Coping with the wait!

Hi, just wondering how anyone else has been able to cope with waiting for test results.  Have been told I have cancer but waiting for biopsy results to determine whether it's lymphoma and if so what type.  The waiting is so frustrating and upsetting and I feel like I'm on an emotional rollercoaster.  I try to keep myself busy and to avoid researching - although that's quite difficult at times.  Sometimes it's hard to stop my mind wandering to worse case scenario.  I'm sure that there are lots of you in the same position and wondered if you chould share how you are dealing withi it, or just confirm that what I'm going through is perfectly normal :)

  • It's encouraging that the MRI/CT scan; doesn't show any spread of the colorectal cancer  and I am very sorry that you have it at all. 

    It's not natural to feel upbeat at a time like this but it helps that you have a PET scan next week and an  appointment with the oncologist the week after booked. Also a treatment plan (chemo and radiotherapy) outline. Perhaps surgery later?

    The main thing is that we have a fantastic NHS who will do their best to help you get through this. I'm with xxxx who are wonderful and am so thankful for them.

    Wishing you well and praying that everything works out for you.

  • Thanks, you are right, probably just being impatient, and finding it hard not to keep reading about things on the internet!
    yes, we have a fantastic NHS, I have worked in the NHs for nearly 40yrs so now will be on the receiving end of care which is one aspect that I trust without question. 
    Have you had chemo/radiothery? Any advise as to what to expect or prepare for would be greatly appreciated.

    Thanks again. X

  • Actually saw the lung consultant today to follow up recent lung and thyroid biopsies.

    Expect to have lung surgery (removal of one lobe). Am awaiting an appointment with surgeon. Chemotherapy and radiotherapy not needed at the moment.

    Expect to see an Ear, nose and throat consultant to discuss thyroid biopsy result and next steps.

    Simple answer to you question is, no, haven't had chemotherapy or radiotherapy.

    But lots of people on this chat have. Different people have different experiences it seems.

    Am aware that chemotherapy and radiotherapy are sometimes given prior to surgery to reduce the size of the growth.

    Perhaps the nurses could answer you better than me who has no personal experience of chemotherapy or radiotherapy?

    Google has it's uses including making you more anxious. It's also very informative if used discerningly.

    Wishing you well x

  • Hi spring2420 as sharza has said there is some encouraging news there x I had my pet scan on Saturday and results were with consultant this morning x I have my first chemotherapy round tomorrow so will be able to let you know how it goes.

    sending love and positivity to all xx 

  • Hi sharza hope you don't have to wait too long to see your ENT specialist and that things can progress for you x sending lots of love x

  • Hope it all goes well tomorrow x

  • Ah, thank you for that.

    Expect to see ENT specialist in the next couple of weeks.

    They are concentrating on dealing with the lung, so, even if I need an operation on the thyroid it's likely to take place after the lung surgery.

    You started this thread and I am wondering how you are feeling now that treatment is starting. I expect you feel less anxious?

  • Yes it's seems like it's been such a long time. 26th Jan I was first told it was probably cancer and referred and today I finally got the definitive diagnosis.. I have non hodgkin lymphoma b cell high grade aggressive cancer.  The primary is on my tongue with secondary on both sides of my neck and possibly in my groin also.  Appointment with consultant this morning and an awful lot of information to take on board and then was quite shocked when they said treatment was scheduled for tomorrow.  As this is the first round there is now a certain level of different anxiety of the unknown but it is a bit more settling to have the diagnosis and to know what the next steps look like.  Fortunately I don't need surgery but am scheduled for 6 rounds of chemo with each being a 3 week cycle.  Not looking forward to the side effects but small price to pay to be able to tell my story at the end of it.  

  • You're right - it does help to have a diagnosis and treatment plan. You know where you are and where you are going which is settling.

    I hope you don't find the treatment too unpleasant and get through it with good results. Amazing that they are able to start treatment tomorrow - no messing about then. Must've taken you aback when it was first mentioned.

    You mentioned "telling your story". I like to write (eg a journal) so you've given me an idea to write mine in it's own journal. Perhaps starting with "once upon a time, over two years ago......."

  • Hi Sharza, Encouraging that your hospital team are moving fast, hope you don’t have to wait too long to see ENT. Wishing u all the best, Thanks.