Thank you and our story... but we are not that far yet!

[Elaine123]

Just on to see if there is any update on your Dad ...hoping he is stable again...this has been one huge worrying time for everyone and sometimes it is this every day is different with this disease syndrome that seems to give us the stress connected with it. You take care and wishing like mad that your Dad picks up again soon.

Elaine

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[Proud Wife]

Yes stephua that was a really lovely post.

DG I'm hoping no news is good news? Best of luck for that MDT MEETING tomorroe xx

[Justamo]

Hope things are OK DG, thinking of you.

Love, Mo

[Dandygal76]

We were not okay, then we were and then we weren't and now we are... sort of... by Friday we will be better (hopefully). If that has made you dizzy then you are still nowhere near to how we all feel.

I won't go from the start because you will fall asleep before I get to the end. Let's got to 1pm ish yesterday. My dad was in excruciating pain. This had been going on for a hour and he was on his knees. I was completely oblivious and at home. Then my sister called me... you need to get down here right now as we don't know what to do. Dad is on his knees and puking because of the head pain. They had asked twice for his prescription morphine and still none had been given to him. An hour... you would not leave a dog like that and my mum and sister was distraught (considering we had been waiting 2 days for the palliative care team to turn up). I said I am on my way and I will sort it. Then I thought what can I do that they haven't from there and I took my coat off and signed on my work e-mails. I call the hospital and said ext .... (cancer clinic manager). Voicemail. Phone back... bleep number ????, no response... bleep her again. bleep her again. Lovely lady picks up and I said in tears my dad is in very bad pain and no-one is doing anything about it. His medication is not sufficient and whatever way this is going he should not be in pain and I will not accept otherwise. She went Dandygal (well she doesn't call me that... hahahaha) I will sort it. You need to trust me and within the next 10 minutes this will be sorted just go and see your dad. Well I do trust her, I didn't think she could go higher in my expectations but I have found a level I am not even familiar with myself. If there is a definition on an angel... she is it.

I leave the house and when I get there (which is less than 10 minutes) my dad is surrounded... palliative care team, ward nurses and some weird bloke who I think may have been there as a spectator. Dad now has a driver and a constant feed of drugs. He has been taken off some though as his liver function is going down hill.

I leave to go to the shop to see if I can get some soleros (dad's latest fancy) and as I walk out this lovely lovely very busy cancer clinic lead and manager walks onto the ward and she gives me a hug! I said to her I did not do that lightly... I try very hard not to abuse my links with people. I have the oncologist e-mail and I have never e-mailed him. I don't want to be a burden, I just want to make sure my dad is okay as one of many patients. She said I did exactly the right thing and dad should not have been suffering. I said I wouldn't mind if it was a desperate ward but I have walked around and no one is in distress. You expect that in a&e but not on such a quiet ward. I have been assured it will not happen again.

So, she takes me to a side room and that busy lady gave me 30 minutes of going through everything. Treatment now, end of life care, how I screwed up not mentioning symptoms before. It was like she had the whole day for me. Then she went and did the same with dad.

She said there are no guarantees but dad has done so well. He will be transferred today after the MDT. Forget paying private for the gammaknife etc if we do not get it... he will get the best possible treatment. It is not funding and dad is so suffering there are no waiting lists. She expects the brain to be treated this week and it is not the cancer but the swelling causing the problems.

I have had the biggest fall with my sister. I tried to talk about end of life care with a view to getting us some counselling on what to do. She went mad and said to me we all have a say in this you know... I said yes of course and that is why I want the counselling for all of us. Anyway, ultimately this is mums decision (and dads if mum wants that). Then she had the audacity to moan I did not get there until 4pm on Monday, even though she left early and I spent longer with him. I messaged her and told her what a selfish cow she is (pc does not bring the best out in us all). Do you want a voice... do you really?? Well, I have two skype conversations going on this week over gamma knife and something else at £400 a pop. You do it. I was also trying to sort out counselling around end of life care... you do it. Bear in mind that end end game PC is crap. So, you don't want to discuss DNR... on your head be it because now it is all over to you and if he suffers it will be on you. Yes you have a voice. So, I was talking to the palliative care team in the corridor yesterday when she came out to ask a question. When she hovered I said... I am talking about end of life care and she put her hand up and walked of saying she didn't want to know. So, she doesn't really want a voice after all. x

[Veema]

Quick, quick reply as I'm on my very short lunch break...

Words said in the heat of the moment cannot be taken back...stressful situations bring out the worst in us, so take a deep breath with sister and don't rise to her...you'll only end up regretting it.

You are absolutely right about the DNAR...it needs sorting...it would be awful to watch your Dad go through a resuscitation to prolong his life just days or weeks.

Sending you all my love and loads of positive vibes.

Vx

[Dandygal76]

No dad, you couldn't just get pancreatic cancer. It had to spread to stage IV. You couldn't go through everything you have and just feel better for a little bit. You can have a CT scan yesterday with no sign of cancer in the liver and the body, the chemo etc did its job. You couldn't have just got a treatable spread of cancer to the brain from PC which the dr said today would have been the better outcome. Nope... the medics are all very shocked... Paraneoplastic Syndrome. Apparently his body is attacking itself. Bloody brilliant. x

[Dandygal76]

And thanks Veema. People do not always realise how much their contribution helps on this forum. I duly shut the hell up and took it on the chin. x

[Quickasyoucan]

DG I am sorry for your news. When mum was diagnosed with MND it felt like how could she get something we had only heard of through Stephen Hawking for which there is basically no treatment. Now we are largely back there with dad. Life sucks sometimes. However your dad could not ask for a better warrior on his side x

[Veema]

Dandygal76 wrote:

> And thanks Veema. People do not always realise how much their contribution

> helps on this forum. I duly shut the hell up and took it on the chin. x

I hope I didn't upset you...I don't think you should take it on the chin...just breathe, count to 10 and respond in a way that means you won't regret anything later...if she wants to behave badly, that's up to her...you can be (and are) the bigger person.

I'm now off to Google that syndrome.

Huge hugs

Vx

[Dandygal76]

None of you could ever upset me. Sometimes it just takes someone saying something very simple to snap me out of the path I am on. Emotions interfere with rational decision making.

I have not been on google yet (how good am I!)

I have called the LOC for a consultation. This is not just my usual whims. The oncologist when I was there said it was v bad. Then the paliative care team round and said they are discussing with a consultant as not even sure if their treatment will be working as not dealt with it before but they are giving dad same drugs anyway. When I left the angel came round and told my mum and sister it was good news. Then another dr (hematology I think) came round and said they are not even sure if it is that.

I have just e-mailed the hospital and said... not being funny but why don't the 4 of you put your heads together and tell us a joint message because right now you are not being very helpful.

It def is not brain cancer though... they cannot control the symptoms at all. I just woke up, threw up with stress and I am going there now to make sure he is okay. x

[Elaine123]

Hi DG I am so sorry you are having all this messing around from four professionals who should be able to put their heads together and find the best way forward for your Dad. It's not only frustrating and stressful for you and your family but it's detrimental to your Dads care. Constantly thinking of you all especially your Dad. Take care and stay strong

Elaine

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[Dandygal76]

Okay... you probably all thought I was nuts going to the ward at 4am this morning but they have been truly rubbish. He had no fluids in the morning yesterday on checking him at 8am and regardless of the fact my mum and sister requested several times for fluids during the day he still had none 6 hours later. He was parched. So, I go out to the desk and said to them, I know you are busy and we are all trying to stay calm but if dad does not have fluids in the next 20 minutes I will sit by his bed and phone PALs and anyone else in management that will listen to me about his lack of care. It will be more hassle for you to deal with that than actually get him some fluids.

Then I find out (I should have checked) that the palliative care team had been out in the morning as well and the consultant had upped everything to help manage his symptoms and no one had actually implemented any of it. And his symptoms are bad. So, then I had to deal with that.

So, when I woke up this morning all I could imagine was him writing in head pain, constant sickness and thirst. I could not sit at home and worry about that. So, I trot into the ward and and no one battered an eyelid or said a word to me. He was also settled and with fluids and managed to moan about the nurses waking him up to do blood pressure all the time. If my dad has the strength to have a bit of a moan about small things then I tend to take that as a positive sign on the whole nd so I came back home and updated my mother she did not have to panic and things were calm.

We are still just in groundhog day though but a lumbar puncture at 12 and hopefully a formal diagnosis of what is going on. I will update you on whatever obscure rare thing it actually is and that is probably only usually found in giraffes or something. xx

[WifeampMum]

Oh boy, what a horrendous time for you. Just want you to know that you are very much in my thoughts at the moment and I hope the lumbar puncture gives answers that can be acted upon to give your Dad better quality and quantity of life.

Love and hugs

W&M xx

[sandraW]

Dandy, I would have done exactly the same in fact I probably wouldn't have come home.

He is your Dad and your priority, if he is not getting the correct care then you need to sort it out. All this makes me so very very sad, I feel so much for the poor people who have no one in their corner to fight for them, I had to be very careful when I was in the hospital with Trevor not to speak up when I saw whoever was in the room with him not getting the care they deserved. Sometimes though I couldn't help myself and I would have my say. Sending love to you all and you know we are thinking of you, love sandrax xx

[Sandiemac]

This saga is beyond belief but thank goodness you still have your sense of humour! I wish you and your family all the strength necessary to cope with what is to come, good or bad. I too am checking in every day to see how you all are. Sandie xx

[Guest]

Dandy, you do whatever you feel you need to do. If you get completely ridiculous we will tell you, promise xx

As long as you are not disturbing other patients you come and go as you see fit. I've been reading up, I guess you have too, seems that it is mostly rubbish news but just like with PC, some respond exceptionally well. It's great that they are on the ball with the tests but there is little point if the nursing team leave him without basic care. I so agree with SandraW and my heart goes out to people on their own who don't have a partner of kids to chivvy people. It really is inhumane and we, as a nation should be ashamed. Your Dad has you lovely people and10 aunts (!) and uncle Tom Cobbley and all by the sound of it so plenty of reinforcements! I agree that moaning is a fairly good sign!

Don't worry about replying to stuff, we know you are exhausted and don't expect it, we also know you like to pop on and vent sometimes. We will all be here listening xxxx

[Guest]

Hi all,

I had a message from DG on her birthday to say that the hospital seem to be getting on top of her Dad's symptoms a bit now although he has become a bit jaundiced. He is also eating and drinking a bit which is better than it has been.

There is no news on where any treatment goes next yet and the family are just relieved that her Dad is not in such distress and pain while they all try and come to terms with the new situation and what if anything can be done.

Dandy describes it as being in a 'strange place' which of course it is, but she is with her family and even found the energy to cook them all a proper meal on her birthday. Well done DG, I have been eating biscuits for quite some time now so understand what a big deal that is.

Hope you all have a peaceful night

M xx

[Elaine123]

Thank you for the update M what a relief that they are getting on top of his symptoms and his pain has subsided a bit. What a horrendous week they have all had. How many twists and turns can this disease throw at people.....there seems to be no end to how cruel it can be.

Hope today is a better one for Leigha and her Dad.

Elaine

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Edited February 5, 2017 by Elaine123

[Quickasyoucan]

Hi DG saw you were on line. Just wanted to say have been thinking of you and your dad. Mine isback in hospital again tho seems to be recovering again for now. I am flying to uk 2 weeks today. Sending best wishes.

[Dandygal76]

I was going to say go to sleep but is day there isn't it? x

[Quickasyoucan]

Sure is. Am at work but Dad and pc constantly in my thoughts. Do fancy an afternoon nap tho

[Guest]

Dear all,

DG has asked me to write a short post for those who might be concerned.

Sadly, Dandy's Dad died early yesterday morning. As you know he wanted to fight this disease and trialled a number of treatments, some with great success. In time to come the learnings from these and other new treatments will become the foundation for groundbreaking advances.

DG and her Dad did not lose their battle. He lived his life to the full, took risks, and together they helped push the boundaries forward for all those who follow.

DG will write herself when she is ready but was keen to say that no-one should give up hope, there are exciting treatments out there and more and more attention and resources are being directed at beating this.

M xx

M xx

Edited February 10, 2017 by Anonymous

[Proud Wife]

Beautifully said Marmalade.

DG, apart from what I've already said to you, how kind, caring and considerate are you, to not to want others to lose hope. You are one very special lady and a force to be reckoned with.

For now, please just concentrate on yourself and your family and getting through the coming days. Remember, I am only a train ride away. xx

[sandraW]

DG, so sorry to hear the news that you have lost your wonderful Dad.

I just wanted you to know I am thinking of you all sending love and strength and big cyber ((hugs)) no one could have done more, love sandrax xx

Thank you Marmalade for letting us know xx

[Justamo]

Kind thoughts, love and prayers.

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