My dad -- our story

[howkay]

Yesterday, my dad was diagnosed with terminal pancreatic cancer. Here's our story so far.

My dad is 63 and has preexisting health issues (deep-vein thrombosis for which he's been taking warfarin for almost 20 years), high blood pressure and spondylosis. Although he sees his GP and practice nurse regularly, he hasn't seen a specialist or been into hospital for a 20 years. In the last 12 months there have been concerns re: diabetes and he's been taking metformin, but in the last 4 months the doctors have been unable to control his blood sugars and they have been high. He has also been becoming progressively depressed for the last 18+ months.

He's had significant weight loss since November (about 80lbs) and whilst this caused some concern, he did need to lose the weight and looked well on it to be honest. He wasn't eating as much as usual but we thought he had finally started to follow the diet the nurses had recommended an it was working.

About a month ago turned yellow. He was sent for blood work and an ultrasound. A few days later and with results being inconclusive, he had a fall at home and was taken into hospital. This was three weeks ago and yesterday we were just given a diagnosis of terminal cancer.

To go back a moment. Dad has been in three hospitals so far. Initially he had a CT scan and various tests at our local hospital. At this point dad told us he was bleeding from his "back passage" and had been for months (first time we have heard of this). His blood sugar on admittance to hospital was 29 and initial concerns were to regulate this. Then he was moved to a larger hospital for more tests. At this point we were told he had a "blockage" in his pancreas that was blocking his bile duct hence causing the jaundice. No one would give us any further details and were reluctant to discuss the "blockage". He was moved to another hospital to have a stent placed to clear the blockage and a biopsy. For some reason, it was decided not to do a biopsy. It was explained to dad in these terms "we don't want to disturb any seeds". Of course everyone is thinking cancer at this stage but no one will broach the subject or address it with us. I talk to the nurses and have a counsellor talk to dad and it is decided that a biopsy will be done. He his transferred back to hospital 2 for the biopsy, then back to hospital 3 for the stent. At this point we ask the consultant if my dad has cancer, and are told they don't know -- this was Thursday 17th. The conversation with medical staff re: cancer has been brushed off with a general feeling no one wants to discuss it. The stent procedure was fine and dad is told he can go home and will be called back when they have his results, at which point he will be transferred to hospital 4 (specialised cancer hospital in our region). This is the first time anyone has alluded to dad having cancer and again I ask does dad have cancer at which point I am told they don't know.

Dad's blood sugars are still all over the place, and his blood pressure has been going high and then suddenly dropping really low, causing him to pass out/fall/be sick. The doctors still say he can go home but nurses won't discharge him until a care plan is in place at home and occ health are doing an assessment.

Yesterday the consultants "understudy" (as my dad calls him) came to see my dad. He said "so, you know you have cancer", at which point my dad said "well, no, I didn't know". The "understudy" left and came back with the consultant and dad was told, while he was on his own, that he had terminal cancer. The nurse found dad a little while later alone, sobbing in his bed and called mum.

Mum has heart disease and is waiting for bypass surgery.

Clearly, we are all devastated and emotions are running high, but I will never understand why dad told this info when he was alone and why doctors won't talk to patients and their families about the possibility of a cancer diagnosis.

I wanted the family and dad to talk to the consultant because all the information we had is what I have just given you. He wasn't able to see us until today anytime between 8am and 1pm. He came at 11am.

He said he is not a cancer expert, he deals with the stent, it is primary pancreatic cancer, he doesn't know if there is any secondary and he doesn't think there will be any further tests. Dad is too weak for chemo so the plan is for him to go home for three weeks to gain some strength for chemo (at hospital 4). He didn't think hospital 4 would do any further tests, but they would be able to tell us what stage the cancer was at. In three weeks.

When asked for a prognosis the doctor said he didn't know and it could be up to two years or as short as a few months.

Once occ health have assessed the house (tomorrow) and put plans in place, dad will be coming home until he's called to hospital 4. His blood sugar/pressure is still all over the place but he doesn't have any pain. His jaundice is lessening.

To complicate matters more (because nothing is ever simple) I live in Canada and two weeks ago, a week after dad was admitted, my husband was rushed into hospital with chest pains (he's 26!). After a week of tests and with cardiac markers in his blood, he was diagnosed with myopericarditis and came home last Thursday. He's still poorly and I am unable to leave Canada for the time being (this is killing me). My mum and sister are with my dad and I do my bit over the phone.

My main concern is having to wait three weeks for anything else to happen. I am afraid that they are sending dad home to die (there, I said it) and no one is telling us, for whatever reason. He doesn't seem well enough to me to be coming home, but my sister assures me this is what dad wants and they need the beds. District nurses and social services will come in to look after him.

I suppose I really just want to know how this all sounds to people, is there anything I should be asking the medical team? Is there anything more we should be doing? How do people cope with this waiting game?

Three weeks to even find out what stage the cancer is at!

[PCUK Nurse Jeni]

Hi Howkay,

Welcome to the board. So sorry to hear about the journey so far.

It is not an uncommon story, sadly. The symptoms were all there (diabetes -often a precursor to PC, weight loss, lack of appetite, jaundice). Am wondering how your dad was given a diagnosis of "terminal" cancer, if he was then told by the stent doctor that they did not know if there were secondaries? Your dad has had a CT scan and biopsy -had anyone discussed the results of these with him/the family?

The CT scan would be able to show up any signs of the disease elsewhere. If this was the case, then the diagnosis would be as they said. Has anyone discussed an operation?

It sounds like the plan is chemotherapy? The results have probably been discussed at the multi-disciplinary team meeting. The next step should be an appointment form an oncologist. If your UK family are able to find out who/what team your dad will be seeing, they could phone the secretary for that consultant and request an appointment. That would speed things up a bit. Otherwise, it is a case of getting him fit to have treatment. If it is answers you need right now, contact the hospital PALS team (Patient Advice and Liaison) and ask for their help in getting to the bottom of why your dad was not told properly, or why it was not discussed with you as a family when you asked the questions. They are an excellent service and will do a lot of the investigating for you.

I have already provided you with an email address should you need any further information regarding treatment. Hope you and your dad get some answers soon.

Kr,

Jeni.

[howkay]

Knowing what questions to ask really helps. Thank you.

I just spoke to the ward matron (not sure if I am allowed to say this so please remove it is I can't but my dad is based in (name removed -moderator), so we're talking about (name removed -moderator) and (Name removed -moderator). She's going to review my dad's notes and the scans etc and see where we are at. She thought an MDT (I had to ask her what that meant) had taken place, which I think it has because we do have a plan of such, in that he's going home to get strong enough to potentially have Chemo at Name removed -moderator). I asked her why we weren't told the stage of the cancer or if there were any secondary cancers and she felt they did have the information to be able to tell us that and wasn't sure why we hadn't been told.

We were told this morning by the consultant that the cancer was inoperable and thus terminal and the stent was to relieve some of his symptoms. My dad heard the consultant say up to 2 years and now is convinced he has two years left. To be honest, this is a good thing so far because it seems to have perked my dad up and made him more positive -- my concern now is that 2 years is not a realistic prognosis -- the consultant was blase "could be up to two years or a few months". I don't know whether letting mum and dad continue to think this is good or not, or if we should be reiterating the "could be a few months" bit.

The matron is going to get the ward manager to call me (though they promised to call me yesterday, too, and didn't). I think I will be furious if the CT scan confirms secondary cancers because he had those scans done three weeks ago and no one would tell us the results. When asked about the results of CT and biopsies they skirt the topic and/or say inconclusive. Three weeks is a long time in the life of a terminally ill patient.

Google can be a blessing and a curse. I like to know information but it's making sure we're not blowing things out of proportion. My sister thought this was pancreatic cancer from the start, I really didn't. I felt the doctors would at least talk to us about that as an option, but no one did and I trusted in that somehow.

[howkay]

Dad's consultant called me this evening. I suppose my calling the ward manager helped. He said dad has stage 4 pancreatic cancer, it has spread to his "parallel organs" and was attached to a major blood vessel. He said the prognosis he gave my dad was based on his experience and not statistics and reiterated that he is not a cancer expert. He said Hospital 4 won't treat him until the jaundice has gone, so he's going home to get stronger and see if chemo is an option for him. He said he may have to have the stent procedure done again and that Hospital 4 will give us further details of exactly where the cancer is now, treatment options and a prognosis based on their experience and national stats. I asked why we needed to wait three weeks for this info and he said because we need dad to get stronger, which I understand, but three weeks seems like a heck of a long time for someone with a terminal diagnosis.

I talked to mum and dad this evening and now "up to two years" has changed to "at least two years" when they are telling people. But they are so positive and happy right now that my sister and I have decided to leave it like this and see what happens at hospital 4 when a macmillan nurse is assigned. I just hopehopehope that we make it that far.

[Ellie]

Hi Howkay

So sorry to read what you are going through with your Dad. You certainly have a complicated situation, with four hospitals being involved in your Dad's care.

As a lot of us on here know, it's always the uncertainty and waiting around that is the hardest to deal with. Once you have the full facts, you can face up to them and get on and deal with things.

I really do feel for you and hope that you will get the answers you want and the right treatment for your Dad very soon.

Sending best wishes

Ellie

x

[lynbo]

Dear Howkay

Like Ellie says, what a carry on with 4 hospitals!

I think you and your sister are doing the right thing letting your parents just be positive and saying 'up to 2 years'

It's bad enough having to deal with all this without jumping ahead to an estimated end, so stay positive, and take your notebook when you go to appointments, with so many involved, your going to need it!

Take care

Keep in touch

Lynbo

Xx

[Jackjo]

Hi Howkay,

I haven't been on here for a while and just catching up on the discussions and I saw your post. I am so sorry to hear about your Dad and hope things are staying positive for you all (as much as they can do).

I am a little bit in a similar position to you being a flight away from my Mum who was diagnosed in November 2010 - although my flight is only from the Isle of Man not Canada! Still, I know what it is to not be able to go to treatments or Consultant meetings with your parent and so having to glean everything from them at a distance and reading too much on the internet is REALLY frightening!! I think my Mum hides a lot of info from my sister and I.

However, at least you are able to speak with your Dad's Consultant and have some first hand information now.

My Mum is doing ok, she has been on chemo now for nearly 4 months and although the tumour has not shrunk it hasn't grown or spread either which is good news so far. However, she is incredibly thin and struggling with her digestion which they are trying to regulate for her. She carries on as much as she can as "normal' and this manages to keep her positive and as you say, this helps them deal with what is going on. I only think that this attitude adds to their fighting spirit and if this works for your Dad then, good.

I hope your husband is doing ok and you are holding up with it all too. You are in my thoughts, sending you best wishes

Jackie x

[PCUK Nurse Jeni]

Hi Jackie,

Is your mum taking any form of enzyme supplements for her digestion?

If not, then she should be on some, by the sound of it.

Creon is the most common one used.

Jeni.

[howkay]

I can't believe it has been three months since Dad's diagnosis.

During that time dad has been home. The stent has done wonders and his jaundice is gone and his appetite is back, he's even put on some weight.

They have taken him off warfarin and he's now injecting a blood thinner daily for his thrombosis. He's also injecting insulin twice a day but his sugar levels seem to have evened out. He is having intermittent medium level pain the last week or so in his tummy that he describes as being like toothache and has back pain but cocodamol seem to be controlling this. He's belching more and has these episodes where he breaks out in a cold sweat and feels like he's about to pass out and then gets terrible diarrhoea which he says smells incredibly bad.

He started Chemo and has had his second treatment today. His regime is intravenous steroids and chemo once a week for three weeks, then one week off. This will continue for 6 months. Seems like a long time to me. On the saturday, after chemo on Thursday, he's tired and sick to his stomach. Last week he slept Saturday and Sunday away and picked up on Monday. He doesn't know why he's having chemo, he said it's to shrink the tumour which he thinks will give him longer.

I'm flying over today to see him for the first time since his diagnosis. I'm hoping to talk to his GP and oncologist while I am there.

When dad first met his oncologist he said "The doctor that did the stent said I had between 18 months and 2 years" and the oncologist said "that sounds about right".

Note, three months have passed but dad still says he has two years.

[CFF]

hi there,

Sorry to hear about your dad and glad you're finally able to get over to spend some time with him. Also it's been importnat for me to have contact with the oncologists and staff involved, as you're aware form your own experiences - what is actually said in a meeting or consultation is interpreted differently, or mishear.

We've had real difficulties with my dad and the timescales issue - when we first heard the cancer was back and this time incurable I worried that he hadn't taken it on board. He still kepot talking about possible treatments. And then all of a sudden he wanted to talk about what we knew about life expectancy and what we understood from the doctors. It was a horrible conversation and broke my heart but it made me think that it was right not to have pushed him earlier on it and that it must be so different coming to terms with it from their point of view rather than ours.

Sounds like the fact that he has 2 years is having a positive effect on him and I'm sure there'll be a natural point at which he thinks and feels differently about it.

good luck with your visit

x