Absolute disbelief at how I'm being treated! Not sure what to do next!

Hi lovely ladies, as an update, I was admitted (after fighting for a week) on 14th to have my ascites drained at last as I was so uncomfortable! They got 6 litres off which made me feel a whole lot better! My bloods were deranged with a very low protein and I had developed small pleural effusions due to this! As my surgery was scheduled for 20th July I was kept in hospital to improve my nutrition and make sure I was as fit as I could be before the surgery. The staff in the ward were amazing and very attentive!

The big day came and I was fasted for surgery from 2am, by 3pm I hadn't gone to theatre and was feeling awful, dehydrated and shaky due to low blood sugar. The nurse rang theatre to say take me down or put a drip up. At 4pm my consultant came and advised they needed to cancel my surgery due to problems in theatre. I burst into tears as I'd been anxious and stressed all day! He advised he would get me to theatre on Friday so I felt a bit more reassured! Well Friday came and again was fasted and sat waiting, at 1pm was again seen by consultant who cancelled me again as they couldn't get an anaesthetist!! He spoke to me and my family and said I could go home and he is trying to get me to theatre next Wednesday but can't yet guarantee this!

I will find out tomorrow if they can get a team together or not! I am devastated and so angry that emotionally and physically I've been put through this ordeal on top of having this diagnosis! If they tell me tomorrow they can't get my surgery done on Wednesday I'm not sure what I will do! My ascites is building up again and I just feel so emotionally drained!

I intend to speak to PALS tomorrow as my consultant suggested I complain as it carries more weight if it comes from me. I just feel so dejected and I am having to fight all the way to get the treatment I need! I'm not sure about asking for a referral to somewhere else as this might take even longer to get my surgery, any suggestions gratefully accepted x

Sorry this is a long post xx


47 Replies

  • Hi lovely,

    I would ask for a referral elsewhere if they can't get a team together, this is absolutely disgusting when you speak to PALS tell them your a human being and feel like you're getting treated like cattle, in fact cattle would be better treated, also say it's putting doubt in my mind wether the team are up to this journey or not xxx

  • Hi Callmemum yes you're absolutely right I am rapidly losing faith in the system and it has made an already traumatic time even worse for me and all my family!

    I am at a loss to how they can do this to me and not expect me to lose my mind!!

    Thank you for your support xx

  • Hi Callmemum, always to the point very well said. Take care Cindyxx

  • I think one of the issues in hospital is so much is going on that we are unaware of.

    My son who was 18 was transferred from a local hospital to Guys and St Thomas we didn't know if he would arrive alive.

    He had multi organ failure while there and they operated on him in ICU. Too ill to be moved. He was then attached to a machine that oxygenated his blood. It has only ever been used for surgery so is was a risk to try for a long term solution. They closed a theatre as he needed an anaesthetist and a heart surgeon round the clock. They did eight hour shifts for which I am eternally grateful even though he didn't make it. The result was eight days of cancelled surgery.

    I know the NHS is stretched but they wouldn't cancel without good reason. I really hope you get your surgery soon and ask them to keep you informed

    LA xx

  • So sorry for your loss LA and yes I understand that there is a lot of pressure within the NHS my consultant said there was too few anaesthetists and he couldn't get one.

    I'm just desperate to get on the journey to recovery and treatment and this has been so traumatic

    Thank you for sharing your painful. experience it's put things in a bit more perspective for me xx

  • Hi Lily-Anne, this is so sad I am so sorry to hear this.

    In one breath many on here say how wounderful the NHS is & then it's all blown a way with such sad stories like this. My heart is with you take care love Cindyxx

  • So sorry to read such a sad story, LA. It must have been a dreadful time for you. With sympathy, love Solange. Xx

  • Hi Bev

    Remembering how scared I was before my surgery and how awful the preparation is I can only imagine how much extra trauma this has caused you and your family . Definitely make a complaint to PALs . I can understand how your surgery may have been postponed the once due to an emergency but you should have then been first on the list for the next available slot .

    To change your care is a tricky one as your surgeon and consultant team are probably as frustrated as you. Will depend on how you feel about your surgeon and possibly worth looking into your options .

    My surgery was expected to be 3-4 hours and ended up being over 8 because they found more disease under my diaphragm that wasn't seen on the scan . Also took longer to remove the calcified disease on my peritoneum. I kept meeting other surgeons who were called in to help out ! when I was on the ward afterwards . A week later a lady in the opposite bed came in to have her surgery saying that it had been cancelled the week before after her being all prepared and ready to go because there was a delay in surgery .

    I don't know for sure but it's likely that my longer surgery contributed to this and I apologised to her . I am truly grateful that the surgeons took the extra time to remove all the evident disease and am now NED but obvisiously this meant they couldn't complete their original list .

    Whilst I was in the high dependency ward the day after I overheard a surgeon discussing the non availability of a bed for his patient saying he would have to cancel his surgery as couldn't go ahead as there was no bed now available for after the op as an emergency motorbike accident had been bought in.

    Unfortunately with resources being limited we will always have to rely on the professionals making decisions on the greatest need at that time . What is unacceptable is when operations don't happen due to poor planning and incompetence.

    Hang on in there and hope you get your surgery completed successfully as soon as possible . Love and best wishes Kim x

  • Thanks Kim I do like my team and my consultant seemed as devastated as me to be honest and he has asked me to contact PALS as he was so frustrated with the system too!

    The first cancellation was apparently due to the anaesthetist having to leave theatres for some reason and second time they couldn't get one at all!

    I'm hoping I get told it is definitely going ahead this Wednesday as my ascites is building again and I don't want to have to have another drain so close to surgery if I can help it xx

    Thank you for your support it means a lot xx

  • Sorry you're having such an emotional, frustrating time. It seems to be a sign of the times. I've watched a series on TV called Hospital and couoldn't believe how many urgent operations were being cancelled with Consultants themselves going round the hospital pleading for Beds. Even a man with a potentially fatal brain haemorrhage had had had his ops cancelled time and time again. I couldn't believe that even Consultants couldn't change things.

    Keeping my fingers crossed for you on Wednesday and sending best wishes and a hug, love Solange. Xx

  • sounds dreadful...do speak to PALS...I should contact your MP too. Having said that, they are probably doing their best and obviously want to protect the quality of service. I think sometimes they do not like to do the ascites drainage too soon before an op. in case it builds up again as it did with me...( 9 and very soon after 7 litres) Can you talk frankly to your team?

    love Chris xx

  • Thanks Chris yes I can talk to my team and my consultant was upset this has happened to me too! I am mindful that my ascites is building up again and as you say I don't want to have to have it drained again so close to hopefully having my surgery x

    This has all made me so stressed and that too isn't good. Hopefully I will get somewhere tomorrow and have a definite date but all this has made me very dubious about trying to prepare myself emotionally for the surgery again xx

  • can understand this...my second one worked well though and I fel once they had done that they were keen to stick to the surgery date...the day after my birthday(!)

    Best of luck Cx

  • This is dreadful, but it is what we as a country have brought upon ourselves by ignoring the damage being done to the NHS by a political idealism which sees health care as a source of profit. Jeremy Hunt co-authored a book years ago which set out his ambition to make the NHS private, and that is what they have been working towards. The first stage is to make people dissatisfied with the NHS, then bring in private providers. As we are seeing, this is happening. It will get worse as long as people ignore the realities.

  • So true, Rachael. Private Companies making profit from within the NHS should never have been allowed. Xx

  • Hi Bev,

    I can really imagine how disappointed, upset and frustrated you must be feeling at this moment in time.

    Unfortunately in all aspects of medicine there are issues that arise without prior warning, emergencies come in that have to be prioritised in order to save lives. Some operations overrun due to unexpected difficulties, my surgery was initially delayed because an emergency patient was brought in and had to be prioritised and I was initially scheduled for 5 hours in theatre and I was in for 8 hours, I also had to have a high dependency bed available before surgery could start, so they're all contributing factors which can and do affect schedules. The lady due to follow me into theatre would have been delayed possibly until the next day, this in turn has a knock on effect to patients the following day and so on, it's like the domino effect. Theatres are booked quite some time in advance and it only takes one sudden change and the whole schedule is affected.

    I think you are possibly right that to start the whole process again would just delay matters even further, so I would suggest you see what your surgeon has to say tomorrow, if he says he isn't able to treat you Wednesday ask him if he knows when he will be able to, if he is unable to give you the answer then ask if he knows if there is a way that you can be seen quicker elsewhere, in the meantime speak to PALS, they will be able to find out why these delays have occurred and they will get back to you in due course.

    I hope you get the answers you want and more importantly that you get your surgery sooner rather than later. Take lots of care ❤️Xx Jane

  • Me too Jane I'm hoping tomorrow I will have a definite date and that I won't be cancelled again xx

  • Hi. Ive just read yr post and Im so angry and upset for you so can only imagine how you are feeling! PALS is definitely the way forward. I just wish there was something I could say but im so angry and speechless at how u have been treated. All I can do is send you a virtual hug, know that we are all thinking of you. Do let us know how you get on. Stay strong. Kathy xx

  • Thanks Kathy I think me and my family are all upset and incredulous at the moment x I'm swinging from tears to being angry I just want to start fighting this beast and to feel like me again! I really want a date for surgery tomorrow or I think I will lose the plot x

    Your support is very much appreciated and I will let you know what happens xx

  • Been thinking about you a lot since I read your post, do hope you get your date for surgery today and more importantly they stick to it xx sending you a big hug, Kathy xx

  • Thanks Kathy xxx I've already spoken to my GP this morning who is appalled and will do all he can to fight for me to get my surgery asap! I just want to start the fight against this beast and it doesn't help having to fight the system to get the treatment I need

    Thank you for you support and hugs they are much appreciated and needed 💖

  • Have you heard anything today? I've only just read your post and my heart goes out to you. Please go ahead with your complaint, for yourself and others (and the team too!). Much love and strength to you. Hope you get sorted soon.

    Sandra x

  • Bev- What a stressful and difficult addition to an already high anxiety time for you. My surgery was scheduled for 1p and I lay waiting on bed in prep area for several hours as my surgeon was running very late with another surgery. I can't begin to imagine if it got postponed. And a two times? I feel for you sweetheart. And sending you hugs and strength to hold on just a little bit longer. ♥️♥️♥️

  • Thank you Spencer2016 xxx

    This site has been an amazing support for me and you ladies are all amazing xx

  • Yes we are treated worse thana cattle because we don't bring the cash in.

    Unfortunately tho even privately, like in my case, it can happen. They messed with time only but even then i just refused to sit in gloomy ward waiting so i went for a walk around and told them to call me when surgeon is ready. They said he was still delayed the theatre but when i saw him 20min later he's already had his lunch and break. Hmmm

    I hate nhs and wish it goes private because it'll never be sustainable and will never put people's lives first.

    Private insurances cost a lot less than what i pay in tax for nhs so why do i have to be punished by what i pay for

  • Hi,

    I admire your fight and spirit in tackling this frightening disease and I wish you well. But contrary to your views on the NHS, in my own brush with OC nearly thirty years ago, I think I would have been seriously concerned having this awful disease in a system which put profit first. I hate the way this ethos is infiltrating our NHS. I remain eternally grateful to them for saving my life at a time when budgets and staffing weren't on such a knife edge.

    I wish you all the best and hope that your treatment is going well for you.

  • Smilenwave I actually am a big supporter of the NHS and think it's a massive safety net for all those people who can't afford private healthcare. I have no issues with the clinicians treating me they are all excellent but I do think the system is under massive strain which doesn't help me at the moment.

    I have got everything crossed that my surgery will take place on Wednesday and if not then I will be rattling lots of cages

    Take care xx

  • I believe in the NHS but know it is cash strapped in many areas with specialist shortages. My sister lives in Rome, Italy - believe me you'd appreciate the UK NHS if you lived there.

  • Hi Smile. I fully believe in the NHS and would be devastated if it was to disappear. I just don't believe everyone could afford it and that really would be a backward step. I think it's a debate that could run and run. Kathy xx

  • I've just read your post and the fantastic supportive responses from other ladies have said it all so I will send you a virtual hug and lots of positive vibes that they sort it all out for you in the next few days. Love Jo 🌻🌼🌺🌸🌸🌹

  • Hi BeeWild .........Wishing you all the luck you deserve & be happy 😊 thinking of you Peggy 🌹🌹🌹

  • I fully expected nhs supporters to have their say which is fine, everyone is entitled to their opinion.

    but try to realise thst lots of people who cant 'afford ' private insurance can afford going on hols few times a year, can afford alcohol and smoke and many other things not needed for life and many dont work because safety net is toi comfortable...

    If every capable person has worked AND paid tax we may have had different nhs haha

    This is my opunion as I've seen almost no good from nhs.

  • The NHS is struggling because it is underfunded but it has given me superb treatment, including surgery. I have worked all my life and get a reasonable pension but my husband and I could not afford the medical insurance we used to have now we are pensioners. I do believe it is being starved of cash so it will fail. This is a highly political issue and worthy of a debate, but maybe elsewhere. Let's just support Bev for now.

  • Best of luck going forward. Here in Canada we have many of the same issues......but I am so glad we have the system we do.

  • Hi Bev

    I had my first surgery cancelled after several hours of waiting in the pre-surgery waiting area. I can relate to your experience as I hated that waiting period. That moment when I found that it was all for nothing and I'd have to do it all again was horrible. Although I remember the nurse standing next to me with a cup of tea and a slice of toast whilst the anaesthetist told me that my op had been cancelled. Did I want this tea and toast? "oh my word, yes please".

    I was then told that I was still very anaemic and could I hang around a bit longer to have an iron transfusion? I was given the option of coming back in the next day for the transfusion or having it there and then, but I decided that the day really couldn't get any worse and as long as I could eat and drink I'd hang around for it. I think I slept for the whole of the following day.

    So I was scheduled for one week later. But again I arrived at 7am and we got to 3pm with still no sign of an operation. I really did think I'd be going home again. So it was a huge surprise when the nurse came to collect me to walk me down to theatre. That second time around I was surprisingly calm. I remember having a nap whilst waiting to go into surgery, whereas first time around I kept fidgeting and bursting into tears.

    To have been cancelled a second time the next day just sounds horrible. It also sounds like it's some issue that we don't know about if your consultant has suggested you complain about the procedure.

    All I can say is that surgical teams do have to put safety first. If there is a reason that surgery can't go ahead then it's probably about safety and ensuring that our time in surgery will give us the best possible chance for treatment and recovery.

    Also I had the opportunity through my husband's work health insurance to go private. We had one private appt to suss it out where the doctor said don't bother, the NHS cancer treatment is far better in this country than going privately.

    I really hope that your surgery goes ahead this week. I was told that once you've been cancelled you do become a much higher priority to ensure that it doesn't happen again. As you've been cancelled twice I would hope that your op will be as close to guaranteed as you can get this week.

    I was also told that the wait of a few days wouldn't make a difference to the cancer growth and subsequent treatment. I would assume that it's similar for you. So although the additional waiting time is horrible, ultimately it won't affect your recovery.

    Best wishes and good luck


  • Hi Katfish I've had the call to tell me it will definitely be going ahead on Wednesday thank goodness!! I am the only one scheduled for theatre that day so hopefully there should be no more cancellations xx

    Yeah the waiting to go to theatre was a traumatic time with all sorts going through my head, but like you say I'd rather everything be in place and safe than take any risks. I'm just apprehensive cancellation does not happen again as emotionally I'm not sure I'll cope!

    Thank you for your good wishes xx

  • Is this in UK Bev? cos it sounds like the sort of thing that would happen on the NHS. I wondered because of the staying in hospital to improve your nutrition. The food in our hospital is hardly nutritious and when I asked to see one I was told even diabetics have trouble.

    Wish you all the best with the op and hope you're not disappointed this time. Is doesn't sound believable does it that they can do this to people?

    Best wishes, Zena x

  • Hi Zena yes it's in the Uk and yes you're right hospital food is totally yuk! I did see a dietician and have been prescribed food supplements 3 times a day in the form of drinks.

    Luckily I have fantastic family and friends who brought me in all kinds of edible supplies 😁

  • I'm glad to hear that. When I was in I wasn't allowed to eat or drink for five days. It was a really hot summer so they gave me ice cubes to suck on. I can't see the difference between ice cubes and water but there you go. I thought I'd lose weight but didn't, that was another disappointment.

    Best wishes with it all. x

  • I am late at wishing you well, Bev, I do hope you're situation improves. I will say that if you trust your surgeon stick with him, rather than go elsewhere and risk the unknown. He may also perform surgery privately of course, but private hospitals in the U.K. often don't have the resuscitation facilities a big NHS hospital has. The one thing I did prior to my surgery was check out the surgeon who was to do the debulking and I was very glad that I did.

    You can also check the anaesthetist on line but your surgeon wouldn't work with anyone who won't give the best chance of a full recovery for his patient.

    I've been a captive in two NHS hospitals and the food in each was very different - one good, one bad. Good food IS possible on a tight budget so if it's bad, tell them what's wrong.

    Good Luck Bev and lots of virtual hugs ❤️❤️❤️

  • Thank you Irisisme I've googled my surgeon and he's very eminent in OC research etc, he is also very human and has a lot of empathy and I can talk to him openly and even managed a few giggles despite both our devastation at the cancellations . I was looking at all options and going elsewhere for treatment was one of them but as I am due to go to surgery tomorrow now I have shelved that idea x

    I did speak to the staff about the food and they agreed it was awful and lots got wasted! I understand mass catering is difficult but I think some of the issues are it is no longer prepared in house and is brought in frozen. Maybe some hospitals still have their own kitchens and chefs which I'm sure would improve the quality.

    At least my family know to bring me nibbles in 😁

    Thank you for your support xx

  • Hi, hopefully you get yr op today, just want to wish you all the very best. I'll be thinking of you today. xx Kathy xx

  • Thank you Kathy xx i am dreading it but hopefully no hitches today xx

  • Take it from the biggest wimp you will ever meet, it's nowhere near as bad as you think it's going to be. I was home in 4 days. I have everything crossed that there are no delays or hitches today xx Do let us know how you get on xx Big Hug xxx Kathy

  • Wishing you all the best for your op today. I'm guessing you'll be worrying it will be cancelled again but I doubt nothing short of a major incident would allow you to be cancelled a third time. If you're first on the list you may well be going down now. All the best!

  • 🤞Fingers crossed for you today that all goes ahead without further delay. Very best wishes 🌻🌸🌺🌼🌹

  • Thank you xx I'm so grateful for everyone's support xx

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