Our journey to date

Just thought I would write down about my dad's journey after reading so many of your stories.

Jan 15th dad (78) took himself to the doctors as felt unwell, a cold he said but he wasn't even sniffy, doctor rang an ambulance as he was very breathless. Met him at hospital, loads of questions and tests, eventually sent to surgical triage where he was to be kept in. They did a full CT scan as they wanted to check his chest for his breathlessness, his bladder as he has had bladder cancer.

Jan 17th hospital rang me to go in and have a meeting with doctor. Took hubby and me with dad to a side room where we were told he had pancreatic cancer and that it had spread to his liver. Also told it was inoperable and that he would be referred to MRI and they would discuss his case the at the next meeting and to go home and take it all in.

Jan 19th a district nurse came and took details and said she would see him in a month.

Jan 22nd hospital rang to arrange appointment the following week.

Jan 28th met the consultant who then explained that cos of dad's health now, very breathless and tired looking, that he wouldn't be strong enough for chemo and also they didn't like to give chemo if it meant that you only had a couple of weeks extra to the weeks you have left. That hit me like a brick. We then left hospital with steroids to try and help him eat, creon to help him digest, paracetamol and codeine painkillers.

Jan 29th macmillan nurse comes and introduces herself helps with filling in DLA form and arranges visit for a weeks time.

Jan 30th district nurses coming everyday to check blood sugars.

Feb 1st dad really breathless so call doctor out and gets checked for infection clots but gets the ok.

Feb 2nd called doctor again as dads speech is shallow and it's like hard work for him to talk. He isn't eating and has no energy for anything. Doc changes some med and gives oramorph too plus some food supplements.

Feb 3rd macmillan nurse comes out and can see a change in dad. Reduces his steroids as it's not working and arranges for a medical pack to come ready for injectable painkillers. Also talks to dad about what care he wants to be given and also about DNR which he says he doesn't want to be resuscitated. Arranges for doctor to come and put this in place along with statement of fact ie that he is dying and if he goes, police don't get involved.

Feb 4th dad slept in chair til 5.50ish then went to bed til 9.30 when I went in to check which was hard as everything was going through my mind cos he had slept so much. While I have nipped out he has told my hubby that he feels worse today.

So that's our journey so far. It's a mixture if emotions and never done do much crying in my life. When my mum was poorly and passed she was in (name removed - moderator) so had nurses around but he at home I'm bewildered with what is happening and how he might go, it's so scary.

Will add on again in a day or two how things are going. Sorry for long post but hopefully it will help someone else with this awful disease.

Hi Eileen,

Its a terrible shock and so difficult to live through. Some lose parents or partners in an instant with no time at all to prepare or say goodbye or have one last hug and we have the other extreme where we have to live through it with them.

Not being able to talk or move very well are all signs that his body is closing down. No one can say what order this is happening in or what will be the last thing to go but there is a general view that they can hear pretty much up to the end. I am glad he is sleeping, he must be very tired now and sleep gives him peace. Hopefully, the injectable drugs will enable him to slide peacefully away when the time comes. In the meantime try and make this time the very best it can be for all of you. Do whatever he and you want to do and don't bother about anything else at all. Everything else will wait.

All I can say is every one of us on here knows your agony and we are here in the wings for when you need to share or vent or want advice (in so far as we can give it). I think you already know that the nurses on here are brilliant so don't be afraid to ring them if you feel you need some support.

I send you love and prayers and best wishes for a peaceful night, M xxx

Just sending love and positive thoughts...

Vx

Marmalade has said it all and she is spot on about our nurses if you need them they will give you the best advice available. It is difficult watching our loved ones go through this horrible disease .....thinking of you and your Dad ..stay strong.

Elaine

X

Thank you all for your lovely words. It's the unknown that I don't like. I know he is ebbing away but it's not knowing how it will happen is scary. Dad has started being sick, pea green bile, and is now very weak can't even take his oral painkillers so have rang nurses to see if they can start with the injection pack they sent me.

Thank you xxx

I'm so sorry you are going through this. Try not to think about the end, as hard as that is. You just need to make sure your Dad is kept comfortable but don't forget your health in all this too.

My hubby was unable to swallow towards the end so yes, its good now for the needles to come out.

Wishing you peace and strength xx

Sending you a massive hug

love Jayne

x

Very sorry to hear about your struggles, you've been through a lot! I hope things calm down and you can get the help you need for your Dad

Rob

x

Hoping things are calmer today.

Vx

Hope things are a bit better today and your Dad is more comfortable.Thinking of you

Elaine

X

Yesterday (sunday) was a bad day dad has really gone down. Can't walk or even stand, couldn't go to the toilet and has slept all day. Doctor came to give him anti sickness injection as well as a dose of morphine as he couldn't swallow properly. He slept all day and night. Today we have had a hospital bed delivered to make.him comfier also has had a catheter inserted. Very weak and is getting a bit agitated. Looks like another long night on the settee.

Thank you for your thoughts and I hope everyone else is coping with their situations xxxx

Praying for you Eileen.

Love, Mo

Hi Eileen, so sorry Dad is struggling but glad your GP is helping. I think the GP can help with the agitation if it continues so don't worry about calling them as often as needs be. We found that drugs needed tweaking fairly often. The catheter will keep him comfortable although if he is not eating or drinking that side of things will gradually stop.

I hope you get a little rest. Best you can do is rest when he does and just be there in case he gets worried.

I wish you a peaceful night xx

Dear Eileen, I hope you managed to get some sleep last night. Thinking of you and your dad and wishing you strength.

x Stepuha

Still sending love and positive thoughts...

Vx

Hi sorry not been talking but it's been a stressful week. Dad has gone down really fast since last week it's quite a shock. Our lovely Macmillan nurse Sarah came today and has told us that she will be surprised if he us still here on Monday and I feel she is right. He is so unsettled and is mumbling in his sleep. He has slept more or less for the last 48 hrs straight. We can't tell what he us saying and keeps pointing to something that's not there. Looks like it is going to be a long and tearful weekend. Xx

hello Eileen,

So sorry to hear that Dad is so poorly but in some ways glad that his trial is approaching an end. I hope he is a little more settled now. You can call the community nurses or out of hours for a stat dose of medicine to help him settle if you are worried.

Sometimes the drugs or the cancer or high blood sugar can cause hallucination, some people believe that those in this position see a trusted friend or relative who has already passed coming to guide them across the divide. All you can do is try and reassure him, let him know that all is well and that moving on will not be a problem for him, there is noting for him to worry about. I have told a few others what we told Louis, that no one told us how to be born or how to laugh or how to cry and when the time comes he will know what to do and all will be well, it seemed to reassure him. It's all you can do, reassure and make everything as calm as possible. We moved all the medical stuff out, brought flowers in and read nice things to him or played his favourite music. They say hearing is the last thing to go and Louis liked us to be around chatting or reading, just company.

I hope that you all have a peaceful night and send love and prayers xx

Hi dad passed in the night very peacefully. 1 day short of 4 weeks from diagnosis. Thank you all for your kind thoughts and messages and my prayers are with you all xxx

So sorry for your loss Eileen, losing a parent is always hard. I hope that in time you will find comfort in the many memories of when Dad was fit and well and full of life.

God bless you all xxxx

So sorry Eileen.

I can tell you from experience that in time all the sad and painful feelings will pass and the memories you recall most often will be the happy ones.

Take time to grieve, be kind to yourself and do exactly what feels 'right' to you.

Kind thoughts.

Mo

Eileen, I am so sorry to hear you have lost your lovely Dad.

This is such a wicked disease, and it can progress so rapidly, at least Dad is now at peace and free from pain and discomfort. You will be in shock that it all happened so quickly, in the space of weeks your Dad was diagnosed and then he is gone. Please take care, sending you love and strength to get you through sandrax xx

My sincere condolences Eileen.

Love, W&M xx

Thank you all so much for your kind words. I have found this forum to be so comforting as I'm not one to show others how I feel. Im the one who puts a brave face on for everyone else and I have found so much need to talk on here l. This is a horrible disease and I can't believe that it is so hard to diagnose and that it can kill so fast. But thank you everyone you have helped me loads xxxxxxx

So sorry Eileen.

Huge hugs...keep posting, it does help.

Vx

Thinking of you, and your dad, and your family.