The longest wait

Hi everyone,

I've had a hell of an 18 months. So much has happened I'd be here all night writing. So very briefly, it started with a full hysterectomy, a 2nd operation 4 weeks later due to unexplained severe pain not related to surgery, 4 weeks of gastric covid 3 days after leaving hospital, a diagnosis of a rare autoimmune liver disease, a car accident, deaths of relatives and a friend and fast forward to now where I've been awaiting results from a lymph node biopsy for the past 3 weeks after 18 months of a nightmare getting here. Several lymph nodes have been found to be enlarged over the months, the biggest one at the base of my oesophagus now grown to 2.5cm x 1.5cm. One more on my pancreas and another near my liver. PET scan lit them all up plus more found in my armpit. So had to have a biopsy via EUS, heard nothing since. Saw my haematologist last week and he said he was going to chase the results.

I had a call last Tuesday from my gastro consultant's secretary saying my consultant had wanted me to be booked on to her clinic for the next day but that the clinic had now had to be cancelled so it would be this Wednesday instead. She said nothing more so I assume it's for my results. I also have an appointment with a haematology consultant on Friday. Not sure if one is a follow up of another or just 2 different appointments because no one is communicating.

I've not been told to take my husband with me, so I'm hoping this is good news? But then equally she has done all other follow ups via telephone whereas this is face to face.

I'm starting to go mad, the waiting is just horrendous! Is bad news given to someone on their own? Would they have told me to take someone? 

  •  

    Hi Exhausted-fairy,

    A very warm welcome to our forum. 

    I am so sorry to hear of all that you have been through. Waiting for results is one of the hardest parts of our cancer journey. Unfortunately, both good and bad news can be given to you when you are on your own. It might be worth phoning to ask if you can take someone with you. You are usually allowed to take someone with you when you are going for results.

    I sincerely hope that it turns out to be good news. Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

     

  • Hi Jolamine 

    Thank you for the warm welcome. It's been lots of periods of long waits but because I think this is for my results, this one is hard! My confirmation letter just says it's a follow up appointment but I guess they're not going to word it any differently so nothing is given away. And I don't know why I keep getting so worked up because if it is Cancer, there's nothing I can do to change that. I think it's just that this day is finally here after so many months. I just hope I actually do get an answer and it wasn't inconclusive.

    Thank you for replying, it's a lonely place to be without others that understand xx

  •  

    Hi Exhausted-fairy,

    This can indeed be a lonely place when those around you don't appreciate what you are going through. I do hope that you actually get an answer this time and are not left waiting for more tests. Everybody worries about how they'll cope if it is cancer. The truth of the matter is that we just have to. I have had 2 separate diagnoses of breast cancer in the past 12 years and am proof that we can get through it.

    Keeping my fingers crossed for you.

    Kind regards,

    Jolamine xx

     

  • Gosh, that must have been hard for you. Are you in remission now? I'm sorry you've had to deal with it twice. Just once is hard, but being told again must be shattering xx

    Butterflies are kicking in now, I feel sick. I really hope I don't get told I need another biopsy, they've been trying to avoid surgery as it would need to be open and not keyhole. I just want this all over and just know the answer and have a plan.

  •  

    Hi Exhausted-fairy,

    It wasn't easy. The second bout came along just a year after the first, but I am thankfully now in remission.

    You are bound to be particularly edgy just now, but you are almost there. I can understand that they wouldn't want to do open surgery. I had to have this in 1997 when I had my gallbladder out. It was a very much more difficult operation than keyhole and recuperation took considerably. Mind you, I complicated things further when I stopped breathing on the operating table. I had to wait a further 2 weeks on IV antibiotics, before they operated again.

    Here's hoping that you have some answers by this time tomorrow. After waiting all this time, I expect that it'll be a relief to know what is going on, irrespective of the diagnosis.

    I shall be thinking of you.

    Jolamine xx

  • Thank you. It's just gone 4am and I've  got up for a cup of tea as I've been wide awake for ages and can't sleep. Just another 8 hours to go.......

  •  

    Hi Exhausted-fairy,

    Unfortunately, a sleepless night before you get your results is not uncommon. I hope that by now your agonising is over and that you finally have some information.

    Thinking of you.

    Jolamine xx

  • I got the all clear! Thank you so much for replying to me Jolamine. That has been the worst 6 months of my life. Now on to Rheumatology for the next lot of tests but for now I'm over the moon :happy:

  •  

    Hi Exhausted-fairy,

    I am so delighted to hear that you got the all clear. Although you still have to look for more answers, I am sure that ruling cancer out must be a great relief for you. I hope that rheumatology can give you  a proper diagnosis soon.

    Kind regards,

    Jolamene xx