A forum for advanced pancreatic cancer issues

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

I am furious.

Postby kwaitang » Thu Nov 14, 2013 4:00 pm

My husband was diagnosed with non operable pancreatic cancer and has had 3 months of chemotherapy and trial medication.
Today he went for his 3 month scan.
While we were there we went to have a word with our case nurse about approaching the Heidelberg hospital about treatment there. He was very enthusiastic and I was dlighted about that.
He then started to go through our case notes and mentioned the size of the cancer on Keith's pancreas. He then told us the size of the 2 cancers on his liver ---WHAT !!! We did not know that he had cancer of the liver !! We had been told about the pancreas and lymph nodes but NOT the liver.
The nurse was devastated that we found out this way.
We just thanked him for his time and left the hospital.
What can you say.
Arlene.

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: I am furious.

Postby InfoForMum » Thu Nov 14, 2013 4:35 pm

OMFG. Arlene, I'm so sorry. That beggars belief! How are you both coping?

Sarah

kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

Re: I am furious.

Postby kwaitang » Thu Nov 14, 2013 7:14 pm

Oh Sarah. I really don't know. I am devastated yet again. I am so angry. I am sick of one disaster after another.
Since the end of May, as everyone on here will know, our life as we knew it ended.
We waited 3 months to start treatment. One delay after another.
Stent being fitted incorrctly.
Embolism found in Keith's lungs that took them 5 WEEKS to tell us and prescribe injections.
Recent visit to a stand in Doctor at the hospital reading our notes, who asked how long ago Keith had his heart attack and his last athsma attack - of which he never had either.
Same doctor told us to wait 10 minutes while he checked an xray but forgot about us and left us for nearly 3 hours. This following all the waits earlier in the day.
We seem to have spent weeks in waiting rooms - it ia as if - you've nothing better to do now that your life is over - there is no sense of urgency.
I am sick of fighting to get an appointment at our Doctors.
District nurse didn't bother turning up to show Keith how to inject himself.
We should be able to have confidence and be made to feel better but it is just not happening.
I am sick of fighting.
We have had some nice staff when you do eventually get seen but it's just a shame that our last memories will be the constant waiting.
I am tired.
I am sorry, I don't know what else to do but moan.
Hopefully in a day or two I may see a glimmer of hope again.
Arlene.

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: I am furious.

Postby nikkis » Thu Nov 14, 2013 8:41 pm

Arlene,
I don't know what to say, I don't know which emotion I feel the most - sadness or anger on your behalf, so God only know how you and Keith feel.

We have just promised ourselves that we will write over the weekend to complain about the misinformation we received at the beginning that lead to Paul's surgery taking place months after it should have done. Seriously think about talking to the PALS service at your hospital. Trying to make sure that the same doesn't happen to anyone else is our motivation in complaining, and in your case people shouldn't get away with this, they are meant to care.

Paul, who is the least aggressive person I know wants to hit someone for you, difficult when he can't stand without being wobbly and has no muscle left, but he would give it a go!

Arlene, you sound such a positive person, I am sure your glimmer will be back in a day or two,
Nikki

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: I am furious.

Postby J_T » Thu Nov 14, 2013 8:57 pm

Bloody hell Arlene! What the heck is going on with your hospital? As if you don't have enough to contend with! Apart from all the cock ups, sitting in waiting rooms for hours when you feel dreadful is not good either.

As Nikki says you need to contact PALS but I can imagine how sapped of energy you must feel. I have to, at some point, compose a letter to PALS/Chief Exec of our hospital but at the moment I can't muster the energy.

I feel quite disgusted with the district nurse, ours were quite wonderful so you assume its the same everywhere.

I really feel for you. Its inexcusable.

Much love to you both.

Julia x

Thriae
Posts: 29
Joined: Tue Oct 22, 2013 11:48 pm

Re: I am furious.

Postby Thriae » Thu Nov 14, 2013 9:33 pm

Your post is my pivotal moment.

I've found aspects of dad's care superb - better than I could ever have imagined. However, much of what you've said rings true.

Let me list some of the things I can recall just now:

Failure to investigate thoroughly causes of high blood pressure and indigestion (GP)
Failure to notify on call doctor of arrival by ambulance (hospital)
Failure to initiate standard protocols - stockings for DVT, saline drip, basic observations for in excess of 2 hours upon admission to ward (hospital)
Accidental conveying of diagnosis of pulmonary emboli during bedside peer discussion (hospital)
Administering of incorrect drug dosage (hospital)
Failure to discuss and/or prescribe appropriate medication such as anti emetic, laxative at the same time as prescription of opiates (GP)
Stating that sedatives given when they in fact were not (hospital)
Blood present in patient surroundings (someone else's) (hospital)
Frequent consultations without full awareness of medical facts, i.e. Unaware of DVT, PE, etc. when discussing cancer care

That's an initial summary.

We were fortunate to receive chemotherapy well within standard desired time frames but other aspects of care have been very lacking.

I'd like to begin a project collating patient experience and submit this alongside a petition or open letter to parliament but before I proceed I wonder if I could tag on this thread to get a feel for the relevance of doing so.

No political bias, not wishing to derail Arlene's thread - rather more, inspired into action by it... Your thoughts?

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: I am furious.

Postby Cathy » Thu Nov 14, 2013 9:45 pm

Hi Arlene

I'm sorry you have had such a frustrating experience.

My advice would be to bide your time and make a complaint when you feel able to. I find a diary a great help (I'm not thinking of the NHS necessarily) just to keep a check of dates and who you spoke to (its very good evidence) and when you feel the time is right, make a complaint, via PALs, your MP, local paper or whoever. Now might not feel like the right time, just when you feel ready and able and want to.

Good luck!

Cathy xx

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: I am furious.

Postby InfoForMum » Thu Nov 14, 2013 10:00 pm

Arlene - I'm going to wade in in response to Aimee's post here, but in spirit this is about you m'dear. The fact that an obviously resilient, postive woman has been so ground down by a completely avoidable breach of not just professionalism, but common decency has my blood boiling. I would love to dedicate some energy to helping create a weight of patient experience that can be categorised and packaged to drive home the true weight and cost of stress caused to people who shouldn't have to withstand it as well as the PC fight.

Aimee, I, as you might guess, would support that. I suggest you discuss with the charity as improving patient experience is one of the major strands of their call to action (see the briefing paper "Pancreatic Cancer - A cancer of unmet need" written for parliamentary consultation here on the site). http://www.pancreaticcancer.org.uk/medi ... _final.pdf

In patient care terms focussing in particular on:

Poor diagnostic tools, training, experience and effort
The nihilistic or defeatist attitude of many care givers
Poor and inconsistent patient support in stark contrast to the support and continuity of contact people with more treatable cancers experience (one poster here had breast cancer first and said she felt abandonned with PC compared to proactive support offered to her before).

Sarah
XXX

kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

Re: I am furious.

Postby kwaitang » Fri Nov 15, 2013 1:01 pm

Thank you folks for your responses - I will read through them all PROPERLY when I have calmed down.
Our next installment - Keith has had a lot of terrible chest pain which is getting worse to the point where it was 4 times that it woke him last night.
We have asked the hospital about it and they could see no cause ( Keith had an ECG) and said they didn't think it was the embolism causing the pain and breathlessness.
We went to see our GP this morning and he said the same re: the embolism. BUT he did think that Keith may have angina. He has booked treadmill tests to confirm this although that will take at least 2 weeks. Meanwhile he has given him beta blockers, a spray and tablets to reduce cholestoral - in case.
We asked him to check records and tell us what sort of cancer he had been told Keith has.
He said localised pancreatic cancer and cells in his lymph nodes - NO RECORD OF LIVER CANCER.
We have tried to contact the hospital with no success yet.
Will update when and if we find out what is going on.
After a dreadful night I feel I just need some answers.
Arlene.

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: I am furious.

Postby LindaH » Fri Nov 15, 2013 1:02 pm

And so it goes on all over the country.

Just reading all your posts which seem to go from mild help with various aspects of PC to down right neglect and floating through the system as though we have all the time in the world. It's downright ridiculous.

My own experiences have really called into question the nursing care, or should I say lack of nursing care, because the nurse who was assigned to me way back last December I can just put up two fingers as to how many times I've actually spoken to her face to face....yep twice and once just to tell me she was busy so couldn't stop.

I'm waiting - and have been for a couple of months - for a nerve block injection as the tumour is pressing on the Celiac nerve in my back, but that's just it.....I'm waiting. A couple of weeks ago I had a melt down and made a phone call to the secretary of the Dr who is 'going' to perform the injection, she has been trying to speak to the Dr since I had my melt down on the phone and what is the outcome? I'm still waiting.

A relative of mine who lives in Suffolk rang me and gave me the phone number of a Community Liaison Nurse at my hospital - which is over 400 miles away from Suffolk - so I did phone her and though she hasn't been able to really push things forward for me, she has kicked down a couple of doors and begged the question "Why is this lady still in pain after two months of reporting it and what is being done to help this lady with her pain?" So, it takes one of my relatives 400 miles away from where I live to ask these questions.....unbelievable.

I cannot call into question my Oncologist, he is doing the absolute best he can for me and I know he is extremely frustrated by what is happening to me, or rather what is not happening to me, but the one person who is frustrated the most; is me. I feel like a number on a conveyor belt sat in Argos waiting for my number to be called. I just hope and pray my number won't be up before it's too late.

If anyone is starting a list of 'complaints' I will gladly add mine.

Linda

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: I am furious.

Postby cestrian » Fri Nov 15, 2013 4:19 pm

Arlene

Probably no comfort whatsoever but when my PC was diagnosed I was told of lesions in lung and liver. When I queried this my specialist explained that this was NOT Lung cancer OR Liver cancer but metastatic cancer of the Pancreas that has spread to these other organs. Of course I am not medically qualified to confirm this is necessarily always the case but this link may help:

http://www.cancer.gov/cancertopics/fact ... metastatic

I do hope things improve for you quickly and it is no help at all seeing different people at every turn.

Best wishes to everyone on here fighting for better treatment for their loved ones and all power to your efforts.

Love and Peace

Mike

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: I am furious.

Postby J_T » Fri Nov 15, 2013 6:40 pm

Linda, it's just terrible that you are still waiting.

There were some comments in your post almost identical to what we dealt with. It took Kate to ring Macmillan in Gtr Manchester (I live in Cumbria), Macmillan in turn found out who our 'specialist nurse' was, we had no clue till then. I rang her twice but she was no help whatsoever. She had no relevant information to give me, so we just didn't bother trying to speak to her again. When we thought Ray was going to need another stent in August, the oncs told us they would get this nurse to refer him to Blackburn where he had his first stent done, after the initial ERCP at Lancaster failed. I rang her couple of days after Ray's discharge to check she'd done it. She told me it wasn't Blackburn but Lancaster and yes she had. I queried the Lancaster bit but she was adamant. I then rang endoscopy to be told the referral hadn't reached them yet but it could take 2 days if it was internal (wtaf) but she would chase it up.

As it happened Ray recovered from his infection and didn't need the stent - good job! About 3 weeks later I received a letter from Endoscopy, not WITH an appointment but to MAKE one. The letter was dated about 2+ weeks previously, I phoned and ranted, well it made me feel better. Not only that, I came across Ray's discharge letter which clearly states his stent referral was to BLACKBURN.

It's just shocking and just makes you wonder what other cock ups are happening. We are in the technological age, why referrals and messages take so long is just beyond me.
Last edited by J_T on Sat Nov 16, 2013 12:55 am, edited 2 times in total.

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: I am furious.

Postby cestrian » Fri Nov 15, 2013 8:18 pm

FFS it's a good job that one of the benefits I've experienced is that my Blood pressure needed medication is now down to low/normal without any tablets at all as otherwise I would have blown a gasket reading this thread.

Politicians, bureaucrats, NHS managers - who is actually ever going to grasp the nettle and actually get something done about this scandalous neglect of cancer sufferers in some parts of the country. For crying out loud there must be enough examples of good if not excellent practice for them to try to copy. They don't have to 're-invent the wheel just get off their butts and make things happen!!

Even in the best run clinics the odd error will creep in as that is human frailty but the unforgivable theme seems to be endemic failure to care about us the patients. Thank God for the Clatterbridge Cancer Centre, a beacon of care, compassion and excellence. Why are there not more such centres run on the same lines by totally dedicated professionals and liaising very successfully with local partners.

Love and Peace

Mike

kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

Re: I am furious.

Postby kwaitang » Fri Dec 06, 2013 8:01 pm

Well I calmed down - for a while. Till today. Keith is in hospital again. He has been waiting for a blood transfusion - since lunchtime, it is now 19.45. The blood is apparently coming from another hospital in the same city. Nearly 8 hours !! The nurses have just been to tell him that if it arrives now they can just do half of the transfusion as the night shift cannot cope with it. If it doesn't arrive very shortly he will have to wait till tomorrow. Has no one in the NHS got any sense of urgency or even a slight rush would help. Keith has terminal cancer, do they think he now has nothing better to do than wait !!! The attitude seems to be "oh your dying anyway so you might as well spend your last bit of tiome here". We never see the same doctor twice. One even asked him about his heart attack, which he has never had. Last week a nurse left him halfway through removing a canula so she could go chat and mess about with a new door they've had fitted. I have no confidence in them. I am crying with frustration and anger. I don't want to cause any trouble for Keith as he just seems to accept everything. But I am nearing breaking point because of the attitude of the NHS.
Arlene.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: I am furious.

Postby Slewis7313 » Fri Dec 06, 2013 9:33 pm

Arlene, my family will confirm that I too am the most mild-mannered of people and never complain when having to walt for treatment as I can see that there is a team of healthcare professionals doing everything they can to improve my lot. However, if I had been treated in the horrendous manner that you and Keith have been, I would have made an exception and blown my top before now. I am so sorry that this horrible situation is being made more difficult by those who are supposed to caring for you (both). This is so alien to my own experience over the last 12 months. I wish I could come over (along with a few others from this forum) and knock some heads together. I know you need to focus on Keith for now, but someone needs to be made accountable for what seems to be (at best) nothing short of negligence.

I certainly hope the rest of your weekend pans out better than it has started!

Good luck

Steve
X