Cancer treatment

[LoveandRage]

So my husband and I are traveling in two busses together and I am having significant health issues. It looks like I’m facing a cancer diagnosis. I was seen at a hospital ER and followed up with their transitional care clinic which mostly serves their local homeless population without regular doctors. The doctor I saw has said I have a textbook case of carcinoid syndrome (waiting on labs) and we need to stop traveling and find me a regular doctor to continue my care and coordinate further treatment (chemo, surgery, most likely).

My husband is resistant to stopping our travels and has asked me to reach out and find out how other travelers deal with such situations. Does anyone have any ideas for us? I’m really at a loss here.

[TheHubbardBus]

Best wishes and much love to you and your hubby.

If it were me (and it's not, so what I say doesn't really matter), I'd make my initial appointment with the specialist, ask them if travelling is reasonable/practical/doable, and then go from there.

[LoveandRage]

To clarify, We are really hoping to hear from other full time travelers who have faced a major medical issue while traveling. Clearly, I can’t start chemo in one location and just get it wherever I happen to be like a prescription. And I’m already at the point where moving every one to two weeks is too much. But I have heard that sometimes hospitals have parking for RVs for people who travel to that location for a specific treatment. For example. So, Anyone with experience of a major illness or medical issue on the road that wants to weigh in on their experience would be super helpful to us right now.

[jamesdc1]

Not travel related but...

When it comes to cancer, I would get to MD Anderson in Houston.

You are never "waiting for labs". They get everything done fast.

Wish you all the best.

[LoveandRage]

Thanks James. Interesting idea. They appear to have a neuroendocrine department. I will look into it.

[Drew Bru]

First of all, I hope this is just a scare and that what you're dealing with is not a really serious issue. I've not had medical issues while traveling, but I can certainly relate to the problems of moving every couple weeks. A nice thing about being nomadic is that maybe you can find a really good medical team (like Mayo Clinic or something) and relocate near there instead of just hoping you local hospital knows what the hell they're doing.

If the tests show that you have this Carcinoid Syndrome it seems like a real bear to treat. It doesn't seem feasible to be a nomad and deal with cancer treatments. You'll need support and stability. I wouldn't even consider traveling, but would find family I could stay with or find a place to long-term park that was near a good cancer facility. Trying to travel during a cancer treatment regimen is insane, IMO.

[Veloc]

I've not done this as I've not yet gone nomad, but I am a firm believer in having a plan for all eventualities. For the "medical issue requires a long term stay somewhere" problem the plan would be to get a small piece of land within a reasonable driving distance that I can park the bus on, and continue living in the bus. Ideally, I'd look for a place with a derelict mobile home that the owner is selling as a place that had a mobile will have water and sewer. Power might be a problem, but if the bus was self-sufficient power-wise then all you'd need is a water in/water out setup. Being in a bus, you have the advantage of being able to go where the best treatment options for your particular problem is. No idea on your financial situation, but this plan might tie up quite a large chunk of cash, but when you've resolved your medical issue the land can be resold to get the money back. Or, you might just decide to keep it and use the place as a home base. Good luck.

[Samarath]

My wife and I bought our bus for the sole purpose of getting her to Dana Farber in Boston because most doctors suck. We can't afford to actually pay rent and we have 3 dogs, and so we thought this would be a reasonable alternative. I will say that this entire adventure has been stress filled and not what I would consider a healing environment. On that note, our conversion isn't complete and we are dealing with other mechanical issues, so I am sure that has played a part in my own sense of overwhelming duty to get her to appointments without facing a major catastrophe.

If you don't have a fully converted bus, have a place with full hookups to park, or the funds to stay in a room for a couple of nights every two weeks, then I wouldn't try it. I will also encourage my significant other to chime in.

[peteg59]

Sorry to hear of your diagnosis.
Hopefully you have better news today.

I'm surprised to hear your hubby wants to keep going travel wise, and not focus on your situation until it is resolved!

Best to you, and him, going forward.

[Sehnsucht]

First of all, shame on your husband! I hope he's not as much a heartless bastard as the initial post makes him out to be. By all means your health is priority one and if he can't see that then ... Well, I'll leave it at that.

Anyways, second of all, family is going to be the most important factor in treatment and recovery. If you have family with whom you can reside temporarily even if it means parking the bus that's going to reduce the stress of any potential treatment tremendously. If anyone here has had chemo they can attest that you don't just drive yourself home, not even in a Honda let alone a bus.

There are great cancer treatment centers in most major cities but the key is determining which are good and then getting into them because if they're good they're probably booked up. IF there is no family in the equation THEN relocating to a distant city with nationally recognized treatment is an option but you'll still have the issue of trying to go through this alone or at least hopefully with a husband who finally comes to his senses.

Having seen this play out firsthand with my own grandparents, there's a decision we each must make for ourselves and our loved ones who may go through this with us. Surgery can have positive results. Chemo if doctors are honest is a fingers-crossed approach and probably at best buys the patient months but they're not the same quality of life as before. You will need to ask yourself if prolonging your days but those days will be spent in hospitals or at home lacking any energy to do anything more than the most basic life skills is a life worth living. Sorry if that sounds morbid but it is reality if this is truly a cancer diagnosis. My grandmother lived two more years with the cancer, no chemo, no pain, living her daily life (which granted wasn't that strenuous to begin with) and died at home at peace on her own terms. My hope for you is this isn't that period in your life but it will be important to be prepared for that decision if it is. Best wishes and please keep us posted.

[Booyah45828]

Originally Posted by TheHubbardBus

How about we keep this focused on the OPs question.

Your original post was well said.

I'm disappointed you removed it, but I understand why.

I've also got immediate family and friends that are a decade or more cancer free because of standard treatments. I'm not sure what really qualifies as a standard treatment, because they all received a treatment regimen that was suited to their particular needs.

I also know people who did/ are doing the natural thing. If it works, great! Some claim success, others were ill-fated, which is what you'll also find with "standard treatment". I read once about cancer disliking an alkaline diet, and people have cured themselves by switching to that.

And to the OP, I can't really help you. I don't think a mobile schedule would be advisable if you were looking at beating this, though. I think I read that your husband can't modify his mobile lifestyle to accommodate your treatments? If so, you have my sympathy on that. I feel if it's worth the fight, set up home somewhere stationary and get the treatments. Or live out the rest of your life as you live it now. That's a hard decision only you can make.

[Polarweasel]

Cleaned up. Keep the fighting and politics out of here.

[Nick5272]

For future readers like myself, would you mind sharing what you ended up doing friend? I worked as a hospital chaplain in an oncology ward and saw how heavily chemo can weigh on a patient. Personally I'd not want to travel while also undergoing such trials but I'd love to hear what you wound up doing if you're comfortable sharing.

I do hope your treatments have gone well. I'm sorry on behalf of those who brought extra trouble to this thread when you already had enough to deal with. Thank you for sharing this with us.

[Tin Roadtube Vagrant]

Mayo Clinic System, non profit, better if you have any form of insurance or coverage. I had a similar experience in potentially needing up to 30 days stay for a Stereotactic radiation procedure for my brain tumor and needing a place to live temporarily. They have a bunch of RV parks locally and a lot of low-cost temporary housing complexes just because so many people travel from all over the world for treatment there, more than an average university type hospital. You still need to walk or uber, you won't have a bus parked on location. In the end the temp housing could prove cheaper than a KOA by my calcs.

Thoughts and prayers. Been there. Lean on faith. Seems impossible, but push out worry and anxiety because those cripple your mind/body/spirit faster than the cancer.