Post surgery recovery timeline

Hi all! First, thanks for all the prayers and support. I am 8 days post surgery and feeling ok, still very tired and sluggish and have some residual swelling/bruising and pain but nothing like it was in the hospital. I am having trouble sleeping and my team said it's normal, due to the steroid. I was wondering what recovery was like for you...when we you able to go back to work? I can't drive due to my seizures and have a hard time coping with that. Also I got the pathology report back today and the official report is a mixed grade III/IV glioma but they are treating it like its all grade IV GBM as that is what most of it is. Have any of you have mixed grade rumors? What does this mean exactly?

Good to see you again! Congratulations on what sounds like an excellent recovery from surgery so far. In my sister's case she never returned to work; she went on disability, which is pretty common. It all depends on whether the skills you need for your job are those that the tumor interferes with. In her case they were. But you won't really know that yet, this soon after surgery. A few people here have mentioned having mixed III/IV glioma. It's my understanding that the treatment is applied for GBM IV in that case.

You seem to be coping amazingly well. Congrats on getting through the surgery. 

What lies ahead is a completely personal pathway.  Even if you have full use of cognitive and physical function, its going to take a while to recognise and develop strategies for dealing with changes to your neurological functioning (mood, memory, decision making, thought processes etc) This whole diagnosis stuff also takes it's toll emotionally.  This is a life changing event, a fork in the road.  If you want (or need) to go back to work urgently, that's fine, there are people out there that do go back to work, but give yourself time to adjust to your new world.  If you can manage financially to not work while you are receiving treatment, then dont rush back to work.  Take time.  Smell the roses. Enjoy your family.  You need to learn your abilities again, because you will be affected by surgery, radiation and chemo. One of these days (and god willing, no time soon) you will be on your deathbed and I bet your last wish isn't that you wish you went back to work faster after your brain cancer diagnosis.

I don't believe it's helpful for me to comment on your diagnosis, that's an issue for you and your treating team to discuss. Aside from that, obviously grade 4 tumours have a worse prognosis than grade 3.  I've seen a study that had grade 3 astrocytoma survival at 30% at 10 years!  So don't write yourself off just yet.  A lot could happen in 10 years - and even if they don't find a way to cure us, ten years is too long to live preparing for death.  Having this damned thing in your head is just a thing you need to cope with in your life, and that has its challenges, but in the end it's just one experience you will have in the fullness of your life.

Timeline for everyone is different. Best advice I can give is do what you are capable of. Don't push yourself too much but (maybe) more importantly don't be fearful.  Not being fearful is a tough one for all of us at times but at the end of the day living your life in fear is no life at all.

For me I began working from home a few days after surgery and went to the office about week after that. I wasn't at full capacity but did what I could. By in large people understand this.

I was however very lucky. No critical physical or mental deficits from the surgery or treatment. Emotion was the hardest part for me and sometimes still is. This sort of trauma brings to the surface a lot ofself doubt, insecurity and general existential angst

Hux...

Right now I am trying my best to take it easy and enjoy life with my partner (soon to be wife!) and beautiful young girls...yes, I said wife.  Being as we live in NY, one of the first states to legalize gay marriage, we wanted to do it long ago, but felt guilty about it since so many of our friends in other states aren't offered this privilege.  However, with my diagnosis and the shock and slap in the face of how precious life is, we are planning on getting married within the next month (hopefully before radiation/temodar starts...)

 

As for lingering effects, the biggest issues I'm having are continued mood swings, sleeplessness, short term memory issues, anger over the loss of driving ability, and a slight lingering tremor in my left hand, but nothing major. I teach dance lessons (ballet, tap, jazz) to school aged children and right now I'm not up to it, but I'm hoping I will be able to get back to it...thankfully we are a two-income household, so if I can't get back to right away, we'll be okay financially.

http://wishuponawedding.org/

I just wanted to pass on this website to you.  My husband & I got married in the middle of treatments, and it was hard.  I found out about this organization after our wedding.  I would contact them :) 

Congrats on the wedding!!!

A positive event like that is just what you need.

 

Hux

 

My wife returned to work two weeks after completing radiation therapy, which was a total of three months after her surgery.  If you are like most people radiation will cause much fatigue so you should plan on taking it easy during that period.  Also, your career requires a lot of energy and my advice is to start slowly.  My wife was energetic like you (treadmill, push-ups, sit-ups) but started back at her exercise regime too early and at the same level before her surgery which was a huge mistake.  It resulted in her passing out from exhaustion and also damaging her shoulder.  Especially right after radiation you are likely not going to have the stamina that you had prior to your surgery.  Start slow, limit yourself, build yourself back up to your pre-surgery level.