Am I expecting/hoping for too much.?

Following a referall by my GP to the hospital they arranged a full torso CT scan and attempted (but abandoned) EBUS bronchoscopy.

After a fortnight of hearing nothing I visited my GP as he had requested an ultrasound on the lymph nodes in my neck and the doctor had offered to do a biopsy on them and promised to get them to my GP within the week.

My GP had the job of telling me that I have cancer in both lungs, lymph nodes of the neck and chest and possibly my uterus. He was not happy that the hospital had not been in touch with me with either a treatment plan (if possible) or at least some feedback. 

He has referred me to Gyneo for further investigation but I have still to hear anything at all from the hospital.

 Am I being unrealistic in expecting some kind of response from the hospital?.

I am someone who needs to know all the facts ....good, bad or downright ugly and then to prepare accordingly. 

Thankfully I have a very supportive family and friends but hate having to respond to their question "what are they going to do?"  with a vague "I don't know"

Is this the normal timescale for dealing with what appears to be a fairly aggressive cancer where I can see and feel new lymph glands popping up on my neck on a daily basis.

  • Hey Nicky

     

    Remember that what they're giving you here is a best guess, the eventual outcome is probably going to be the same but there are considerable variations in these estimates particularly if someone responds well to chemo - 6 months with chemo could easilly turn out to be a year, 18 months.

    With the cancer my wife had we knew the expectation was 2 years - she made 3, her mother had had the same condition and made 4 and it's not unheard of for people to make 5 (although the drop off after that is pretty poor)

    If you start clock-watching now it'll just eat you up, if you waste time now moping about it's time you'll never get back - this time now is very very precious use it wisely.

    I've said it before and I know it's little consolation but there are people out there who are perfectly fine today but will not be coming home tomorrow, they will have strokes or heartattacks and will never get a chance to say goodbye - you've been given that priviledge and yes, trust me, I know what the price tag on that priviledge is

     

     

  • Wise words Graham. 

    I totally agree with you that to be given the chance to set your affairs right, to say the things you need to say and to do what brings joy to you and your nearest and dearest is priceless and although I don't know how long I'll be around I am grateful that I will have the chance to do all those things and to hopefully make my passing easier for my family and friends.