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Re: Carrying On
Posted: Mon Oct 03, 2016 10:55 pm
Hey Marmalade, you've got kind words and support for everybody. How are YOU feeling ? Still raw ?
Thinking of you.
Re: Carrying On
Posted: Tue Oct 04, 2016 9:06 am
Bless you Marmalade your support to everyone on this forum is amazing. Just want you to know I'm thinking of you.
Re: Carrying On
Posted: Tue Oct 04, 2016 5:32 pm
Hello lovely people,
How very kind of you to think of me. The holding pattern continues…
I enjoyed the visit from our Italian friend, we talked about his business ambitions and people we both know from international corporate world so it provided an interesting diversion, he even offered me a job, well some lucrative consultancy. It was very sweet but as I am still struggling with concentration and sleep and leaving the front door wide open while I go out for the day I don't think I would provide very much value for them!
While writing this I have just taken a call from the hospital who took so long to confirm Louis diagnosis, mis ordered tests, one of which was an extremely dangerous procedure that the intervention radiologist quite rightly raised alarms at, and needlessly refused him sedation for others and, on occasions were downright rude. Our final appointment at the hospital was the only one we had with the oncology department. We were the only people in the waiting area both before and after our meeting. The consultant got angry with us at the meeting because Louis remarked at how late he was for the appointment (over 45 minutes). Mr Oncologist told him that he had to deal with people who were sicker than he (Louis) was. Considering that he went on to tell him he would be dead in three to six months and that he felt palliative chemo was a waste of time we thought that was a bit rich. The whole interview took less than 10 minutes.
I am not making an official complaint (big supporter of the principles of the NHS) but I am persisting in making them acknowledge and address the things that went wrong. "Sophie" just called to say that the MDT consultants (or at least some of them) think it would be a good idea to have a meeting so they could explain things to me. I told her that I am perfectly capable of understanding their systems and protocols, my issues were that a) they were not followed correctly and b) they fell short of addressing the needs, wellbeing and concerns of the patient. I have therefore responded that I would be happy to meet once we had agreed the attendees and an agenda. I'm sure they think I am taking my grief out on them and am probably a bit unhinged but I am not going to let go until I see concrete actions being taken to ensure protocols (including communications) are followed and that they are fit for the needs of the patients not just the MDT. I am not a vindictive person but I have the time, the experience of working in big process driven organisations and the motivation to stop others having the same experiences.
So, today I must ring a share dealing company who have sent me 16 pages of absolute twaddle to find out what on earth it means, then I need to do some food shopping, sew some labels on teddy bears, and finish clearing the office so a nice man can replace the carpet with one that has been rolled up in our garage for 14 years! Fortunately its a good carpet and hasn't suffered too much. The one we have has worn out under the wheels of the office chair. I now have a static chair so hopefully that won't happen again. It does however mean I have to redecorate because its a bit tatty and I have to sift all the filing down to something manageable. Louis kept everything back to when God was a lad. Everything I touch seems to domino into 10 jobs at the moment and it feels like wading in treacle at times. I feel very sorry for those who don't have a financial or legal background, they must be driven to distraction and robbed blind by the professionals. I have to say the DWP have been the most efficient and easiest people to deal with. I got my bereavement grant and what used to be the widows pension through very quickly, both of these are not means tested and everyone should apply.
I seem to have wittered on an on and been very dull. My friend is still trying to sort the holiday (strangely, deals on the internet are often spurious, even from famous names) and I am losing heart now. She is working so doesn't have time in the day and she won't let me do it as she wants to do something for me, what do you do? Stop press, we have found somewhere!
Must go now as have done nothing on the list or told you how I am feeling but I think you will get the idea from this diatribe. I will try to be a better person tomorrow
Suzie is giving an important presentation to an international conference tomorrow and is very nervous so have just popped out to send her a card, I always think its nice to receive hand written communications by post instead of bills.
I love you all (genuinely, I think of you as close friends) and am so grateful for the psychotherapy opportunity that the forum provides hahaha
Hope the day has been good for you and those you love.
Re: Carrying On
Posted: Tue Oct 04, 2016 8:35 pm
I am glad you're taking the hospital to task over their inadequate treatment of Louis. These people trot about their daily duties and have meetings and write each other e-mails and hold their workshops (how I HATE that word) and they never seem to have to face the consequences of their actions. Or lack of actions.
An official complaint would simply cost a great deal of money which would be better spent on patients, and cause you a lot more grief. However, a little plain speaking, properly recorded by both parties might shine a little light on their current shortcomings and their future policies. I hope you have a positive outcome. Positive for the people that matter, that is.
You are an intelligent and articulate woman. If DandyGirl can take on the NHS and win then surely you can sort out a bunch of white coats and their respective departments.
Go for it Marmalade. And good luck to Suzie.
love and support
Re: Carrying On
Posted: Tue Oct 04, 2016 10:42 pm
Mo and Marmalade... I am here and I will have a little chat with you all tomorrow. I have to drag the 8 year old out of the house at 6:30 am so an early rise for us. I hope you all sleep okay and sending lots of hugs to you all. xxx
Re: Carrying On
Posted: Fri Oct 07, 2016 11:00 am
Thank you for your continued support to so many on the forum. And also for your updates on "Carrying on" thread.
It is good that you have been offered a meeting Marmalade - and you will certainly do a great job in feeding back some of the issues Louis and yourself encountered. It is vital that things are fed back in this way, as they can be incorporated in training & development, hopefully ensuring these don't happen again. They may also be useful for individual 1-to 1's, in terms of identifying training needs - for example, suggesting a refresher in advanced communications for some individuals.
For any feedback, its the outcomes which are also important, for example, were there any actions following your meeting, who has documented these, and what are the timescales when they want to see actions implemented by? Who will reassess progress, and what are the changes to practice which come from these actions?
There have been cases, even on this forum, where very practical measures have been put into place to prevent "x" or "y" from happening again.
Your feedback will be invaluable Marmalade - thank you for doing this so that others can have a better experience.
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK
support line: 0808 801 0707
Re: Carrying On
Posted: Fri Oct 07, 2016 4:56 pm
I hope you do get through to the hospital. I am continually annoyed by the NHS over how they treat Pancreatic Cancer patients even though, like you, I am a big supporter of the principles behind the NHS. On my small support group there is a person whose mother (similar age to dad) was written off by them. Her son contacted me and we chatted about it on the phone and he managed to convince her to see Professor Leen and get the nanoknife. She has responded well to treatment. And then Professor Leen said her stent needed to be changed to a plastic one and they had trouble for various reasons achieving this on the NHS until she was jaundiced and they told her family she had weeks to live because the tumour was also growing and was basically going to do sod all to help her. They went back to Professor Leen who said no it is not the case, it is swelling and scar tissue and she just needs the stent changed. Well I can tell you this... I know for a fact once you have another professional telling them they are talking rubbish they have to act or leave themselves liable. What then happens, jaundice is gone and mum bounces back. She would be dead now if it was left to them. I don't trust any of them around PC and it is one of the issues I am not continuing my thread at the moment because I have an ethical dilemma with the censorship from the lovely PC nurses who seem to think that protecting those in the NHS is more important than the fact that they are absolutely accountable for every action they take whilst accepting tax payers money for their role. It is enshrined in law under the FOI and DPA and they should not be subject to the protections of censorship. Every e-mail they write is not only public property but someone else's personal data. I digress and I am clogging up your thread when I need to write this on my own. But, you have to ensure you get outcomes as Jeni says. We have to champion this cause so that the next person does not have to suffer incompetence and belligerence. At an average age of 72 at diagnoses there are people out there without family and fighting this dreadful disease on their own. What the hell happens to them? If they were the poor woman I described above they would be dead.
And, don't let them treat you like an idiot either. I go suited, booted and prepared to everyone of dads meetings and on the last one I was actually asked if I was a medical professional. It should not be so but I see a marked difference in their attitudes if I turn up as a professional.
I have spent my career championing the causes of the little guy. I know being an auditor sounds boring but I am a Audit Manager (Investigations). I deal with whistleblowers and public sector cock ups that make the press regularly. I sit in tribunals and courts and I fight belligerence and people that think they are owed a living every working day. I have done this is the NHS as well and I know the system and I am now actively coaching anyone I know on how to tackle them head on when it comes to PC.
I will jump off my soap box now.. I think you can tell I am a little annoyed at present over various matters.
On to you... I do hope you are well and that you know you are always in my thoughts. I am going to stop by one day and buy one of your lovely teddy bears. If anything ever happens to dad I may just commission you to do some magic with his clothes to make bears for the kids. Your bears do look so wonderful.
Did you get your carpet down... you do seem very busy with all your clearing out and organising. Louis does sound as though he was bit of hoarder. It is strange that when I read these threads I imagine your houses and I bet the reality is very different to my mind.
I will tell my work colleagues that you found the DWP efficient. They took the Housing benefit fraud work from my team as part of a government initiative to centralise fraud. As part of this they have been brilliant and Milton Keynes seems to have had a drastic reduction in fraud so I have FOI'd them. It is not a reduction in fraud, they are just not investigating anything and so report zero fraud. I am glad you had a good experience because they can also be a cumbersome beast.
Have you looked at Turkey for a holiday. Fantastic deals at the moment and as long as you are not near the border it is very safe still, despite the scare mongering. In peek times next year I can take 4 adults and 1 child away to a top all inclusive resort for around £3k for 2 weeks.
I hope Suzie's presentation went well. I have to do one for a job interview soon and I hate them.
Sorry for all my ranting, I have just poured myself an early glass of wine and will come back later hopefully a bit merrier!
Love you loads my dear friend.
Re: Carrying On
Posted: Fri Oct 07, 2016 5:08 pm
Ah darling DG, you are welcome here anytime. I have to go out now but will respond tomorrow or later. Keep it up DG, if these things are not debated nothing will change. I don't believe that treatment is always desirable but I defend the right of those intimately involved to debate it and to have the very best information, funding and treatment available if they want it. The ignorance at district hospital level is dire. M xx
Re: Carrying On
Posted: Sat Oct 08, 2016 1:18 pm
Oh Marmalade.. my lovely PC friend has just phoned me and I got so much wrong in my message. The NHS are still treating his poor mum like she is written off though the family is sure she is not on the end game yet. We all want our love ones to go out with dignity... when their time is up but not when there is still some fight. Horrible hospital. They have withdrawn her fluids as well. Even with Prof Nano saying get her there and he will sort her out because she is not at the end of this journey. Unfortunately
though hospital demands sufficient resources. I have just given them the most unprofessional non medical advice I could ever give. If she is not attached to something then bung her in the back of the car and take her to the Hospital in London where they actually know what they are talking about and more importantly... care and are ahead of the game on PC. This poor woman has other issues that can be sorted... but it is all down to PC when it comes to the medical profession. I am so cross over so much at the moment re NHS. Half of the PC stats are down to belligerence. Anyone reading this... don't suffer it if your loved one is not where they think they are and they still want treatment. Move them to somewhere that have a different outlook... you have rights... more than they think you do!
Re: Carrying On
Posted: Sat Oct 08, 2016 1:21 pm
I will take on the whole lot of them. Everything in writing and second opinions all the way. I am upset and will stop now. x
Re: Carrying On
Posted: Sat Oct 08, 2016 2:45 pm
Oh DG, I wish I could put my arms around you and give you a massive hug. We chose private medical insurance years back because as working professionals at the time, we couldn't afford to be off ill and if we needed treatment, we wanted it there and then.
After hubby's treatment (first misdiagnosis and unnecessary procedures carried out for financial gain) and various things that have happened to me, I often wonder if we'd be better off both in terms of treatment and finances to be under the care of the NHS because if you're told you need a procedure, you can be sure you need it and it's not just to line a greedy doctor's pocket.
Marmalade, I too am sorry to take over your carrying on blog but I love DG and just want to try and say the grass is not always greener on the other side.
The issues you talk about I think are in general to do with ignorance of PC or the unwillingness of the clinicians to treat their patients as anything other than dead men walking. I can hand on heart say my hubby was given the most basic of care from his oncologist. No MDT. All he really had was a great palliative care consultant (who I loved and could not fault) who kept him pain free until very near the end. Unfortunately for me, hubby was too strong willed to listen to me. If I'd had my way, I'd have been looking for alternatives and maybe the ending would have been different but I was not the patient and it was his decision to stick with the same oncologist. This was private healthcare at it's best so personally, I don't think you can blame the NHS per se.....it's just the very poor outcomes of PC I believe which seem to encourage tardy and careless treatment. Because of the nature of the beast, I would love to see just one or two specialist centres in the UK staffed with the very best healthcare professionals who would have both the knowledge and the willingness to give the best possible treatment to PC sufferers but of course that's totally unrealistic.
The point I just try to get across my lovely DG is, private health insurance speeds matters up but at the end of the day, these oncologists also work for the NHS so generally speaking, it's not always the NHS to blame but moreover, an attitude on "you are on your way out" rather than I want to make a real difference sadly enough.
Whatever you do DG, please don't stop your Dad's thread.
Apologies again Marmalade. I too am curious to hear your holiday plans.....
Lots of love to you all xxxx
Re: Carrying On
Posted: Sat Oct 08, 2016 6:22 pm
My darling DG,
How heartfelt your post is, there is no doubt about your depth of feeling for this family, for us and for yourself. Real passion and single-mindedness are hugely powerful assets in driving change and I agree with you completely that change is vital.
I will not insult your intelligence by pretending that I don't have issues with "treatment at all costs" and the motives involved. My concerns are nothing new and I know you respect them as I respect your immense knowledge and understanding of available treatments, and your support for all who have a chance and want to have the very best treatments.
You feel understandably close to those who contact you because their pain, fear and frustration mirrors yours and I can see this in your post. There is not a soul on here who doesn't understand your need to help, support and care for all those who suffer this awful disease but I doubt I am alone in thinking that exhausting yourself and taking on the pain of others is unlikely to result in anyone feeling better. I weep and rail with you at injustice, because that's what it amounts to when the system fails us. There are so many injustices in the world that sometimes it can overwhelm us. I fear it may be overwhelming you at the moment but I want to post here for people to read because it is important that others who are on their journey or who will follow never feel they are alone with these thoughts and experiences. You bring light and hope and reassurance to every one of us and we love you for it. We want to give you all the support we can muster and hold you up when you need reassurance as we all do or will do.
You have a very high regard for the professor and his skill so you naturally believe his diagnosis over others, I would be the same, and I would not want to feel even a tiny bit that my faith had been misplaced. However, his skill is limited to his specialism and it may be that there are more things going on with this lady than the stent issue.
Pancreatic cancer patients and their families continue to suffer at the hands of ignorant and ill-trained clinicians, from starvation of resources, from excessively cumbersome and slow diagnostics and from a lazy and blinkered approaches to treatments. I like you will do all that I can to highlight the issues and get those in power to recognise the failings, raise awareness and support those who are dealing with the system as it is now on their journey.
Darling DG, get some good quality rest and family time, re-charge your batteries and come back to the research and campaigning with renewed vigour and purpose. You are a very important part of the forum community and a highly valued friend and that is why I say what I do.
Much love M xx
Re: Carrying On
Posted: Sat Oct 08, 2016 6:50 pm
Hi all you lovely people,
I've had a strange few days, I seem to be injuring myself (lack of concentration), trapped my hand between a wall and a fitted desk top and then got stung by a hornet, both hurt like hell but are on the mend. Doing first aid on myself is another thing I have to get used to.
Nothing much has changed for me. I still cry but now mostly when I am on my own. I am very conscious of boring everyone to tears so try to avoid situations where I know I will become emotional. The overwhelming feeling of loneliness is always there wherever I am but I am getting better at hiding it. I am trying not to look at the house which is full of stuff to be sold, recycled or otherwise disposed of. I decide to do something and then lose heart and shut the door on it. Maybe after the holiday...
I still don't know what to do with Louis ashes. I think I will bring them home and contemplate the question some more. I'd like us to be together wherever it is, maybe Lyme Park. It's a favourite place for Louis and I am very fond of the wet shirt scene from Pride and Prejudice which was filmed there. Louis and I used to laugh at it because he said (just wrote "says" but of course he doesn't any longer) the lake is freezing and full of slime!
It would appear that I am going to Cyprus where my friend Sally has found a place with good flopping facilities and a spa near Limassol so that is that. We fly next Sunday for 7 days. I hate leaving the house and really only feel any comfort when I am here but it has to be done and Sally is good company, we know lots of the same people, quite a few of each others secrets and she adored Louis, middle-aged ladies always did.
Well, early bed tonight. I am going to a beautiful thatched church in Bromham tomorrow morning to 8am BCP (book of common prayer) service with a friend then have to make an apple pie and go to my daughters house. I have not seen her for two weeks and miss her terribly. Poor girl she has been working very long hours and on calls and is exhausted so I am going to make lunch for us all. Sunday evening is when I speak to my sister on the phone too and then there is Poldark, I do like an historical drama hahaha.
I send you all love and prayers, yes all of you, active and passive on here, especially Proudwife who has completed her journey thread and who was such a comfort to me. I hope she stays around and tells us about her Moving On journey. I am also thinking very much about Dandygirl who fights so long and hard for new information and treatments and for justice in the care system.
Have a lovely evening and a restful night all of you, and don't forget you are never alone
Re: Carrying On
Posted: Sat Oct 08, 2016 7:41 pm
Thank you both. I need to definitely start my own thread up and stop sulking! I am now just posting in stealth on your threads. You gals as ever ground me back into reality and I need that... you know that with my personality. But they are accountable and I understand PC and this lady has no determinable mets. I do not believe Prof would be suggesting ambulance to him if he could not help. There is absolutely a time to quit on PC determined by individual circumstance and if I thought for one minute the woman was at the end then I would have the courage to tell the family it is the time to say goodbye gracefully. However, if it was my dad and he still wanted to fight... we would be in a&e of Imperial right now.
I am distressed, this always happens with scans approaching. I feel powerless at this time and I feel like a baby and I want my life back. How pathetic is that to write. We are now in a week and a half of doom.
Marmalade, do you have a Hornet nest near you? You had a hornet prob with Louis there did you not?
PW - I thought you was not looking on here for your cruise.
You are both not alone. Bear with me for a couple of weeks and hopefully i will be buoying you all up and not clogging up other peoples threads. x
Re: Carrying On
Posted: Sat Oct 08, 2016 8:23 pm
Darling DG, You can skulk here all you like my darling. Everything you say is relevant and welcome and we can all balance your more passionate posts so nice nurses don't have to zap you.
I quite like you posting under the radar on my thread, makes me feel like I have a use which is rare these days!
If you can't talk about your hopes and fears on here where can you? Calm yourself now girl, you have all week to get yourself in a proper lather so best to start off slowly don't you think?
Hornets nest, yes, there is a nest in our armoured bird box (long story, wood peckers used to dig in and take the baby blue tits so a friend covered it in stainless steel….) In theory they should all die off anytime now and leave just the queen inside at which point you can undo the box and chuck her out, in theory….other option is an aqua vac but they are feisty creatures…
Rest easy now all, xxxx