How bad is it?

I bet most of you out there have googled pancreatic cancer more than I have.  When I first got the diagnosis I avoided googling it because I felt I already had a pretty good idea of how bad it was.  Most people don’t survive very long and it’s very painful.  Those are the two facts that I had absorbed at some point previously.  I dreaded knowing any more than that and anyway, people are individuals and everyone reacts differently to chemo, etc. I probably should have been more brave, but I just couldn’t face it.  Then things got busy and complicated during treatments so I put it off.  Now I’m on a lot of drugs to control the pain, which they do to a large extent, so I can contemplate whether to start weaning myself off the dilaudid.  How much pain are these drugs masking? I don’t really know.  

After I published my last post I had a lot of sympathy from people because I talked about my pain.  It’s very nice to have sympathy, (thank you!) but it led me to think about how hard it is to evaluate pain or compare different people’s pain.  The doctors use the “pick a number out of ten” method to try to understand how bad one’s pain is, but even that is not terribly helpful I don’t think.  For instance, I never evaluate my pain worse than 7/10.  I always think there must be way worse than whatever it is I’m experiencing, so I leave some leeway.  Lately, I would say my pain hasn’t gone above a 3/10, so I’m doing well. Another person might have a different pain tolerance and would evaluate the same pain as either higher or lower, but who can say what that actually feels like?  We can’t be in anybody else’s body to really know.  I feel like I’m a big baby when it comes to pain, especially considering Dave’s recent trouble with the Cluster Headaches, which are supposed to be the worst pain you can feel, and yet he just went to bed and moaned a bit.  

I guess what I’m saying is that I don’t have a monopoly on pain.  There are so many people suffering from some sort of pain, often chronic, and often they keep their suffering to themselves.  I get that, but I’m practically incapable of keeping it to myself.  It took me a long time –and I’m still working on it– to get a grip on the things that make me feel better when I’m in pain and to be proactive instead of curling up in a ball and crying. I haven’t had that much experience with bad pain— aside from childbirth, and I knew that it would be over at some point, as bad as it was.  The scariest part about most pain is not knowing when or if it will subside.  Dave claimed that what made his headaches bearable is that he knew they would stop at a certain time, because that was the pattern.  I can understand that, but it doesn’t mean that he was comfortable while he waited for the time to elapse.  Luckily he managed to eventually sleep it off each time, so that helped. 

Pancreatic cancer is notoriously painful, but I’m lucky at the moment that my pain is mostly under control. I hope it will remain so and I won’t have to take more and more drugs. The reason it’s so painful is the large number of nerve endings in the area around the pancreas. At the moment I’m experimenting with taking cannabis oil to help with pain and I think it does help.  I can often avoid taking extra dilaudid by taking a few mls. of weed oil, which I think is less evil.  I think of dilaudid as evil because of how addictive it can be.  I don’t think I’m a very addictive personality, so I don’t know why I’m so worried about that.  Also, if I’m on them for the rest of my life, who really cares at this point?  Yet, here I am still worrying and trying to avoid taking more than I absolutely need.  A friend who’s been living with cancer for many years says that at one point she decided to wean herself off the opioids and discovered she didn’t have any pain!  The pain doctor that I see at the MUHC doesn’t seem to think that the opioids are anything to worry about, probably because I always tell  him I don’t take many “breakthrough” doses (extra pain meds), so he knows I’m not abusing the medication. 

I’m heading to my 4th dose of the new chemo tomorrow.  Hoping the chemo is doing its work and that the side effects won’t be too bad.  As much better as it is than the previous one(Erica says the difference between them is like  “night and day”), it still sucks, so wish me luck!  

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