Hi,
I am new here and needing to talk. I feel so angry about it all. My son was diagnosed in 2014 with a brain tumour on his pineal gland. It was inoperable. I was always told it was benign as it was slow growing.
He has had 7 operations now since diagnosis, having shunts fitted and more shunts fitted, cysts drained and then March 2021 they went in for another cyst popping as his symptoms were so bad. He had paralysis in his right side, headaches dizziness sick.... The surgeon actually removed his inoperable tumour on April 1st we were told it had all been removed. I thought it was a joke! But it was real. He had to have another shunt fitted a month later as his hydrocephalus had returned.
MAY 24TH 2021 we got his histology report and the tumour had been part cancer. So my 15 year old boy had to be put through chemo.
He has had 2 rounds of it already, 1st round was carboplatin and etoposide and 2nd round was ifosfamide and etoposide. He is due the 3rd round tomorrow.
I am so proud of what he has had to endure but I feel so angry with ex professionals that got involved with my children. Saying I over exaggerated his tumour and it was just benign. The hurt and pain and mistrust it has caused is unbearable at times. My poor boy has lost most of his childhood due to this benign tumour and now we found out it was cancer. I want all these professionals to apologise for taking my boy away from me when he needed me most.
I want to take the cancer for him so I can take my anger out on it. He is just a shell of a boy that he used to be. Nafter his 4th round of chemo he has to have 6 weeks of proton beam therapy in Manchester daily. Manchester is about 2 hrs away from where we live. It's so hard for him to deal with.
Sorry just had to share and it all came out at once. It probably doesn't make much sense.
Hi and welcome to the online community
I'm sorry to read that your son has brain cancer and I can understand why you feel angry about the situation. I'm not sure from your post whether you feel that your son's medical team have failed him but, if this is the case, you could contact PALS (Patient Advice and Liaison Service) at the hospital involved as they can help resolve problems and concerns.
I'm not a member of this group but I noticed that no one had replied to you yet. My reply will 'bump' your post back to the top of the discussion list where it'll be more easily seen and hopefully someone from the group will come forward to talk to you.
You might also like to join the family and friends group which is a safe and supportive place to discuss your worries and get support from others who have a loved one living with cancer. If this is something that you'd like to do then clicking on the link I've created will take you there where you can join and post in the same way as you did here.
When you feel ready it would be great if you could pop something about your son's diagnosis and treatment into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
Sending a virtual ((hug))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
