Hi, I was diagnosed with triple negative Essential thrombocythemia (ET) in July this year.
Hearing the words “you have a type of cancer” was the most surreal experience of my life, I think I just came out of my body, I am also autistic and I catastrophise a lot but I never expected this.
I also get a lot of imposter syndrome because my cancer is “not really” cancer or not cancer enough when people in my family have other types of cancer such as cancer of the bowel etc. I feel embarrassed to be so upset in the face of all they are going through.
Like I am not entitled to feel this way.
But I did for quite a few weeks, and had some therapy about it which helped.
And now, having come to terms with all this I am worried because one if the side effects of interferon is irritability and I am growing increasingly anxious and extremely irritable.
Has anyone experienced this with interferon?
Hi @BarbaraR a great big welcome to posting on our forum.
I have a different type of blood cancer but really remember the ‘surreal experience’ when you were diagnosed.
I felt in a bubble with the world going on around me, yes it was surreal.
Yes, I also got a lot of imposter syndrome because I was not actually on treatment.
Yes, counselling really helped me too.
Nobody can take your feelings away.
My thoughts and feelings have been all over the place since my diagnosis. They can conflict with each other and change in an instant, I have never cried as much in all my life.
I also still get anxious before and during all tests, results and appointments.
As for interferon and anxiety and having extreme irritability I await others experiences.
Look after yourself and be very kind to yourself and please do keep posting
I was on interferon about 2 years and was just thankful I was one on some kind of treatment and 2 wasn’t experiencing many of the common side effects.
I did find myself feel you’re easily frustrated and angry but though this was easily felt to this day I don’t think the root of the problem was something I caused. Upon taking to my Haemotologist he did say a side effect to interferon was it effecting your mental health.
Problem with interferon is that although it’s shown to work well with blood cancers it’s not known the long lasting/term effects of being on it.
I guess we are kinda the the test rats/bunnies.
The only I would say is make notes of it and keep talking to your medical team not just about the physical feelings you’re experiencing but also the mental and emotional ones too.
Are you still on interferon now?
My haematologist recommended more to move onto hydroxycarbamide.
I resisted for so long as I felt I was doing well with interferon but then had a blip reluctantly moved on to the chemotherapy
I really don’t want the chemo though… Have to see how I do…
I really feel for you because I alao cried a lot, it’s so hard…
I believe the interferon is a good track to take, but when a time comes when your haematologist says do you wanna do what you feel like is right or have a better chance of staying alive…