Father has been told he has pancreatic cancer

[nia]

Hi there!My father was told on march 7th 2007 that he had pancreatic cancer,a real shock to us all.He has been my mothers carer as she has cancer,and now he has been told that he has only a matter of weeks left himself. He had a stent put in and his colour has improved tremendously,but he has lost so much weight and is so tired all the time.The Dr told us that when the stent gets blocked, normaly they would go through the process again to unblock it,but he told us that my father will not make it that long so will not have the oppertunity to have it done again.Im very worried as i have no idea what to expect,ive noticed that when he burps that there is a really rotten sort of smell.Without sounding stupid has anyone else experienced this?Is this something that will get worse? Kind regards nia x

[rosieh]

Nia - my dad was also diagnosed in early March (the 8th I think) and not offered any treatment. The thing I am finding is that each case is very different - the consultants told us my dad has "months" left, but at the moment he isn't in pain at all and has no jaundice. His cancer has spread to the omentum (a membrane in the stomach area and around the colon I think).

I don't notice any smell when he burps at all.... so I guess this will come down to each case being different, and what part of the digestive system is being affected.

Does your dad have a District Nurse or Macmillan nurse? It is worth asking them as many questions as you have.

Take care and I am sorry about your dad. It is a shock, isn't it.

[nia]

Rosieh - Thanks for your reply!Sorry to hear about your dad,its such a massive blow isnt it,im in total shock still! They have said there isnt anything they can do for my dad and that he only has a few months,but we can see him going down hill very quickly now. He has a mcmillan nurse who today rang to see how he is getting on.He was vomiting terribly last night and when we mentioned this to the nurse she said that they now need to take an active role in his care.He is not able to digest or eat anything , so he needs to have a drip.I have not met the mcmillan nurse yet,but i will meet her tomorrow as she needs to explain to us what is going to be happen as regards to my dads care. Thank you so much for your reply and take care kind regards nia.

[Guest]

Hi to both of you. My Mom was diagnosed March 7, also. PC in the body of the pancreas with vascular involvement. Inoperable and 6 - 8 months. 5 cm at diagnosis. She just spent the last week in hospital having a stent put in because of jaundice. Today was her appointment with chemotherapy doctor to confirm whether fit enough for clinical trial and/or straight chemo.

Mom has gone down hill so fast since diagnosis. In pain every 2 hours. On oxycontin for slow releasing (30 mg morning and night), and oxynorm and paracetomol combined for breakthrough. She gets short of breath and can really do very limited tasks.

Today she was told that she is not fit enough for chemotherapy at this time and the goal should be to manage the pain to enable her to have some quality of life for what time she has left. It was very hard seeing her hope disappear. They said they would do a referral to a local chemo doctor in three weeks to see if she is any stronger, but I doubt very much that, that will be the case.

My prayers go out to you both. I am afraid of what we are all about to face for our loved ones.

God be with you.

B

[rosieh]

Nia, if your Macmillan Nurse is coming to meet you then I hope you will get all of the information you need to prepare for your dad's care. Make a list before you see her, I found it helped me to remember to cover all the concerns I had.

I have found my dad's palliative care team (a combination of my dad's GP, District Nurse, Carers and Macmillan Nurse) to be very good... but as I think I said to somebody on another thread, be sure to push and ensure that you get exactly the help and support you need. If you act like you can cope, you may be left to do more than you can actually handle (or are comfortable with). I'm not being negative here, just from my experience a lot more support is available to you than may be initially offered.

Also, remember that you can sometimes get alternative therapies like Reiki through Macmillan. If that is something your dad might be interested in.

Barb - I am sorry that your mum wasn't offered treatment. I know how it feels when that last glimmer of hope is taken away from your parent. When my dad was told his cancer was inoperable, he was not interested in any life prolonging therapy - he doesn't want to linger now as his quality of life is severely impaired due to immobility and weakness.

I also understand what you mean when you say you fear what we all have ahead. My fears are slightly lessened the more I speak to people about things like pain and symptom relief.... but then we aren't really that far along the path with my dad (I don't think).

Barb - I read your mum's story on this forum - are you back in the UK now?

It is good to have support and information on line... I have found some of the American sites more helpful in terms of what to expect near the end of somebody's life. If anybody wants links then please let me know, but I don't know if you've already found the sort of info I mean. One particularly useful site I was reading last night is this Canadian one:

http://www.caringtotheend.ca/index.php

[Guest]

Hi Rosieh .... yes I am back in the UK. I came back March 30 to be with my Mom. My sister has two young children and would never have been able to do this on her own. My mom really only seems to want her children and sometimes grandchildren around. She really doesn't want other people seeing how she looks. She is a very meticulous lady and always looks immaculate until all of this destroyed her (her opinion). Her pride is taking a beating as well as everything else.

I am staying as long as I have to. My children are grown and some have children of their own. My youngest daughter is expecting mid May so that's just a little hard being away from her at this time, but she has a good husband and sisters around so she will be fine.

Another good website (which hopefully you don't need right now) is this http://www.hospicenet.org/html/preparing_for.html

Its an article entitled "Preparing for Approaching Death". Only thing is with this is when you read it I think then you can then read things into the signs you are seeing with your loved ones, which could be illness related and not signs of impending death. Its all so very confusing !!

My husband has just e-mailed me and told me he is coming on Monday for 2 weeks. He has lots of vacation time at work and it will be good to get a hug from him.

Tonight I am afraid is just a sleepless night !!!

[rosieh]

Barb, thanks for the link. Are you sleepless through worry or because you are doing things for your mum?

I'm lucky in that I am sleeping well, and my dad is currently not at the stage where he needs to be attended 24 hours a day.

I'm glad your husband can come over... it will be good support for you. It must be tough being so far away from your husband and children.

I live 70 miles away from my parents, I am in Leeds and they're in Widnes. However, the timing of this has been appropriate as I recently took redundancy from my job and have decided not to look for anything else just yet. Since early February, I've been staying near my parents during the week, and then going home most weekends (if all is well). We don't have kids and my husband has been wonderful about this. Like you, I have a sister (who lives very close to mum and dad) but she has two young kids and so we are both trying to work as a team with mum. That seems to be working out well.

I also have a brother but he has 3 young kiddies and his wife's father is ill, so she spends a lot of time caring for him. So we tend not to ask him to do too much in terms of caring.

[Guest]

Hi there ... I am a light sleeper and have basically trained myself for 5 to 6 hours max a night (sometimes less), however if I am disturbed I start thinking about things and then I am wide awake. Its not due to my Mom's need for care at this time.

I am in Widnes also. It was where I was raised and my family have lived there all their lives.

Yesterday was a great day for Mom. We had to up her on demand pain relief, but were able to take her to Gemini for a makeover at Boots and a new summer outfit from Marks & Spencers. Finished off with lunch at MacDonalds (need for speed), and she ate a couple of chicken selects and fries. The trip pretty well finished her off for the day but she had a great time and for me that's what its about now. Letting her have some fun and getting the most out of every day. MacMillan Nurses and District Nurses will be here today.

Best wishes .... B

[rosieh]

Small world, isn't it Barb?

How lovely that you could take your mum out for a trip to Gemini. A makeover was a great idea.

My dad's new hoist chair arrived today and if he feels up to it I would love to get him outdoors in the sun and fresh air - even if just for 10 minutes outside his flat. We haven't had any way of getting him out of bed since he lost his strength (his legs went first) and we've been waiting for the new sling to come, as he couldn't use the first one (it hurt where he has nasty pressure sores).

I think I am the opposite to you - I like 7 - 8 hours sleep and am rubbish if I get less! When this first started with Dad I had a few sleepless nights but now I am sleeping well.

I wonder if we have the same Macmillan Nurse? Ours is called Helen.

[Guest]

My Mom's MacMillan Nurse was here today. Her name is Helen !!!

It is a small world.

Mom had a very emotional day today. I believe it started by talking with the MacMillan Nurse and talking about her emotions. Then trauma over a stupid bill that came in, then a visit from the GP and a visit from the District Nurse. Too much in one day I think. They increased her medication again today.

Small steps is all we can take. I will do further posts to you on the carer's forum so as not to be doing general discussion on the "newly diagnosed". It might be better for the website. Alternatively if you want to post on the MacMillan Discussion Board let me know and we can set up a chain there.

B

[rosieh]

Barb - agree that we should move this discussion elsewhere. Carers section would be fine for me - I haven't used the Macmillan Forum yet, but let me know if you prefer to post there. Sorry your mum had a tough day.

Nia - sorry to have hijacked your original thread, I hope you are doing ok.

[nia]

Rosieh - thanks for your reply.I still havent met the mcmillan nurse,(mum has once)they do seem to be letting us get on with it on our own.I must admit im finding it hard as i have four children who also need a lot of attention,a five year old, 9 year old ,and twin girls who are 2.(My husband helps a lot,as much as he can do with him working!)I will suggest to my mum that she asks the nurses and drs what help we can have to make it a bit easier.Hope you are well and thanks again for your post,take care nia

[Leslie Glegg]

Hi Nia

In your first post you asked about your father's burps. My sister, who also suffered from them, described them as the 'Chemical Burps'. You can read more about them in the update to her Patient Biography on this website, entitled 'Anne, aged 49...'

Hope it helps.

Regards... Leslie

[rosieh]

Hi Nia

How is your dad doing? Does he need a lot of care? That's a lot to take on for you and your mum. It's definitely worth finding out if you can get some extra help. You can always phone the Macmillan Nurses... ours has told us we can call her if we need to discuss anything. We haven't needed to as she keeps in touch every fortnight and our District Nurse sorts everything else out.

Hi Leslie