Hi Helen @hlb Thank you for the update. Will he let another person go in to see his doctor with him?. As his brother is affected as a donor will he let him go in with him as he might have questions too? He may feel that he wants to ‘be mature’ and deal with his health issues himself. It sounds as if he may be struggling to deal with his diagnosis still, and is not ready to talk. It may help to have another chat to someone at MacMillan who may be able to help you break down the barrier he has put around himself. Take care, and just be there for when he is ready to talk xx
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Thanks Erica,
It’s lovely that I can speak to people on here who ‘get it’!
It’s strange because he was 17 when he was diagnosed and very much still young! During his treatment he has matured a lot and I feel like this passed me by. When you’re child is as ill as he was, it was like taking care of a young child and I’ve struggled to adapt and let go of the young man that he now is. I know he thinks I’m too emotional, and I feel that he keeps his feelings in and possibly try’s to hide me from the truth. I think he’s very angry about his diagnosis. He doesn’t want anyone in with him in these meetings, I don’t really know why. It’s almost like he doesn’t really take in the possibility that this could be very bad news and focusses on the positives that there is a chance it’s not. I’m more of a prepare for worst and hope for the best. When I was asking him questions when he came out of the meeting, he really snapped at me and said he feels like there has been a role reversal. I wouldn’t have to ask him questions if I had been in the meetings, and I felt really upset by his comments. I really never know what to do for the best. We haven’t discussed it since he went back to uni, we never do. It’s like the elephant in the room, and I feel like it puts distance between us. He sometimes makes me feel like I have no right to ask about his life. I’m not sure I know what to say to him anymore sometimes.
Thanks for listening, how are you doing, I feel like I talk about myself too much!
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Hi,
Thanks for replying! I agree I’m not sure he ever really dealt with his diagnosis. He only ever cried once, and that was after his transplant. Even when things were really bad, I don’t think it sunk in. I’m pretty sure it was his coping mechanism. In some ways I feel like he was so strong, but in some ways I found it so strange( am I allowed to say that) I cried every day since he was diagnosed and still do often. I talk a lot to friends too and it helps, but I know that he doesn’t. He doesn’t want to be known as cancer boy. His brother talks a lot more about it.
He honestly doesn’t feel like he wants anyone in with the doctor, he feels mature enough to handle this on his own. He’s obviously very bright and understands the medical terminology, so probably feels like emotions get in the way.
I know I have to let him deal with it all in the way he wants, I’m just finding it hard!
I hope you and your family are ok,
Love Helen
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Hi, it’s tough being a mum isn’t it, especially emotionally you have the maternal instincts in the mix as well. You also have the struggle of a son that is trying to prove he is now an adult and you struggling to let go. Also words really, really hurt me. I have a son (aged 45yrs) that has bounced back home after many years away. I know I struggle with the asking questions that have one meaning to me, but are taken another way by him. We never know where he goes on when he will come back but, just to make you laugh when my husband and I go out we tell him where we are going and when we will be back !!! Thanks for asking about me I have CLL, diagnosed in 2003 and I have been a very lucky girl and I have been on watch and wait ever since and manage my symptoms well but still get so anxious when medical appointments are due. Please keep posting because although are situations are very different I really relate to all your thoughts and feelings as a parent.
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Hello @hlb,
Thank you so much for keeping us updated about your son’s health and am so delighted to hear that he was able to stay for 2 nights recently. I hope you enjoyed him being home and just being in his company while he takes a break from university.
You make a really interesting point about him not wanting to talk about his experience at the moment, and I understand why you feel it very hard for you to deal with. Do you know if he and his brother ever talk about things like this? Please remember you can talk things through with us at any time.
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Hi Anna, just picking up (belatedly) on your comments about children . It is really tricky, especially as you say, as we are often the ones who hold the family together.
Before I went into hospital for my transplant, I made sure both schools knew what was going on (one in secondary and one in primary) as well as other people such as cub group leaders etc. I also wrote them both a letter (in case I didn’t come back) and recorded some bedtime stories for my youngest.
My older son was doing on-line research into what I had from the day I was diagnosed, so I also signposted him to some on-line support sites. His tutor was good at keeping an eye on him and asking if he wanted to go out for pizza.
I’ve kept them updated on things over the time as I think not knowing can cause more anxiety.
We’ve got to the stage now where my older son is now accompanying me up to the Hammersmith so I can access a new drug. Neither of us drive so he helps me make sense of the tube 
He also sits in on the appointment which is helpful. My younger son is helpful on a practical level too and understands that I might need to have a rest sometimes. He does remain more sensitive and anxious though- sometimes things can trigger things for him, even things which don’t necessarily seem to be big things.
Part of adjusting to my new normal has involved us as a family adjusting too I guess…
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Hello @Joanna,
Thank you for sharing some of your parental insights of keeping the family together and how to keep individuals involved in your diagnosis. I am also so pleased to hear that your son accompanies you to your hospital visits to ease your sense of directions. The London underground can be quite difficult to understand if you don’t live in the city.
You mentioned a little bit about informing the schools and also your sons tutor. Did you find difficult to speak to them about your diagnosis and treatment? Your experience may be valuable for others in similar situations.
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