My Dad's suffering.

[Ames83]

Hi all,

I have been using this fantastic website since my dad was diagnosed with PC only a week and a half ago. I have been following many threads with great sadness. I am very sorry to each and every one of you and your family members who are going through such traumatic times.

My dad told me he had been diagnosed a week last friday. I was shocked as you can imagine but he had been unwell and in pain since Nov and no amount of doctors or blood tests picked anything up.

He was sent for a biopsy last friday which I accompanied him to. (He lives alone and Im the only family that lives close by). It was here I learned from a junior doctor that actually the biopsy was to find where the cancer had originated as they found mass' on his pancreas, liver, one lung, lymph glands and another mass near his prostrate. He also has fluid on his lungs. You can imagine my shock as I went from being hopeful of an op and treatment to learning that my dad was far more sick that we could ever have imagined. We now have a wait to find the results and prognosis.

As a result of the proceedure my dad had, I had to stay with him friday night. I was woken at 5am by his moaning and breathlessness as he was suffering in pain. He has always said he had this pain in this back etc (which I now know is a sign of the cancer) but I had no idea the severity of his pain. He was buckled over and struggling terribly. He has been given tramadol to take but this is just not strong enough. Im so aware that the more pain he's in the worse his situation is. We are hoping to get him some stronger pain relief as it's just not right to be suffering that much. As awful as it was to witness I am glad I did see how much pain he was in as I can now try and help. My dad is a typical parent, not wanting to admit he's in pain, not wanting to accept help.

I've really rambled here but just wanted to get it all off my chest as I feel unable to say it all out loud at the moment.

Any advice anyone can offer on what to expect in the coming months would be greatly appreciated. I know its going to be awful, just not sure HOW awful.

Thanks for listening

Ames xx

[Nardobd]

Hi Ames and I'm sorry to hear your news.

I was in shock for about three weeks after my hubby, Ted, was diagnosed, so I think you are being very coherent! The enormity of the whole thing is incomprehensible, so you just have to take one day at a time and deal with each problem as it arises.

So, taking my own advice and dealing with the pain issue, Tramadol is a synthetic substitute for morphine. I was prescribed it some time ago after an operation and Ted has been prescribed it for back and stomach pain. Both of us felt that it doesn't provide adequate pain relief. Ted went back to the doctors and got dihydrocodine and that deals with his pain much better than Tramadol ever did. Don't underestimate, too, the effect of over the counter medication - co-codomol and ibuprofen can be taken together and they help to build up a medication barrier against pain.

When combining pain medication never allow Dad to overdose (even a little bit) and read the labels to make sure that he's not taking two medications that contain paracetamol at the same time (paracetamol is very tough on the liver and can build up to toxic levels easily).

Pain medication, Codine, in particular, also causes constipation. Ted doesn't like taking the chemical laxitives so a bottle of syrup of figs (available from chemists and healthfood shops) is always on hand.

As for not accepting help, this is probably a symptom of your Dad's independence. It could also be a factor in denial - I know that Ted's reluctance to admit how ill he is stems from denial. The trick is to make light of it or to say that you're doing, for example, the housework so that Dad has a "fresh start" and can keep it up thereafter.

Ted was told he had 6-12 months in February 2009 and he's still here! Luck, how your Dad copes with illness and his determination to fight will determine what you should expect over the coming months. Some people seem to slip very quickly and deteriorate rapidly and others, like Ted, survive much longer than expected. That's not to say we haven't had problems along the way but we try not to anticipate them too much! This disease doesn't follow the same pattern for every individual and everyone has their own quirky set of symptoms.

Most of all, now that you've 'joined' the family, keep us up to date, use us to vent and share your Dad's progress with us. There's always someone here willing to help - even if all we can do is provide a shoulder from time to time.

Nicki

[PCUK Nurse Jeni]

Thank you Nicki for your wonderful reply to Ames.

I would just like to add that you can contact us at any time on support@ pancreaticcancer.org.uk if you need further help.

KR,

Jeni.

[laura]

hello ames, so sorry to read your post,you are obviousley devastated,as nicki said it takes a while for such news to sink in, then you think they, the doctors, must be wrong, that things cant be this bad so quick,can they!

first things first, as you say his pain is not under control, if that can be sorted,it will be so much better for dad, if you have a good oncology team that should be easy to sort out,also contact macmillan nurses they can get medication sorted on the day for you, give them a ring and explain the situation.

wont load you with lots of information, as nicki said each sufferer is differant and even the drs cant usually give you definate time scales or what to expect when, it is early days for you all, go easy on yourselves, encourage dad to accept some help.

take care of each other, love laurax

[Ames83]

Thank you all very much for your kind words and advice. It just helps to have people to talk to that are going through similar situations. It's all very well talking to friends but they have no idea what to say and just feel awkward!

I had my dad over for dinner yesterday and was lovely to see him smiling and spending some time with my daughter. He had a good day yesterday ( pain wise) but today is another story. I spoke to him on the phone and he was very short with me. I got the feeling he was hiding something from me. As I mentioned before we are waiting for the results of his biopsy to come through and I said I'd go with him to meet his doctor and ask the questions he prob hasn't thought of etc, but when I asked if he'd had an appt date yet he brushed me off so now worried he's planning on going on his own. If this happens I know I wont hear the whole story. I want to be there for him, to support him, and look after him but I don't think he's going to let me. He has already lied to other family members not telling them about the cancer spreading. The only reason I knew was because I asked the doctor checking him over. But now he's going to do the same with me. I'm so frustrated. I'm trying so hard not to pester him and to give him space to get his head around what is happening to him but it's difficult as he's all on his own and the thought of him suffering is tearing me apart.

One good thing is by brother is coming down from Suffolk thursday to spend the weekend with dad, It's some comfort to know he'll be there with him and he may be able to get some info out of him.

Oh moan moan moan. That's all I seem to be doing at the moment!

Chin up hey!

[laura]

hello ames, dont worry about "moaning" you need somewhere to vent your own frustrations,

could you sit down face to face with dad and explain how you feel, and that your feeling shut out, tell him your scared, and that you want to be there for him, cos you love him, say [perhaps]! that he would do the same for you.

it may help him to look at things slightly differantly, but knowing how you are feeling with this news, try and imagine how he, the sufferer, must be feeling,?

i cant even imagine that, and have been living with the diagnoses for my hubby for just over 2years,[ nicki even longer,] now, i do not every day wake up and think "cancer" taken quite a while to get to that stage though

am sure you will be able to sort something with dad, just may take a little while, maybe he feels at least hes in "control" of something in his life, now im ramblin! lol

take care love laurax

[Nardobd]

Hi Ames and I'm pleased your Dad had a 'good' day yesterday. It's important to appreciate any little pleasures we get.

Your Dad is possibly still in shock and probably also wants to 'protect' you from knowing the worst of it. When the time is right, perhaps you could explain to him that if you don't know what's really going on your imagination fills in the blanks with things more horrible than can possibly be true (at least I know mine does!).

If your Dad won't tell you about the appointment to get the results of his scan, what about ringing the oncology department at the hospital - even if you have to tell a white lie and say your Dad forgot the date and/or time. Then you can say to Dad that you know when it is and you hope he'll let you come and support him?

Keep venting - it's important that we carers have somewhere to speak too!

Nicki

[lisaH]

Hi Ames, I have just found your post, from March, how is your Dad? My mum was diagnosed in March after symptoms starting in January and the GP told her it was a tummy bug. That is until the jaundice and then she had to wait 4 weeks to see a specialist and only through me have a right go at them. I am the only child and my dad passed away 8 years ago. Apart from the pain and fear there is the depression and anxiety which is hard to support as you feel totally helpless and it also brings you down too. This is a selfish statement but it does affect loved ones as well. I try to make mum laugh when she is feeling okay but I am at a loss when she cries and is scared, I just have to hold her. Its the walking away and leaving them on their own that is so soul destroying but I have to work. I hope your Dad's treatment is successful. This blog is so good for venting frustrations and no-one judges you, there is so much empathy and understanding. I had a 2 month break from it, I think I just hoped it would go away, but it doesn't. Wishing you well, Lisa