Is this nearly the end for my dad?

[Gems0804]

Hi, I'm kinda new to this sort of thing so I'm a bit unsure what to say or do. Took me about half an hour to figure out how to post something haha. I will start with a little bit about mine an my dads life (sorry if it's boring I will be brief). My dad now 65 and me 28. From the age of about 4-5 I lived with my dad an didn't have contact with my mum as she is an alcoholic. Growing up my dad was my idol, I was like his shadow. My dad gave me the best start in life possible teaching me all the life skills I have now! My dad was a very active young at heart (and looking) man doing and working for anybody who needed help. He was always a bit on the larger side but in a healthy sort of way.

About 6-7 years I began to notice there was something slowly eating away at my him, trip after trip to the doctor was a waste of time. The doctor just didn't seem to care (after this doctor died it came to light there was several cases of negligence at the time my dad was registered there). A few years later, after more and more visits, my dad was diagnosed with diabetes, put on tablet after tablet with nothing seeming to help. About 2-3 years after that he was finally having regular appointments at the diabetic clinic in the hospital and put on insulin.

I could see there was something still not right, resending my dad to the doctors time and time again. At this point he was struggling to work, but he loved working so didn't stop. He has a number of other medical issues like sciatica and arthritis as well, so the doctors would just palm him off.

The actual beginning of diagnosis was Christmas Eve 2012, my dad had been really ill for a few days and then turned yellow. Turning up to work earlier than the boss as usual, his boss and also close friend saw my dad and called his brother straight away (his brother is a top doctor in the Name Removed - moderator). Knowing of the difficulties my dad had in the last few years, he came straight away looked at my dad and marched him to the {name removed - moderator}, ordering the doctors and nurses to do numerous tests and scans, explaining who he was. If it hadn't been for him my dad might already be dead if not diagnosed when he was. I knew he was sick but cancer never entered my mind, maybe at the back of my mind. I was thinking my dad is the strongest person I know he'd never get that. Getting diagnosed with the middle stages of pancreatic cancer was the worst day of our lives.

Seeing specialists going over his options my dad had the Whipple procedure in February (on his 63rd birthday) removing the tumor leaving a few cancer cells remaining. He waited a few months to heal then 6 months of chemo to kill remaining cells which he sailed through. He had a full recovery. Early on this year he experienced pain in the same place as the cancer. A few trips to the doctor then a scan, I knew it had come back before even getting told. Again that devastating news, but with the added word "terminal". He was offered an intense course of chemotherapy and was told the odds. Chemo making him sick, ruining what quality of life he had. The chemo was meant to be every two weeks but because he was so ill, it kept getting put back week after week. The pain just got worse which made me think it's just not working. It's aggressive and isn't giving in. I asked one of the doctors to send him for a scan which he said no, only to see another doctor the week later and get told he needs one and that the cancer is more advanced than what they thought.

About 3 weeks ago he had the scan, we get the results today. Me and my husband took him and our two girls to Devon for a week - the pain and vomiting got that bad I had to register him with a local doctor. The pain is that intense now I'm thinking he might not be here in a few weeks to be brutally honest, which kills me to think like that. My dad lived and worked in Munich before I was born, the only thing on his bucket list is that he wanted to go one last time. I arranged that 2 weeks ago, leaving next Monday for 4 nights. He says he wants to go no matter how much pain he is in, and we have got a letter from the doctor to say he's fit to fly. I'm just worried in case the worst happens when we're there. I know we will find out in a few hours but I would really like to know other peoples experiences. And just maybe some words of advice or kindness.

I've coped with it up to now, talking openly about everything sorting out funeral arrangements ect. My dad even makes the odd joke. The last couple of weeks tho, I have really struggled with my mood. My doctor had to increase my dose of citalopram a few months ago just to try and help me cope better. All I'm doing lately is crying. My best friends mum got sadly taken in May in the same sort of circumstances. Diagnosed with Breast cancer when my dad was first diagnosed. She beat it, later getting sick and headaches at Christmas 2013 she was diagnosed with 4 brain tumours and spread to her bones and sadly died. It was her birthday yesterday and I couldn't be with my friend as she lives far away and I couldn't leave my dad.

There is no hand book for this type of thing, I don't know whether I'm coming or going. The words terminal cancer to me just merely means being stuck in a time zone, not knowing hardly anything but the rest of the world carries on moving. Well I didn't know I'd write that much. Sorry about it being long, as I said I haven't got a clue about these sort of things. Just needed somewhere to turn. Thank you for taking the time to read this xx

[SueH]

Hi Gems

I really hope your news is good today. Watching someone you love suffer from this evil disease is soul destroying. I am so glad your wonderful Dad has you to look after him. Your Dad should not have to suffer in pain. Syringe drivers provide 24 hour pain relief, anti nausea meds can also be put in these. You can have some liquid pain meds for any breakthrough pain. My husband had these and it kept him comfortable. There is also a nerve block, and nerve pain medication that can work wonders.

Wishing you and your Dad all the best. Sue

[nikkis]

Hi,

I am so sorry to hear about you Dad, what a terrible time you have been having, but it sounds like you are somehow being strong enough to support him.

Has your dad got any support from the local hospice or Macmillan? Someone needs to help sort out the pain and that will help you all. Try not to be too frightened of morphine, they should be able to get the right dose to stop the pain, but not so your dad is knocked out, although this can take a little while to get right. As Sue suggests a syringe driver can work well, particularly as absorption isn't always great in people with PC.Your dad's GP can refer to someone, or sometimes you can refer yourself,. Don't worry about having to take drugs away with you, and make sure you have plenty. We have just been away and sailed through customs with lots of stuff, just make sure you have a letter from your GP explaining what your Dad is on. I was very stressed about going away in case something happened, but it was fine, and the stress was worth it, doing special things can help you feel better now and give you memories in the future.People here have found Insurewith reasonable for insurance, their only issue is if you are on chemo, and it is worth having a E111 health card, that will entitle him to the same free healthcare as locals.

Hope that helps. Your Dad is obviously a special man who deserves the best care,

Nikki

[PCUK Nurse Jeni]

Hi Gems,

Welcome to the forums, although in such sad circumstances. This is a wonderful community, and I am sure that you will get a great lot of support from the others on here.

I am really sorry to hear that your dad's cancer has come back again, and that things are difficult right now.

Great advice from Sue and Nikki - does your dad have a community MacMillan nurse? If not, then he should have. and yes, the pain issue needs to be sorted out, especially before he goes to Munich, as this will encroach on his enjoyment of the trip if he is in constant pain. If he has not already seen a Palliative Care Consultant, then do ask about this, and hopefully, he will get referred on. These are experts in getting pain under control - as Sue said, sometimes it takes a bit of time, and sometimes, because of this, they like to admit folk to a hospice environment so that they can titrate the pain meds under close supervision, get the pain relief at an optimum, then discharge the patient with an effective regime for pain relief, whether that is patches, syringe drivers or medication etc...They can also provide effective anti-nausea medication etc....

Do email us on support@pancreaticcancer.org.uk should you require further help.

Kind regards,

Jeni, Support Team.

[Gems0804]

Thank you so much for your replies. Sorry it's took me so long to write back these last few weeks have been hectic, holidays, appointments and finding out I'm pregnant I don't know if I'm coming or going.

Good news with the scan the tumour is stable, I was hap pulp eating my words about chemo when we found out. Since then, my dad attends the local hospice on a weekly basis, they have altered his medication lowering the morphine which he was toxic from and they gave him nerve pain relief gabapentin. Amongst other prescribed drugs it has done him the world of good an I can see him lasting slightly longer than what the doctors think.

Your messages back really lifted my spirits and I feel this is a great place for me as I have not got much support else where. Your insight to things have really helped, I took little notes from your replies and carried on the way I've always been asking questions in my dads best interest, but with different mind sets, points of view and other peoples experiences. So for all your help and support I thank you dearly xxx

[MSH]

Gems I'm really sorry to read your father's story, and I hope things look up for him.

Two quick questions, did you get to Munich and is he still on chemo?

Mark

[jay]

Hi, so pleased your dads tumour is stable and he has responded well to the medication.

take care x

[nikkis]

Such good news about the scan, and sounds like your dad is getting great support now too. Congratulations on your pregnancy, take good care of yourself,

Nikki

[LMD]

Hi, good to read things are now stable with your dad. Hope you are feeling ok and do look after yourself too. xxx

[sandraW]

Good news about the scan results, we too have been away so I am just catching up on here, the people here are amazing aren't they, glad you are getting the support you need. take care sandrax