Confused

[Elemoy]

Hi everyone, I'm after a bit of advice if anyone has any to offer.

My dad was diagnosed with PC last year. He was very jaundiced in June, spent weeks in hospital ill, developed diabetes and then got a diagnosis. The tumour is on an artery.

Since then he has had 12 lots of folfirinox. The tumour had grown when scanned after first six and remained same six when scanned this time. Consultant confirmed that it is inoperable on Friday (my parents had been convinced it was going to shrink and op would be possible).

He is due to start more chemo again tomorrow and they told me that they are awaiting an appt re:radiation. I'm not sure what chemo he is having this time round and when I asked my parents they said they'll 'find out when they get there'.

I asked my mam if it was a case of treatment to prolong rather than cure but she avoided completely.

Throughout the process my parents have always been very vague (when I have asked what stage it is they have said they don't know as its better to have hope). I have always assumed at least stage 3 as my understanding is folfirinox is used for advanced PC.

I understand my parents approach and where they are coming from but I'm not that sort of person. I like specifics.

My worry is that by taking this approach we might miss out on time together, time to plan, time to make memories for my children. We live 2 and a half hours away and currently see them a couple of times per month (I love to visit but also worry about the pressure it puts on when my entire brood descends upon them and as much as I know my parents love to spend time with my children who are 3 and 4 months I know they're exhausted).

How do I broach this? My mam is trying so hard to keep it all going and I know that when I have tried to discuss before it forces her to break the facade and it makes it harder for her and I don't want that but I want to be able to better support them both in any way I can.

So, do I carry on as is?

Do I talk to them?

Should I be preparing for the worst?

Sorry for all the questions but I don't know who to turn to on this.

Thank you.

[J_T]

Hi and welcome. So sorry to hear of your dad's diagnosis.

It's hard for anyone to say how to handle any given situation as we're all so different and react to the things differently. It sounds to me like your parents are lovingly trying to protect you and it is really up to them to talk to you and tell you where they're at and what they are dealing with.

Maybe you could have a heart to heart and tell them you are best able to help them if they are open and honest with you. You can come here for advice, support and information at any time and you WILL get lots of useful information which in turn could help them.

I'm guessing his next chemo will be Gemcitabine, maybe with another drug. Folfirinox is used initially as it's considered to give the best results.

My own husband's tumour was stable after 6 courses of Folfirinox but because it hadn't shrunk the oncologist decided to stop that and put him on gemcitabine so it's good your dad's doctor seems to be looking at the best options for him, including radiation therapy.

Sometimes not knowing can be worse than the wondering so I really would try and get them to open up to you.

That's my advice for what it's worth but ultimately your decision.

Good luck.

Julia

[shelda]

Hi elemoy, from the experience with my mums cancer since last July, they want to shield you and as an adult you want to know, I am the exact same as you I needed to know the ins and outs of it all, so much so I started going to the appointments with them.

I'd would say be with them as much as possible, we've had a few weekends away, day trips when mum feels up-to it just generally making as many memories as possible. Just explain to your mum that as an adult and parent yourself you feel it's important to understand exactly what's happening and that you are there to support them, yes it will be hard to hear certain things but it's 10times worse if they sugar coat it...I've learnt to be a bit more forceful about things since mums cancer in a nice way obviously as I think sometimes they are so confused and scared themselves they need someone to just say right I'm here, I'm helping what do you need. Shel xx

[PCUK Nurse Rachel C]

Dear Elemoy,

I am very sorry to say this, but welcome to the forums. Like others who have mentioned before, I appreciate that its not the place anyone wants to be, but I know that you will gain great support and comfort by being part of this community.

I am also very sorry to hear about your Dads recent diagnosis of pancreatic cancer and appreciate that it is a very difficult time for you all. My name is Rachel and I am one of the nurses working for the charity.

I just wanted to take this opportunity to welcome you to the forum and I can see that you have already been offered some valuable support, which is great. Also, please do not hesitate to get in contact if needed.

Best wishes,

Rachel

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[Proud Wife]

Hi Elemoy

Again, welcome to this forum. So sorry to hear about your dad's diagnosis.

Do you know for sure that your mum and dad know more than they are letting on? My hubby who is currently battling this disease wants to know facts and doesn't want anything sugar coated. However, we lost a friend recently to pancreatic cancer, he died within 11 weeks of dignosis. I do know that they didn't ask questions, they didn't want to know how long etc and just went with the flow. Perhaps that's what your parents are doing as sometimes the truth is too hard to hear?

Why not ask if you can attend the next appointment with them, that way you'll find out if they want to shield you from the facts.

Don't hesitate to come on here, whether it's to vent or ask as many questions as you want, we are all in the same rotten boat and will help xx

[Elemoy]

Thank you for the responses everyone.

Proud Wife - you have a point, my parents aren't really big on questioning things so that may be the case. I just feel that they must surely know more, would consultants not give them the information?

I guess, we just operate in different ways. As soon as my dad was taken ill i was researching every symptom and what all the tests they were doing were for and had come to the PC conclusion so when my dad was diagnosed i was expecting it. Whereas my parents and brother are sit back and wait people.

This is going to sound like a stupid question and i suppose i already know the answer but am i definitely going to lose my dad? I think that's what i need my parents to talk to me about.

Thank you again to everyone that has replied, this is the first place that i have really felt able to talk about it all (not really something to drop into conversation at softplay) xx

[Proud Wife]

Hi

In answer to your first question I think the consultant would have given them the information that he/she felt they needed to know and what he/she felt they really should know. Everyone is different and wants to hear/can accept different levels of information.

I certainly wouldn't push your parents to share whatever information they know with you. Nobody knows how this evil disease will develop in anyone, operable or not. Yes, the statistics are not good and you have to prepare yourself for the worst but your dad could possibly be one of the very lucky ones who lived longer, you just don't know. My advice is, carry on doing your research, if you want specific information go along to the next appointment and ask to have s quiet word with the consultant who may or may not tell you what you want to hear. It depends on your age and if the consultant thinks it would be in your parents best interests to talk to you and may well want their consent before doing so. I would so love to be able to tell you it's all going to be okay and I'd love someone to tell me that my hubby is going to be one of the lucky ones. All you can do is be there for your mum and dad and carry on being the same great son/daughter you clearly are.

All the best xx

[Paige]

Hi Elemoy,

So sorry to hear about your Dad's diagnosis. I can understand how it must be so difficult for you when you really want to know the ins and outs of what is happening but at the same time don't want to upset your parents by pushing the matter. When my Dad was first diagnosed i made a point of saying how important it was to me to know exactly what was going on even though i was just 21 at the time. My Dad did keep me up to date but then i know he always wanted to know all the details himself good or bad. As others have mentioned if you are in a position to then going along to an appointment could be a very useful chance for you to have a word with the consultant at one side, i attended a majority of my Dad's appointments and i asked endless questions. Also if your Dad gives permission for you to ask questions you could then ring up and speak to the consultant on your own and ask any questions you have privately so that the answers do not upset your parents but you have the information for yourself.

Best wishes for your Dad's further treatment xx

[Didge]

Hi Elemoy

As PW has said everyone is different and the doctors are quite sensitive these days to what people want to be told. It's also possible that your parents are trying to protect you but it sounds as if they really don't want to know too much. I had a friend who died of a rare cancer and she was very angry that her parents appeared not to accept that she was going to die but I told her I thought they understood very well that they were likely to lose her but didn't want to live in that reality until they had to! Also, because it is inoperable doesn't mean it is stage 4 but if a blood vessel is involved, as it often is, they cannot remove it so chemo is the first approach. The answer to your question about should you prepare for the worst is as PW has said yes prepare for the worst and make the most of the time you have as you have clearly researched the outlook. For a lot of people with this cancer they can be quite well, albeit sometimes having side effects from chemo, until the last few weeks so hopefully you will get a lot more time to make memories. But you can only prepare for the worst for yourself. You cannot or should not try to make your parents face that if they don't want to. And of course, sometimes someone does get a miracle. There is someone on this forum whose husband has lived over 5 years with inoperable adenocarcinoma (the most common type) and there are always new treatments on the horizon. Even with the prognosis being so poor I think we have all been sometimes hopeful that our loved one will beat the odds - and sometimes, just sometimes, someone gets that miracle. So prepare for the worst, but hope for the best. In order to enjoy whatever time is left (and of course none of knows how much any of us have left really) it is often very helpful to live in hope as your parents are trying to. Good luck - it's a nightmare world and so sorry you've had to join it but we are here to support you. Hope I've not been too blunt but you did say you like to know!

Didge x

[MSH]

Didge, can you say who it is, whose husband has survived over 5 years?

[Didge]

Yes it is Laura from Cornwall. She last posted just over a year ago but he had passed the 5 year mark. I hope they are still going.

[J_T]

Yes Didge is correct. I think I'm right in saying that Laura's husband, Brian, had Gemcap, not Folfirinox and unsuccessful attempt at surgery?

Her first posts were 2010.

[MSH]

I was thinking that it would be before the days of Folfirinox. It seems Bri was diagnosed in February 2010 and had 19 Gem/Cap courses from June 2010 to November 2011, since when scans have been stable up to the last update in March 2015. This is very unusual behaviour for an adenocarcinoma.

I wonder if I actual met Bri. I can't remember the names but at a Christmas meeting a year or two back when we went through our stories one gentleman recounted something similar. Perhaps one of the nurses will have access to the records.

[Elemoy]

Hi folks, didge - blunt and straightforward is how I function best so thank you for your approach.

Thank you to all for responding x

[J_T]

Mark, I agree very unusual behaviour!

Best regards

Julia

[PCUK Nurse Jeni]

Hi Mark,

I don't think it was Bri.

Jeni.

[Elemoy]

Hi, we had the news yesterday that my dad's cancer is terminal. He had a scan last week as consultant was concerned about weight loss and distended tummy and it was found that tumour had grown and they also found it in liver,bowel and stomach lining.

I asked my parents what sort of time we are working with but they said they hadn't thought to ask while they were so will ask at next appointment. It's taken since the end of July til now to grow and spread as that's when radiation treatment finished and dad didn't have anything while they waited for inflammation to go down.

Consultant has said that he could have chemo but he has to consider quality of life and dad would seem to be thinking thaThe will not have chemo which I understand. He's in so much pain and has lost such a lot of weight my mam has to support him to get around and h rarely leaves the house.

I'm scared of how quickly we might lose him. Does anyone have any idea what to expect? They have a hospice nurse visiting next week.

Thanks

Eleanor

[Veema]

Hi...I wasn't posting on here when you first posted, so this is the first time we've 'spoken' I think.

I can only go off personal experience and stuff that I have read on forums such as these and if there's no treatment I think it's fair to say it will probably be quite quick, but everyone is different. My husband had minimal spread to some lymph nodes at the beginning of June, but by mid July it had spread to lungs and by the beginning of September it had spread to liver and the lining of his abdomen...the latest spread caused him to have a build up of fluid in his abdomen, which made him really uncomfortable for several weeks until he had it drained, but it came straight back and he died on 23rd September, but it was sepsis caused by the fluid that actually finished him off.

Spend as much time with him as you can...make him as comfortable as you can...he shouldn't have to suffer any pain and the Hospice Nurse will help you decide how you all want to proceed...they may also give you an indication of how long if you want to know. She may talk to you about things like a DNAR, so in the event of him stopping breathing, he won't be put through the trauma of resuscitation and you may also get some 'just in case meds' which the district nurses are allowed to give him if necessary...things like strong painkillers, anti sickness, something to calm him if he gets agitated etc...they are injections. If you haven't already got them, things like a hospital bed, commode, pressure cushion for his chair and other medical stuff can help keep him independent for longer and will help keep him comfy...my husband had a couple of small pressure sores on his bum, so we got an air mattress and cushion.

Much love as you all face this...have a read through Marmalade's thread...how she dealt with the last few weeks of her husbands life makes inspiring reading and will also give you a sense of how calm and untraumatic it can be...it's all about the quality of his time remaining now.

Vx