New T1- another illness to cope with.

[Mona66]

Hello,

I was diagnosed with type 1 diabetes on Monday- 4 weeks after completing a course of radiotherapy for breast cancer. I’d come back from our family holiday feeling very tired and went to the GP, thinking I had fatigue. She did a blood test and my HbA1c was 100. I was then put on Gliclazide until the results of my antibody test came back. They came back on Monday and I was started on insulin. I am 49 years old and what surprised the doctors was how my HbA1c jumped from 50 in May to 100 at end August. It’s been suggested that the stress my body has been under with the cancer treatment and mental stress could have been a trigger. Has anyone any experience of something similar? Like everyone else here, I’m sure, I have felt so bewildered this first week. My feelings have ranged from terror, through despair and anger to my current reluctant acceptance. I was lucky enough to have a 2 hour appointment yesterday with a dietician, already I feel more confident. She has put me on a carb counting course on Monday and I’m on the waiting list for the DAFNE course which I’m really looking forward to as I want to start doing exercise again and don’t know how to account for it. I’ve also been offered an appointment with a psychologist and I have agreed. I’m hoping that talking to someone else will help me come to terms with this new diagnosis and deal with the negative feelings of unfairness and anger. Second question- have people positive experiences of seeing a psychologist and do you have any advice how to approach it? Thanks very much. Oh, I should also add that so far there are no further problems re the breast cancer hormone treatment is ongoing.

 

[catapillar]

No one knows what causes type 1 to be "triggered" but lots of people can point to an illness or a trauma that they think was the trigger for them. It absolutely makes sense that oncology treatment might have been your trigger.

It's great that you've been put on the waiting list for DAFNE. While you wait, I would recommend reading a book called "think like a pancreas" it covers the basics in managing type 1.

And there's an online course that might be worth a look- www.bertieonline.org.uk

It's great they they have referred you to a psychologist. I haven't seen one. But I'm sure you will find it useful - maybe try and make sure it's a health psychologist. The combination of cancer, triumphing over that and then having to deal with type 1 must be a massive roller coaster and if you can talk to someone about how to deal with you feelings on that it might be really helpful. Just go in with an open mind.

 

[Mona66]

No one knows what causes type 1 to be "triggered" but lots of people can point to an illness or a trauma that they think was the trigger for them. It absolutely makes sense that oncology treatment might have been your trigger.

It's great that you've been put on the waiting list for DAFNE. While you wait, I would recommend reading a book called "think like a pancreas" it covers the basics in managing type 1.

And there's an online course that might be worth a look- www.bertieonline.org.uk

It's great they they have referred you to a psychologist. I haven't seen one. But I'm sure you will find it useful - maybe try and make sure it's a health psychologist. The combination of cancer, triumphing over that and then having to deal with type 1 must be a massive roller coaster and if you can talk to someone about how to deal with you feelings on that it might be really helpful. Just go in with an open mind.

I'll look into those resources- thank you for the supportive message

 

[Daibell]

Hi. T1 can advance rapidly so it's not altogether surprising the Hba1c jump. If you were on certain drugs for the cancer such as steroids these would have a big effect as well.

 

[azure]

Hi @Mona66

I haven't seen a psychologist either, but I do know someone who spoke to,one after a serious health scare and she said she found it really helpful

It's great you're keen to get carb counting. I can't stress enough how crucial that is for good control. If you'd like a book about Type 1 then Think Like A Pancreas is excellent and very popular here.

I felt angry and upset when I was diagnosed with Type 1. What helped me was talking it through with my consultant and my nurse. Once I understood a bit more about Type 1, I felt better about it. Be kind to yourself. It does take time to come to term with diabetes because it's something you have to think about every day. But it does get easier

 

[Mona66]

Hi. T1 can advance rapidly so it's not altogether surprising the Hba1c jump. If you were on certain drugs for the cancer such as steroids these would have a big effect as well.

My father is T2 so originally they thought I was T2 too. No steroids. Remains a mystery. (Thanks).

 

[Mona66]

Hi @Mona66

I haven't seen a psychologist either, but I do know someone who spoke to,one after a serious health scare and she said she found it really helpful

It's great you're keen to get carb counting. I can't stress enough how crucial that is for good control. If you'd like a book about Type 1 then Think Like A Pancreas is excellent and very popular here.

I felt angry and upset when I was diagnosed with Type 1. What helped me was talking it through with my consultant and my nurse. Once I understood a bit more about Type 1, I felt better about it. Be kind to yourself. It does take time to come to term with diabetes because it's something you have to think about every day. But it does get easier

Good advice, thank you. I've ordered the "Pancreas" book, the carbs n cals book and app are great too. Looking forward to seeing the psychologist- should have done it with my first illness. I'll let people know how it goes

 

[SamCNatty]

I went from HbA1c of 35 to 85 in 5 months but so far I'm still classed as T2. I'm awaiting antibody tests etc to see if it could be anything else.
My only symptom was unexpected weight loss. I did see a Dr and he said "great, keep doing whatever you are doing" I changed Drs after a random blood test check up in a shopping mall showed 17 Mmol new Dr has been fabulous.
I'm on insulin, basal mornings until my fasting is below 9 then looking at bolus insulin with meals. I'm also taking metformin. 500 mg four times a day.

 

[Neohdiver]

Similar diagnoses but flipped. I was diagnosed with T2 diabetes (and Hashimoto's thyroiditis) last October, managed to wrestle it under control, and then was diagnosed with Breast cancer in April. I just got done wtih radiation (August 24).

For us both:

You'll get there. One step at a time.

 

[Mona66]

I went from HbA1c of 35 to 85 in 5 months but so far I'm still classed as T2. I'm awaiting antibody tests etc to see if it could be anything else.
My only symptom was unexpected weight loss. I did see a Dr and he said "great, keep doing whatever you are doing" I changed Drs after a random blood test check up in a shopping mall showed 17 Mmol new Dr has been fabulous.
I'm on insulin, basal mornings until my fasting is below 9 then looking at bolus insulin with meals. I'm also taking metformin. 500 mg four times a day.

Hi @SamCNatty I had weight loss too. Well done on changing Drs! Glad the new one is good- All the best with your treatment.

 

[Mona66]

Similar diagnoses but flipped. I was diagnosed with T2 diabetes (and Hashimoto's thyroiditis) last October, managed to wrestle it under control, and then was diagnosed with Breast cancer in April. I just got done wtih radiation (August 24).

For us both:

You'll get there. One step at a time.

Thank you @Neohdiver , I read this when I was out- you almost made me cry in public That wouldn't have been a first. All the very best with all of your treatment- We can do this! x

 

[donnellysdogs]

I see a brilliant cancer therapist. However, we talk about all my life and issues and cancer is bottom of the list.
I also did arts n crafts therapy too. The psychologists and therapists at my cancer therapy unit are superb and I have to recommend thoroughly.

One example.. My therapist got my diabetes team, GP, stomach team on board to help me more.. Totally different to my breast cancer.

Highly recommended...

 

[donnellysdogs]

I'm opposite.. Letrozole tablets have put a stone on me (for which I am grateful!!) but get annoyed when all the consultants see my weight now and say "oh good you put some on" without looking at the pathetic amount of food I eat....then they wonder why I am now anaemic!!

 

[Neohdiver]

I also did arts n crafts therapy too. The psychologists and therapists at my cancer therapy unit are superb and I have to recommend thoroughly.

My arts n crafts therapy that got me through radiation:

I added a piece every treatment day during radiation.

My purple radiation marks (transferred via traced photograph) are in the scrollwork middle-left (4 + signs forming the bottom corners of the first row of rectangular frames) and the purple alignment marks on my sides are in the piece below it that looks a bit like a bridge (the arms disrupt the smooth "waves," fading out with distance from the intrusion (as I trust the impact of the intrusion of cancer into my life will.) The paper crane given to me by my radiological oncologist (also transferred via traced photograph) is at the bottom center [added on the anniversary of the bombing of Nagasaki - since the bombing of Hiroshima, to which the crane is connected, did not fall on a treatment day.

 

[donnellysdogs]

@Neohdriver

Truly inspiring!! I got to start making my own cards and painting on glass.
Made just a photocopied and coloured card for my hubby separately at home as I never tell him how special he is.

My therapist has seen me thru some other worse times with health than the cancer. The cancer paled in to insignificance compared to the diabetes and stomach.. Despite being poisoned in my armpit!

Amazing that In my brain I see the cancer removed and not being able to really do much about stopping it from returning... I cannot accept the words "are you in remission?" for cancer. Who the heck honestly knows! All I say is there is "no evidence" However my diabetes and stomach is something that I can do something about to help myself..

I don't see the diseases as being linked in anyway. My gastro chap was afraid the cancer had gone further but he kept those fears from me and was delighted to tell me they hadn't but the other probs weren't any better and more added in.

However, we have to do our best and thats all we can do. I do believe that diabetes and even my stomach probs can be managed by me better than anybody else.

My fear is lack of control with the cancer. I have control of everything else in my hands and I think people with multiple critical illnesses like to have control of something!

Your picture is inspiring... Its amazing how we can just get creative from the angst we are going through..

 

[Mona66]

@Neohdiver @donnellysdogs Your creations aren't just beautiful, they are very constructive, thank you for sharing-I can see they mean a lot to you. My thing is being out in the Peak District, I went out today for the first time in weeks and I feel SO much better, am planning another trip in the week.
I know what you mean about the control thing- it's not easy.

 

[Neohdiver]

@Neohdriver

Truly inspiring!! I got to start making my own cards and painting on glass.

Amazing that In my brain I see the cancer removed and not being able to really do much about stopping it from returning... I cannot accept the words "are you in remission?" for cancer. Who the heck honestly knows!

. . .

My fear is lack of control with the cancer. I have control of everything else in my hands and I think people with multiple critical illnesses like to have control of something!

Your picture is inspiring... Its amazing how we can just get creative from the angst we are going through..

Delightful card!

I have trouble figuring out how to describe my relationship to cancer, as well. Had? I think the doctors would say describe it that way. They talk about keeping it from recurring. Remission? Maybe - but I think of remission more in terms of turning off the expression of something genetic that is still here. As near as they can tell, they removed the entire tumor - and there were no cells that escaped. Survivor? That implies something in the past - and this won't be entirely in the past for another decade of aromatase inhibitor therapy. (And I also connect that term with making it through a violent physical attack.)

My bigh hurdle isn't lack of control - unfortunately my 26 year old daughter has a much more deadly chronic disease (and has had since she was 4). I'm used to not being able to control medical things. My big hurdle was the timing in my life meant I didn't have the chance to do the research I always do to make myself comfortable with the course of treatment. I had to accept, mostly on faith, that radiation was appropriate. Since it creates a very small risk of a very aggressive cancer - in exchange for reducing for a much higher risk of a much less aggressive cancer (that I've already found once) - I never had a chance to do enough research to make my peace with that thread. I had a very small window, and only the weekend after my massive work-related time drain before radiation started, to do the research. The drawing was my way of making emotional peace with the need to move ahead - even though I had not done the research.

 

[Neohdiver]

@Neohdiver @donnellysdogs Your creations aren't just beautiful, they are very constructive, thank you for sharing-I can see they mean a lot to you. My thing is being out in the Peak District, I went out today for the first time in weeks and I feel SO much better, am planning another trip in the week.
I know what you mean about the control thing- it's not easy.

Thanks!

It is important to find and do the things that make life worth the challenges that accompany living. I had planned an August dive trip - my first in 4 years - as a reward for managing weight and diabetes. It was one of the first two things cancelled. I don't have time during the semester (and, for reasons beyond my control, this year has suddenly become even worse (timewise) than the impossible past year), but I've decided it is important to make the time for a dive trip since I don't expect to have any blocks of free time. So I'm going diving in October at my favorite location for diving.