I have read about palliative care and preparing for end o
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I have read several of your blogs were you talk about palliative care and the need to plan for end of life. Even at the start of a mesothelioma diagnosis. As a mesothelioma patient I understand the need for it and why, however my doctor hasn't been very helpful. I need some information on what titles/position of a person offering palliative care. Where I should look? What is the correct terminology to ask my doctor? The right questions so that I can plan for palliative care. Kind of like if I had to look up someone in the yellow pages, where I would turn?
So that's a very good question and like Alley said a lot of the hospitals and medical facilities now have a pain and palliative care department. And often times when people are diagnosed with cancer, not just mesothelioma, they are part of the team as well, and so ideally if you can bring in the pain and palliative care group right at the onset of your diagnosis and start building a relationship with them, because they will get to know you just like everybody else; the medical oncologist, the surgeon, whatever your team is comprised of. They'll develop the relationship with you, and they'll learn what works for you and what doesn't work for you and if the pain gets better. They really are very very just a great asset to have on your medical team.

Yeah I think one thing people when they hear pain and palliative care they think Oh my God it's over. They think I'm not going to live. And actually palliative care is control of symptoms. It's to make people as comfortable as possible with the symptoms. It doesn't necessarily mean that the end is near. Their focus is to manage the symptoms, and the symptoms of mesothelioma; the shortness of breath, pain, chest pain. So they can have regimes that you know sometimes after surgery you might have a post-sternotomy neuralgia or something like that. They're experts in the field. So where would you go? I think the...like Lisa said they're usually part of all of your teams, but if you're needing to go to a mesothelioma specialist and now you're being followed by an oncologist ask your oncologist. They would know, because the oncologist they work pretty closely with them, because the whole thing is to...the other thing that palliative care can do to is talk of the physiological pain; the pain of having mesothelioma and having...

The anxiety.

-to deal with it. Yeah, because the anxiety if you're short of breath you get anxious, but you get anxious before you get short of breath. They can work with you. And again coming back to what I said before, if you have a notebook and you keep very good records of the pain, when the pain started, when it was its worst that can help them get down to it, because it's tricky trying to figure out the pain regime. And everyone wants you to be as comfortable as you possibly can, and the way that they can do it is you're an active part of it; you come in with your notebook and say I have continuous pain and they say, "okay for continuous pain we'll do this". Whereas maybe you're having a sharp neuralgia. Maybe you're having peripheral neuralgia. Maybe even if you have to stop the cancer treatments or the chemo treatments because it's just too painful and debilitating.
But in order to sort that all out you will be the expert on it. The patient will be the expert on it, and then explaining it to the specialist could really help you. But I would say your oncologist, your medical team like Lisa said. You want to add anything?

So the one other thing I wanted to add which isn't really about palliative care, but another person I think should be on the team is probably a social worker. Somebody who can just kind of just sit with you and kind of figure out where you're coming from, where you are emotionally, maybe you just need someone to talk to, or maybe you need some help with I don't know maybe with lodging or something, and I think the social workers are really worth their weight in gold. So again I would get hooked up with a social worker as well, because this is going to be a long road, and the more support that you have and the more expertise you have your road is going to be that much smoother.

Well that brings up another good point Lisa; caregivers and caregivers support. Caregivers are...most of the care is given now not in hospitals, but it's given by loved ones and family members at home. And that's a huge burden. If you're not used to...it's not a burden probably isn't the right word, but it's a huge responsibility. And if you're not used to...even if you are used to it, it's virtually impossible to take care of someone 24/7 and maintain your own health.
I mean there's a lot of studies out there that say people that take care of someone and go through a long journey like this and then at the end if the patient dies usually something happens to their health within a year. They're not sure of the reasons, but they expect that is probably the stress, collective stress, of taking care of someone and going on this emotional journey with someone. It just takes a toll. So if you're the caregiver you have to remember to take care of yourself. You can't totally...you just have to make time for yourself, and that's something that the families could do to. One of the first questions was how can we support my cousin. Well maybe you could take out your cousin's wife or your cousin's husband. Just go out to lunch, or just do something to get them off of the whole thing. Caregiver's stress is a huge thing that's being studied and just actually being recognized in the last couple of years. It's huge.

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