Raising awareness of Pancreatic Cancer

[pottersusan]

Pancreatic Cancer is relatively little known by the general public but is a killer in many cases. I've been lucky enough to dodge that particular bullet.
To help get across the message that it doesn't always kill, I've written my story so far.
It can be found at:
http://www.pancreaticcancer.org.uk/information-and-support/real-life-stories/rarer-forms/susan

 

[Northerner]

Thank you very much for the link Susan. I see you were at the hospital where I was diagnosed, although mine was a walk in the park compared to what you have been through! I am sure your story will help a lot of people faced with similar problems. I hope that your talks about the pump progress well - it really does sound like it will suit you much better than multiple injections. Hopefully, we can help with the diabetes so that you can learn to cope better with it alongside your other problems 🙂

 

[margie]

It sounds really traumatic. I am pleased that you are feeling so much better than even a month or so back - good luck with your attempts to get a pump.

 

[pottersusan]

I certainly need help with the diabetes! I'm just getting over the 2nd hypo in 4 hours! Sometimes my blood sugar seems to drop like a stone, for no reason I can see.
From the research I've done, diabetes caused by the removal of the pancreas, is particularly unpredictable - oh joy!

 

[margie]

I certainly need help with the diabetes! I'm just getting over the 2nd hypo in 4 hours! Sometimes my blood sugar seems to drop like a stone, for no reason I can see.
From the research I've done, diabetes caused by the removal of the pancreas, is particularly unpredictable - oh joy!

It just occurred to me - that when I had the pneumonia vaccination years ago - I was told that it was a one off injection unless the spleen was removed in which case it was needed each year. I don't know if this applies to other vaccinations too but it might be worth asking your Dr or Practice nurse.

 

[Robster65]

I certainly need help with the diabetes! I'm just getting over the 2nd hypo in 4 hours! Sometimes my blood sugar seems to drop like a stone, for no reason I can see.
From the research I've done, diabetes caused by the removal of the pancreas, is particularly unpredictable - oh joy!

Does your liver's glucose output know what to do without a pancreas ?

I wonder if it's that side of things that makes it a bit up and down ?

I'm still not sure myself what functions remain intact and what dies off with the beta cells, so to lose the whole shebang must be really confusing.

Rob

 

[pottersusan]

Does your liver's glucose output know what to do without a pancreas ?

I wonder if it's that side of things that makes it a bit up and down ?

I'm still not sure myself what functions remain intact and what dies off with the beta cells, so to lose the whole shebang must be really confusing.

Rob

I've no idea if the liver knows what to do! and I suspect the medics don't know either.
On Friday I managed 3 hypos within four hours! At one stage my sugar dropped by 10 in one hour!! 😱
Saturday was interesting as I struggled to keep it above 6, so ended up in the out of hours clinic at my local hospital, by which time it had shot up. The doctor there was honest and said he had no idea what the problem was and consulted the duty registrar who had no idea either - the joys of living in a small town. The dr and I agreed that the safest thing to do was to aim for about 10 til I can talk to the 'experts' on Monday. But he wasn't very impressed by the care I'm getting - which I found encouraging 'cos that was my thinking too. I'm going to try and see my doctor tomorrow and get him to refer me to the diabetic consultant at the hospital where I had my operation, as he is the only person who is likely to have other pancreasless patients.
meanwhile I'm going to turn into a pin cushion checking my blood every hour 😛

 

[Northerner]

I hope things stabilise Susan - you most certainly should be seeing a consultant regularly. I see one and I have far less to deal with than you!

 

[pottersusan]

It just occurred to me - that when I had the pneumonia vaccination years ago - I was told that it was a one off injection unless the spleen was removed in which case it was needed each year. I don't know if this applies to other vaccinations too but it might be worth asking your Dr or Practice nurse.

The current thinking is I'll have to have it every five years, but I think that particular set of goal posts is on wheels - so who knows!
I have to take antibiotics twice a day and vitamin b12 injections 3 monthly 'cos of my lack of spleen.
The pill count at bedtime, currently, is 13 ! Add that to the sandwich and milk I eat then (to avoid morning hypos) and I go to bed rather full!
🙄

 

[robert@fm]

meanwhile I'm going to turn into a pin cushion checking my blood every hour 😛

Sounds like you're a prime candidate for a CGM -- if the NHS will fund one (they're very expensive, but sound justified in your case)...

 

[Northerner]

Sounds like you're a prime candidate for a CGM -- if the NHS will fund one (they're very expensive, but sound justified in your case)...

I'd concur. AJLang, who has gastroparesis, has similar problems and found the CGMS (Continuous Glucose Monitoring System) a real help, although she is having to fund it herself - but always worth trying to get the NHS to pay in special circumstances 🙂

 

[MeanMom]

Pancreatic Cancer is relatively little known by the general public but is a killer in many cases. I've been lucky enough to dodge that particular bullet.
To help get across the message that it doesn't always kill, I've written my story so far.
It can be found at:
http://www.pancreaticcancer.org.uk/information-and-support/real-life-stories/rarer-forms/susan

Thank you Susan - agree that, much like diabetes, awareness does need to raised. If symptoms were better known perhaps the servival rate would be higher. My lovely Dad died of pancreatic cancer last year, after having had what he called somewhat vaguely 'gut ache' for some months, without going to the doctor If he had gone to the doctor sooner, who knows?

Glad to hear you have beaten this particular monster, albeit with drastic measures, hope you can sort out your insulin requirements quickly. Xx

 

[Robster65]

Have you spoken to Adrienne (http://www.diabetessupport.co.uk/boards/member.php?u=661) about any of it Susan ?

I'm sure she'd be happy if you PMd her.

Her daughter had her pancreas removed at a few weeks old (I think) and has been on pump & CGM for most of that time since.

She may be able to give you a few pointers as to how things would improve for you so that you can tackle the consultant pre-armed.

Sometimes they need to be backed into a corner until they see things from your point of view, but quality of life has to be a consideration as well as the cost.

Since the only quality of life you have is due to your positive and proactive approach, you have a very strong case for the whole package I would have thought.

Rob

 

[pottersusan]

Sounds like you're a prime candidate for a CGM -- if the NHS will fund one (they're very expensive, but sound justified in your case)...

Showing my ignorance for the umpteenth time! what's a CGM?

 

[Northerner]

Showing my ignorance for the umpteenth time! what's a CGM?

It's a Continuous Glucose Monitoring System - you wear it all the time and it takes a reading every 5 minutes or so (it uses the interstitial fluid rather than blood). Here's a popular example:

http://www.dexcom.com/seven-plus

🙂

 

[pottersusan]

I'd concur. AJLang, who has gastroparesis, has similar problems and found the CGMS (Continuous Glucose Monitoring System) a real help, although she is having to fund it herself - but always worth trying to get the NHS to pay in special circumstances 🙂

Ah! so that's what CGM means. Sounds like a good idea. This would be in addition to a pump, I presume. The NHS have already invested a lot of money in me - my op and hospital stay must have cost well into 6 figures, so it would be shortsighted to start being cheapskates now!

I'm prepared to be the patient from hell if need be. I've started creating waves about my diabetes care. How come I've been diabetic for 5 months and no one's mentioned counting carbs to me?

With my GPs agreement I'm doing it the old fashioned way:
1. blood sugar measurement
2. food
3. count cargs and inject insulin

I'm going to be a pin cushion by the next consultant appointment, but with the aid of Excel I can produce some wonderful charts, which I can use as ammunition. Luckily my GP doesn't mind the number of test strips I use!

 

[pottersusan]

You folk out there are a fund of useful information.

Thank you 😎

 

[pottersusan]

I'm going to do some fund raising with a new friend (who's granddaughter died of p.c. at age 27 last year).

I'm a potter (amongst other things) and I think I'll do a sponsored 'pot' and sell the products for p.c. too.

 

[Northerner]

I'm going to do some fund raising with a new friend (who's granddaughter died of p.c. at age 27 last year).

I'm a potter (amongst other things) and I think I'll do a sponsored 'pot' and sell the products for p.c. too.

That sounds like an excellent idea Susan 🙂 And you've cleared up the mystery of your choice of user name!

 

[Robster65]

I suspect your team are so focussed on your P.C. and the infection risks, etc that to them, your diabetes is secondary. Obviously to you, it's your life. So go ahead and bully them into finding you someone who knows as much as we do and then bully them into giving you what you need.

I'm sure it will be a battle all the way, but it's the what you need. Not just a whim.🙂

Rob