What happens in what order? What can you expect from Pancreatic Cancer and Stroke?

First off, everybody's journey is different. And that's the problem.

Our experience is that this is the standard answer for "everything". We had no "this might happen" or "look out for these symptoms" or "Here's what to do when X happens".

Nothing.

No pre-emptive information "just incase it causes distress". Well, I'll tell you what causes more distress - spending days on end worrying and not knowing and trying to figure out what the hell is going on and who to call and what do to.

So (and I am sure I will say it again and again) but the system and the journey is broken. Very broken.

I can only give you what happened to us. But, I suspect it's pretty typical. This could be a long long article. Apologies in advance.

Pre-Symptoms

Catching Pancreatic Cancer early

Forget it. 99% chance is you haven't. It sits there for years (10... 15+ years) growing really slowly. And then boom! It explodes. There is no good prognosis. Forget all the nice, fluffy, positive BS you might get fed, this is a journey into the deep. 

We were told so many "mis-truths" it's unbelievable. First one was "You're young, you don't smoke, you don't drink, you're not over-weight, you're female.... you could have months and months. We don't know."

And, "You might not suffer any pain".

Just not true. From everything I have read (and that's a LOT!) and our experience, that simply isn't true. Some people live longer. Some people don't experience any pain. But most don't live linger.. and most do experience significant pain with pancreatic cancer. So get bloody ready for it. You're going to need drugs.

Not only that, with a Stroke on top of it, you've got all the emotional/physical issues that a Stroke brings. Be warned. It's not pretty. You're going to need support.

Early signs - Things to spot

Nothing! Yep. Apart from if the cancer is in the right part of the Pancreas, and then you may get Jaundice (where your eyes and then skin goes yellowish). That's it. We didn't have that location of the cancer, so there was no Jaundice. No signs.

Pre-Symptoms - Links you'll probably find

You'll probably come across links to vague, generic information like the Mayo Clinic: 

They'll say things like:

Signs and symptoms of pancreatic cancer often don't occur until the disease is advanced. They may include:

• Abdominal pain that radiates to your back
• Loss of appetite or unintended weight loss
• Yellowing of your skin and the whites of your eyes (jaundice)
• Light-colored stools
• Dark-colored urine
• Itchy skin
• New diagnosis of diabetes or existing diabetes that's becoming more difficult to control
• Blood clots
• Fatigue

The emphasis should be on "often don't occur until the disease is advanced"... Like almost never occur until the disease is significantly advanced! If you've got those symptoms. Then be prepared for the worst. It's probably already spread. Sorry!

What are you actually looking for once you get a Pancreatic Cancer diagnosis?

Change in behaviour

Well... one sign that was noticable but could have been a sign pre-diagnosise was personality adjustment. Yes. My other half was always grumpy. But she got way grumpier. Nothing was right before. Now everything was wrong. That was her changes. You're family member may be different. But there may be a change in personality. Why? Because the pancreatic cancer is thickening the blood and causing micro-clots and these can end up in the brain. They're tiny. But they are making a change. Alison sometimes said inappropriate things and she would get super angry about "the world" - it got worse and worse.

Our journey was confused because Alison was run-down by some horses months before hand and then broke her leg. So, she was already tired, fatigued and had been immobile for long periods of time. So, I put her personality adaptation down to that. It's not Jekyll & Hyde - everything is much more subtle than that. Alison was already a very negative, stressful, anxious person - but it definitely got a lot worse pre-stroke / pre diagnosis.

Obviously, once she had the stroke, her brain was battered and it took 4 months and a lot of Mirtazapine to calm her damaged mind.

Acid Reflux

Alison had always been quite sickly - migraines and being sick was fairly regular for many years. However, one thing that did become apparent was the increase in Acid Reflux / GERD.

So, you're going to need Lansoprazole to calm the stomach and enable it to be able to handle all the other cocktail of drugs.

Once again - could have been picked up before our diagnosis - but so many people suffer with acid stomach now-a-days, that it's not a clear sign of Pancreatic Cancer

Sleep Apnea

Yep. I know. Weird. But about a year or two prior to our diagnosis Alison developed sleep apnea badly. Of course, she would not accept that she could possibly have something like this so it remained unchecked.

There is research to show that Cancer and Sleep Apnea go hand in hand. My personal suspicion is that one feeds the other. The person is already becoming "a bit more tired"... initially sleeping deeper BUT that sleep is then constantly broken by the sleep apnea. Lack of proper deep sleep means the body fails to repair - allowing the cancer to progress which makes the person more fatigued. As with all these things, it's not a big red flashing light... but it's not nothing.

That is just my belief. I am not a doctor. What is the causation and what is the correlation, I don't know but it is a sign that things aren't going well in the body.

Gastric issues, pain and discomfort.

Oh yes. Weeks and weeks of pain, gripey, gargling stomach with no help what-so-ever. No sleep because toileting was so uncomfortable and lying on the sofa with a water-bottle and paracetamol between toileting - because there was constant discomfort. 

Oily, loose, floaty poo.

We spend weeks and weeks. And then we had our first meeting with Oncology (yes weeeeeeeks after the initial diagnosis (partly due to our delay in being in Berkshire for the Stroke and then shipped to Hampshire for the Cancer).

During that meeting, no one asked any useful questions - like, "How's your poo?"....

I brought it up. 

"Oh... oh really... well, there's these things called 'Creon' which are enzymes that help your body break down food. We'll get you a prescription".

Cool.

Within 24 hours of taking Creon, Alison's gastric symptoms subsided. You'd think someone would have said something sooner, right? Nope... You need to push!! Get Creon! Early!

They go off food

Once again, due to the stroke, Alison had trouble with food. She lost her sense of taste (well, it changed) and she wasn't hungry. Now, I realise that it was also due to the cancer... changing the way she felt about food. Changing the foods she liked. Changing the desire for food (to none).

Her sense of taste was 'off' but her ability to smell was like a super power. She couldn't feel anything down her left side, but she could smell some perfume from 100 meters. And food was not a good smell for Alison. 

Weirdly, she went off anything that is known to have any cancer fighting properties. E.g. Garlic. Anything that was healthy seemed to be 'off' to her. Wow that cancer sure just wants sugar sugar sugar - although she went right off chocolate - which she used to love.

Also, Alison would not know she was hungry. That was the stroke. Immediately she had the stroke, she had no hunger impulse. 

The stroke confuses and brutalises everything.

So, we spent weeks hoping, "It's the stroke... It's the stroke... Once we get through the stroke, we'll have this window of opportunity to go and do things and meet people and maximise the last few months of life."

Sadly not.