June 2013 update

1 minute read time.

Why do parents feel it is for the best NOT to discuss important things with their children?

 

So just a short recap: Dad had his operation, the cancer was worse than what showed on the scans, had to have a stoma which kept leaking and was causing a great deal of hassle and stress. After 3 attempts they did the reversal operation and he eventually came home.

My parents went to an appointment with the surgeon and my mum said he told them that they had removed the cancer, and made an appointment for him to see an oncologist for chemotherapy.

However, my dad is still getting a lot of pain, still isn't eating properly and isn't sleeping.

So my mum took my dad to see the gp, to get some pain relief and she told them that as they were under palliative care she could prescribe Morphine for him. This knocked them for six, as no-one else had mentioned my dads treatment was now palliative.

My mum told my sister about the trip to the gp, but not me. However my sister mentioned it to me as she was concerned about what was going on. I rang my mum, and she said they had not wanted to tell me. Apparently when they were at the appointment with the oncologist she had told them that with Chemotherapy my dad should have about 2 years.

But when the gp said palliative care they had been taken aback thinking maybe they had less time.

I said to my mum that palliative doesn't mean its not long left, which is what they had thought, that there were people on this site that receive palliative care for 2 - 3 years sometimes 5 years and some longer.

The gp is helping them to sort out the pain relief, so hopefully that will make my dad more comfortable.

 

I told my mum that I'd rather know what is going on, than to have to try and find out and guess. They seem to think that by saying everything is fine, that it might be, even though we can clearly see that it isn't!

Parents not telling their children everything that is going on, is actually more worrying and stressful for the children than keeping them informed. Because we get concerned about our parents.

Anonymous
  • FormerMember
    FormerMember

    Hi Sue, 

    I'm sorry to hear the news about your dad, and also that it's been difficult for you to find out what's going on. It sounds like an already stressful situation has been made worse by you not knowing the full story. 

    In case it's helpful, I thought I'd let you know that we have a dedicated section on the website about who can help you deal with mesothelioma. It lists a lot of resources and help that's available.  

    If you have any questions about palliative care, or the treatment and care your dad's receiving, you can always give our supportline a call on 0808 808 0000. It's free to call and open Mon-Fri 9am-8pm. The team are there to support you, or can just listen if you need to tell someone about how you're feeling about everything.


  • FormerMember
    FormerMember

    My father has bowel cancer, it was my father-in-law that had mesothelioma.

    I appreciate that there is a wealth of information on this site about various different types of cancers and support available.

     

    However, my parents were telling us that everything was fine and the cancer had been removed, when in fact it hasn't been.

    When my mum spoke to my sister she mentioned that the gp had said my dads care was palliative, as she was relaying what had been happening. My sister obviously got concerned and was asking me questions, I said I wonder if our parents are taking in what is being told to them at the appointments.

    After speaking to my mum though I found out that actually they weren't telling us all the information, as apparently they didn't want us to be upset. Actually what I feel is that they are shutting us out, how can we support them if they don't tell us what is happening?

  • FormerMember
    FormerMember

    Hi Sue,

    Sorry to hear you are having trouble with your parents. I imagine that they are thinking you have had enough to cope with with your husband dying of cancer already so they were probably trying to protect you thinking it would bring back bad memories or something.

    I have had people do the same to me. Either I am the one that has to hear about every cancer going as I should be interested, other people think that they should not tell me to protect me as having it is bad enough. Not sure that makes any sense but I can see how they would think not to tell you.

    Talk to them and tell them that you need to know what is going on and want to know and cope better knowing than not.

    Sending you a big hug and sorry to see you here again though its nice too

    Little My xxx