Lymphaoid Granulomatosis TCell

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Lymphaoid Granulomatosis TCell

We are new to this, just as you all have been or are as well. My beautiful husband has been told he has a rare form of cancer called Lymphatoid granulomatosis T Cell he has affected area of the head and has had one lump removed already the devil is isolated at this stage which is good,  but we are still going through the process of tests as his cancer isn't acting like it should.   I find it very hard to watch him in pain, and have been angry at the world.

I now find that we have deceided to fight the fight and go on with our lives as if nothing is happening, as for that second when we were told the world stopped and everything was quite.. then the noise in my head started again with a billion questions and still no answers..

We were told that we would find out our true friends and the not so true ones, this is so true, and finding complete strangers are kinder than friends we had for many years really makes me sometimes feel very alone in this.

I find it hard to stop thinking what if's, what if they are wrong, what if they made a mistake, what if anything, I tried to be the strong one, sometimes finding that very hard feeling completely alone in this process because your the one who doesn't have cancer, but your feeling the same feelings as the person who does my husband. Just wanted to tell my story as it is only new and if anyone else who is a carer feels this up and down roller coaster ride can tell me that all these feelings are normal.

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Re: Lymphaoid Granulomatosis TCell

Hi Kayle,

Thanks for you post - it certainly does sound like you and your husband have been on a rollercoaster. Not sure of you're aware that Cancer Council runs telephone support groups for Carers. It provides a wonderful opportunity to share your experience with other carers as they will share theirs with you. Participants get to give support to others and receive the much need carer support as well.  There is always talk about the ups and downs and the rollercoaster rides too!


To access to the service, call 13 11 20 and you can talk to someone who can explain how it all works.



Cancer Support Coordinator

Cancer Council NSW

Cancer Council NSW

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