I want to preface this story and acknowledge that many, many people who have Type 2 diabetes are not in my position where it can be controlled by diet and oral medication, particularly whilst going through cancer. This story is based solely on my experience and situation in relation to gestational diabetes and Type 2 diabetes, as I have no experience of Type 1 diabetes. It is not intended to discourage the use of insulin when genuinely required as part of Type 2 diabetic treatment.
I’m sure most people who are going through cancer treatment are just appreciative of the support and help they are being given throughout their journey. It’s new and scary and as a patient you just need to trust the process. For nearly all of my adventure I have been this patient and I am so grateful to the fabulous medical staff and especially cancer nurses who work with patients day in day out with care and concern. Only twice during my journey have I really questioned decisions regarding my treatment and thought I’d share one of those moments with you.
So this story relates more to the type 2 diabetics diagnosis I was given at the same time as the bowel cancer diagnosis. In previous blogs I have mentioned that diabetes and chemo can be problematic if you need to ‘main-line glucose’ as part of treatment. Given this, after a couple of treatments my fabulous oncologist (who I really liked and trusted) decided to refer me to an endocrinologist (diabetes specialist), to discuss this situation. Diabetes is it’s own beast so I have added a couple of links at the bottom of the blog for people interested in learning a bit more about it.
Now, before I continue to my appointment with this particular endocrinologist, I need to step back in time and provide a little bit of a diabetes backstory.
In 2002 I was pregnant with my third child and at 12 weeks was diagnosed with gestational diabetes. After the diagnosis, I was determined not to take diabetic medication and not to have insulin. So, I really did go ‘hell for leather’ finding out as much as I could about how to control my blood sugars through diet only. Given it was 2002 and online shopping and information was fairly limited, I left the clinic and went straight to a book store and pretty much bought out the whole diabetes help section. I bought recipe books, health books and every available book explaining the glycemic index (GI) as I could. (The glycemic index is a value used to measure how much specific foods increase blood sugar levels.)
Armed with said books, I spent the next 6 months in what could be described as a bit of an obsessive state of researching my food triggers. Every diabetic is different so I found my super triggers were things like white bread and pasta, yet potato and jam didn’t impact my blood sugar readings at all. I kept notes, records and a food diary and kept my readings stable at pre-diabetic levels for all of that time. Even weird cravings didn’t get a look in, let alone a milk arrowroot biscuit! The only time I went over was at my 30 week check-up. My obstetrician was running very very late so the nurses insisted I ate a white bread sandwich. I insisted that I couldn’t eat the white bread sandwich provided because it would rocket my blood sugars. They demanded I eat the white bread sandwich. I ate it and you guessed it, my reading went so high I was threatened with hospitalisation. After much pleading of my ‘white bread sandwich’ case to the obstetrician when they arrived, I was allowed to wait and be retested. Again, you guessed it, my blood sugars had significantly lowered and I left the appointment with a bit of a sheepish apology from the staff and confirmation that I really did know my GI triggers. Eight weeks on from that incident a very healthy baby boy was born.
Now, this previous experience with gestational diabetes made dealing with a type 2 diabetic diagnosis during chemo pretty much a walk in the park. I ‘knew the ropes’ so to speak re testing and triggers and was meticulous in keeping blood sugar records and taking note of my food habits. This time I was on medication, but knew it was the lowest dose of diabetic medication prescribed. Just so you get a bit more of an understanding here about how I was travelling, blood sugar readings for Type 2 diabetes in Australia are essentially considered ‘controlled’ when they are between 4.0 to 7.0mmol/L (80 to 130mg/dl) before a meal and between 5.0 to 10mmol/L (Less than 180mg/dl) after a meal. My blood sugar readings since leaving hospital were consistently in these ranges. The only anomaly was when I ‘main-lined’ glucose. On that day the reading reached 15mmol/L at it’s maximum.
So armed with a little folder containing print-outs of three months of my readings, I toddled off to the endocrinologist appointment feeling very positive. I was seated in a very busy waiting room which a number of specialists worked out of. After consulting a series of client boards on a wall, each different specialist would call out a patient in a process not unsimilar to a take-away restaurant. So, given the set-up I played a game of “Which Is Mine?” to pass the time. “Ohh is that specialist mine? They look really nice”. “Ohh that one looks young, but they are smiling. Hope that’s mine.” and “Ohh, they just scowled at the board. Oh, they look grumpy! Ohh, hope they are NOT mine”. Guess which one was mine!
So, after taking a seat in the office and introducing myself, I was all prepared for the usual niceties that accompany this situation. Instead I was confronted by “I think we’ll put you on insulin.” I was gobsmacked. “Yes, your readings are high, you need insulin”. The endocrinologist then proceeded to fire up the printer ready to organise putting me on insulin.
I do not like confrontation, and absolutely not with specialists who have years of training, but I really didn’t think, given my readings, that insulin needed to be the first ‘go to’ in my case.
“I’m sorry, could we maybe look at something else before insulin? I think the problem is when I have to have glucose with the chemo, that’s the only time it goes high.” I sort of stammered whilst gently proffering my little typed out results folder across the desk.
“Well, the readings are inconsistent! There are some 15’s here. No, you need insulin.” I then couldn’t help myself and butted in.
“I know it’s inconsistent, but it’s inconstant because of the type of chemo treatment I’m having. If you look at my data, it’s only high on the days I have the glucose based treatment”. Still said politely, but internally I was now get a tad frustrated.
“Yes but it’s inconsistent. As the endocrinologist, I believe you must be put on insulin”. I could feel my frustration rising. I was hearing them, but they were not hearing me. It was diabetes deja vu all over again!
“Umm, but the inconsistency is being caused by a constant. It’s a direct result of the chemo treatment. Could we not look at maybe increasing the diabetic medication dosage on those days rather than going straight to insulin?” My heart was pounding. This was not a debate I thought I’d have to have or wanted to have with someone way more qualified than myself.
There was a pause from the endocrinologist. So I continued to plead my case whilst I had a chance.
“I think my doses of medication are low. Would we be able to trial these at maybe a higher dose at the time of treatment just to see if maybe that will control the blood sugar? Just to see before we go to insulin? I really think there are other options before insulin.” Phew. This was a bold statement from a patient. This could go one of two ways here.
Pause
” Let me look at your data again.”
We then went through a five minute silence peppered by the sound of theatrical typing emanated from behind the endocrinologists desktop screen and the occasional grunt as my hard-copy notes were perused.
“I’ve just read the referral letter from your oncologist.”
Pause
“So it seems you are on the lowest dose of medication for your diabetes.”
Pause. Printer is spitting out documents which were then handed to me.
“For your next two chemotherapy sessions I’ll increase your diabetic medication doses and if it has no effect then you will be put on insulin. I shall be informing your oncologist about this session. Make another appointment for 6 weeks time on the way out.”
When I saw my oncologist next I told her about the increased medication during the chemo sessions and admitted that I was sorry but I think I royally pi##ed off the the endocrinologist. They laughed under their mask and said “well, reading between the lines of their email, they weren’t happy, but I’ve read worse from said endocrinologist. Plus, your increased medication is working really well. Good on you for advocating for yourself.” It was absolutely a boost to my confidence to hear my specialist encourage self advocacy, and, just quietly, I never have had to go on insulin.
I suppose I shared this particular story because having spoken to others who have had medical treatment, sometimes it is important to ask questions in order to find answers that suit your own situation. One size more often than not does fit all when it comes to medicine and medical treatment and for the most part it works brilliantly. However, there are times when sizing needs to be modified for individual circumstances. I think this story is a good example of that.
In terms of my adventures with the endocrinologist, was it to happen now I probably would just say ‘thank you’ and then ask for a second opinion. However, the experience at the time certainly encouraged the development of my self advocacy skills (even if at times the need to advocate still gives me heart palpitations). If you find you do have concerns about medical treatment but are not confident in speaking up, remember you can ask for a support person to be your voice. For me the take-away from this experience is that there is nothing to be lost by asking questions when undergoing treatment and sometimes asking a question may indeed lead to better outcomes in your own healing journey.
Below is a link to a great starting point for managing diabetes and cancer.
Below is an excellent Australian site for all things diabetes including what it is, management and other resources available on the menu.
Chasing a Lobster 
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