Reaching out

[Lisa Kelly]

Hi all,

My dad (72) was diagnosed with advanced pancreatic cancer in Sept 2014. He had a stent fitted as the tumour was blocking his bile duct. The cancer was inoperable due to its location, wrapped around the artery and vein...

4 months of chemo did nothing to the tumour so my dad opted to stop treatment. He was more concerned with quality as opposed to quantity. He has his families' full support.

Just before Christmas he had a rocket drain fitted to allow the Acites to be drained off of his abdominal cavity. This has been being managed by mum, taking 2l every 3-4 days. Recently, the colour of the fluid has become darker and cloudier. He has also started to experience "discomfort" with this proceedure too. He regularly describes himself as feeling "wishy washy" or, if a bit rougher, "shi!!y". These days are increasing...His weight loss has increased rapidly of late, last week his was 10st 1lb, today he is 9st 3lbs. His appetite is now virtually non existent, he has calgen shots.

Last July we holidayed as a family in Mexico, where he ate like a King and came back at nearly 15st!

Today, we sought help from our family GP, who was brilliant. We listed all his symptoms and discussed them in great detail with her. She is arranging blood tests to look at his liver and pancreas functions as well as a general FBC. She has prescribed morphine based medication, relatively low doses to start with. She has arranged constipation meds and anti sickness meds too.

Dad has now acknowledge he needs a bit more help and support. Mentally he is fine and always has been since his diagnosis, he always said he rather he had this than anyone he loved. He is so very brave. He has helped others with their diagnosis and been so mentally strong for us as a family. We have discussed the eventual outcome and he has set all his affairs in order etc...ever worrying about how others are coping etc...

It just seems as if this horrific disease has stepped up its game, it is heartbreaking watching my dad, my hero, become so very frail and weak.

We are all finding strength and comfort from him and the whole family, it's just nice to be able to express myself on here. I know that lots of people are going through this.

The GP is also arranging for palliative care now, we are hoping that the expert care and support by the nursing staff will help us all.

Thank you for taking the time to read this, I know that if you are reading this that you are struggling too.

[J_T]

Hello Lisa

So sorry to hear your dad is suffering with this awful disease. It seems like you are doing a great job and have everything sorted to make your dad comfortable.

You sound like a strong and close family, it will serve you well.

Hope your dad can remain comfortable.

Julia x

[rsk1974]

Sorry to read about your Dad Lisa, hevsounds amazing and strong, I'm sorry yet another family is going through this horrible disease.

[kittycat]

So sorry to hear your dreadful news but you seem as if you're doing everything you can for him and he sounds like a fighter! Stay strong and take care.

Sue

[Didge]

Lisa, thanks for posting. You put into words so many things I am going through. I am amazed at my fella's bravery and his concern for the people he is leaving behind the same as you describe. He too is losing weight rapidly and has virtually no appetite now. Sounds like you have a good GP and will be on top of symptoms as they occur. X

[Lisa Kelly]

Thank you all for your kind words, it is a very personal battle that we are all going through however, we are not alone. The posts on here move me to tears but I find I get comfort and gain strength after reading them.

I just wish I had found this site sooner.

[LMD]

Hi Lisa

So sorry to read of your Dads diagnosis...

This forum provides invaluable support and information. The nurses are amazing and so helpful too - you can phone and speak to them or email them. Sending you love and strength.... X

[Lisa Kelly]

Tough day yesterday...

Dad was wanting to discuss what happens when he has gone, so through snot and tears we listened, contributed and after feeling as if we were stuck inside a washing machine on full spin for an eternity, we had all the basics covered.

I know mum found this very difficult (they really are the couple that did everything together).

I felt it really helped dad, he is the most important person, and after a patchy night's sleep; I oddly feel a little better.

I am not sure if he just wanted to sort it before he became very ill, if he feels worse than he is actually telling us or if he senses the "time" is coming.

This forum is helpful, I find writing my thoughts and feelings helpful, more so than a diary because others in similar circumstances other guidance, advice and support.

Let's see what today brings...

Lisa

[Sueoliver]

Hi Lisa ,

I am sorry to hear about your Dad. My Mum was 76 when diagnosed in May 2014. Her prognosis was 8-12 months. I know how you feel having travelled this journey and it is hard! My Mum is very poorly at the moment and it is hard to watch. All we can do is be there to support and listen to them. It is sad when they talk about their affairs but I suppose it is very important to them and helps to let us know.

You are doing an amazing job and we are all here for each other on this forum. I have learnt so much and the nurses are wonderful too.

Take care and stay strong.

Love Sue x

[Lisa Kelly]

Update:

Yesterday dad was admitted to our local hospital following raised bilirubin levels in his bloods, he also had low BP and a racing pulse. Initially, they thought his stent may be blocked but began IV antibiotics in case it was an infection.

24hrs on and there is a slight improvement in his BP 88/57 and a pulse rate of 91.

The nursing staff were concerned over his supine output and have put him a catheter in, first collection was approx 80ml and a bright but dark orange colour. The second collection, was less in amount and a virtually a dark brown...

He is finding the catheter uncomfortable and at times is a little confused, I am more worried tonight.

[Sueoliver]

Hi Lisa is your Dad jaundiced? My mum had been in and out of hospital many times in the last year and they have always sorted her out. It is worrying but try and stay positive. If there is an infection it can make them confused. He is in the best place for them to help him. I know how you feel I have been there many times.

Sending you a hug .Stay strong and positive.

Love Sue x

[Lisa Kelly]

Thanks Sue for replying.

He doesn't look particularly jaundiced, whites of eyes seem ok and no itching- like he has had in the past.

He is exhausted, every little move creates an "o dear..." This is what he does when he is in pain, he has high pain tolerance and others may think he is ok. He won't make a fuss, he isn't the type, we have informed the nursing staff of his personally and they seem to be providing the care he requires.

[Lisa Kelly]

Dad is still in hospital and getting weaker and weaker. It seems as if the ultrasound scan has ruled out a blocked duodenal stent. He has been on IV antibiotics for a suspected liver infection...

Today, it seems as if the scan may show some abnormalities on the liver...

[Lisa Kelly]

It seems as if he is regressing further. Drifting in and out of sleep. Commenting occasionally on bizarre dreams; he was making a Samari sword. Seldom talking but when he does not always making sense...I fear we won't be able to bring him home.

[Sueoliver]

Hi Lisa,

Sending you love and strength. Thinking of you.

Love Sue x

[rsk1974]

Hi Lisa, sending you strength and love, infections can cause confusion in dreams etc,but without being blunt it may be the cancer taking hold. Lots of love.x

[Lisa Kelly]

I have thought of the infection too but it seems the more antibiotics he has the worse he gets. He is now on oral antibiotics as opposed to IV ones. Can't wait to see consultant tomorrow to discuss what they think they have spotted on the liver. We are all too aware that it is common to get a secondary cancer, this is what we are expecting to hear.

The nurses don't seem too concerned over his decline, I wonder if we care and see more because 1) we love him and 2) we knew what he was like the day before he was admitted...

I haven't ever really thought about the end until now.

Thank you for those who post support on here x

[rsk1974]

The nurses are just doing their job and don't really know how your dad before he was admitted, and if they are not concerned then take that as a positive. The nurses where good with us and we asked them what to expect when the end was near. U remember on the Monday mum asked one and said I don't think he will last until the weekend and the nurse said no, dad passed away on the Thursday night. If you have the strength ask all the questions you have.x

[LMD]

Thinking of you Lisa xxx

[sandraW]

Hi Lisa,

Just to let you know I am thinking of you and all the family, it is so hard, as I know from personal experience, just try to stay strong. take care love sandraxx

[jay]

Thinking of you all Lisa,

love Jayne

xx

[Lisa Kelly]

On Monday, my dad discharged himself from hospital as he was determined to be at home. After treating him for an infection the doctors then thought that his stent may actually be blocked...This procedure would have meant he had to endure another ERCP, which he was strongly against. He barely tolerated the original fitting of the stent ups on his diagnosis in Sept '14, he knew he didn't want to repeat it now- being as frail a he is. Not even sure that a consultant would have even contemplated carrying out the procedure anyway.

His face was full of joy and relief as the ambulance team brought him home. He has had relatively comfortable nights. He is drinking less and resting more but there are times he is quite animated but quickly tires.

The district nurse has visited and our local hospice nurses have telephoned to start putting together a care plan. They are arranging a GP visit as she wants a DNR on his notes, should the need arise.

We are taking each and every day as a bonus and are relieved that he doesn't seem to be in pain, just exhausted and frail.

The family are supporting his wishes and are finding strength from his strong mind.

We thank you for keeping us in your thoughts.

XXXXX

[kittycat]

Hi Lisa, so glad your dad is home and out of pain - he's in the best best place with all of his loved ones around him. Thinking of you at this difficult time.

Sue

[sandraW]

Hi Lisa,

I am so glad your dad managed to get back home, its my only regret that I didn't manage to get Trevor back home, where he really wanted to be, but they couldn't get his pain relief sorted in time.

You all sound as though you are doing a marvellous job supporting dad in his wishes, and as for the DNR I think its important too to get that sorted, as awful as it sounds its important in our kind of cases, when death can be a blessed relief, even though we don't want to loose our loved ones.

I am send love and strength to you and all the family, please take care sandrax xx

[Sueoliver]

Hi Lisa

I am so glad your Dad is home. My Mum always wants to be at home. My Mum has a DNR on her notes as well. I found this hard but I Understand why! We also have visits from the district nurses and community pallative nurses from the hospice. They are all wonderful and supportive.

You are doing a wonderful job supporting your Dad and I am sure he is very appreciative. I know how hard it is and I take one day at a time now. My Mum's aim is to go to her Granddaughters wedding on the 29th August and I think determination and will power will get her there!

Stay strong and take care of yourself as well.

Love Sue x