Another 'newbie'

[yorkypaul]

Hi Lulu. How are things today? This stealthy vile disease keeps us on our toes as it messes with our loved ones. You never know what is coming next. Make the most of every minute. Just being there for him will be a great help. I sometimes just sit while my wife sleeps, but she knows I am there and I am the first thing she sees when she wakes.

Thinking of you both today and hoping dad has a better day.

Love and hugs,

Paul x

[susikus]

One step at a time on this massive rollercoaster - it's all ups and downs isn't it - and hard to predict what is coming next. If you can them take it as it comes, enjoy the better bits and roll with the worse bits. It is a horrible ride, one you wouldn't wish on your worst enemy, and yet, somehow, somewhere on that ride there are precious nuggets that you will cherish forever. Hang on to those Lulu, you can do this, and we are all riding with you, your forum family, lots of love and big hugs, Sue, xxx

[Lulu]

Sue and Paul, thanks for being here for me. It really does feel like the only place I can actually say how I really feel. When I'm with Dad I'll say how much better he looks (even when he doesn't) - just to cheer him up and give him hope - but here I can say what is really on my mind and that is so necessary otherwise I feel I would burst. Dad had another reasonable day today considering how ill he was at the weekend and the nausea is less but chemo looms on Thursday again so we'll see if he is able to take this dose depending on his bloods.Paul delighted your wife is coming home and the sickness is under control - will post on your link too xx

[PCUK Nurse Dianne]

Good morning Lulu,

I am sorry to read your posts, sounds like you are having a difficult time with the 'rollercoaster'ride at present. I am just wondering if you have a Macmillan nurse associated to your father's pathway of care. I think the weight gain is rather rapid in such a short period of time, and as you have already suggested may be related to fluid accumulation. If your father is finding it difficult to contemplate further hospital visits, a Macmillan nurse would be able to visit you at home, adjust pain relief according to your father's needs, and also assess the peripheral oedeama (swelling of his feet and/or elsewhere). Also as many of the other forum members have mentioned, these nurses are a great part of your 'home team' and will help you through the difficult times, and also take the pressure off you about deciding when to phone for a doctor.

Please don't hesitate to contact us at the support line if you would like some further help/information (support@pancreaticcancer.org.uk).

Best wishes,

Dianne

Support Team

[LesleyJS]

I came across your website a few weeks ago and have found it very informative, so much so I joined the Forum this morning (Nov 21).

Without going into too many details, after an ultra-sound scan followed by a CT scan my husband, Tony, was told by the consultant at our local hospital that he had terminal pancreatic cancer. He told him he had between 6 months and two years to live. That was on October 3rd, 2012. Since then Tony has had an EUS biopsy of the tumour which did not confirm cancer. This was followed by a percutaneous biopsy two weeks later. Again this was not conclusive so a second opinion as to the results of the biopsies has been requested from the {Name removed - Moderator} Hospital.

Tony saw the consultant again on Wednesday November 14th. He said that he was hoping to receive the results from the [name removed - moderator] early this week and that an appointment with the oncologist would be arranged either for today or next Wednesday November 28th. Yesterday Tony rang the specialist nurse at the local hospital for an update. He was told that the results from the [name removed - moderator] hadn't been received yet and the appointment with the oncologist would probably be next week now-personally I am finding the 'probably' depressing.

We are both trying to stay positive but are extremely conscious that two months of his predicted six months have already gone without him appearing to be any closer to receiving any form of treatment. Does it normally take this long for a conclusive diagnosis and before treatment begins? In the meantime Tony has lost a good deal of weight and continues to do so. He also has other symptoms which I'm sure you are all familiar with. Our GP has been very good and attentive but Tony and I are floundering at the moment and we don't know what steps we can take to at least improve his quality of life while we're in this waiting game. We really would appreciate any advice. I am so grateful for this website and the opportunity to be in touch with you. Lesley.

[confused]

Hi just want some advice really mum had stent fitted in September but is telling everyone that she has had the tumour removed and is going home when better. The tumour is inoperable and she is having no treatment only palative care. Cant find anything out from staff just saying she is very poorly. So basically she has no idea she is dying should they not have told her?. She is in a rehabilitation unit but has lost all mobility and forgets to walk she is very confused sleeping all the time eating very little. We dont know if it has spread or the time she has left. What should we do?

[susikus]

To 'confused' I would say you need to talk to the staff. Are the palliative care team involved, if not ask why not and ask to meet with them. Or ask for an appointment with your mother's consultant. Talking to ward staff and junior doctors often leads to not much information and further confusion in my experience. You can ask what your mother has been told - it may be that she has been given more accurate information and has 'chosen' not to hear it - you also said she was confused so maybe she did not understand. Who is her next of kin - the docs will not want to deal with lots of people and that can make it difficult in some family situations. But as your mum's family you do have the right to better quality information and care. It is sadly often the case with the NHS that you have to be assertive to get the care you and she deserve. Good luck and do come back and tell us how you get on. So sorry you had to join us in this horrid situation. Lots of love, Sue, xxx

[susikus]

To LesleyJS, goodness me I hear you! I can remember feeling exactly the same when Pete was diagnosed and yet everyone told me it was all going as fast as it could. We were also told terminal pancreatic cancer on the basis of the CT scan. A biopsy followed a week later - my understanding is that they need the biopsy results to be able to know what chemotherapy to offer - and then we waited for the result before referring to oncologist (on the basis that what if the biopsy didn't show a result - which is what has happened for you), then having got the result we had to wait another 10days for a consultant appt, then a stent needed inserting so it was another 2w before chemo could start! So what can I say that might be any help at all? First of all be polite but be persistent - ring every day, ask questions, ask staff to commit to helping you. In retrospect I did do a lot of this but wish I'd done even more. Secondly explore all the drug options - is Tony in pain, needing painkillers? Is he nauseous, needing better anti-nausea meds? He is losing weight, is he on Creon? Could he have steroids - these increase appetite and feeling of well-being? Is he being seen by the palliative care team - get them in as they are superb at symptom control and quality of life. Is he getting GP support - have you had the Disability Living Allowance sorted out and applied for a blue badge? GPs can be great (I work with them) but they are also not expert in anything so you may derive better help from some other health professionals. And finally (I know - loads to take in - sorry it's felt a bit rushed) have you looked into nanoknife - look at other threads for more info - this is something I wish we'd known about much sooner. Please do come back and tell us how you're both doing, love to you and Tony, Sue, xxx

[LesleyJS]

Dear Susikus, you've made me feel better already-thank you!! Your advice is really helpful and at last I've found a direction and have some goals to aim for. I will be carrying out research on all of your suggestions as soon as I've finished this message. With the help of our excellent GP Tony's pain is currently well under control with oral morphine. Since changing to this from Tramadol the nausea has subsided and he is on steroids to increase his appetite. I'm glad to say that has improved somewhat-I can do some proper cooking again!

I wish you and Pete all the very best. Everyone out there is in my thoughts. Love, Lesley X

[susikus]

I am sorry that I was not clear Lesley, my Pete died four weeks ago. He was diagnosed in August and the end, when it came, came a lot quicker than anyone could have predicted. We did, though, make the best of those two months and I have no regrets. Pete would not have wanted to be ill for a long time and would have hated needing care. You can read more of our story on the 'new to this' and the 'living day by day' threads. with love, Sue, xxx

[LesleyJS]

To Susikus. I am so sorry to hear about Pete; please accept my deepest apologies about my misunderstanding. Today we 100% confirmation that Tony has pancreatic cancer and we are hoping to have an appointment with the oncologist next week. Thanks to your advice I think we are better equipped to ask the right sorts of questions. It's a huge learning curve at the moment! I'll let you know haw we get on. Love Lesley XX