No answers

[RSK]

Found out my dad had PC three weeks ago, he has lots of other ailments like colitus that disguised the symptoms. A lot like endee and her husband. He was referred for a CT scan and they kept him in becuase he had a blood clot on the lung and came home after two and a bit weeks of nothing happening in hospital on Tuesday. The annoying thing is he needs heprathin for the blood clots and will have to inject it himself this weekend because the GP has not put a district nurse in place. My dad lives in a very rural area and can not keep travelling 30 mile round trips to the hospital for jabs and 20 miles to the GP because he is so tired. I am annoyed that he has been offered no help, not even given a leaflet. (I have kept this shorter, because other things have happened that I am not impressed with at all)

I am being very realistic about this and know his time could be very short and reading this forum has helped, on the other hand I do hope he lives for many months, but the detrioration in such a short time e.g. losing a stone in a week whilst in hospital does not look good. I live 250 miles away and have been to visit but I also am needed at home and feel helpless, family keep asking what is happening? How is he? Do you think he has long? I have no answers. My mother needs as much support as she can but has had none. I have urged her to join a forum like this, but she hasn't. They are both 63 and been married 43 years, I am losing a father but her a life long friend. My concern is that my dad is kept as pain free as possible and that they can enjoy some time together at home, but how can I prepare my mum and my sisters for what is going to happen? Where can I get her the support she and they are going to need?

[ali]

Hi RSK I am so sorry to hear your story

I think you should contact your dad's GP and tell him to get his act together---sooner rather than later!

He should get the district nurses involved then probably a social worker who can arrange for carers ( for personal care )

Also your dad should have been referred to a Community cancer care nurse ( probably attached to a Hospice )--who will assess pain and symptom relief and give the appropriate treatment so he does not suffer pain/nausea etc.

This should be organised as soon as possible as believe me this disease seems to progress SO quickly ( from self experience ,joining and reading these boards end ofJune )

My mum's and family's experience with mum being in hospital for 14 days was pathetic---in a general GI-Tract ward who did not seem to know how ill she was.

Hope this is of some help

You will get lots of answers on here over the weekend

If you are interested you will find my story about my mum on the boards --Carers etc./Advanced PC Boards

Take Care and be brave

Helen xxxx

[RSK]

Thanks Helen, I am getting annoyed about this. His GP showed him today how to inject himself so he didn't have to go to the hospital. The hospital has been a joke, he was on the cardi ward for the blood clot and ornocology didn't want to know until they knew the type of cancer he had. This meant he would need a liver biopsy which they said and my mum and I agreed was pointless and painful. They then said he could have a magic eye Tues or Wed just gone, did not happen and he was refered to out patients and sent home, as far as i'm aware he has not seen a cancer specialist, let alone a nurse, mum hasn't seen anyone from the palleative care team. He is now on oramorph and even then whilst in hospital they made him wait in pain, for days they only let him have 2 paracetemol every 4 hours, he takes those regulalry for his arthritus, not for extra pain. His CT scan was urgent and he had to wait 2 weeks and the GP said to him he was lucky as some wait four months! My dad got angry because he was late for his jab by 10 mins yesterday (mum couldn't get him out of bed) and they made him wait an hour at the surgery and today on time he still had to wait half an hour. I have managed to get my mum to talk to the local health board about how much time is being wasted and they said they would look into it. She has not said any more on that. I just think it is awful, the man is dying and you would be in more trouble if you treat an animal like that.

My heart goes out to everyone on here, who are going through or who have been through it, and those who have suffered and are suffering are brave people, I hope one day there will be a much easier way to diagnose this cancer earlier on so it becomes less difficult to fight later on. I also hope my dad and mum can get through this in their own way and that in the coming few days and weeks my dad knows how proud we are of him.

[ali]

Hi

I would keep at GP to get a package in place.

And Jeni (nurse on this site will advise you --much better than me )

I only joined end of June and the posts that have come in are scarey--nearly all the same story ----Hospital care is not good--as most nurses not aware of rapid progression/do not know diagnosis/relatives cannot get to speak to doctor easily on and on!!

Hope you read my story----nearly 8 weeks since my mum slept away--but she had until recently 78 healthy years and had a nice life.

so i am so sorry your dad is only 63years ,this PC seems to be any age.

Although i am a Practice Nurse ( general nurse and midwife years ago )--i never knew very much about this illness till June.

We had retiral collection at funeral-- raised £577 for PCUK

So sorry to go on and on

But your family have to get things in place soon

Helen

xxxxx

p.s.

( i hope when you get time you will read my story )

[Nardobd]

Hi RSK and I'm sorry to hear about your Dad

It's scary but in my experience the NHS is not a proactive service these days. Since my husband was diagnnosed in 2009 we have had many instances where I've "thrown my toys out of the pram" including making complaints to PALS (Patient Advice and Liaison Service) and the hospital management. He gets reasonable service now and I'm sure that it's because I've demonstrated that I'm not scared to complain.

I've always taken the line that if there is one group of patients who should not be expected to wait it is those with aggressive cancer, such as pc. If Mum isn't up to complaining (which would be quite understandable), then perhaps you should step in, if you're able to do so. Since your Dad doesn't seem to have a consultant at the moment, start with the GP - ring and speak to him. The trick is to be firm and assertive but without being rude. Tell him what is required (don't ask for it because that gives them the opportunity to explain why they can't provide). Get the name of the consultant your Dad has been referred to if you can and follow up there too.

Another organisation that may be able to help on the practical front is Macmillan - they have nurses and know the system, so they can help you get things done.

Lastly (and I know that money is the last priority right now) having cancer is expensive and you should encourage your Mum and Dad to apply for everything they can. Dad should be entitled to Disability Living Allowance and, if he needs looking after, your Mum may be able to get attendance allowance. Again Macmillan will help out with that if asked. The additional monies might help with the cost of travel to and from the hospital.

My thoughts are with you and your parents.

Nicki

[RSK]

Thanks Niki for the advice, you sound like my kind of person!!

heading back tomorrow so will be able to do a lot more then. It just seems to be taking a quicker hold than expected and very aggressive, he is sleeping a lot and Mum is finding it very lonely, even though he's in the house. Hopefully I can offer her some respite next week and get something done.

Robyn

[ali]

Hi RSK

Nicki is so right and what i said you have to take control and be proactive in trying to get decent care arranged.

From somewhere you will find the strength to go forward with this.

Yes it can be rapid--so get prepared mentally--your dad will feel/or need to sleep lots --so you and your sisters have to be there for your mum in the next few weeks

Thinking of you all

Take care

Helen xxx

[RSK]

Doctor actually going to make a home visit today, so we are waiting. Dad in bed, moaned about doctor coming and said he wished he knew what was wrong with him, he is still in denial. He has been told 3 times at least. Mum spoke to McMillan today, but they live in West Wales where there is little McMillan help. Doctor just turned up!

Helen I can't find you on the forum do you have the title of your post, I would love to read it.

Robyn

[PCUK Nurse Jeni]

Hi RSK,

So sorry to hear about your dad.

Please email me at support@pancreaticcancer.org.uk if there are further questions you might have in relation to the care for your dad.

Kind regards,

Jeni.

[ali]

Hi RSK

You will find my story in a reply to " Am I Being Unreasonable " on 27/06/11 and a reply to "Out Of Blue Diagnosis "

I did not actually start my own forum.

Hope GP was of some help to you all.

Take Care

Helen xxx

[ali]

Hi RSK

Have been wondering about you and your family over the last couple of days.

Hope you have some " care " sorted out for your dad.

Hope your mum is bearing up too.

Take Care

Helen xxx

[RSK]

Hi Helen,

Had a late night last night as mid afternoon dad complained his leg hurt a lot. We had a look and it was very swollen and the foot was cold. So mum called the out of hours GP and decided to take him in to see her. She said he needed admitting, which he didn't want, but he had not been with it all day (only got up 1'o'clock time and just sleeping and not following whats going on). He then had to wait 2 hours for an ambulance to take him to another hospital, because there were no beds in CDU in the local hospital.

Got to hospital 40 mins from home at midnight and he was assessed very quickly, he has a blood clot in his groin, he has pneumonia, urine infection and due to the infection is very disorientated. They have put a catheter in to make it easier for him. Got in at 4 this morning. Saw him over an hour ago and is was still not with it, did not know the day, where he is, hallucinating etc.Adamant that he does not have cancer.

[RSK]

Nurses at new hospital very good and the doctor actually asked how I felt. The doctor is adamant that when and if he comes out there will be a care plan in place, so some progress.

The Doctor / GP was told he was in hospital but did not return the message. Some of his comments did notgo down well with doctors in the hospital.

Mum got in touch with McMillan but they are not based in West Wales but gave her info for Tenovus, she has also joined up this forum, so hopefully things are there to help.

So that is where we are now, off to bed and another day tomorrow, hopefully he will make more sense once the antibiotics kick in, but he is a stubborn moo and I wish he would accept what is wrong with him and its not a conspiracy.

Thanks guys for your support (Helen, I had read your story, it really touched home)

Robym x

[Nardobd]

Hi Robyn

Hopefully the antibiotics have kicked in over the weekend and your Dad is now a lot better than on Friday. Would appreciate an update as to how things are going when you have time.

Nicki

[RSK]

Hi folks, dad still in hospital, but he is a little better, still imagining things e.g. cobwebs and signing forms. He is just very tired and even going to the toilet wears him out.

Should have had a scan today for the blood clot, but have not had a chance to speak to mum yet. Have come home for a couple of days as she has other family members visiting and I have been up there for a week,my husband was missing me.

Mum is plucking up courage to visit a local hopsice, my sister may go with her at the weekend, hopefully we will know a bit more about what they would like to do with dad. Very little to say at the moment, he just went downhill so quickly from the start of the week.

[ali]

hi RSk

Hope things are stable

Helen x

[ali]

hi RSK

Hope things are stable

Helen x

[RSK]

Dad not doing to well, he is going to have the clot drained tomorrow, but mum is concerned because in his notes they have put down to do a brain scan (not said about this in person) because he is still very confused. Who knows what's going on, if he has had a small stroke it's just the icing on the cake!

Mum up and down, her washing machine caught fire this week, but she keeps on going and is getting a new one tomorrow. I just wished Dad was not so confused so the whole thing could be a little bit easier.

[ali]

Hi RSK

sorry sounds awful for you all

all you can do is keep strong for your mum--not easy

you will be on auto mode for next few weeks

thinking of you all

nearly 10 weeks since slept away and one good day and one bad day

Helen xxxx

[RSK]

Just spoken to mum, she took a friend with her to visit dad tonight and he was a bit brighter. Mum says it was because he had a visitor who was not family, so he put on a bit of a show!

Apparently he is not having a brain scan, they mixed him up with someone else. He is having a stent to get rid of the clot in his groin and we will go from there.

Helen, no one can ever take the place of your mum and I can only imagine what you are going through. If I lost my mum it would leave a massive hole in my life. My dad is fab, and I love him dear, but even he will admit I am a mummy's girl Lets hope dad has a good weekend and you keep strong.

Robyn

[ali]

Hi Robyn

Thanks and you keep strong too.

These boards are helpful knowing people understand how hard it can be,but there always seems to be a sadder story than one's own--especially in the varying age groups

Take care Helen xx

[ali]

Hi RSK

How are things with you and your family?

In my thoughts

Take care

Helen xxx

[RSK]

Sorry I have not been on for a while, partly because I could not log on, but it is all sorted now.

Unfortunatly dad passed away on the 25th August in hospital with his family around him. On the Sunday before we were called up and told the next 24 hours were critical becuase pneumonia had set in. By the time we got back to Wales the antibiotics had set in and he was responding. I decided to stay with mum for the week and to see how dad went. Mum had arranged to see his doctors on the Wednesday to talk about if he could come home etc. On Tuesday dad seemed ok, if still a little confused e.g. seeing cats (this was not unusual as he had been seeing builders, poodles and cobwebs in previus days). A friend came to visit him and he seemed quite jolly.

The following day, we went shopping and bought him some pots of peaches and custard because he was not eating very much. We got to the hospital for 2.30pm as that was the appointment time with the doctors and there was no afternoon visiting. Two doctors, the ward sister and a nurse came in and told us dad was not fighting the infection and we could either give him antibitoics through his neck which would be painful and probably not work or let him go peacefully. We decided to let him go. I called my sisters to get them up to Wales.

Dad was moved to a side room, and he knew his time was coming to an end. He refused to go to sleep and constantly told my mum he would love her and would she love him as much too. He said he could see rainbows. He wanted a cigarette (not smoked for 10 years and he was on a ward with smokers)he wanted to go to the beach. My sisters got there at 11.30. By that time we were all very tired and were taking breaks. Dad was on a morphine drill and it ran out so he was sedated as he was lashing out in pain. My dad passed away at 2.45am with my mum cuddling him. I was not there as I took a nap believing he still had a few more hours. I was just about to head back when my sisters came to tell me that he had gone.

Dad's funeral is tomorrow in the local church. I saw him tonight to say goodbye and he looked so peaceful. I have three sisters and we are going to break tradition and act as pallbearers, dad would have wanted that, he brought us up like boys! We are very proud of our dad and regret that we only had just under 6 weeks to say our goodbyes after his diagnosis. I will always be angry that 5 of those weeks were spent in hospital and all our quality time we could have had with him wasted, due to the lack of care provided for when he came home the first time.

Make the most of the time you have with your parents, it will never seem long enough once their gone. I would also like to say we saw rainbows everyday for the first few days after his death and it brought us comfort

[louiepc]

I am so sorry to hear you sad news. My deepest condolences to you and your family.

lots of hugs being sent your way.

Louie xxx

[Nardobd]

Robyn I'm very sorry to hear your news and my thoughts and prayers go out to you and your family. I hope that today you get a chance to celebrate your Dad's life and remember him in the way you would like to.

Much love

Nicki x