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'
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'
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'
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
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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.
