Quantcast

The "Mental"


#1

Greetings,

Please allow me to vent an issue only a Sarcoma or cancer patient can relate to.

First off, if you're interested in my specific case, feel free to check out this link.

http://www.nwsarcoma.org/index.php?option=com_content&view=article&id=388:jesse-s&catid=35:patient-profiles&Itemid=77

The mental toll Sarcoma plays on it's victims is one that can be compared with any war like scenario. PTSD is something that should possibly be recognized as a real disability issue post treatment. Because, as we we all know, you're never really "finished."

After my treatment, I felt compelled to write this to my equals who are probably the only ones that will understand how frustrating it is that the oncology community during the experience usually ignores something oh so important, your emotional state.

With the insane amount of money the medical community receives per patient, every clinic where we get treatment should have a staff psychologist assigned to meet with each patient. This should be standard procedure just as much as having to check a white cell count.

Instead, at least in my case, you are left to figure out your mental state on your own. Find a support group or a friend that can help. When you're in "la la" land and can't really think straight, going to the supermarket is hard enough! Your mental state should be the partially the responsibility of the medical community. Granted they are focused on the specific potions and surgeries, but there is no reason that mental health professionals are not directly assigned to each case from the onset.

In my case, when I was at UCLA medical center post surgery, someone should have alerted the psychology staff that a new Sarcoma patient had just come in, and that they should be seen ASAP. This never happened. I found the Wellness Community during treatment on my own as well as my mentor Kirk Souder. Without them and my mother, I don't think I would have made it through.

I will also tell you that post treatment, now six years no mets or re-occurrence, I think of myself as someone in a unique position to help others in a mentoring role. Unfortunately, having reached out to many Sarcoma non profits that we are all probably aware of, I have yet to help one single person.

Yes marathons to raise money are important. Raffles and such, but the mental... I wanted to help my com padres see that I'm still here and thriving. This was oh so important to me when I first started out. I remember getting my port installed thinking, "is this really happening?"

So I finish this post a bit frustrated knowing how many children I'd seen suffer every day during chemo that I could be helping throughout the years. I've talked and met with individuals high up in this space, and what I see is a general focus on fund raising, and a disconnect with the mental.

Best to all of you.

-Jesse Singer


#2

I've only been in remission for 4 months, but I hope that I can do the same. I don't want to drop out of the forums or mailing lists just because I'm in remission. It's important that survivors are available to assist those who have recently been diagnosed with sarcoma.

Personally I haven't really had any mental issues that I can think of. Sometimes during chemo I feel like my brain is cloudy, but other than that I've been ok. I've had a great support network to rely upon. It was actually pretty amazing. I found out that I had synovial sarcoma when my wife was 5 months pregnant with our second daughter. Without the assistance of friends and family, I don't know what I would have done. I hope that I can provide that same support to others.


#3

(Dan's wife Katie here...still afraid to log out from Dan's log in b/c he probably doesn't remember his password.)

Check out Imerman Angels. They are a group that pairs up survivors with people fighting Cancer and/or their caregivers/support person. Dan and I both have had mentors and mentored people who have had Synovial Sarcoma. They do some amazing work setting up people who have very similar situations. Sounds like you would be a great support to someone dealing with a new diagnosis.

Keep posting to this group too. It is really encouraging to hear from people who are out there who have been in a similar situation.

Dealing with Dan's mets now has been a huge mental challenge... and I do liken it to PTSD sometimes...especially around the time scans are approaching. The best part is that right now he feels good and is leading his regular life so on our very best days we are able to put his cancer a little further down the line of the list of things we are dealing with in a given day. Never too far out of our mind...but further down the list... We are very thankful.


#4

I hope there are more people as your self that will come out and do this. My husband has been at this since 08. He's really out of options right now on chemo. Thery are trying one he has done already 2 times to stop the bigger tumor in his from growing. They have told us he is uncureable and will need chemo the rest of his life. Well were getting to that point where our eggs are all out of the basket. I am so happy your doing so well and stay in touch with the rest of the sarcoma world.

God Bless

Dora


#5

Sean,

First off good for you! Second, I don't know how anyone can go through this experience without having or needing some mental support. Watching young kids die slowly was a mental issue for me personally.

Regards,

-Jesse


#6

Dora,

I am so sorry for your pain. If there is anything I can do, please let me know. There are no words to describe what it's like to have a loved one suffering and not being able to "fix it." This I do understand.

Katie,

Thanks for the advice. I've gotten a bit burned out on "chasing" organizations to help others. I think it should be the other way around...

Just recently I took time off from work to meet with OHSU hospital where I get scans. I think they were very intimidated because of possible legality issues...

As for the Sarcoma Alliance, I reached out to the for two plus years and never once did I end up helping a soul.

Either way, I am here if folks do need it.

-Jesse


#7

Jesse, it's funny because I feel the exact opposite way as you do when it comes to psychologists. Through my treatment, a psychologist came to see me several times and I honestly felt like running away from her every time. I just don't feel that a person that hasn't had my experience can understand me no matter how much specialized education they got. In addition to that, I was offered to participate in a "Cancer Anxiety Study" seeking advanced-stage cancer patients. Incidentally, it happened not long after I read an article about psychoactive drugs being the top-selling class of drugs in the US. In addition to that, I see a lot of articles studying the impact of cancer diagnosis on the mental states of patients. I don't see as many articles studying how to fight the disease. It looks to me like the companies that are selling psychoactive drugs are looking at cancer patients to expand their market... My personal experience is that you have to accept the inevitability of your death and the fact that you cannot control when it will come before you can learn how to fully appreciate life and get your mind at peace. Drugs or psychologists won't do that for you.


#8

Elodie,

Honestly, if we're having a healthy debate about the conspiracy behind psychology and drug companies, then I would throw the chemo drugs in as well. As we all know, it's a dog and pony show on should I or shouldn't I juice when diagnosed with SS. It's a systemic problem that profit and healthcare play together. Profit does not belong in healthcare period. Some call this socialism, I call it humane.

I'm glad to hear you and some others didn't need any professional mental support during treatment, but I honestly would wager you as a small figure in the grand scheme. SS is a traumatic experience and should be respected and treated as one just the same as any other trauma.

I do agree that people who haven't been there may not understand. I totally agree. However, I still think psychology should play a major role in treatment not as an afterthought, but as a essential ingredient to ones well being.

I also watched many eating fast food while getting chemo. Taco Bell with your Ifex? A diet specialist should also be mandatory in my opinion. For the prices we pay for massive amounts of chemo, and supplemental infuse drugs, I don't see why anyone wouldn't agree that psychology and diet should be a mandatory component during treatment.

I do agree that many psycho active drugs may be being prescribed to hastily to cancer patients, but I honestly think they fall into a category that really fits the bill for folks needing chemical assistance with heavy issues like anxiety and depression. I know I did...

Either way and as always, I respect your opinion:)

-Jesse


#9

When I got chemo last year, I did six cycles of adriamycin/ifosfamide. I had to be in the hospital for 7-8 days straight. My wife brought me every single meal, because the hospital food was so atrocious. I really don't understand why nutrition isn't a bigger issue at hospitals.


#10

Jesse, love your too the point post. After my chemo regime I was struggling coping and the hospital provided a psychologist for support and they were very good. It didn’t take long and they just provided strategies for sharing and dealing with stuff and I would recommend if anyone is struggling to seek professional support. All on the forum have dealt with and continue to deal with tough medical procedures, uncertain futures etc. and amougst this is fear and grief. It’s ok if mentally this gets on top of you now and again, and this is part of the healing process. The emotional roller coaster in many ways is tougher than the physical recovery.

Good luck and go well.
Kia Kaha
Gary


#11

I just ordered a juicer an gonna start making more healthy drinks with lots of veges and fruit. I dont really know of a diet he should be on we have asked before and they didnt give us info? What do you all suggest? Where Paul is right now dont know if he will want to he will just probably tell me to let him enjoy what he has left, dont blame him.

Dora


#12

My vent also included the non-profits like the alliance and others that I think have done a poor job of peer

mentoring . This is why we need sites like this. Very well done UI BTW.

Way too much focus on marathons and wine tastings. There is plenty of money for research if the institutions choose to do it. We don't need to hobble around for them.

The Sarcoma non-profits are leaning on the internet forums insead of getting out into the field and helping people in the wards.

-JS


#13

May be, you should try to volunteer directly at a sarcoma center. When I had my first treatment in 2003, there was a woman who had lost her son to sarcoma who was a volunteer in the ward. She would come every day to visit patients and asked if they need anything. It's a nice way to help if you have some time to spare...

Regarding food, there are sometimes dieticians in cancer centers but they remain focused on recommending the appropriate food for infection or nausea prevention rather than the appropriate food to increase chemo efficiency or delay cancer progression. There is just not enough clear evidence that food has an impact on specific disease progression. This may change eventually though as more studies are coming out looking at the effect of some types of food on the efficiency of chemo for example.


#14

Dora, Make sure it is a press juicer the others are not good. I recommend the Hurom Press Juicer, It costs about $400 but will be well worth it. You can get recipes for Cancer in a book by Gerson. This is the best thing you can do to keep the cancer away and even get rid of it. God Bless!

Synovial Mom


Dora Oquendo said:

I just ordered a juicer an gonna start making more healthy drinks with lots of veges and fruit. I dont really know of a diet he should be on we have asked before and they didnt give us info? What do you all suggest? Where Paul is right now dont know if he will want to he will just probably tell me to let him enjoy what he has left, dont blame him.

Dora


#15

Thank you


#16

Elodie, with much respect. You truly are what you eat...


#17

Is anyone familiar with the website www.annieappleseed.com? This is a holistic approach instead of chemo. We are so brainwashed when it comes to traditional medicine........I really don't know what I would do if I was faced with the decisions that you all have been faced with. I lost a sister 10 yrs ago to SS. Chemo did absolutely NOTHING but steal from her bank account and then she died. I sit today feeling that I would tell chemo to "take a hike" but as you all know......until I walk in those shoes, I don't really know. It's a frustrating journey. We went for alternative therapy and obviously it didn't save her life, but it surely allowed her to find PEACE in dying. What more could we ask for if we know that the end is near. Bless you all,

Marie



ufonaut said:

Elodie,

Honestly, if we're having a healthy debate about the conspiracy behind psychology and drug companies, then I would throw the chemo drugs in as well. As we all know, it's a dog and pony show on should I or shouldn't I juice when diagnosed with SS. It's a systemic problem that profit and healthcare play together. Profit does not belong in healthcare period. Some call this socialism, I call it humane.

I'm glad to hear you and some others didn't need any professional mental support during treatment, but I honestly would wager you as a small figure in the grand scheme. SS is a traumatic experience and should be respected and treated as one just the same as any other trauma.

I do agree that people who haven't been there may not understand. I totally agree. However, I still think psychology should play a major role in treatment not as an afterthought, but as a essential ingredient to ones well being.

I also watched many eating fast food while getting chemo. Taco Bell with your Ifex? A diet specialist should also be mandatory in my opinion. For the prices we pay for massive amounts of chemo, and supplemental infuse drugs, I don't see why anyone wouldn't agree that psychology and diet should be a mandatory component during treatment.

I do agree that many psycho active drugs may be being prescribed to hastily to cancer patients, but I honestly think they fall into a category that really fits the bill for folks needing chemical assistance with heavy issues like anxiety and depression. I know I did...

Either way and as always, I respect your opinion:)

-Jesse


#18

Marie,

My heart goes out to you regarding your sister. I have lost many friends to this killer. That being said, I must reiterate that everyone is different and will have a unique experience.

Why did I live and my friend Ian (17 yrs old) die? There is no reason. Chemo or not is a personal and calculated decision that one must make on their own. I do not give out alternative therapies unless friends are past the point of being helped by western and have no other route to try.

Regards,

-Jesse


#19



Dora Oquendo said:

Thank you


check www.annieappleseed.com and you may find some recipes or someone on that site that can help you.


#20

Jesse, sounds like you ate an angry bear ;-)

ufonaut said:

Elodie, with much respect. You truly are what you eat...