Hi all,
Thanks for all the helpful comments on my last post about my bad patch, especially re food. I spoke to my Macmillan nurse and to a dietician yesterday, and told them all the details of my current food aversion and I've got a referral to a clinical psychologist. This is great because I've been feeling it's too much to overcome by myself and I'm feeling more optimistic about getting past this.
When I was thinking about the reasons I'm like this, it all seemed to go back to the dietician I had in London. She was a lovely young woman with a job to do, and I liked her, but in the first few weeks of my treatment, when food tasted horrible and was difficult to eat, she was very forceful about me not losing weight because my mask wouldn't fit properly and my treatment would be affected. I felt under a lot of pressure and was force feeding myself food that I could hardly bear. I still remember going in to see her in about week 3/4 and after weighing me she slumped in her chair and said we'd have to resort to the Ensure drinks, as if I was a complete failure. I'm not normally pushed around, but I just wanted to do the best thing in order for my treatment to work, and I didn't realise that masks can be adjusted until a long time later.
Anyway those were the circumstances that led me to the horrible place I'm at now. So now I'm wondering should I write her a letter. Not a complaint, nothing angry, nothing official, just an explanation of the effect her approach has had on my mental health and how detrimental it's been in my recovery. I just want her to consider toning it down. After all, feedback is a useful tool for improvement and growth. Any thoughts?
Hi Beepa
My dietitian and CNS also put pressure on me to take more Ensure/eat solids, I was in hospital, admitted after losing 16kgs in 2-3 weeks of later Chemoradio...they were absolutely spot on....I was extremely worried about my situation and how it was going to play out....my weight stabilised and after 12 days in the ward I was discharged....Video sessions with Oncology teams afterwards also meant dietitians and CNS keeping the pressure on regarding calorie intake and eating more solids...it worked.... shortly afterwards my weigh increased to a healthier level....cruel to be kind?
Take care
Peter
Maybe not a letter, but talk to PALS at that hospital and see if they recommend a way forward. I suspect they will have a way to sensitively deliver this feedback so the Dietician comes out of this feeling she can improve without feeling disillusioned. In our lives we all make mistakes and can improve with help and sensitive feedback. Not saying you're letter would not be sensitive, it's just very direct and black and white.
Finally, sorry you've had such a bad experience. I had wonderful Dieticians amongst all the other great staff.
Hi Beepa,
I completely get your aversion to food and hope that your referral helps you.
I too have had issues with my dieticians - they all just seemed interested in ticking boxes, with very little empathy for what I was going through and no useful suggestions as to what to try to eat - it was my Speech and Language Therapist that was much more helpful in this regard, thankfully!
I think your idea of writing a letter to your dietician is a good one. As you say, it may help her realise how her actions can be unhelpful - especially as we are all going through such a new and scary experience with treatment, and are very sensitive to what is said to us. I think it will also make you feel better, knowing that you have at least tried to improve the dietician's experience for someone else.
Sending hugs
Debbie xx
Yes I see your point Peter, and I guess if it works for the majority then they'll just carry on with the same approach. I just know it has not been good for me and I'm really struggling. I'm going to try and eat more solids, but I'll keep up my calories with Ensure.
Thanks Debbie. Yes when we start treatment we're very vulnerable and need a more empathetic approach. I'm constantly stressed about it and very low. My dietician now seems more empathetic. I have listened to her suggestions so I have a starting point until I see the psychologist. I want to get past it. I'll think about what to do next x
Good evening Beepa, i would make a complaint one way or the other, sometimes we are treated like being on a conveyor belt instead of as individuals. It would be best if you did not have to be treated like this as i know how vile some of these food supplements are, the trouble is these dieticians don't have to swallow it every day several times a day. I still cannot understand why they have not produced a savoury food supplement. In the past, i have complained about certain doctors and consultants who i was not happy with. I hope you manage to get back on track with your mental health with your psychologist. Good luck and take care.
Chris x
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