Hello all!
I’m introducing myself to other members of this club, a club that shouldn’t exist.
I’m 27F and have been dealing with a rare form of paediatric brain cancer for a year and a bit. When I was first diagnosed, I was told that it would almost definitely be curable, however a whole host of awful 1%s happened to me and now I’ve ended up in a place where I’m being referred to palliative care and told that this is not something that I’ll survive.
I just need to talk to people who get it. I feel like I have to be positive for everyone (even though I know I don’t). I’ve always been a bit of a backbone for my family, and now I automatically want to take on that role again but just can’t.
I just overheard my boyfriend’s dad ask him if we’ve organised a disabled parking permit yet - like, what?! It’s been 3 days! I have a limp due to some tumours in my spine that are yet to have radiation treatment, but give me at least a little longer to adjust!
At the same time, I do feel like I need to prepare for the worst. I need to think about what I want to put up with, medically, and what I don’t. I need to think about work, and paying my bills, and I really don’t want my boyfriend or my family to have to look after me, but I really don’t want to die in a facility. I would also like to talk about euthanasia, which is thankfully available in my state.
I haven’t seen the palliative care team yet, so I guess I can talk to them about all of this. I’m just looking for words of wisdom from others in a similar situation. What do I do? How do I even process this news? How do I get past the “it doesn’t even matter anymore” thoughts and the depression, so I can live my life while I still can?
Any insights would be greatly appreciated.
Hi mementomori and a warm welcome to the Online Community but so sorry to hear about your diagnoses.
The cancer journey can be such a stressful and challenging time but you have done the right thing in reaching out to a place where you can ask questions and getting support from others who are on the ‘exact’ same cancer journey.
The Community is divided into support groups (discussion rooms) so can I recommend you join and post in our supportive Living with incurable cancer - incurable patients only support group. This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
If you'd like to connect in with a group click on the (Bold) Group Link I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
From what you have said I am assuming that you are not in the United Kingdom, if so there will be significant difference in health and welfare provision and one will be there is no euthanasia in the Uk.
Do get back to me if you need further help.
Hi Janinne and a warm welcome to you as well.
Do follow the information above to connect in with our supportive Living with incurable cancer - incurable patients only support group but as you are not in the United Kingdom there will be significant difference in health and welfare provision.
You may also be interested in our dedicated Religion, spirituality and prayer group where people of Faith support each other.
Do get back to me if you need further help.
Yes the team will get you plugged in - the approval system is done to ensure the group is a safe place for you all.
I will highlight your question directly to the Community Staff for you.
((hugs))
