Hi ,I have just been revered for a urgent endoscopy,have been under gp care since December with on going stomach problems,started with abdomen pain also three weeks ago ,over the last two months have now lost over a stone in weight,feeling poorly very scared and anxious can't sleep ,I no this is serious and feel very alone,my body is slowly disappearing in front of me ,when I actually get some treatment I feel it will be to late,so so scared and feeling so alone ,I don't no where to turn .
Hi again I do hope you got some sleep.
I can remember back to when I was in the same position..... way back in 1999 I was diagnosed with an incurable type of Lymphoma, I was also told that I would never see remission and it would get me some dat some year....... well I am still around and can talk to you
You also need to hear that yes, my condition became very aggressive and yes, did it’s best to get me but I now have been in remission for over Sep 2016..... you get the smile and remember I was told I would never see remission.
Until you have all the facts you have no idea what this is but you can start getting ready so you understand everything that is said and that you can ask clear questions and look for clear answers.
So could I recommend that you prepare for your next appointment with his team and I recommend that you get a note book.
The note book is the place where you record EVERY question and thought that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out.
A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’ you go through each question one by one, making sure you write down all the answers you get.
If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand'
You don't want to be going home after an appointment saying 'I wish we has asked ........'
The note book also helps your sleep!! ...... As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot.
I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear.
I would also recommend that you go have a cup of coffee/tea straight after the appointment and unpack what had been said so that a clear understanding is made and with this you can plan to move forward.
The note book should have questions like:
What type of condition has been diagnosed? - exact name and grade etc.
What are the proposed treatments Chemo, Radiotherapy......?
What are the names of the Chemo Regime?
How many cycles of Chemo and how long will each cycle last?
Does this require inpatient time (over night)
How many sessions of Radiotherapy and how long will all the treatments take?
Remember to express any reservations about treatments........ an example - I have Thoratic & Lumber Spondylosis - Spinal Osteoarthritis so I found out in the early stages of my radiotherapy that I had to take some pain killers an hour before I had my treatments as I found it hard and painful to lay on the radiotherapy table for long periods of time.
((hugs))
