Grieving

[Nina6]

To leesnell.

I totally understand your pain and anger.. i tend to vent my anger when i am out in public ..i cant tolerate a lot of things that people do or say...

The home based pallative care team  have kindly allowed me to have regular phone counselling with their psychologist..they have given me ideas on how to cope with my anger....i no longer believe there is a  God etc...i dont understand why such a beautiful person was taken....

[Leesnell]

Hi nina6, 

Dont think think I will ever understand why things happened like they did. I seem to be blaming the doctors a lot for not diagnosing the condition earlier. It took them 4 years to figure it out because he was so young and didnt seem to fit the mold of the condition. Also kicking myself for not pushing to get another opinion. I am slowing coming to terms with this, but it’s hard to understand why. I’m also angry at the religion my husband believed in as I have never been religious. I will leave my comments on religion at that as I don’t want to offend anyone. We all have our own beliefs and I respect that. It is the little things that are getting me down at the moment. The  people around me mean well but somethimes I wish they would just stop talking and just be there. It’s hard to explain to them that I don’t need them to fix it, just let me go through the process and I will talk when I’m ready. 

[Nina6]

Yes my Ben was 36 when diagnosed.. from the start they said he was terminal 3 months but.he got to 20 months..but  we had a terrible journey with the care.. he acquired a hospital infection from the spinal operation so he never recovered from that... ...the immunotherapy was given too early  ..because of the infection he couldnt tolerate it..  ..the nursing care was below standard there were several times i had to step in and tell them he was desperately ill and needed a doctor...one instance he was given too much fluid and became very swollen.....i just have so much anger .....

[Nina6]

I am now at the stage when no one wants to talk to me about my son...if i do i cry ...the phone calls have stopped....life just goes on...

[Budgie]

Hi Nina6 

Please don’t stop talking about your son.  You have people on this site who will listen & answer where we can. 

Just throughout out my own journey of cancer, I can totally understand your grievances with the medical system.   I think that sometimes they just become so jaded that they don’t really care anymore.  I’m grateful for my husband being with me for all the medical appts & operations I have had, because he picks them up on a lot of things. 

I’m also very lucky with the GP I have. She is absolutely wonderful & will refer me for things the oncologist doesn’t want to. 

Take care of yourself, and vent freely. 

Budgie

[Leesnell]

Hi nina6, 

i also found it extremely hard when dealing with the hospital system and there lack of communication and ability to read his information. That is one of the main reasons we chose to do things at home in the end. The pallitive care and silverchain nurses were the reason I was able to do it. They are a special bunch of poeple who went out of there way to explain and guide me in the care of my husband. It is hard to know why poeple think you can get over the loss of someone quickly. I have stopped talking to some poeple because it feels like they don’t understand the need to talk about what you went through ,even if you are repeating yourself. It’s really the only way to deal with things. Please feel free to talk about your son as much as you like. 

. 

[Nina6]

Thank you everyone for your support...i had to read up about MDS...How frustrating that would of been to get a Dr. to listen to you........My sons symptoms were the same as carpal tunnel syndrome. and that terrible fatigue that he put down to being a bit stressed....i too beat myself up about not getting second and third opinions...i think it is part of the grieving process...The What Ifs...

[Leesnell]

Hi Nina6, 

i appreiciare that you took the time to read up about MDS as most poeple have never heard of it. Over the years  his tiredness was put down to the fact he was on so many pain killers for osteoarthritis in both hips. He had a hip replaced in 2014. I supposce i can spend the  rest of my life thinking of the what ifs.. but it will never bring him back. I try to remember the good times we had. Just so hard to adjust to this new chapter in my life.