Not just fighting gallbladder cancer, fighting a hospital, and a messed up operation all because of gall stones

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For 12 years my mum kept having flare ups, going to the doctors, she had been diagnosed with stomach ulcers, 6 years ago while I was in hospital, I had to have my gall bladder out, a gall stone sitting on my duct decided to rupture my gall bladder, make it die and give me organ failure Kings college hospital did not taking my gall stones, luckily my organs did a u-turn.  While I was in hospital my mum had another flare up, 4 days after I came out of hospital my mum went to a different doctor and was told although you probably did have ulcers 12 years ago, you wouldn’t of had them this long, I think you have gall stones.  The doctor sent her to Kings College hospital who did a CT scan and said my mum had gall stones in her gallbladder and one in her duct.  A doctor told her they would not take out her gall bladder because of her COPD, so for 6 years my mum put up with gall stone flare ups rolling around in agony.  She never went back to the doctors because of what she was told.

In October my mum was ill, throwing up, upset stomach.  Her skin had turned bright yellow over night.  We got her to A&E, they kept her in and put plastic stents in for the bile to bypass her stone in her duct, but every day they kept telling her that they thought she had cancer.  She was told that they would take her plastic stents out and put new ones in for the rest of her life.  A week after she came out of hospital, she went downhill.  Back in A&E, in hospital, her stents had got infected, new ones put in, a week after coming out of hospital she went downhill, 2 weeks later back to A&E.  Trying to get an ambulance was a night mare, told me to get a cab, she was being sick and had upset stomach, a cab wouldn’t of taken her, managed to get a ambulance.  A&E wanted to send her home but kept her in, every day my mum was in hospital they kept telling her they thought she had cancer.  On 10th December, my mum had an operation, an operation they didn’t want to do, an operation the doctors kept trying to talk her out of. 

The operation was 7 nearly 8 hours, I was told she flew through it, When I got the phone call, I was told my mum was alive, the surgeon took out the stents, the 4cm stone out of her duct, the gall stones, part of her gall bladder and part of a 4cm tumour out of her gall bladder.  They would have had to take out her gall bladder, part of her stomach, part of her lower bowel, part of her Pancras, and 40% of her liver. On an 80 year old she wouldn’t survey the operation.

She has gall bladder cancer.  My mum was in hospital for 7 weeks, they day before my mum came home she was told she would never get better, she would never get chemo, she was coming home to die.  My mum had gone from 14st to 8 stone in less than 3 months, I got in touch with the hospital who put me in touch with a doctor at the cancer centre at Gyes hospital, they phoned me a week after my mum came out of hospital.  She had 3 wks to build herself up to start palliative chemo, my mum was suffering from severe depression but that phone call gave her a lease of life. 

My mum has had a talk to the doctor at the cancer centre who said with chemo it will give her 3-6 months. My mum is now 11 st 6 Ib.  Her stomach is bloated with fluid, her wound hasn’t healed from her operation even though it’s been over 3 months. On the ct scan the doctor told my mum the cancer hasn't grown since the operation, but some places they can't tell if its cancer or inflamation.  The doctor wanted my mum to talk to the surgeon at Kings again, last time we saw him he said to my mum "have you got use to the idea you are dying yet".  I had to bite my lip as I was hoping he would change his mind and operate on her again, he shows no compassion.  I am terrified her time is running out. 

  • Hello Cyberflower, 

    Welcome to the forum, I have read your post above showing some of the journey your Mum has had, and it must have been very difficult for you both to go through the different emotions and experiences that have been going on over the past months. 

    It is encouraging to read that your Mum has regained some weight, and that the surgery although long and invasive was successful. You mention your Mum is 80 years old, it is a testiment to her own personal strength that she has pulled through the surgery, and in some ways understandable that it is taking longer for her wounds to heal.  Also, the offer of palliative chemo shows that other specialists believe that there is further help that they are able to offer her. 

    As our parents get older, we do start to feel that time may run out soon, but it has been my experience that time only runs out for many, when the time is right, there will always be the belief that people are taken too soon, too young, or unfairly, but your Mum is fighting for her time and your support will help her through this. 

    It can be difficult to remain positive, but I do hope that your Mum continues to show signs of recovery. My husband started palliative chemo nearly two years ago, and is doing really well, lets hope it is the same for your Mum 

    Take Care

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Thank you for your possative words.

    My mum went down hill a few days, feeling sick for a few days, pain in her right side.  Started being sick, I wanted to get her to A&E but she wouldn't go as she is very stuburn, brought up in a difrent generation to now.  The nurse came to change my mum's dressing agreed with me, she said my mum had a tempature.  We rung for an ambulance, and got her to A&E.  Ambulance woman said she had a high tempature but her obs were fine.  A&E doctors said her blood is showing an infection. She had CT scan and X-Ray to show she had a deep bile duct infection, the doctor in her team she was under said it can happen  when they move the bowl in the operation she had.  They want to keep her in and give her long term antibiotics.  The good news is that both CT scans, one at hospital and one taken 3 weeks ago show there is no change in her cancer, it hasn't grown or spread what so ever which surprised them.  My mum will be sent home next week with long term antibiotics, and the encologist will decide to stop them when my mum is ready to start chemo.  The doctor said they could do a prosedure but they are hoping the antibiotics will work.  They will not operate on her unless they have to in the furture because their is a high risk of heart attack or stroke at her age, and it would set her back with her cancer treatment. The doctor also said the wound on her stomach from her operation is healing nice, altho slowly.  I am worried now when she starts chemo that she will get an infection and how her body will react to chemo, I guess time will tell.

  • Hi Cyberflower, 

    Thank you for letting me know how things have been, I am sorry that Mum ended up back in hospital, but it does seem that from that experience some positive information has come to you both. 

    Hopefully the antibiotics will work well and when Mum comes home she will feel better within herself, and will begin to regain her strength, ready for when the Chemo starts. 

    I know that you mention that you are now worried how she will react to that, and that is understandable, but sometimes, we worry and make things worse by being guided by fear, I do hope that you can focus on the fact that the Cancer has not grown, and that the chemo offered to her may help her rather than weaken her.  

    No-one knows what tomorrow will bring, but I wish you and Mum all the very best in the journey ahead. 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • My mum ended up in hospital with septis,  which they have got under control.  The doctors at Kings College hospital have now told my mum that they will not do any operations, any prosedures she is now on palative care, and her next step is St. Christophers.   She has a bile duct that is blocking near her liver and on rotating antibiotics until the end of her life.   A student doctor in A&E told me that they are expecting my mum to keep coming into a&e with re-acouring cholecystitis, keep her on antibiotics for the rest of her life, until one of the infections kill her, or the medication gives her liver failure.  The roatating antibiotics are buying her time and basically I should be greatful they brought my mum time when they gave her a operation in December.

  • Oh my goodness CyberFlower, 

    I am so sorry to read this, you must be breaking your heart!  and Why would a student nurse say this to you??

    I know when I heard the words palliative care I fell to pieces, but Dal is still on palliative care two years later... I know that is him and not your Mum and I can't comment on how palliative care will be for her.

    How does mum currently manage her cholecystitis?  has anyone offered suggestions on how she is to manage it going forwards, especially if they are not going to operate?

    I am gutted for you too... this has been such a difficult few months, how are you?

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Hello Lawedal

    Thank you for replying

    I just can't get my head around that my mum was about to start palative chemo, when they saw the CT scan at Gyes hospital cancer centre, the oncologist said it showed mum had an infection in her bile duct, and that the CT scan said there was no change in my mums cancer, she said that it must be clusters and cells, and that there must be some in there but its not showing up on the CT scan. 2 weeks my later my mum ended up in A&E, CT scan showed no change in cancer since last scan, diagnoised my mum with cholecystitis. 3 weeks later back in A&E blood test shows that the bile duct walls have thickened with fat strands, obstruction secondary to cholecystitis.  rotating antibiotics, the junior doctor who came down to a&e said they won't do any operations or prosedures, because of risk or stroke unless it was an emergency.  They put my mum on rotating antibiotics.  4 weeks later, back in a&e, Septis, secondary to cholecysistitis. They found e-coli in her blood (could be from chinese take away we had). Same junior doctor who works on the surgical team, said rotating antibiotics until my mums end of life.  That my mum might have an absis they might have to drain, done CT scan, she said it don't look like she has an absis to the untrained eye. My mum had a MIR scan,  Doctors  said they would discuss in the meeting,  what they would do next.  Doctors came down stairs after the meeting, MIRC shows a tumour that has grown out side of the gallbladder, from the liver towards the bile duct, going across. The reason why she keeps getting flair ups is because my mums emmune system can't handle the cancer. My mum is now on palative care, no operations, no prosedures.  Bluntly next step is St.Christophers, that they are surgeons and we are just wasting their time.   When I told him about what the student doctor told me the doctor said that isn't true angry.  When I asked "who do phone next time my mum has a flare up?" he said "we're surgeons, don't waste our time, talk to st. Christophers".  When I asked him how long has my mum got to live? he said we will have a few conversations with st. Christophers. 

    After my mum had her operation a doctor told her bluntly she will never get better, she will never get chemo she is just going home to die.  I got in touch with the nurse, who got me in touch with guys cancer centre to try for chemo.  It gave us hope, but my mums wound wasn't healing quick enough to start the chemo and she got this infection. Every time I talked to one of her doctors on the surgical team they fobbed me off and treated me as if I was stupied.  now they are coming up with this tumour that is causing this problem.  I just can't get around that my head around there is a tumour remembering all the over conversations what they've said.  I want a secondary opinion, my mum who is nearly 81 says they are the specialists, if that is there plan there is nothing I can do about it, and she takes one day at a time. I don't understand how Kings college hospital has such a good reputation when this is how they treat people. The oncologist appt was for 8th July, phone call for a review of my mums cancer, but they've changed it to the 12th, which don't feel hopefull. 

  • I emailed Guys cancer centre and they phoned us yesterday.  Told us where my mum wasn't able to have chemo to clear up any residue of the cancer from the operation, the left over cancer from the tumour in her gallbladder has attached it self to scar tissue in her gallbladder and bile duct.  She said she will send the CT scans and MRI scans over to guys hospital for a second opinion, will phone me 2 wks time as next week she is on holiday.  Kings College hospital surgeons are liars and have hung it out until its too late. All because my mum is 80 years old and has gallbladder cancer, a cancer she would of never of got if Kings college hospital took her gallbladder out 6 years ago.  Shows what liars Kings College hospital are, lying and fobbing us off until my mum ran out of time.

  • My mum came out of hospital, 2 weeks later on the 10th was ment to go change over to a diffrent antibiotic, 4 days of throwing up, very weak and fainting at the front door when a neighbour knocked on our door and I was out. Called an ambulance because her obs were normal they refused to take my mum to a&e told us, phoned 24hr gp who changed her antibiotics back over to the previous ones. Phoned st Christophers for them to deal with my mum. Gave her an injection of morphine and anti sickness. 5 days later GP called the ambulance, paramedic turned up 5 hrs later talked my mum out of going to a&e saying just because GP says she should go on to IV antibiotics/fluid the doctor at a&e can turn say no and tell her to go home. They told my mum to use home care as she would get the same care. My mums tempature had been spiking, garbled, shivering, tempature of 39 told by st christophers to give her cocodamol to bring her tempature down. Home care once a day for 3 days, took blood her infection and inflmation markers were all over the place. 4th day they called an ambulance arrived with in 20 minutes, paramedic told me to complain to Pals about the previous ambulances and doctors. Blood in a&e show infection markers and inflamation markers are way up, all over the place. She is very septic, Conclusion Septis and cholognitus in her bile duct. ambulances have put my mums life at risk. 14 days its taken us to get her into a&e. I was up all night and day giving my mum cocodamol every 6 hrs, and morphine every 4 hrs. and to add to her health problems she now has a hernia caused in her fall when she fainted at the front door and in total agony. Kings College and the ambulance service have let us down when they are the ones we rely on with our lives    .

    After 6 days of my mum laying in agony on her back, unable to move, doctors filling her stomach every day, saying her hernia is soft, nothing to worry about. The hernia has grown so the doctors ordered a CT scan, turns out the hernia wasn't a hernia at all. two doctors came into my mums room, said that it is going to be very painful and put a syringe into my mums stomach, they drew 3 bags of muck off. cut her stomach, put a wire attached to a bag to drain it. it is pouring out of her. Doctor said who ever diagnosed this as a hernia should of known. In the operation they have to turn the patient onto their side for hours, they can catch bugs from the operating theatre, my mums operation was 10th Dec, 7 months ago     . Total neglect and abuse by the doctors all because she is 80 years old and has cancer.

    Spoke to my mums head consultant yesterday, he said that my mums cancer had progressed, that her gallbladder is cemented, tried to explain the surgery which is totally different to what I was told that had been done. He said she has bile coming out, they are going to keep her in another week, see how she goes. IF she comes out of hospital she will be coming home to die. Asked me about her going to the hospis. I said no I will be looking after her at home, and if I was getting help from St Christophers, I said how let down we have been by this whole system. The nurse said the bag of muck is caused from a fiscula, the bile is from her lower bowel. They get rid of the muck and then they operate to remove the fistula. Today it got me wondering about the operation, I looked up my mums discharge notes. It says in Decembers discharge note biliary fistula. I looked up bilary fistula’s on the internet, ‘a biliary fistula represents an injury to the bile duct, most commonly seen as a complication of cholectystectomy, common bile duct exploration. Postoperative bile ducts leaks are usually manifested within a week after surgery, with patients presenting with abdominal pain, tenderness, fever, nausea, vomiting and jaundice. All symptoms my mum has ended up in hospital and told she has colengitus. After my mum had surgery, her wound become infected and they had to open it up again, sew it open and put drains in. It kept getting infected when she came home. When I went to visit my mum today in hospital I asked to speak to the doctor again. In my mums room two doctors came down, they said we heard you wanted to speak to a doctor, I said yes about yesterday, I looked up my mums discharge notes and it says biliary fistula. Is this the same thing, the doctor went on to say bile was leaking from her bile duct, the biliary fistula caused an infection which was pouring out of her stomach after the operation, we thought we got rid of it, it some how found a way into her stomach through a fistula and caused this infection. I said how can you did you think you got rid of it, I read you have to operate on Fistulas to remove them. He said she will never have another operation, that was a one off. For 7 months my mum has been In a & e 5 times. For 7 months she has been leaking bile from a operation caused by Kings College Hospital which they new about from scans, now they have put her on end of life.

    So it turns out her so called hernia isn't a bug from the operating theatre, its not caused by her biliary fiscula, or her bile duct. The last time my mum was in Kings College hospital, 16th May discharge note reads - The reason for admission was: presented in a&e for management for septis secondary to choloangitis. background: pallative bypass for locally advanced GB cancer in December 2021 long admission post operatively with enteroculaneous fistula - now healed. Her hernia is a enteroculaneous fistula, An enterocutaneous fistula (ECF) is an abnormal connection that develops between the intestinal tract or stomach and the skin. As a result, contents of the stomach or intestines leak through to the skin. Most ECFs occur after bowel surgery. Her surgeon Mr Srinivasan said her bowel had to be shortered in the surgery, He also said that that her so called hernia was from a bug when she had her operation. When she was screaming in pain, he said "oh thats just the cancer". He won't admit that he messed up her her operation up. My mum won't die from the cancer, by mum will end up dying because of an operation Mr srinivasan did on her. 6 years diagnoised with gallstones. Sept had two prosedures for stents, and then an operation on 10th December. The operation to take her gall stones out and the stents. She came out with cancer, a bile duct that has caused repeated infections where all the doctors have done is put her on repeat antibiotics for 4 months, oh and a enterocutaneus fistula. pouring out her stomach and causing her bowel problems. She is now in hospital screaming in pain. She will not die from cancer she will die from results of an operation Mr Srinivasan did, and too pompos to admit it.