rushed if you phone them.

Thinking of you my dear.

Love

Mo

[PCUK Nurse Jeni]

Hello Budgie 10,

I am sorry that you have ended up on this forum, with such sad news regarding your mum. Apologies for only replying to you now, also, due to a couple of busy days on the support line.

I can see that the brilliant forum family have given you some excellent replies so far, and as nurses, we would agree with the comments regarding chemotherapy - it would not be the first time that we have heard from folk who have been told that chemo will not provide any significant benefit for quality of life or prognosis. This is not strictly the case for many of the people who use our service or forum for this matter. Many times, although of course not in every case, chemotherapy works reasonably well, in particular when it comes to symptom control, and quality of life. And, as PW and Veema have said, also in extending lifespan - although any extension is of course, never long enough - but, on many occasions, at least longer than what is first predicted. As many of the forum users have experience of.

Its good that your mum has decided to try the chemo at least - if its torrid, then she can always stop - but, heres hoping it will make a great difference to her.

Also agree with PW - 3cms is not a large tumour - I think probably more of the issues with how debilitated your mum is is the fact that she has hardly eaten over the summer - I wonder who was managing your mums symptoms over this time, and as per Dandygal, was her mood taken into account given that she had taken to bed? Was there support from a Community Macmillan Nurse? Was your mum supported by a dietitian?

I can imagine how hard it is for you being pregnant and the emotion around this, and thinking that your mum will not meet this baby - we cannot say for sure if this is the case - it could be that she responds well to chemo - it would only become apparent by trying the chemo and seeing how it affects her, and what impact it has on the disease.

Macmillan have resources such as story books about what to tell your children - whatever you decide to do, being simple but honest is a key, as children, although young, can also detect when folk are upset etc....May I point you in the direction of a wonderful charity which helps children in such scenarios - called Winstons Wish. http://www.winstonswish.org.uk/

(It says bereaved but its not just for this - its for those affected when a loved one is given a life limiting diagnosis as well Budgie).

Finally, please do feel free to contact us should you wish to, at any stage - our email address is : support@pancreaticcancer.org.uk

Kind regards,

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[budgie10]

Thank you for all of your lovely replies. It is very comforting to hear your kind words. I apologise for not replying sooner- it has been a manic week with one thing or another!

The chemo is booked starting this Tuesday. She will be having Gem Cap. 3 weeks on and then one off. Does anyone have any positive experience with this particular type?

The few of you who mentioned the pessimistic oncologist are definitely right. We mentioned the research we have done on clinical trials, nanoknife, proton beam etc and he was very dismissive. Money is not particularly an issue for my parents and they would be willing to try anything but where do you go next if the oncologist isn't interested?

As for McMillan, they apparently do not operate in our area and directed us towards Force who I believe Mum has now been in touch with. Mum's gastro nurse at the hospital has also now made a referral to the local hospice nurses who are coming out to see Mum at home on Monday before chemo. I believe this will definitely help. It's just a shame its taken a few months to get this put into place!

Thanks Nurse Jeni for your link to winstons wish. I will definitely have a look at this in a minute.

DandyGal- I'm so sorry you are going through this awful experience with your Dad. I think you have a very good point about anti depressants. I have asked Mum before if she thinks she needs them which at the time she said no. But she definitely needs something to lift her mood.

Marmalade, Vemma, PW and Mo- Thanks again for your lovely messages of support. Means an awful lot.

I must dash now, but thanks again for your lovely messages- wasn't expecting to get such a response! I look forward to talking to you all soon xx

[Proud Wife]

Although it was my hubby that had the terminal diagnosis, I struggled to accept it and was put on anti depressant medication. Day and night difference so would strongly recommend.. If you feel that your mum needs something to lift her mood (and goodness knows she's got enough reason to be down) then I'm sure she probably does. I think perhaps your mum has so much going on in her mind which will be nigh on impossible to absorb properly, her mood in isolation, is something she's probably not thinking of.

Do you have a good GP? Certainly you need to fire Mr Negative Oncologist and your GP would be a good port of call. If you could have a quiet word with the GP perhaps and explain about your mum's mood, perhaps the GP could gently advise your mum to trial some antidepressants? I can only speak from experience and say how they have helped.

Good luck and let us know how you get on. xx

[Dandygal76]

I have not looked much into GemCap but I do know there was a study where it prolonged life with those who had the whipple - W&M published some stats. We are not allowed to drop names of professors or make such recommendations on here but if you message this Pancreatic Cancer group then you can get some from me without involving the forum rules...

https://www.facebook.com/groups/495134694006085/

[Justamo]

Hello Budgie, you certainly sound a bit more up for the fight than the first time you posted. It's amazing what a bit of support will do for your morale, isn't it ?

You said " Money is not particularly an issue for my parents and they would be willing to try anything but where do you go next if the oncologist isn't interested? "

You ask for a second opinion. Simples.

And if you think you can't argue with a doctor, pour a glass of wine - oops, forgot about your new baby - a nice cup of tea, and read a few of the posts on here. And if the second or third opinions don't result in extra time for mum then at least you've tried. Dandygal can move mountains and NEVER gives up so read her thread and take comfort from it.

We are all thinking of you and your family and will offer whatever support we can.

Take care,

Love

Mo

[Michmal]

Hello Budgie, I've just read the posts and really feel for you as your story is very similiar to the one experienced by my dad. I can see that you haven't posted since September so not sure whether to post or not. If you are still wanting information from similiar experiences then I can tell you my dad's story. I will keep an eye out for any posts from you.