Hello, new to site:

[Vivien]

Hi Vivien and welcom to the forum.

It must be all very daunting for you, so soon after "diagnosis" but you will get to grips with it in time. I suspect that you've still got other stuff to deal with, following your treatment.
Even after 28 years as T1 I still make silly errors and eat stuff that sends my BG into orbit, not to mention the sometimes inexplainable swings. The thing is that high sugars are not an immediate danger (within reason) - you just need to get accustomed to what you can and can't eat and how different foods affect you. This is obviously not going to happen straight away (I'm still learning!) but the secret weapon is testing, testing, testing; it's the only way to understand what's happening. Never be tempted to avoid a test, purely because you think it won't be good - that just compounds things (deffo "do as I say ...." thing going on here🙂).
There are loads of peeps on this site with quick access to a variety of sources of info, as well as it being a genuinely compassionate, caring community.
Good luck with your endeavours and look forward to seeing some of your Hi.
Best regards, Chris.

Hi Chris, thank you for this, it is encouraging that you are still 'experimenting'. I still don't really understand what I can and can not eat, or at least eat less of and I think that you are right regarding try and see. Apart from apple turnovers I think cheese can send my bs high. I have been amazed at the replies that I have had which is lovely. Thank you

 

[eggyg]

As I mentioned in my previous post I am 3 years post op. I went back to work part part time after 4 months. I was still pretty exhausted. I remember quite clearly the first day I ventured out for a walk, I had my op on 18 December and went out on 1 Feb. my 15 year old daughter came with me I just did 20 mins but by God I was kn*****ed! But everyday I tried a bit more, I drove for the first time in the March that was scary, I was in a bit of pain at first when I changed gear and put on the hand brake, obs was all the internal scarring. I know what you mean about wishing you hadn't had the op. I felt exactly the same, you feel that you will never be better. I won't lie, there's no great epithany, you just feel gradually better. It takes time, but I try and live each day as if it's my last, I feel I've been given a second chance, I have to be careful what I eat and drink, not just because of the diabetes but because I get pancreatitis, sometimes I wish they had taken it all away, because each time I have a pain I think the tumour is back. because mine was pre cancerous, I don't have any ongology support and neither my GP or local hospital( I had my op in another trust in a specialist unit) can deal with me, I find that frustrating and upsetting sometimes. I have great support from my family, my husband worries about me constantly, if I am going out for a meal etc without him I get given precise instructions. I don't take any notice mind! I work 4 days a week and look after our 2 4 yr old grandchildren on a weekend and am usually permenently exhausted, but that could be my age. 50! People always say I look really well considering what I've been through, I just feel normal apart from having most of my insides removed (I had my gall bladder removed 10 years ago because of gall stones which in turn resulted in pancreatitis which led to the whole sorry mess) and being diabetic. I am still here to tell the tale though! Elaine x🙂

 

[martindt1606]

Hi Martin, I hope I am doing this correctly, I am not the best on computers!
Did you have your operation at the Churchill in Oxford? I am having my chemo at High Wycombe but it is under the Oxford team.

The operation was on 4th Nov and I had a really bad time once I left hospital with pains when eating so after 2 weeks they have given me Domperidone to take before I eat as well as the creon, which is helping, I am also taking Omaprazole. Creon I am still finding a bit of a nightmare and quite often forget to take it which is not good. I also take 1 antibiotic a day as I had my spleen removed quite a few years ago due to hodgkins disease, yes I have been unlucky!! So coping with insulin as well I feel my time just revolves around thinking about eating, pills and insulin.

The operation went well but the oncologist said there were some loose cells that they had to get rid of hense the chemo. I am more then happy to talk to you about it, so far it has not been bad at all. I have 1 hour of chemo a week for 3 weeks, then a week off, which I am currently on I call it my holiday, then the cycle starts again for 6 months. So far it has been fine I have only felt a little tired and maybe a bit sick but nothing significant. It might get worse as the toxins build up but so far so good.

The post operation has been pretty awful, my bikini days are over. Don't not go swimming because of your scar you have been through so much and it is only your body. I know we are one of the very few 'lucky' ones with this cancer but sometimes I wish I had not gone ahead with the op. I am not back at work yet but am hoping to start back at least for a few hours during Feb.

Thank you for the info on the rivita slims

Vivien hopefully you may have identified why I feel spaced out and sick. Before I went in for the Op I was taking Domperidome but these were dropped by the hospital doctor and I never had then reinstated by the GP. I guess its time to ask for them to be added back to the prescription.

Its amazing how we are all different and yet similar. For example eggyg started out with Gall Stones as I did and it was whilst investigating these that they identified a scarred pancreas (but no tumour). 6 years later they identified the tumour so out came the pancreas - but not the splein.

Like you I am also benefitting (?) from the joys of multiple health authorities. I am now with Hillingdon for diabetes but with Hammersmith for Oncology (they also did the gall bladder and pancreas follow up).

I've been back at work since September its been slow and this week (hopefully) will be the second consecutive week where I've worked all week for the first time.