Hello.. soon to be a member of Team 3c!

[BenW]

I had mine for cancer last year so again a slightly different way of getting here from some of the others. As you've probably already realised you need to be your own advocate as I'm not sure you can rely on the NHS to always get it right. I've learnt the hard way the impact of having my treatment spread across 3 health boards and that's before I even get to the diabetes support which has been pretty much non-existent since I left hospital.

Things I've learnt...you need to carb count but not all carbs are equal. I left hospital with firm instructions to take 8 units of rapid insulin 20 minutes before every meal...queue a couple of months of rollercoaster highs and lows. The CGM is a guide and helps with trends rather than absolutes. And with no glucagon things like the 'dawn phenomenon' shouldn't happen but they very much can. Many health care workers won't be familiar with type 3c or will tell you its just like type 1 but as Roland explains there are significant differences.

Trying not to paint a bleak picture but it will be challenging. On the plus you can eat pretty much what you want once you get the insulin right. Today I had bacon sandwich for breakfast, fish and chips for lunch, pasta for tea and something called caramilk chocolate which I think is Cadbury's version of the Caramac bar for viewers of a certain age.

Thank you! It’s great to have so much insight, lots to take in but I remain positive

 

[Proud to be erratic]

Thank you! It’s great to have so much insight, lots to take in but I remain positive

There is lots to take in, sometimes it feels overwhelming. This Forum can initially, sometimes, feel unstructured as members (usually with very good nature and humour) throw in all sorts of curved balls. This morning, doing a tiny follow-up on something I asked in early Feb about exercise, I went down several interesting rabbit holes and ended up at this place:
https://forum.diabetes.org.uk/board...for-people-new-to-diabetes.10406/#post-938456

The range of "useful things" here is in itself potentially overwhelming; just start at the Type 1 section since you will be perceived as if T1 by the vast majority of any HCPs you might encounter.

You might find this link something to bookmark and then go to when you feel a bit "lost". Arguably, since it is the 3rd pinned thread in this Newbies section of the Forum it shouldn't need bookmarking at all, but there are a number of useful pinned posts and I currently only have my smart phone, so I "lose" track of where I saw something useful and bookmarks within this forum bail me out when I'm lost or can't find something.

 

[martindt1606]

hi are you on Facebook? There’s a small group called Total Pancreatectomy u.k wide range of experiences, a few members who had their TP in Liverpool. Unfortunately there seems to have been a recent increase in new members so quite a few posts you may find interesting. Stay positive. I’m a couple of months away from my 15 year anniversary.

 

[Wendal]

Thank you! It’s great to have so much insight, lots to take in but I remain positive

hi are you on Facebook? There’s a small group called Total Pancreatectomy u.k wide range of experiences, a few members who had their TP in Liverpool. Unfortunately there seems to have been a recent increase in new members so quite a few posts you may find interesting. Stay positive. I’m a couple of months away from my 15 year anniversary.

Yep is a lot to take on and I have found talking to others who have been through similar really helpful.
Martins suggestion is a good one and although not relevant to me I had a situation 20 years ago where I found a “ forum” very informative.
I dislocated a hip playing rugby and after a few years of suffering I needed a replacement hip as was suffering badly from OA.
Was told by Consultant that I was too young to have a THR but through a forum I found that there was an operation called Hip resurfacing especially for younger more active patients but the surgery was fairly new at the time and many Consultants were sceptical.
On the forum I talked to other patients who had the surgery and I decided to go ahead with it.It proved one of the best decisions of my life and have benefitted ever since.