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

[Elaine123]

Thank you PW for letting us know I do hope it can be resolved as like you I know DG's Dad is going through a rough time at the moment and support means the world when you are worried out your mind.

Thinking of every one

Elaine

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[WifeampMum]

Hey DG, commiserations. If I can offer support in any way please don't hesitate to email me.

PCUK - I'm very happy for you to pass on my email address to DG.

W&M xxx

[Sandiemac]

I can't really add anything to what others have said but it goes for me too. Thinking of you and your dad and hoping for the best. One day at a time is the way through this.

xx

[Justamo]

Hope Dad improves soon DG, thinking of you.

Stay strong.

Much love, Mo X

[stepuha]

Thank you Proud Wife for passing on the message.

Dandygal76, thinking of you and sending you and your dad love and positive energy.

x Stepuha

[stepuha]

Dandygal,

I finally read your full thread. What a story of inspiration and determination! Hats off to you and your dad!

Just a thought your recent developments and from personal experience. Since the new growth is located near the bile duct, the tumour may be pressing on it, causing the symptoms. Usually this would make a person jaundiced but I only became jaundiced about 10 days after the symptoms appeared. I think I saw in your thread that your dad doesn't have a stent, so this may be a cause. Would DG's friends please pass on the message, if DG can't see posts here? This may be of no help at all but just something to consider.

P.S. I sent a request to join DG's Facebook page, so will be contactable there, if accepted.

x Stepuha

[Proud Wife]

I do believe DG can read posts on here, it's just her ability to post anything thats been affected. But I will check that for you Stephua x

[Guest]

Hi DG, PW,

Any news on how Dad is? Have his symptoms been brought under control at all?

M xxx

[Veema]

Hope he's perking up a bit.

Vx

[Elaine123]

DG just to let you know I am thinking of your Dad and hoping he is feeling a bit better. I am so sorry that everyone is unable to support you at this time but I know you will be moving heaven and earth to get him stable again. Take care and DO NOT give up hope

Elaine

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[Proud Wife]

just asked DG for an update and will post as soon as I hear x

[Proud Wife]

Here's the latest.......

Well. We don't know yet really. He woke up a bit better today but I looked at all the side effects of ciprofloxacin (antibiotic given by Prof) and it can cause loads of the issues that resembled dads.. especially the sensory, neurological, reduced urination ones that convinced me it was in the brain and his kidneys were failing. I have never seen him as bad as he was. He had been on the antibiotics since nano and so I e-mailed the prof and said I can't work out whether it is cancer or tablets and he said take him off of them (this was a week early). There are whole support groups around the side effect of this drug. Lorazepam has also made him wobbly and awful in the past in terms of co-ordination etc. So, starting both day after nano has just seemed to add to his symptoms this time rather than take anything away (which could still mean cancer). So, we are waiting for all these drugs to leave his system again. I think we just ended up with anticipatory nausea when he went to London, threw lorazapam at it. Then he got the antibiotics. More side effects. So then try steroids etc to steady him (screws his blood sugar). Anti sickness, pain killers for head ache etc etc etc. I am hoping it is not the cancer now. I am hoping we just started to treat side effects upon side effects and we just poisoned him instead! (never thought I would potentially be glad over something like that!) Time will tell though. It could be wishful thinking because we all do a bit of that as well around these things don't we now. Yesterday was really really bad. He told us all no more nano and no more chemo. So, if this is an upward blip and it worsens again I think we are stuffed. We will know more tomorrow I think. It is horrible to have seen him so ill

[Elaine123]

PW can you pass on to DG that I am constantly thinking about both her and her Dad and I am really sorry he is having such a rotten time , praying it is the medication.

Elaine

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[sandraW]

Hi DG firstly I did post on Monday, but I can't find my post so don't know where it went.

Just to let you know I am thinking of you and your dad. hopefully it's just the medication that is making him feel so rotten. That's the problem all the meds have side effects and we are all very individual in the way they effect us.

Hopefully he is starting to feel a little better now and will continue to improve, and when he does, he will reconsider treatment, take care of yourself too love sandrax xx

[Justamo]

DG, just heard that your Dad has gone to A&E.

If you get a moment please let PW know how things are.

Much love, Mo

[Proud Wife]

I will post as soon as I hear anything. Let's just hope and pray it's only a blip.

[WifeampMum]

Wishing your Dad well DG and thinking of you,

Love W&M xx

[Elaine123]

Just signed in to see if there was any word fromDG ......thinking of them and hope today is a better day for them

Elaine

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[stepuha]

DG, I can't stop thinking about you and your dad. I hope the A&E have got to the bottom of it and he is feeling better.

Please let us know what the situation is.

x Stepuha

[Proud Wife]

Latest update - came in an hour or so ago.......

Thank you so much for your support last night (people do not realise how comforting it is to have people reach out until they need it) and I thought it would be easier to message you both right now and tell you what is happening, I am too tired to individual message and that is what makes the forum great at these times. So, I am afraid you two are in for my forum blog I would have posted right now! It is good therapy. Ineed to tell you it all.

I am still not sure what is happening. Dad CT scan on his head came back clear and bloods came back clear and they cannot see an infection. I think they are gearing up for an MRI scan on the head as well but I am not sure what that will show otherwise against a CT. I am trying so hard to stay off Dr Google because dad has every illness on the planet right now and from my research he should have been dead before he was diagnosed. It is just mad. I forgot my poor mum in all of this. I knew things were bad but yesterday morning he was saying he is doing this and doing that (not massive but relative improvement) like... I think I need to get up and it is dehydration and I just need to pull myself together. So he was really up for the fight and I thought things were okay. He seemed okay. I think he is being a dad and doesn’t want to hurt us. But then I call mum about lunchtime and it has all gone wrong… he is back in bed, headache, nausea, sickness, can’t get up, won’t eat… big one won’t drink. He tells my mum if I am like this tomorrow then I need to go to the hospital. His common saying is… see how I feel tomorrow. This is his standard; he should have gone to hospital a week ago.

So, I cancel my plans and take dinner to my mum and I wish I had never moved because I used to be round there all the time. I turn up yesterday and he is a mess in bed. Mum was a mess downstairs and so I did not mention cancer (he does not want to hear that.. he is not ready)… just said dad you need to go to hospital and he said why? I said I think either your kidneys may be failing or you need a stent for that tumour on your liver. You are laying there feeling like poo poo when there can be easy solutions to help you. With that he promptly agreed (it was too easy… he obviously needed an excuse, not cancer, to go). The hospital were lovely.. so so massively lovely and the relief in mum was huge. They do not know what is going on either. The oncologist last week and the cancer clinic manager said they were amazed by the trial results (and the trial said this as well and the prof). All the old cancer is gone and dad is doing very very well. I know the CA19 markers are on the rise. There is something going on somewhere. They are keeping him again tonight. I really had to have a bit of a go to make him realise that as much as he feels poo poo my mum is sat downstairs not knowing what to do and feeling very sad and lonely. That seems to have shifted him a bit to talking and engaging with the dr’s a bit more. I said to my sister this morning we seem to have lost a bit how poo poo this is for her as well. I felt awful doing it but he needed to hear it… to make him act for her but also, mainly for himself. Being that generation he gets helping her more than himself so it is a win win (is anything a win around this!).

He has been moved to another ward and visiting times are 12. They have waivered the 2 by bed so it is still v hard. I will update you later. He seems to be perking up with support.

My ban from the forum has sort of made this more difficult. I am surprised how many people follow us and are not in contact. For some people there is no PCUK nurses contact and no postings on forum but I have been overwhelmed (well 15ish people) who never have made contact with us on a personal basis, or the PCUK nurses, who have contacted via FB etc when I was knocked off there.

I cannot answer them all right now. I had to write this in word and cut and paste! Hahahaha… I am such a wordsmith. Update, cut and paste, do nothing as you see fit. xxx

So, basically I have just written all that above and I have as much idea as you as to what is happening.

Never underestimate how much I appreciate yours and others support. I love you all and I have never even met you! x

Edited January 22, 2017 by Proud Wife

[Proud Wife]

I HAVE JUST EMAILED PCUK TO SEE IF THE BAN CAN BE LIFTED FOR DG WHO CLEARLY NEEDS AS MUCH SUPPORT AS POSSIBLE. FINGERS CROSSED XX

[Ruthus]

Dear DG. Sorry for responding so late but just want to say you are in my thoughts and I hope answers can be found quickly for your dads current situation. It's absolutely terrible for you all. Lots of love Ruth X

[Sandiemac]

At least he is in the hospital and they can take the strain off you and your mum for a little while to give you chance to regroup and consider your next step, which, knowing you will be to

tear in guns blazing! Thinking of you and wishing you all good news.

[Proud Wife]

Really really thrilled to report back that her Dad seems to have turned a corner. DG says he's currently the best he's been in months. They have not been able to identify what caused this blip but to be honest, I think as long as he's on his way back up...

Who said this was a rollercoaster experience?!! DG, get some much needed sleep tonight xx

[Elaine123]

DG I was delighted to read PW's update and your Dad is on the up again.....get some good sleep tonight to ready you for whatever tomorrow brings ....there doesn't ever seem to be a day you can relax. Take care

Elaine

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