When You Are Misinformed About Options

Hi you fantastic people. My wife Luk4ward is currently having a tough time with a suspected bowel blockage in hospital. I thought I would post this because I was told today that surgery at the moment is not an option and the oncologist has said chemotherapy is no longer an option. So I was told that all doors are closed, I am reeling from it. But what is distressing is that another surgeon explained it better. The oncologist said that they need to know if my wife's bowel is working and if it is then chemotherapy is an option, so a door opens. When my wife has a bowel incident she does not eat for the first few days and slowly recovers her appetite and I am currently encouraging her to eat. We both feel that it is working so the next couple of days will tell. I find these miscommunications are thriving within the MDT team, no wonder sometimes I am reduced to a wreck. 

21 Replies

  • This is dreadful. I have learned from experience not to listen to anyone except the top guys in my case if it's someone more junior then I have learnt the hard way that they can be wrong and mis interpret the communication. It's often led to me being very upset with things that have been said. 

    Wishing you and your wife all the best 


  • I have always asked anyone and everyone whom may be involved in my wife's situation at that time to gather information so I can ultimately ask the right questions, it can be terribly difficult, thanks for your reply.

    Wishing you strength


  • Good advice. Same story here. Good luck.

  • Thanks

  • I agree with you, one reg told me that OC was like spaghetti it sticks to everything.  That wasnt helpful, then he rang me at home saying my blood calcium levels were too high.  It seems that I have this condition but its nothing to do with Cancer but not allowed take any vitamins with calcium or calcium  supplements

  • I'm sorry you're both going through such a tough time :(

    Miscommunications certainly don't help the situation. I'd have a word with the person in charge of the department, and explain what happened.

    Some doctors just need a little bit of extra training in how to communicate effectively, especially in a situation where emotions are already running so high.

    Do you have a main doctor you can filter information through?

    My main contact at the hospital is the oncology surgeon who did my surgery. I trust him implicitly, and he explains things really well.

    During chemo, I saw a different doctor each round and ended up getting contradicting information. Then when I ended up in the emergency department I got different information again.

    I ended up just calling my main doctor, and asking him what information he thought was right for me, then following what he had to say.

    The hospital social worker was also really helpful in managing the fall out from all of the contradictory information and all the stress it caused.

    I hope your wife continues to improve, and I hope that your nerves settle :)

    (Honestly, I don't know how partners manage... You guys are heroes.)

  • It sounds familiar indego, I have found the clinical nurse attached to the MDT great to talk to and yes separate the contradictions. I found myself ringing family members saying what I was told by the first doctor because I was terrified because as much as you wish to deal with the ups and downs yourself there comes to a time you have to tell the nearest and dearest. If I had waited two hours more maybe I would not have had to make them life changing calls. A special mention for the nurses and sisters on the wards as they can be consistently brilliant most of the time and I may have to modify my approach to gathering information.

    Wishing you strength and thanks


  • Dear William

    So sorry to hear of your wife's problems and the difficulties you are having.  

    My experience may or may not be relevant as obviously your wife's condition may be totally different to mine but my hospital managed to get my symptoms under control, 

    I was in a similar situation to your wife two weeks ago suffering from a stomach/bowel blockage and was very worried as I could not keep anything down - not even sips of water. I felt so ill. I was admitted to hospital on the Monday and stayed in for the week - given strong pain relief, fluids as I was very dehydrated, steroids to reduce any inflammation in my abdomen, anti-sickness and acid reflux treatment.   

    I was told that as my stomach//bowel was blocked that I may not be able to absorb oral drugs so was given everything by IV or by patch.

    I was told surgery was not a option but they referred me to the gastroentorology team to see if they could put a stent in (this is done with a camera under sedation). Might this be a possibility for your wife?

    In my case when the gastro team went in with a camera I did not need the stent as there now was a gap through - albeit small - which meant i can now manage a very soft, low-fibre - mainly consisting of liquid Fortisip nutrition drinks - diet.

    I am going back to the hospital to start an oral chemotherapy, Cyclophosphamide, on Thursday. You will see from my profile I have exhausted most drugs and trial drugs but I am grateful they are offering me something else.

    Best wishes to you and your wife


  • Hi Sharon, that seems very like my wife's situation currently the only difference is it is disease activity exterior to the bowel that is causing the bowl to slow/stop. Is that your situation?  We are seeing the oncologist tomorrow to look at options, initially we have been told by a junior doctor there is non. I find that hard to accept. Oral chemo could be the way forward and I could ask if gastro can get involved. Thank you for the reply and best of look with oral chemo.

  • Hello, I too had a blocked bowel, caused by the 2nd op. to remove a 2nd tumour.  I had 3 emergency admissions before they agreed to operate(sometimes it will clear itself).  I asked to leave hospital on the 2nd occasion because of the attitude of the duty surgeon (a plastic surgeon!) and my GP later told me to keep trying laxatives which worked for another month before the 3rd blockage led to a resection of the small bowel.

    Now I get occasional partial blockages, nothing like as painful, but a young bowel surgeon told me not eat for a day when they occur.  I find the opposite works,ie bran in cereal/porridge and Lactulose or similar.It seems better to eat a small amount with plenty of roughage or laxative to keep the bowel moving.  A friend (retired GP) told me that pure orange juice (squeezed yourself) is a good natural laxative.

    Having known the agony of a blocked bowel,  I do wish your wife good luck.

  • Hi, My wife has had two partial blockages a total obstruction last year and that ended in an emergency op. She had a good nine months and than two partials end of March 2016 and currently. Thank you so much.

  • Do you have access to a university medical center? I live in the U.S., and when someone has a crazy situation like this going on, the whole team gets together to decide on an approach. I can only imagine how difficult this is for both of you. I wish I could say something more helpful. 

  • University medical centre I think there is a couple nearby. I will ask my oncologist tomorrow, Thanks. I feel America is more pioneering. Thanks

  • I have no sage advice to give but want to let you know I'm thinking of you both and wishing you strength and better health soon. Try Ruth the Ovacome nurse after the bank holiday to get clear guidance of how to forge ahead.  

    Sandra x

  • A great idea, she has already advised me how to go about IP therapy. Thanks.

  • Fragmented communications seem to be rife. I had a bowel blockage when I had a recurrence of OC. It seemed likely that the blockage was the disease progressing. I had a scan, but the scan results weren't available before i saw my stand-in oncologist. She arrived at the appointment without notes, and I proceeded to tell her that my bowels were blocked (I was lucky to have a stent successfully fitted) and my doctors on the bowel ward had presumed it to be the disease progressing. On the strength  of what I told her, i was given a terminal diagnosis. When I eventually saw the bowel specialist many months later, I was asked why i was there as the blockage had been benign. I had had a recurrence of OC, but it had not invaded the bowel and it seems  - happily for me! that the diagnosis was wrong and I was still in with a fighting chance. My notes have been more like chinese whispers. Your wife is right to listen to her body and eat when she can, get some strength back and keep asking questions! Good luck and best wishes to you both - and don't give up! Joan xx

  • The replies from you all have been absolutely marvellous, so many possibilities, I am crying now. This beats doing the research on my own because it shows how much I do not know. I hope to be in the position to be on the forum with my lovely wife Luk4ward to share our experiences and hopefully you lovely people can learn from us as I have learnt from you. I will never be able to show totally how grateful I am but I hope you can pick up on it. My wife's bowel showed activity yesterday evening and began working, I had won the lottery like I have so many times before during my wife's cancer journey. Bless you all and thanks. I am armed with irrefutable evidence that there are always options when I see my wife's oncologist tomorrow xx William 

  • I agree ultimately you need the information straight from the horses mouth, sometimes the young doctors do not know a lot because they havent read notes on our files etc.   I hope the bowel clears itself and then make sure your wife has prunes in juice daily to keep things moving.  

  • That the juniors have not read the case notes does explain a lot of the miscommunication and sheer heartbreak we all must feel at some point or another. I will discuss the prune juice idea with the pain management nurse or the dietician. Thanks

  • Hi Edward the story plot seems familiar to me. Post debulking and first chemo my wife had to be hospitalised for a bowel blockage. The onco surgeon who had operated on her was on leave and not in station, so, she was seen by a gastro surgeon. Xrays indicated that there is a growth inside of the intestine and hence its not allowing the bowel to function. Surgical option only way out but its a life and death surgery because she had just then undergone abdominal surgery for cyto reduction I was shattered as I knew that she will not be able to take it. However, our oncologist was very firm that its only an inflammation and that strongest antibiotics is the option. Fortunately he was right. I came to know during this trying period that it could be inflammation or growth or a part of the disease itself. So, do check all parameters before putting her under a knife. 


  • I have a colostomy due to OC and have frequently had bowel blockages which have involved hospitalisation and have now been told that I have a very narrow area of bowel called stenosis and have cut even more things out of my diet.I had always eaten

    a high fibre diet but now follow a low residue diet and problems are easing.I t goes against what I have eaten all my life but is reccommended for people like me .Look it up on line and adapt to suit you,it is very beige!If I have fruit or veg now it is a very small portion.for example last night I had one piece of broccoli,no stem and two strawberries with Greek yoghurt.Main courses are normally fish,pasta or rice and snacks of plain biscuits or cake with no bits in.

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