How to get motivated

Hi @Patmart,

I may just be a teeny weeny bit controlling about my own life but it served me well when I was first diagnosed as incurable.  I found out on 10th December but apart from my wife and my line manager, both of whom i asked to be discrete about it, but I did not tell anyone else until the New Year, I think it was about the 3rd of January.

I wanted to tell people, which not everyone does, but this meant that by the time I let my immediate family and then my friends and colleagues know about it I knew how I wanted them to act about me.

I advised everyone I did not want to hear stories of miracle cures whether it be foodstuffs, religion or the power of positive thought.  I did not want to hear of others who had beaten their prognosis, especially if it was a cancer that did not relate to mine.  I was happy to talk about my cancer but that I was not just a cancer patient and after getting updated could we talk about everyday things and other people and not just me.

It has worked out fairly well for me.  A couple of people did not know what to say so ignored my illness and carried on as before but they avoided me more and left the room if the conversation turned to talking about things like death.  I had to remind a few people occasionally of what I wanted but because I had already told them why it was fairly straightforward.  Occasionally people will come out with the sort of platitude that you mention about knowing you will beat this.  I am afraid that I am unlikely to let this go now and advise them that whilst I appreciate that they are trying to make me feel better that comments like this actually frustrate me and do the opposite.  If they want to be supportive then saying that they don't know what to say is fine, I don't always know what to say myself and even on this site I often consider my response for a day or so before posting.

In my case I found that having the discussion meant that I now have an open and honest relationship with the people who are important to me.  If they want to be helpful, then inadvertently saying things that wind me up is not helpful similarly not feeling able to ask questions can leave me without anyone to talk to about my health and more importantly my feelings and emotions.  Sometimes it is easier to respond to a question than to build up the courage to make the admission that I am feeling fragile.

.... And of course you are both quite correct, their is always room for comfort food.  

All the best,

Gragon x

Dear Patmart

It's alright to feel this way, it's a big shock and how do we cope in such circumstances? No one is positive or motivated all the time, even in full health. Little steps are perhaps what is required. Try not to lose interest in things you normally love. Reading all the responses here have actually reminded me what can help when you find yourself floundering.

Take care, xx

Gragon I can understand people who don't know how to react to my diagnosis & therefore come out with platitudes or stories of people who have "beaten" cancer (as if it was a personal achievement). They're trying to offer comfort and encouragement. What I cannot stand are those who insistently try to push me towards some miracle cure, and won't let up. (Manuka honey is the latest one.) This type almost suggest that I will be to blame when I die, because I didn't buy their cure. I'm sure it doesn't work the other way round, though. They wont lose faith in the cure if a patient takes it and still dies!

Hi ,

I know what you mean and it is difficult to deal with.  I am lucky in that no one I actually care about has tried to do this with me.  I have developed the ability to be quite abrupt with people who keep trying to tell about things like this.  I call it abrupt but I suspect they might call it rude.  I don't worry too much if they get upset and if they choose not to talk to me again then at least I don't have to listen to their theories anymore.

With people I care about I have at various times agreed with them not to discuss certain topics, often political, sometimes about relationships and sometimes about beliefs, because we both end up getting wound up an upset.  I'm sure that if it was needed then I could come to a similar agreement with them about my healthcare.

Just out of curiosity I googled the death rate from cancer per head of population and found that New Zealand, where Manuka honey comes from, is second on the list (behind Australia).  They are obviously exporting too much of their honey.

All the best,

Gragon

Hi Gragon

I feel very, very wrong in having laughed myself silly at the irony of the Manuka thing...

Please forgive me everyone as I would not wish this horrible thing on anyone.

Maybe a little good news in a sea of adversity...

I had my six mth ct last Monday (21st) and was up for MRI on the 28th but found to my eternal shame that I am chronically claustrophobic!!!!! 

So, speaking to my onc on Tues, he told me that quite a few people react in the same way and then organised a brain ct for a couple of weeks time - we'll see...

He then told me that ALL of my tumours had reduced again (from 3 mth ct reduction of 50% from discovery - lung primary @ 9cm) and that they were, and I quote, "barely measurable" OMG & Holy Roly Poly!!!!!

I have just had my 9th Atezo infusion this lunchtime and afterwards my onc took me thru the results and what they mean - so whilst the final outcome remains the same, the time it takes to get there "may" be a little longer... As an aside he also told me that it was quite a bit easier to predict timescales when the patient is a lot closer to the end...

My immediate thought was "No Sh*t Sherlock!!!" (hahhhahhaha)

So this has perked up my spirits somewhat after having worked myself into a tizzzz for the last couple of weeks anticipating scans & results - a salutary lesson in understanding that which is within your control and that which is not...

Stay Strong

Simon T

Brilliant news SiT I am so delighted for you. I hope B&J featured in your celebration - don’t forget they are not just there for the bad times. Just like us I suppose!!!

God that sounds so twee - sorry.

Thx Patmart - much appreciated

I'll be having mine with Maltesers!!!!! Hahahaha...

Big Hugs

SiT

Great news, . Ice cream & Maltesers are definitely called for.

Hi AP7

You are too kind - B&J's with a side order of Maltesers have already been consumed in considerable quantities!!!!

Best

SiT