Am I the only patient this happens to?

Posted , 5 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I had my gallbladder removed in February (open surgery). They found it was cancerous so I had a liver resection five weeks later. Unfortunately, I had to wait until May for the histology results, even though I asked my allocated specialist nurse and my surgeons secretary to help. Normally the results should be available ten days later but for some reason (never explained) I had to wait seven long and anxious weeks.

I was due my six month check up tomorrow. I went for a CT scan ten days ago, but because the results have not been sent through to the relevant department, they have rung this evening and cancelled. I'm told it will be at least two weeks before I can have another appointment unless the scan results turn up in the morning- I have to ring to find out. I have had this appointment for six months and I feel very let down. There's no guarantee they won't cancel again for some reason. Meantime I'm left wondering if the cancer has returned.

I have already had procedures and scans postponed during my treatment and when I was admitted with jaundice last October I was told I'd have surgery that week, but I was discharged without any real explanation and waited another three and a half months.

In December, I found out by accident that I wasn't even on the waiting list!

Is this just me being unlucky?

0 likes, 19 replies

Report

19 Replies

Next
  • Posted

    I'm so sorry this is happening to you!  How frustrating!  I can't imagine what you've been going through! Just before my last diagnosis I had to wait for a PET scan and it was all I could do not to go completely crazy. I hope they get the results and your appointment proceeds! Is there some governing body you can complain to?  Know that I'm thinking and praying for you. xx

    Report
    • Posted

      My surgeon has been absolutely brilliant. I think he must have felt sorry for me due to the seven week wait I had last time!!  He has tracked down my results. CT is more or less clear, but I've an adrenal nodule which is benign and currently asymptomatic, except my tiredness may well stem from this. It will be checked for changes every six months when I have my CT scans. It's a relief that I don't have to wait another two weeks. 

      Report
  • Posted

    You are so kind Lynda. 

    Just wondering if this happens to others? Or have I just been very unlucky? Whilst I'm very grateful for the surgery I've had, my gallstone journey has been a comedy of errors. I feel like it could provide material for a sitcom. However, as you know, a cancer diagnosis is no joke and time is critical. If the CT results show something sinister, I don't want to hang about.

    Report
    • Posted

      I'm so glad you were able to get your results! I know exactly what you mean. On Sunday night, August 6, 11 days before my quarterly monitoring visit with my oncologist, I felt a lump in my abdomen.  Went right to ER.  There over the course of many hours, I got blood work, an EKG, what they call a whole work up.  Then, I got a CT scan that showed the lump and that a couple of lymph nodes in my lower pelvis were lighting up as well.

      We were given a suggestion by the ER doc that we could wait for my normal appointment or go to this new "state of the art" hospital across the city.  We got there at 4 a.m.  I was admitted, and seen by 2 docs who were about to go off duty at 7.  I was told my treatment plan would be made before they left, but it would include an MRI and biopsy--possibly surgery the next day.  

      At 9 o'clock a.m. I saw two different doctors, one who told me she thought my cancer had returned (very cheerful, she was).  She also told me another doctor had put my treatment plan on hold for the tests, but she would try to lift the holds, and she did. Before she was finished, a fourth doctor walked into the room and told me resentfully that it was inappropriate for me to have been admitted to the hospital, but that they would give me an MRI after lunch, and he'd try to squeeze me in for a biopsy later on in the day.  Fortunately, he asked an interventional radiologist to do that one.  The tech who did the MRI, and the radiologist and his staff were really nice.

      Despite the fact that I had been given Cipro the night before for a bad UTI, I was designated "nothing by mouth" all day.  I had an IV, and they could have given me saline, but no.  This well-meaning volunteer came into the room mid-afternoon and told me I was a "fall risk" gave me this ridiculous quiz, "What's the most important thing in this room?" My answer "the call bell." Had me sign something to acknowledge that I needed to call a tech to go use the bathroom.  Well, they never came, so I had to take of the motorized leggings they give you to stop clots and wobble into the bathroom myself.  A male tech showed up at 10 and asked me if I wanted to take a shower...now that was truly bizarre. 

      They kept wanting to give the test results to my gp, not my oncologist.  I finally had the tests done, very late in the afternoon.  The radiologist was the last doctor I saw. Even though I asked to speak to one. I had to wait till the sedation from the biopsy wore off, then I got my clothes on and had to wait while they found someone to remove the IV set up, then wheel me down to the car.  We went home at 6.  I hadn't had any sleep since Saturday night. Still I figure I saved myself weeks.  The tumor was found, I got a CT scan, an MRI and biopsy within 2 days.  On Tuesday, I called my oncologist's office and they downloaded everything from the hospital because he had access.  On Thursday, he called me with the diagnosis, and I saw him the Thursday after that, more or less to provide info and comfort.  I saved a considerable delay by going to the ER and hospital and getting the CT scan, the MRI and the biopsy in 2 days. No matter how scared and miserable I was while I was there.  

      We were trying to get a PET scan done before I met with my doc the first time, but no luck.  There are only 3 in the city. And one had broken down two times in 2 weeks. So I had a brief appointment with him to talk strategy, then met him the next Thursday to discuss the PET results.  We were going to have surgery. But decided on 3 courses of chemo to reduce abdominal tumor and kill off any wandering cancer cells.

      Had chemo port implanted on August 30, first chemo August 31. Second chemo yesterday.  After 3rd, a CT to assess, and then, maybe surgery if tumor is reduced significantly, or more chemo or radiation and then surgery.  It's a versatile plan that makes more sense to me.  My tumor hadn't shrunk after 1st chemo, but it didn't grow, either, and I did have pain in it after the first cycle.  Seems more compact to me, and less "alive" if that makes sense.

      All the above was written to illustrate your remark above, "If the CT results show something sinister, smile I don't want to hang about." As you can see, neither do I.  I trust my doctor, but I refuse to let those I don't trust pat me on the head and send me back to the waiting room, as it were. I know it's terrible in the UK, but despite how much the US boasts about it's medical care, it depends on what region of the country you're in how well or how poorly medicine is practiced, too.  A friend of mine lives in the rural east, and their nearest hospital was closed, without warning, last week.  Now there is no ER to go to people will start dying from car accidents, wounds, heart attacks and strokes, because the nearest hospital is almost an hour away. Their ambulance/rescue service is all volunteer run. Appalling.

      Please let me know how you're getting on, won't you?  xx

              

      Report
    • Posted

      It doesn't sound that different from here in UK, Lynda. The lack of communication between professionals sounds pretty much the same. I pity your friend. They've closed an A&E over at Grantham in the evenings. Nearest hospitals are Lincoln or Leicester: not the distances you are used to covering but on narrow, winding roads, full of ruts and potholes, it easily takes over an hour. Then there's the wait in A&E- two hours minimum before you get to see a doctor. The moral of the story is: don't get sick after six at night!!!

      Also they are talking of closing local children's heart unit which has an outstanding reputation. Now children will have to travel to Birmingham on motorways which are crowded at best and at a standstill at worst. 

      There doesn't seem to be a common sense attitude to medicine these days and certainly good bedside manners have disappeared.

      You sound like you've been really up against it. I admire the way you're tackling it, but isn't it bad enough to have to cope with a life threatening illness without having to fight to get the treatment you need? I feel it's been an uphill struggle for me. My daughter 2 cried when she heard my scan was clear. Also my husband. It has a knock on effect for the whole family which I'm sure the hospital staff don't realise. Son in law bought me flowers! They have just gone through a miscarriage too, so it's been a hard year. Roll on 2018!

      I hope you're doing ok. If anyone deserves to beat this, it's you. You've given some very good advice to lots of people. Keep posting. Thinking about you x

      Report
    • Posted

      It seems that the institutions and governments have effectively taken the "Health" out of Health Care, doesn't it?

      I am doing okay.  Thank you for your kind words.  As you know, you can only take this a day at a time.  I hope that things continue to improve for both of us!  xxxl  

      Report
  • Posted

    God bless you .

    surely you have a case of clinical negligence,don't you ?

    and are we talking n h s here ? No hope services.

    by the way , how long after your initial surgery did you have to wait to find out it was then cancerous ?

    and how big a deal was the liver resection surgery and recovery compared to the initial gallbladder removal surgery ?

    thats if you don't mind my asking of course.

    i feel your sorrow yr pain your fear and I can't help wondering what this life is all about really can you ?

    i had mine out 7 days ago ,I had a 23cm stone stuck in the cystic duct for 3 years ,3 years of agony he'll worry well you I know know as I've been reading some of your posts over the months.

    the NHS totally failed me also also and I just had to self fund my own opp just to find out afterwards that my whole gallbladder was gangrene and full of pus ? as nothing had been able to enter or leave it in 3 years , nice .

    im going back to my surgeon on Wednesday for the surgery follow up and keeping my everything crossed.

    im an anxious person anyway and the last 3 years I might just as well have been dead.

    its broken me mentally physically and emotionally to be quite honest I'm a broken man.

    what can we do ah ? Some guys have all the luck.

    Report
    • Posted

      Yes it is NHS, sadly. I'm not interested in a clinical negligence claim as I do feel for the medical and nursing staff. They're really up against it what with budget cuts and staffing issues. Also my hospital is up for the axe. There are three hospitals in the trust and one has to go in the interests of economy. My hospital is old buildings scattered over a large (valuable) site. The facilities for patients are awful and maintenance is being kept to a minimum. It's like a third world hospital. The staff are demoralised. They've had no pay rises in years and their jobs are threatened. I do understand how hard it is for them. 

      Yesterday my surgeon and his team pulled out all the stops to get my results so I wouldn't have to wait any longer. They showed kindness and compassion.

      I'm normally a fit and active person. Last time I was hospitalised was twenty-five years ago when I had a hysterectomy. The deterioration in the NHS since then has frankly shocked me. I didn't realise how bad things have got. I feel it's been a battle to get something that is my right: my grandparents, parents, children and myself and my husband have paid for this service, so it's not free. Sorry for the rant but I never thought patients would be left to suffer in pain for months, or even years, the way they are. Maybe I'm just naive?

      I had my surgery (open cholecystectomy) February 4th this year. I'd had gallbladder issues since July 2016. I was in hospital a week, then discharged home. A week later my temperature spiked and they readmitted me. It was the weekend so my surgeon wasn't on duty. The on duty surgeon broke the news to me the day after. He was really empathetic and his team couldn't do enough for me. I was discharged on Monday and had appointment to see my surgeon on the Wednesday, so very quick. Liver resection was scheduled for two weeks time, so five weeks between surgeries.

      I would say I was just getting over gallbladder surgery when I had liver resection. My surgeon used the same incision. I have a horizontal scar about ten inches long across my abdomen, but better than two scars. I was on HDU for three or four days and then on a ward for the rest of the week. I opted to stay in an extra day to finish IV antibiotics, so stay was seven days instead of six. 

      It sounds awful I know but it was t actually as bad as I thought it'd be. On HDU I had some wonderful nurses. The incident that really sticks in my mind was the housekeeper who found a cold yogurt when I couldn't swallow due to my throat being sore from all the tubes they stick down your throat. Conversely there was a young nurse who insisted my PCA pump was working when it wasn't and I spent a whole morning without analgesia before the sister discovered it wasn't working. I'm 67 and don't think I look like a drug addict but that's how he made me feel.

      I've recovered well. I had a tough couple of months but I'm back to 'normal' now. Four stones lighter!

      I get some right sided discomfort at times and I'm easily tired but otherwise feel better than I've done in years.

      I did consider going private as I was getting desperate around Christmastime, but my surgery came through unexpectedly (cancellation). Now glad I didn't as everything I've had done would have bankrupted us!

      You're at an early stage in your recovery. There were times I also felt very low. At week four post liver resection husband was hospitalised for a week with infected bursitis in his knee, then daughter had a miscarriage so it's been a year we need to put behind us. Lynda, who posts here, gave me good advice: try to stay positive. Normally I'm an anxious sort of person but it was like I'd been given some sort of miracle drug and I've surprised myself by how calm I've been throughout. Husband and family have been great support throughout which has helped.

      Just take it easy. Sleep when you feel like it but try to walk about a bit too. Drink plenty water and avoid fatty foods and alcohol for a while. There is life after cholecystectomy even if it doesn't feel that way right now!! 

      Report
    • Posted

      Bless you and thank you for you kind reply.

      im 23 days post opp now and I think I'm making good progress although it's kinda hard for me to gauge it as the last 3 years have done my mind so much damage and left me with a completely negative attitude but I'm working on it.

      i agree with you about the amazing staff within the NHS well some of them at least,as I feel many couldn't care less either way as long as their mortgage is being paid, and I remember days long gone by now of course,when things were so very different.

      my problem is with the institution of the NHS and government not the staff or many of them within it as I know their hands are tied and they are made to lie or lose their livelihood. The morality of our government and said NHS institution Is despicable.

      And it needs challenging for the sake of our children and children's children. If we ignore what's going on ,what chance in heavens name do they have !!!

      god bless you and you are in my prayers.

      Report
  • Posted

    Ooo you better call the director of your medical group and file a grievance. That is totally immoral. How dare your practice not help you that is so so wrong. Sorry and call someone and complain.
    Report
    • Posted

      I have complained through PALS. A surgeon told me when I was in hospital that this is the way to get changes made. If nobody ever complains, nothing improves but I’m not interested in  compensation. The NHS is in enough trouble without patients suing. I used to work in a non clinical capacity for the NHS and have family members who are working hard to improve the service.

      As things worked out, my surgeon sorted everything out and I got my results the same day. I call that a caring service.

      Report
    • Posted

      Complaining to pals is a joke, the NHS is the largest institution and the largest employer in the U.K. And they are all in it together pals included and they all stand ranks together and back each other up all the way.the NHS had got to be the biggest scandal in the entire history of the United Kingdom.and they and it needs to be exposed for what it really is.

      which is a service , that picks and chooses who it will or will not help or save. (Fact)

      thats fine if it chooses to save you but not if it chooses not to.

      Report
    • Posted

      Fenando.

      thank you.

      i intend to make sueing  the NHS the Bain of my life.

      It's a waste of time complaining they love people who merely complain ! 

      But thank you for your concern and kindness.

      Report
  • Posted

    Hi, 

    Glad you got your results and it was all good! 

    In answer to your question my Dad in March had a phone call at 5pm the night before he was due for a hip replacement to cancel. My brother in law had cancer and had radiotherapy, he should have had a follow up appointment 3 months after to see if it worked and heard nothing. My brothers father in law had a small stroke and nobody told him and he found out by chance a couple of years later. I was rushed into a@e nearly 2 months ago told my gp surgery would be told to do an urgent vascular appt and i still have not been seen! I've tried and tried with phone call after with messages not being returned and all sorts, even my Dad has tried it's a joke and all this on top of all the gallbladder symptoms and losing 8 stone this year! The NHS is sh#te!

    Report
    • Posted

      Matt I'm right with you all the way and agree with you whole heartedly,well done for speaking up as we all need to and we all need to try our hardest to sue them as if we don't they will keep getting away with it and continue to kill us off or leave us to die, I feel it's as simple as that.

      people , you all need to wake up to what's really going on within the NHS as we all depend on it and when it happens to you or yr loved ones or yr children it's going to be to late. Just look at what mat has wrote here please ? Come on that list is disgusting, and what we pay our national insurance for that ? Really !!

      wake up uk 🇬🇧 I'm going to form an alliance against the disgusting treatment we as a nation are being submitted to by the NHS once I have made a full recovery, if I indeed do so. Watch this space.

      matt I'm with you.

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up