Hi Lizzies,

Sorry I missed your earlier post, I was distracted by the New Year celebrations.

Have you had chance to read Ange's post? She starts her fourth round of chemo tomorrow after being in a similar position to you when she was first diagnosed.

This is the one tme in our lives when worrying really is justified and is expected. Not worrying is abnormal and can cause all sorts of confusion! 

If you can, take someone with you to act as an extra pair of ears, write down the questions you'd like answering before the meeting and, just as importantly, write down the answers as they are given to you. This may seem rude but the doctors will be happy for you to do this as research shows that patients who are stressed on average remember only 40% of what they are told. 

So many people (even clinicians) often conflate palliative care with end of life care. Palliative care just means treatment to alleviate the symptoms, rather than treatment to deliver a cure (curative care). My surgeon stupidly told me "there's nothing more we can do" when what he really meant was "there's nothing more me and my surgical team can do, so we're handing you over to the oncology consultant and his/her team. Another source of confusion is the word "terminal" there's no strict definition of this but in the UK this usually means that the care team's best estimate is that death will happen within six weeks or so - never an exact science. People often conflate Stage 4 cancer with terminal cancer. All stage 4 means is that it has spread to distant parts of the patient's body - in my case from the gullet to distant lymph nodes, to my liver and to my lungs. 40 years ago not many people survived stage 4 cancer and treatments were nowhere near as effective. Our knowledge of this is often so out of date - sadly so is much of the information available via Google! 

I hope your consultation goes well and that you are able to start treatment soon. Don't ever forget that the treatment plan is a set of options which you need to decide from. No-one can force you to undergo any treatment that you don't consent to, all they can do is give you advice and information to help you make a well-informed choice. Ask them any questions you want to ask - they genuinely will welcome this.

Good luck and Happy New Year.

Dave

Hi Dave

Thanks for advice, have all sorts of questions that I am too scared to think about.  Couple of family members accompanying me to team meeting.  I have asked them to write questions and answers for me.  Hubby and I just not coping, stress levels through the roof.   

We feel as though we are on a  mad roller coaster ride and it is getting faster and faster and more out of our control. 

I want to cling to anything positive because I know positivety is important.  It is difficult though. 

Wish me luck.

Lizzies