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Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

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

Postby Wife&Mum » Thu Aug 04, 2016 12:33 pm

Hmm, I'm not so sure that a few weeks wait for the scan results will make any difference to outcomes. If a few weeks matter that much then the disease is very aggressive and there won't be much, treatment wise, that can be done anyway.

Marmalade

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

Postby Marmalade » Thu Aug 04, 2016 2:03 pm

Dear DG,

Waiting for tests and results is incredibly stressful and waiting times are a disgrace. It doesn't matter that a week or two here or there may not influence outcomes, it adds to everyones distress. I feel for you xx

M xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Thu Aug 04, 2016 3:42 pm

Thank you all.

PW we do have the finance to do a scan and that is not the issue (Mum, my sister and me would all march him down there now), the issue would be convincing my dad to go to it if someone has to pay. He is very frugal with his money (but generous in may ways with it). If you asked anyone in my family one of my dads best known quotes it would be 'look after the pennies and the pounds will look after themselves'. I still believe it is why we missed the whipple by such a small margin (the few mets are measured in few mm's) because he would not pay for a private scan at the start even though we all nagged him. Nope.. he paid his tax and he was going to use the NHS route. At the end of the day it is his decision and we cannot force him to do what we think is for the best.

W&M you are probably right but I also have my doubts as to this sometimes because this is what the doctors often say that a few weeks will not make a difference but the stories just do not seem to match and the reality we see in peoples stories seem different. When this thing decides it wants to grow it seems to act significantly more quickly than the current medical thinking it is slow growing and takes years to develop in the first place. I know you are probably right though but as Marmalade says, it doesn't help to know that. Mentally it is always torture. If his cancer is growing then we want to be in plan B yesterday, not in 3 weeks and then the 2 weeks lead in time for nano and 4 weeks lead in to chemo on NHS (if we will get the Folfirinox).

Saying all that I do not have the Folfirinox answer from the NHS consultant yet so 3 weeks will at least allow me to push for that answer rather than being left desperate and not ready for the next move.

6 months anniversary tomorrow so let's not dwell too long from our celebrations that he is still with us for ... I have bought a cake and we are running suggestions at home for icing words and it has just confirmed to me once and for all what a warped family humour we all inherited! I do not want to put any of the suggestions down on here for fear of being disrespectful to others on this journey without our warped humour or just in more desperate places. x
Last edited by Dandygal76 on Thu Aug 04, 2016 8:42 pm, edited 2 times in total.

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

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

Postby Proud Wife » Thu Aug 04, 2016 7:15 pm

Wife&Mum wrote:
> Hmm, I'm not so sure that a few weeks wait for the scan results will make
> any difference to outcomes. If a few weeks matter that much then the
> disease is very aggressive and there won't be much, treatment wise, that
> can be done anyway.


I am really sorry to disagree with you W&M but I think 3 weeks do matter and can just possibly make a difference.

I speak from personal experience and I think anyone who'd seen first hand just how quickly PC can take over can relate to what I've said on my previous post. Perhaps it's because I sit on the wrong side of the divide.

3 weeks would have made a massive difference to my hubby. Who wouldn't want to give their loved one the best possible shot, even if it was clutching at straws? I think your response is a little harsh and could be coming across a little authoritarian? You don't know that for fact and although most are fighting a battle that ultimately will be lost (and I'd like to think later rather than sooner) hope must be the last thing to hang on to. I just wonder if your post will scare the living daylights out of those who have just started out.

I never want to argue with anyone on these boards but felt I had to say something on this occasion. Perhaps it's hit a raw nerve for me.

DG, you will have to email me your suggestions if you don't want to post them here. We too had a warped sense of humour - it's the only way you can get through something like this. You've got 2 options, you either laugh or cry and I know which ones best! xxx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Thu Aug 04, 2016 8:21 pm

PW, I am sure that W&M did not intend to make you feel she has anything but the utmost respect for your experience and what is happening with my dad. We are all coming from such different angles and as we all know, every journey is different anyway and that is without the different places we are all actually at right now. Our personal experiences are unique to us and they do influence our perspectives on how this works on top of the research and what the doctors say. We have you with hubby who was fighting back whilst keeping his humour and who succumbed far too quickly when you were not expecting it, we have Louis who is fighting a different brave fight to anything we have dealt with, W&M is riding the wave of the whipple and my dad is part way through his fight with his nutty daughter. Alongside all of the other experiences on here (sorry, I cannot name you all!) that we see every day and the ones we read outside of here. All of them work in each of our minds against our research and we come to different perspectives on things. You are not wrong in your perspective because they are about your research and your experiences. Equally W&M has reached her conclusion via her own experience and research. I absolutely agree with you that hope is everything and you know I absolutely agree with you on that. However, in those last few weeks when things turn, W&M is right they do turn and there is probably little we can do about it. I have seen very few come back from the really advanced disease (if any).

I totally understand what you are saying and I agree with you regarding the hope, the need for quicker scans and the shot always for our loved ones at the solutions. We need that to try and reassure us we did everything we could. But, it is important that we also stare at the harsh stark reality smack in the face sometimes as well, even if it hurts.

There is no right and wrong in PC. There is no right and wrong to treat it, to interpret what is happening, to say what we want to say. It is whatever it is for that particular journey as we all fumble our way through and try and establish our own normal and our own decisions that we think we can cope with.

I agree, 3 weeks does matter. W&M in her different perspective and research agrees with the medical establishment that it probably doesn't. Neither opinion is right or wrong - it is an unknown.

As a little of my dark humour though I googled a few weeks back 'not dead yet card' and some actually came up. It says... 'Your not dead yet... that is so awesome'.

I so bought it!

I hope you are doing okay. I think of you all the time and would love to see an update on you when you are ready.

Loads of love. x

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

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

Postby Proud Wife » Thu Aug 04, 2016 9:00 pm

I will update tomorrow DG, promise!

Perhaps I didn't make myself as clear as I should have done. Those "3 weeks" could (and I'm not saying they would) make the difference between losing the window of opportunity and passing the point of no return.

On a more cheerier note, what a shame I never found one of those cards, I think hubby would have roared laughing. Then you and I do share the same warped sense of humour because every morning I would shout downstairs to hubby "Morning, are you still breathing?" and he would reply, "yes, I haven't popped my clogs yet".

Anyhow nutty daughter, keep cracking those shells.

Hugs and kisses
PW xx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

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

Postby Proud Wife » Thu Aug 04, 2016 9:01 pm

P.S. I cannot tell you how much I would love to shout that downstairs tomorrow morning. And have him answer back. xxx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

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

Postby Wife&Mum » Thu Aug 04, 2016 9:22 pm

Thanks DG for leaping to my defence. I'm feeling a bit battered and bruised at the moment.

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Thu Aug 04, 2016 11:08 pm

Please don't feel battered and bruised W&M. Emotions are all part of the journey and as I said, we are all at different stages of that and it influences how we react and how we feel. I value your input very much and I really do think it is all just about different perspectives of where we are at individually that can influence our reactions to things. I am sure it will not be the last time we all feel a little vulnerable here and on this journey.

PW - you certainly do have the same warped humour.. I will look out for your update.

Have a peaceful night everyone, tomorrow is another day. x

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

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

Postby Proud Wife » Fri Aug 05, 2016 11:54 am

It is indeed and the sun is shining. YAY! I'm going to plonk my oversized body on a sunlounger and allow it to stay there all day, unless of course it gives way under my weight LOL!

Heading over now to update. Lots of love and best wishes to you all xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Sat Aug 06, 2016 1:17 pm

Okay, I am not sure dad's pain is such an issue after all because a) when probing dad it is intermittent and not quite the same and b) my nemesis of all time (other than PC itself) has come back. It is like bloody groundhog day that my dad is determined to continue in cycles.

It begins with something clicking in my brain followed with a question... "Dad are you taking that bloody Metformin again?"

I don't need to tell you the answer and the timings of starting it and the subsequent problems match... just like they always have. So, I say to him we have been through this 5 or 6 times now and it never ends up with a good result. But, onward he must go because he is stubborn and also mainly because it is his choice.

His blood sugar hit mid twenties after chemo this week... it is the steroids I think (I convinced the trial from previous to put him back on them). It is also contributing to his neuropathy and I agree it cannot go on. But he will not let us get an appointment with an endocrinologist who can properly help without metformin. He wants to try and sort it himself and so on we go with the groundhog day.

I am finding it incredibly frustrating.

x

Judith16
Posts: 25
Joined: Sat Dec 19, 2015 7:09 pm

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

Postby Judith16 » Sat Aug 06, 2016 7:23 pm

My hubbys blood sugar was always high after chemo, his insulin was changed to help. He has Lantus at night and humalog after meals, that has really helped to keep it more stable. We are now not on chemo, but he is taking steroids daily to help with appetite and energy.

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Sun Aug 07, 2016 1:23 pm

Dad is going downhill... we think infection again. I feel so guilty but I fight everything with PC and write letters and more than most. But I have never been to A&E with him. History of my own memories, combined with fact infection is the biggest risk that I don't want to face and then again combine that with the fact I won't be helpful with the way I deal with things. I just can't go there and that is awful isn't it. I am frozen with fear everytime this happens. x

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

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

Postby Proud Wife » Sun Aug 07, 2016 2:21 pm

Firstly DG if you need to speak to someone outside friends and family today, I am around all day and night for you if you wish - I don't sleep anyhow! The only way I think we can do this is when we are both online together to very quickly give me your email address and then delete post 10 seconds later. Or tomorrow if you want to, you ask admin to pass on details. I don't want to push this point because you may just want to leave it at forum chat and I would respect you for that regardless.

Right, now there is absolutely NO NEED on your part to feel guilty. You don't need me to tell you that you have done your UTMOST, well over and above the call of duty so if you can't go to A & E, you don't need to go. Period.

My son came to visit hubby for all of 5 minutes during the last week when he came to drop me off clean clothes, collect washing etc - until it became apparent the end was nigh. He just cant stand hospitals, exactly the same as his father who only spent the last 30 minutes of my 26 hour labour with me in my hosp[ital room. The rest of the time he was standing outside the hospital updating family and talking to passing strangers!!

Everyone has their own fears and phobias and you will be NO use to your Dad if you go to A&E because you feel it's your duty to.

It is not awful at all so stop beating yourself up PLEASE sweetheart.

As to the infection, it's par for the course unfortunately. Once they pump him fully of antibiotics and fluids, I'm sure he will perk up again. Don't forget, the blinking chemo robs him of any type of immune system but of course, I totally understand why you frozen with fear though, it's only natural.

Please keep us posted. I will keep popping on here to see if you are on and want to exchange details.

Take care my lovely xxx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Sun Aug 07, 2016 10:34 pm

Thanks PW, dad is doing okay but I do worry about my inability to attend hospital in certain circumstances. I have a history of epilepsy and A&E is quite distressing for me. I have woken up in intensive care before and I just cannot be there. Those beep beep sounds resonate through me... they say hearing is last to go on death but it is the first thing back with seizures. And it is so sad because my dad sat in there by my side throughout it all and I am selfish not doing the same. My sister though agrees with me that I won't be helpful, not only because of the stress I would feel but also I would not tolerate any delays etc. I know his rights, my family are all trained up by me on the golden hour... and that is me drilling my own family. I would not be useful to the poor staff doing their best because their best would never be enough for me if I see dad suffering. It is a bit of a standing joke really how intense and forthright I can be but it is also acknowledged that it has got us further right now than we ever thought we would be on 5th Feb.

I am just about to fire off some more e-mails followed by special delivery letters tomorrow over the inaction of Oxford. They engaged to start with over the biopsy being transferred to Sarah Cannon Institute and now it is all too quiet. We all know we don't have time for this crap.

I would love right now to give you my e-mail etc and please do ask PCUK or I will ask them. My only reluctance is because it is my work e-mail. I don't have my own e-mail and so I cannot publish it in here. If you ever feel like joining facebook then sheena and didge etc are all there on my small group of 47 people. We don't talk much but it is really nice to see who we all are.

I hope you get some sleep tonight.. hubby would be so proud of you.

xxx