Waiting game

  • 17 replies
  • 52 subscribers
  • 552 views

My Dad was rushed to A+E Sunday just gone, he had stomach pains. We waited nine hours to be seen, the dr instantly looked concerned for my father’s health. He had a scan and was left in a bed in the hallway for an additional eight hours. Once he arrived on his ward he had an endoscopy, we didn’t get the results until the next day but as an ex health care worker I could tell on the nurses faces something was terribly wrong. The next day Dads doctor came to See him and confirmed the worst. They have found a large tumour at the bottom of his oesophagus, and lumps in his upper oesophagus. Additional ct scans confirmed no spread in the lower sections of his abdomen and pelvis but they have done another scan today for the upper half of his body. We have been told we will know nothing now until biopsy results have been scrutinised. My father has a very pale somewhat yellowing of the skin and my anxiety and fear is it has spread…. I can’t deal with the huge amount of grief I’m feeling. It’s crippling. He lives alone and doesn’t have any friends he just has his kids and grandson. I’m 34 years old my son is 10 I need my Dad I don’t want him to die. The nurses seem like they know more than they are letting on but then I don’t know if that’s just my emotions…it’s just torture. We have been told it will take 6-10 days before we will know anything else and just don’t know how I will keep the strength to keep positive and more importantly be my dads support. The DR told him it’s very treatable and this has given him positivity but I’m scared they are just saying that to make him feel better. There’s so many unknowns and it’s hard…

  • Hi I’m really sorry to hear about your dad, and I mean it when I say I hope he recovers. 

    The only thing you can do for your dad until you know what your dealing with is be supportive and there for him. 

    As you know more, the better you can deal with it. 

    The trouble with any illness there can be so many unknowns and until these questions can be asked try not to think the worst. 
    Remember start writing down the questions you want to know because believe me the first appointment will arrive and your head will empty. 

    And good luck to you all.  

  • Thank you Clive, I think that’s the problem. We are just in limbo mode, we are floating around with just thoughts and fear. I’m trying to keep him laughing and I don’t get upset in front of him. Regardless of what’s going on I’m just trying to be up beat at least in front of him. 

    thank you for your kind words! I have no doubt I’ll be putting further updates here. 

  • I was lucky in the respect of limbo, from the day I had my endoscopy I was told it was cancer, I then very quickly had appointment after appointment so didn’t really get chance to take in what was going on. I also had a great team that helped me though. 

    Being on here I have noticed lots of people waiting for their next appointment not knowing. 

    It’s terrible leaving someone like that although I do get why, the last thing you want to do is jump the gun and get it wrong, and don’t get me wrong there was pauses between my treatments as I took one step to the next, but it happened so fast. March I was diagnosed and by November all done with just follow up appointments. 

    And please keep us updated even if it’s just to let off steam I’m sure someone from this great community will be here to help. 

  • Hi Aeron.  So sorry to the news about your dad. Clive has given you some very wise words. You are all at the stage including the medical team when you are short of information. Only the series of scans and biopsies will show the true picture and I am pretty sure you will hear the word PET scan soon and this is the normally the next major step toward providing information to the team. The route from there on in can be varied and you will be inundated with information. Once you understand the route your dad is on you can identify stories on this site of people taking  a similar route and seek further support. We are all here to help but your dad's diagnosis is still at too early a stage to point you in the best direction. My best wishes to all your family and do come back to us when you have further news. 

  • Thank you for the advice, I was talking to my dad about it today. We are going to enjoy our time (keeping busy) until we have our next appointment. Thanks for your kind words genuinely it’s good to hear from the perspective of someone who has been on both sides of the story! I will keep

    you all updated! Fingers crossed.

  • Thank you! Fingers crossed! We are going to Occupy ourselves with things to do and just try and enjoy the small things until we know what’s going on. 

    thank you for your kind words.

  • If your dad is at a major hospital then he will have a nurse practioner Upper Gi contact. This is a senior nurse who liases direct with the patient from diagnosis onward. I can only tell you that mine is fantastic. I suggest you find out if this is the arrangement at his hospital.

  • How quickly do you get that appointment, I can’t remember my first one. 

  • I think mine was in contact with me just a couple of days after I had the initial endoscopy/diagnosis. She has been available to me at the end of the phone or email  throughout my time with the hospital since February 2023. No words to describe just how good she is..

  • Mine was too, grossly underrated for what she did. She even did my mom’s referral to palliative care. Remained professional throughout and only said she knew when I mentioned it to her.