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


Dandygal76
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  • 3 weeks later...

Hey Marmalade. I have been thinking for a while what I need to write on here because I am not sure I can go on with the thread in the way I would have liked for various reasons and i will update all perhaps towards the weekend but work has been so crazy. We had a scare yesterday as eye test came back with indications of what could have been swelling of the brain and we had to wait on brain scan all day to check the cancer had not spread. I ended up sending feeling sorry for myself texts with PW from the hospital not realising it was hubby's cruise ceremony day! PW was as lovely as ever though. It was a painful wait but all clear thank god! I think the high blood sugars we now have under control may have caused some damage. Scan is in 2 weeks as well. But, we are still here and still fighting every step of the way. I wish I could be on here to write to everyone more but I think things will settle down at work over the next week or two. Thanks for checking up on me though - I am not causing too much medical mayhem at the moment as we seem to be ticking over. x

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Hi DG,


Good to know you are ticking along my lovely.


The scary eye thing must have been a nightmare and reminds me that we are always on edge and looking for trouble! Glad it was sorted and don't worry a jot about feeling sorrow for yourself, it's allowed even for a toughie like you PW is a real star and I'm glad she was there for you.


I realise that the thread doesn't always work for you and of course you are a very busy woman! It's easy to forget that other people have children and a job and stuff going on when one spends so much time naval gazing! You do incredibly well with spinning the plates so don't worry about us, just wanted you to know you were in my thoughts xx

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Oh but I do worry about you all Marmalade. It is for different reasons other than being busy that I am not so keen on my thread. I will update when I get the time, nothing drastic and I am still here. Off out now though to take my little one to stop at my mums, he is still going to school where I used to live and I have early morning appointment so he is stopping with Nanny and Grandad. He is swapping schools on Monday so that will be a relief! Hopefully I can log onto the laptop when I get back and respond to you all. xx

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Reading between the lines DG, you sound exhausted? The house move and your dad and your research and your work must all have taken it's toll. Please take care of yourself. I'm a little worried it's all (understandably) getting too much for you.


As for hubby....I'm heading on over there now to update. xxx

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Dear DG, I certainly don't think you are awful and I know you have absolutely the best intentions - to improve things for people with PC and their loved ones - but I feel that you are fighting the wrong battle by picking on PCUK. They are piggy-in-the middle between us and the NHS, and have to tread very carefully and diplomatically on that path. They know what they are doing and I believe strongly that they should be left to get on with their excellent work.


And I'm sorry but I don't think it's right to publish here emails by NHS staff without their knowledge and permission.


But DG, I still think you are doing a magnificent job as an advocate for your Dad and that you've got a heart of gold. I wish you both only the very best.


Much love

W&M xx

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Oh dear W&M my friend decided to take me out to chirp me up a bit and the wine got the better of me! I do want to post what I want to say but I have cut an pasted my post into word for now to revisit it all. But W&M i do have to disagree regarding the publishing the e-mails. It is not their e-mails and it is enshrined under the DPA that they belong to my dad. They should never be writing anything they do not want public and they are in the wrong role if they do not know that. All of their details were also removed from the messages. The DPA gives them the knowledge and the permission that you seek for them. Much love to you as well. Yesterday was a very bad day for me but today is another day. x

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Okay, I would like to clarify some wording above that I am not picking on PCUK. I made it very clear I have the highest regard for them and acknowledged my dad would be doomed by now if it was not for them. I think the 'picking' suggests I was being defamatory or bullying (PC Nurses I still have the whole post and will e-mail it to you if you are concerned at all) when I believe I was having an ethical debate over the censorship of the forum. The e-mails that I published as far as I am concerned was in the public interest, you all read them and commented upon them - this was not some sly e-mails you have all missed that was outrageous. This was the e-mails about getting my dad’s biopsy to Harley Street that took nearly 2 months! I then went back in and completely censored them after PCUK e-mailed me. No one was identifiable. The publishing was in the public interest, the NHS is accountable and so are the individuals who work within them. I showed anyone out there the way to address these issues in a professional manner and how to achieve the desired outcomes without being rude. I was showing people, many of whom may not know, their absolute rights. I felt that the rationale of removing them was a personal and biased reason and not a holistic ethos in the name of the cause.

I also stated I disagreed that we should not be allowed to point people in the right direction for help where we have found help effective. Dealing with PC is a postcode lottery and people by law have choices, however.. how can they invoke the choices if the debates over effective medical professionals cannot be had on here. Why censor what is actually public knowledge if you know where to look. I am not saying we should all be on here being defamatory to anyone but we should be able to say look we know you think you are getting a crap deal on the NHS so why not try a second opinion here where people have been really helped and are not written off when the word Pancreatic Cancer is mentioned. My Dad’s NHS oncologist is one of these. I have had to fight him for all of dad’s next outcomes. He is also one that will not do chemo around nanoknife (which I have arranged to have done privately).

My point in all this is your cannot champion change effectively if your protect those that are absolutely accountable. There should be nothing that anyone on the NHS writes in an e-mail that is the personal data of another individual that they would be concerned regarding publishing. Absolutely nothing. Every single time I investigate some cock up in the public sector you are guaranteed as well that the press will FOI the whole investigation – including all my e-mails. People fought for years to make this public data accessible, publishable and those who write it accountable. It is enshrined in the public sector to make individuals absolutely accountable. This is to protect us, not them. So for a decision to be made because a medical professional would not like it if it happened to them is fundamentally against our rights that have been enshrined in law.

I know many will disagree with my views but the facts are crystal clear as to mine and my fathers’ rights for access to his personal information and for our rights to publish it – and publish it with names which I did agree as a compromise to take out, even the organisational name.


And so yes, I am requesting that PCUK look to their censorship of the forum and how it is managed.

Otherwise, knowing me I will have to formally write to those in the e-mail and request their permission to publish whilst pointing out they cannot refuse it.


The rights and freedoms of individuals is massively important to me and a cause I have always championed.


I also don't know if dad's scan coming up is making me a bits nuts. The way he is acting is making me think we have a problem he is not telling us about. I am not always good at venting my frustrations in the right direction when I feel a bit limited in my control of things. xxx

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I do not feel like I cope at all before these scans. My lovely boy is starting a new school tomorrow and I have been crap and not bought him the new jumper he needs and I feel awful for that. You all stay so rational and lovely and I feel weak and useless. My dad has pain again but this is his reaction and happened previously to the last scan as well. I wear my emotions on my sleeve and shoot from the hip and I still have another 10 days to go. Oh my lord all of you be grateful none of you live with me, I don't know how my other half manages me with such patience. I am a nightmare and cannot stop myself. I have sent out over 20 letters today alone... I think I may need a counselor to help me rationalise because it is not normal. x

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My lovely DG


your turmoil and anguish are so clear. You are far too hard on yourself. You are the most amazing daughter and I'm sure an exceptionally good mother who just has far too much on her plate. I will reply more tomorrow as I'm on my mobile and it's hard to type on such a small screen. I did t want to leave it until then just to reach out to you and say you are normal, do t change who you are and most importantly just to send you a massive (((hug))). I can't review this message so I hope its legible! And makes sense?

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I can be like a woman possessed when I believe in something so I totally get where you are coming from. Those scan results can be like a guilatine waiting to fall. The neArer you get, the worse you will probably be. all I can say is, you can't change the outcome and worrying about it now so much will only make you ill. And you dad perhaps some phantom pains. No-one knows,. You can always chat with me over on messenger day or night if you want to let off some steam, remember that. Lots of love my friend xxx

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I see myself as rational and balanced and one who takes a fairly pragmatic view on many issues but I remember turning into a raging fury after my son was stillborn. It wasn't hormones - this was two years after the event. My cause, not the loss itself, but the very poor treatment offered to women after their tragedies made me incandescent with rage and righteousness. I quite literally changed info a different person.


As improvements were made nationally (thanks to people like me) my anger diminished but I still remember the feeling of being on the very edge of control and so single minded about my cause that nothing could deflect me from my goal.


You say you are a " . . nightmare and cannot stop yourself. It is not normal ..." Stress can often bring out the best in us but we can also get fixated on details and lose sight of the main event.


I think that one quality that comes across so clearly in your posts is perseverance. Your exemplary record keeping, professional level of administration, and drive are clear and nobody could have dealt with this as well as you. But I think you need to rebalance and listen to your own body. Can you find the strength to stand back for a day or to to rebalance and reboot ?


This post is not to imply that you are unbalanced. It is meant to tell you that you sound overwrought and need some space to regroup. Your boy can manage without a new jumper for one day but you need to stay strong for your own sake and for your family too.


Stick the brakes on, coast for a few days and find some inner serenity. You will be all the stronger for it.


If I lived a bit nearer to you I would do the whole mother routine. So here's some virtual chicken soup. We need you all in one piece DG.


Love, prayers and purrs from You Know Who.

M

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Couldn't agree more with Mo. As you are going at the moment DG you stand to waste good and priceless family time fretting about the future. M xx

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I'm very much like you DG...I feel any injustice very deeply and desperately need to make it right, to the point where I sometimes feel vengeful. I'm currently number 9 in the queue to the council tax ready to give them a roasting over the bill they have sent me which doesn't take into consideration the 25% discount despite me telling them Nige had died and I was now the only adult in the house! I feel so cross about it! Bloody idiots.


Scans always made me really anxious. When Phoebe was poorly as a baby with her heart condition I was a member of a forum then and they described the pre appointment feelings as Auntie PAT...pre appointment tension...it's the same with scans and scan results.


Keep your chin up lovely...you're doing a fantastic job for your Dad...but you need to look after yourself too.


I'm now number 6 in the queue...


Vx

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Thanks all for your kind words. I have booked the day off work and this message will be my only PC work today (I hear the lovely nurses all sigh with relief!)


I do totally get the quality time and the quantity v quality arguments for survival but I am driven purely by dads stated wish to see my son to university. That is now just under 2 years. Our household is complex (as are many I am sure) and my eldest will drop out of school and cause chaos if anything happens to dad now - I will not be able to keep him on the straight and narrow. I sent him to school 30 miles away because he is a bit highly strung (yes - I am seeing the pattern there!). My dad knows this and wants to see him off to his independence. I know this sound terrible but my dad getting this vile disease actually helped him. In January he was up all night and being a menace and refusing to go to school. Failed all his mocks. Then dad gets ill and he doesn't want to let him down so we get him a tutor and we help fight back and he got A*'s A's, B's and a couple of C's.


So in terms of the quality v quantity I am afraid my dad at this point in time feels he will opt for quantity and he will 'b**l*cks' on for as long as he can (his actual words he says to me to give you his strength of feeling on this) regardless of how he feels. That may change later and I will help him with whatever choice he makes around this.


So, the question is why I am rambling on about all this and going mad at the NHS delays or when they are defeatest and this is why...


http://www.cancercenter.com/pancreatic-cancer/statistics/


- please click the left tab for survival statistics and results. This is for metastatic disease and again does not incorporate Folfirinox etc. So then if you scroll down and see the 2 year results comparing this institution with that of those other organisations with their mixed bag of excellent treatment to complete apathy you will see that by pushing the NHS and making them accountable to my dad and for his treatment may well mean the difference between seeing his grandson off to university or not. So I do get very frustrated when I do not hear the answers I want to hear when it comes to a hollistic approach in dad's treatment and generally people just not pulling their fingers out of the backsides.


10% is still a long shot, and chances are certainly not stacked in his favour, but he will get the best opportunities I can muster within the NHS and what we can afford privately to be within that figure.


So I am afraid (as you all know with complexities of your unique experiences), it is raw to deal with but I do believe I can make a difference.


And so yes all of you - you are so right that getting this wound up probably starts getting counterproductive and I need to do that breathing thing again because we may not even be in the imminent danger I fear. It is my dads birthday on 28th so I am going to start arranging something nice for that and hopefully we will have more tumour shrinkage and champagne.


I do appreciate all of your advice and Veena - I hope you are at the front of the queue now. Shame you are not in this LA boundaries otherwise I would have been able to help you.


xxx


L

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The really good thing about this forum is that we are so diverse and yet we all belong on Planet PC.


You have got several very differing views on this DG, and all of them are right. I'm right up there with you on the anger thing but rather than come out with all guns blazing I shrink away and lick my wounds and make some ammunition very quietly in a corner.


It took me two years to deal with the system who employed a nurse who, when I asked to see my dead baby, said, "Oh, you don't want to see that, dear, it's only a macerated foetus". These days bereaved parents can spend time cuddling their baby and even take photographs. And it was women like me in the early 70s who changed it all. You will make changes too DG, and sometimes change is hard to deal with.


I'm glad you've booked a day off work, when you have to juggle so many balls you can't possibly give 100% to each of them because not even Superwoman could do that. Clearly, you can prioritise and are a resourceful person so take 5 (or 10) and be good to yourself.


Every single one of us is concerned for you right now.

with love

Mo

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Mo, that is terrible you had to go through that... as much as things seem hard to fight now at least we are more empowered... even if I am frustrated sometimes there is accountability and that precious gift of information that is plentiful compared to those times. And, that is because people like you stood up for what you believed. I was born in the 70's and my mum did not want to breast feed and she said the midwife literally threw the bottle at her head and and would not speak to her in disgust.


I am sorry you lost your baby, my friend recently had it happen to her and she knew she was giving birth to her dead child. I would not wish it on my worst enemy so thank you because she was treated with absolute respect and dignity through that terrible time. She was given lovely hand and foot prints and a lock of hair to go with their photos.


xxx

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Your story has sent shivers down my spine Mo. I can't think of much worse.


How are you DG? Without wanting to remind you of the obvious, when it scan-day and when will you get the results. I feel on edge for you all, having read your heartfelt explanation regarding your son and your dad. Boy oh boy do you have a lot on your plate. Wish I could help xx

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PW, my melt down has passed.


I think between me going nuts and my FB friend suffering with his mother and feeling so down it just pulled me into a free for all but I have stepped away from the computer and calmed myself. The melt down was not helped by the fact that dad's chemo messed up last week and an agency nurse managed to get the trial drug in him but he probably got a quarter of each chemo routine because she messed them both up. Then with my friend having to fight the hospital where his mum is at it was frustrating.


So, we are now less than a week away from the scan and I am concentrating on enjoying dads week off. Also, after much fighting with the doctors my friend managed to get the hospital to take cultures and apply broad spectrum antibiotics (this is from them insisting they would not even take a blood test). They then found something in the cultures. She went back on solid food yesterday. Now they are changing the broad spectrum antibiotics to a specific treatment and microbiologist found 3 different cultures and they are going out of their way to help now and today she is looking the best for ages. So no temperature, no high WBC count but yes there was an infection causing the problem.


We just want to be allowed to have some empowerment and acknowledgement that what we say is not necessarily right but deserves due consideration. We know our loved ones and we also know a bit about PC and to be honest, one FB forum really came through in assisting in the diagnoses of this. I am not saying we are always right but being stone walled without consideration of our research and views is just a bit off.


I absolutely understand the alternative views and the brave choices people make on this journey but this is another person that has chosen to fight with aggressive treatment, just like my dad, and it should not be so hard to to get medical staff to consider the alternatives when it is something like a culture grown in a lab and is not an invasive or theatrical request. Whatever anyone's choice, it should be supported as far as is realistic.


Me and this person have very similar outlooks, similar views and a similar parent with the same goal and we have been communicating from the start really.


But this thread is not their journey, it is ours, I just wanted to put some closure on that painful episode.


I am going to try and leave this thread for a bit until after dads scan results on Wednesday. I won't have news until then and so will give everyone a break for a bit.


xxx

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DG

Don't forget to let us know will you, we will all be hoping for the very best news for your Dad so take a deep breath and as you say enjoy your Dad's week off. I do honestly think the waiting for results is worse than the actual results themselves even if the results are not quite what we were hoping for.

I hope your friends Mum continues to improve too. take care sandrax xx

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