CancerTrapped

A question to people who lost someone they deeply loved and are in grief: are there things that your loved-one said or did while knowing that he/she was dying, that provides you with some comfort / make things a bit more tolerable when you think about them? Thank you!

@CANCERW47048601 I see what you mean! Similar spirit here. But they don't count mine anymore (too many). All these years I was trying to track each and every met and even attempt to address some of them. Now things are 'simpler' which somehow feels a bit comforting. Good luck to you too!

@cancertrapped Yh that’s what I had but I had 5 tumours & oncologist said shouldn’t really do it 4 the max but I said F it let’s hit full guns blazing & now had one tumour or dead brain removed but like I said it’s better than being dead & im just forgetful with headaches . Good luck 🤞!

Just finished with whole brain radiation. They said it wouldn't make sense to have more, too much damage. Done with surgeries too, they wouldn't open me again. I still have chemo and immunotherapy which offer some stability but resistance is expected. Then, if lucky, 'free solo'!

@CANCERW47048601 Oh.. the mask! Generally post-radiation necrosis is seems unpredictable. I had targeted radiotherapy in the past (SBRT) and my brain proved to be super-sensitive wrt side-effects. But 'fortunally' only with extensive edema, crazy symtoms and not necrosis. We'll see... Regards!

@cancertrapped Yh mine were all long term but like I said I remember them saying all kind of things but I got lucky was just that mask & being strapped down I didn’t like & now it’s more targeted so hopefully u won’t get necrosis etc but if I think of any I’ll let u know just hot patches really

@CANCERW47048601 I see, thank you for the reply. For the time being I also don't experience significant side-effects, but they told me I should expect certain difficulties in the following 10 days (and maybe some longer-term ones).

@cancertrapped Hi tbh I didn’t even really know I had it but found out it had spread to brain & from first learning 2/3 weeks started radiotherapy every day so bit of a whirlwind but I don’t remember any symptoms just scary as fuck but this was 4 years ago it’s better now more targeted

@CANCERW47048601 Thank you! How long after the radiotherapy sessions, the side-effects from radiation where the worst?

@cancertrapped Yh I got a lot of damage from radio therapy but I think immunotherapy worked wonders of got radiocronosis so there def right unfortunately but let’s hope it all works like me ur having every treatment possible so just stay strong & positive F U Cancer

@sandyd77 Thank you!

@cancertrapped I wish you comfortable days. Be good to yourself.

@Sadacus Thank you very much. Probably I'll have a number of whole brain radiation sessions soon, and keep having chemo and immunotherapy treatments. I don't think it is going to work but providing a few weeks or even days of hoping and peace to my parents makes it worth doing it.

@cancertrapped I hope the doctors find a treatment that helps. So sorry for your suffering. I hope you are supported and cared for…and things get better.

2.5 months ago: brain mets further increased in size, had crazy symptoms. Then a risky craniotomy and a way too challenging recovery period. A month ago tumor markers got into normal range (lowest ever), no symptoms. Until a few days ago: sudden vertigos, numerous new brain mets.

@AlterCancerCare I was not getting any anticancer treatment that period, it was during dexamethasone tapering period after craniotomy. Actually during that period all scans I had (brain, upper & lower abdomen, thorax) where showing improvements (unexpected as I was off treatment ~2 months).

@cancertrapped What treatments you took before the timing of tumor markers getting normal?

@JJSingleton1 @CancerCanuck @ThanksCancer Heartbreaking. RIP CancerCanuck...

My brother my friend I'm going miss our talks our connection and watching you do so many incredible things in this cancer space I know they won't end just because you won your fight Your memory will forever be strong I'll take @CancerCanuck everywhere I go Fly High an Fly free

Today I woke up and I wasn't to able to speak. Thankfully somehome my father understood me and took me to the ER. Now they're trying to reduce the edema. I can think but I cannot talk clearly. I don't know if this is my last tweet but I thank you for your support all these years.

I'm trying to cope with all the things that are happening, and make decisions that make sense, but it's getting really hard.

On top of cloted liver vessels, auras & a suspected infection that got me hospitazed, the neurosurgeon that did the Cyberknife 8m ago saw an MRI I did 9d ago and said there's relapse in one of the mets and that my only option is brain surgery (provided a surgery is feasible).

[I understand it must seem strange why I share these thoughts but (1) writing/summarizing helps me (re)organize them, (2) one day my family will read them and might explain my behaviors, and (3) often I get feedback from people that helps me rethink the situations.]

The toll that my loved-ones are paying just because I happened to be in their lives is unfair and, to me, unacceptable. The 'other' alternative is out of the question for a number of reasons. So, nothing really new, other than that the 'trap' I'm in is getting more complex.

It's day #3 since my admission to the hospital. This time an infection is suspected but no test has confirmed it. I'm sleepless and alone (I asked my loved-ones to not visit me at all but my wife brought me some stuff yesterday and stayed for some time). I'm here for ...

@katievscancer I do that too but actively try not to. Not because it doesn't have anything to offer (on the contrary probably). It's just that unless you have some kind of control over it can get very consuming and somewhat depressing, trapping me further into circular thoughts.

Just wondering how I found myself in this cancer nightmare.