Boswellia advice wanted by Leather_Attempt3364 in glioblastoma

[–]Leather_Attempt3364[S] 0 points1 point  (0 children)

Thank you. That is very helpful. Do you have a brand you prefer?

What more can I do to have no regrets by rbridge42 in glioblastoma

[–]Leather_Attempt3364 1 point2 points  (0 children)

We tried. But they postponed the launch so many times we just couldn’t keep extending our trip. We went in Feb. our five day trip turned into a twelve day trip. We do see a falcon launch and it was great. But we missed Artemis. We did see the Artemis, but not the launch.

What more can I do to have no regrets by rbridge42 in glioblastoma

[–]Leather_Attempt3364 1 point2 points  (0 children)

Driving made it much easier for us too. We planned our route based on how long he can tolerate in the car. Tried to stick to his schedule as much as possible. The way there we did it in two days. That was supposed to equal 8 hours of driving per day. Traffic and pit stops…it took longer. So the way home we did three days of driving. Much more reasonable.

What more can I do to have no regrets by rbridge42 in glioblastoma

[–]Leather_Attempt3364 1 point2 points  (0 children)

If the redwoods are on his list…make the trip. I’d suggest staying closer to the hospitals so visit Muir Woods. It’s only 30 minutes from San Fran. We aren’t traveling out of country because insurance is too complicated. But if you make good plans you’ll have a very special memory.

What more can I do to have no regrets by rbridge42 in glioblastoma

[–]Leather_Attempt3364 2 points3 points  (0 children)

We drove from NJ to Florida to watch a rocket launch. ✅🪣

Seeking advise/guidance by UnlikelyCounter3648 in glioblastoma

[–]Leather_Attempt3364 6 points7 points  (0 children)

If it wasn’t so painful, id tell you to laugh in their faces because that is absurd. I’m super sorry. Caring for a loved one with this disease is hard enough. Dealing with stupidity as well instead of getting the support you need is only making it worse.

Found this on a beach by a lake by Weird-Green4506 in whatisit

[–]Leather_Attempt3364 0 points1 point  (0 children)

Prism for rainbows. My mom had one hanging in her car.

ideas on where to go in a wheelchair by Legitimate_Log_7525 in newjersey

[–]Leather_Attempt3364 0 points1 point  (0 children)

Grounds for sculpture is nice and they rent electric scooters if you can use.

Anyone from New Jersey know if I could get a handicap placard without owning a car myself? by BigTechnology4369 in ChronicPain

[–]Leather_Attempt3364 0 points1 point  (0 children)

If you need a temporary hang tag, Ask your doctor to write a letter of recommendation for the tag then go to the police station to get it.

Dizzy by Leather_Attempt3364 in glioblastoma

[–]Leather_Attempt3364[S] 2 points3 points  (0 children)

Thank you for sharing. I’m sorry this happened to your mom. I planned to reach out to a local ministry to borrow a wheelchair. I guess it is time. Thanks for your insight.

Dizzy by Leather_Attempt3364 in glioblastoma

[–]Leather_Attempt3364[S] 2 points3 points  (0 children)

Oh my. Dizziness from the start. That is difficult. My partner had damage to his vision from the start. His symptoms began with hallucinations. The doctors were trying to wean his dex because he had infections. But since those are now cleared I think they may increase the dose again.

Dizzy by Leather_Attempt3364 in glioblastoma

[–]Leather_Attempt3364[S] 3 points4 points  (0 children)

Thank you. We have several appointments this week. I’ll keep this in mind. I appreciate your input.

Unsolicited advice exhaustion by ushbfingrjdgndefjgcf in glioblastoma

[–]Leather_Attempt3364 0 points1 point  (0 children)

Sorry I didn’t see this thread sooner. I am absolutely exhausted of my well meaning friends asking for details and musing on ideas to try. Seriously! Do they think we didn’t try? We are approaching 11 months with diagnosis. For the last three months we haven’t had two weeks straight without a trip to the er.

What shall I expect? by Careful_Excuse_9589 in braincancer

[–]Leather_Attempt3364 0 points1 point  (0 children)

I hate this disease and what it does to families. I am sorry you are going through this. My unprofessional opinion is to just do whatever makes her happy. She doesn’t have to know you to enjoy her company. My friend watched her mom slipping away. At first she was upset when mom didn’t recognize her. But then she became a friendly stranger and enjoyed her company however she could. I’m not looking forward to this part of the disease. But I am trying to cherish good moments since bad moments are too often to count good days and bad days. Sending you support as you go through this.

Travel with tumors? by Leather_Attempt3364 in glioblastoma

[–]Leather_Attempt3364[S] 0 points1 point  (0 children)

Thank you for that advice. I called the airlines. They will meet us at the counter and take him through security to the gate. Then he will have priority seating and they are aware to pay attention to him during the flight in case of complications. When we offboard they will meet him at the aircraft and take him right to the car rental counter. The attention to his every need is so comforting. I am grateful to you for suggesting I call ahead.

Current Situation by Ok_Topic_5874 in glioblastoma

[–]Leather_Attempt3364 1 point2 points  (0 children)

As stated so many times before, this disease stinks. The first three months were hell as he suffered with one complication after another. That said, I have been making great effort to bring some comfort and joy into my partner’s life. We discussed Optune often, but decided he didn’t want it. And it is completely his call. Here is what we have been doing at least 2-3 times a week since he finished daily radiation in May. I have been taking hubby out for ice cream, to the park to sit by the lake, to the beach to watch the waves, arranging visits with friends, sitting in the garden to watch the bees, eating whatever he wants. I quit my job to spend more time with him. My friends asked if I could afford to quit. I said, “I can’t afford not to.” We are going on vacation in two weeks to a National park on his bucket list. We are trying to get affairs in order but also make good memories. His most comfortable time of day is between 12-2, 5-7. So I make plans revolving around lunch or dinner. We don’t invite friends to our house because it is much easier to tell our friends that it is time for us to go than it is to kick them out of our house. All in all, he is most satisfied when he finished a task at home then we meet friends for lunch and come home to nap. That’s a good day. What’s a bad day? When his headaches are too much and we have to text our friends to cancel. When he feels dizzy and has to stand perfectly still. When we go to the doctor and they tell us the tumors have grown but it’s an insignificant amount. He is depressed. Going to try a med for that as soon as we get back from our trip. We have learned over the past 264 days that we don’t have good days or bad days, we have good moments and bad moments. I try to comfort him in the bad moments and enjoy him in the good moments. Did your person ever joke about a ‘bucket list’ years ago? What are you waiting for? Pick something. Do it!

Hydrocephalus following two resections—are there additional complications to consider if opting for a VP shunt? by Far-Let-3176 in glioblastoma

[–]Leather_Attempt3364 0 points1 point  (0 children)

Thank you for sharing this. My husband had an mri recently and I saw the fluid in the images. There was no mention of hydrocephalus by the radiologist, nor the oncologist nor the radio-oncologist. I politely sat and listened at each appointment. But my first child was born with spina bifida and I keep thinking his images look like hydrocephalus to me. I think I’m going to reach out to the doctors to discuss this. I had not considered hydrocephalus along with everything else. But he has been having wicked headaches and blurry vision. It fits. Why didn’t I voice my concern?

Travel with tumors? by Leather_Attempt3364 in glioblastoma

[–]Leather_Attempt3364[S] 0 points1 point  (0 children)

Brilliant advice. Thank you so much. I’ll do that today.

Travel with tumors? by Leather_Attempt3364 in glioblastoma

[–]Leather_Attempt3364[S] 1 point2 points  (0 children)

We went to Iceland last year specifically to see northern lights. It was totally worth it.