Managing my emotions

Hi M first a ((hug))

You need to take a breath, you have no idea what you may be dealing with so stop over thinking this and get yourself ready for your appointment...... have you started the homework I gave you?...... your note book with all your questions as you need to be ready.

In all the years and all the people I have talked with I have never heard the word terminal used..... yes, some types of Lymphoma like my one is incurable but treatable. And even after being told back in 1999 I would never see remission please forward 17 years to Sep 2016 I was told I was in remission...... so where there looks like there is no hope there is lots just sitting there for you.

Could I suggest you give our helpline a call tonight - it’s open until 8pm on 0808 808 00 00 as there are some great people waiting to talk with you.

Hi M

it is tough so early after being told but it does become manageable once you have a plan in place. The scan is to determine a baseline and then the treatment- I had RCHOP for DLBCL and very quickly the lumps went and went into remission as most cases do. Unfortunately my has proved a little stubborn and this year I had an auto stem cell transplant as the next line of attack. 

Mine was in a number of places including lungs but the treatment didn’t change and I understand staging is not the same as with solid tumours but sure others can clarify that.

Deciding who to tell or not is tough - I didn’t tell my son the full facts as he had exams but he obviously now knows.

There will be plenty of treatment options open to you and with lymphomas there are good results and I still take comfort that even if first and second line treatments fail there are other options. I know it is tough but try not to be scared as I am sure when you know more and start treatment you will feel a lot more secure in the future.  I say tough as the battle between the ears can be hard but there are always people here to offer sound advice and help.

Do take care and let us all know how you get on when you learn the treatment plan.

Mike

Mike, thank you again for your response.  You are so wise.  I realised that I had 'lost the plot', only momentarily, rang my friend Jean who is my rock and feel better.   To reassure you, most of the day I was upbeat and positive.   I am sleeping well and entertaining myself so don't want you to think that I'm anything otherwise. 

I have written down all the questions you have given me and prefer paper than a notebook, A4, dated and with the notes from the meeting underneath but the questions have given me a structure.  I will record the conversations too as I'm sure I'll miss most of the information given to me.

I rang the helpline yesterday and they were lovely so I'm sure I'll be accessing this again soon.

Thank you once again, Mike and I am indebted to you.  I hope to one day give to others as you have given to me.

I will keep a diary and record everything.

Thank you so much for this.  Thought I had replied to you but the sentiment to Whatcanyoudo is the same for you too.

Yes, I'm okay now.  Much calmer.