David admitted tonight that he's been so unbearable because he's scared. VERY scared. He had a huge lump appear for about four days in the right side of his chest. It's been gone for five days now. After the lump disappeared he began having a 'woom woom woom' feeling in his head that only provides a few seconds of relief before beginning again & what he describes as tension / pulled neck muscle feeling in the base of his head & neck (right where his hair fell out from Radiation). He also has a fever and his skin has a slightly yellowish tint to it. Beyond the feeling weak & dizzy with a slight fever for the past few days, the other symptoms are news to me. He didn't mention because he didn't want to worry me...

We took in a mother cat who had babies about 2 months ago. He didn't mention because he thought the lump could be because of the cats. (I had cat scratch fever as a girl, but the lymph nodes in my arm pits swelled up - not in my chest). He's also been swimming at the pool in town a few times, and could have possibly picked up an infection there and / or could have water trapped. Since his Maxillectomy water would get trapped, until we discovered swimmers ear drops which dried out the water almost instantly. So in summary - he didn't mention the lump or the feeling in his head & neck because he didn't want to worry me, and figured it was because of the cats and swimming...but admitted tonight he's petrified the cancer could have returned.

His Dr. is a 5-6 hr hour drive from us, and his 6 month scans & checkup is scheduled for June 16th. We asked for scans to be completed here locally with the results in hand for his checkup & a referral to a local ENT to take a look prior to his checkup in Indy because David has been feeling weak & dizzy w/ no appetite the past few days (before learning what I just told you above about ALL of his symptoms). So his Dr's office called back earlier today and his CT scan is scheduled for Friday at the local hospital and no appointment with a local ENT yet (they're booked). Being told after business hours (he just told me tonight about all of his symptoms) having the whole big picture, I'm concerned he could have - at the very least -an ear infection, cat scratch fever, or possibly meningitis... At worst, the cancer has returned.

Having said ALL of that (and thank you for patiently reading my post) - please advise. Do you think he should go to the ER since they can't get him into an ENT yet?

PS. If he has a CT scan on Friday, can we find out that day - or relatively quickly what the results are? It would be EXCRUCIATING to wait until his June 16th appointment to have the results.

Hi Honey
i just read your post carefully and the only thing that jumped out at me was the "yellowish tinge" to his skin.This is usually a sign of a problem with the liver or gall bladder.Are the whites of his eyes clear or do they have a tinge as well?Does he have a fever?is his urine very dark?

The symptoms in his head can quite easily be caused by anxiety ie "panic attacks"
I would suggest a visit to a doctor as soon as you can,if for no other reason than to ease your minds.Its an unfortunate fact that when you have cancer you tend to attribute all symptoms to the disease whic is not always the case.

good luck

liz

Are the doctors you are referring to his cancer doctors? Do you have a regular family doctor to go to when David gets sick? Personally, thats where I would start. If yu do not have one and he is that ill then a trip to the ER would make sense. Just get him checked out.

Hi Liz & Christine - thanks for responding.

Yes, his ENT / cancer Dr. who I'm referencing.
He doesn't have a regular family Dr. - primarily because it takes two hours to be seen because it's 'the Dr's office' so he goes to the convenient care the next big town over (we live in a very small town).

The whites of his eyes look white(ish) (minus being bloodshot)

He has agreed to go to the ER tomorrow morning.

Thank you for your wisdom / advice.

I would really recommend establishing a Primary Care Provider (PCP) that is close to you and who you and David are comfortable with. Having one physician close to help coordinate all of the other dr's involved in your husbands care makes everything so much easier...at least it did for me.

This also helps regulate prescriptions and lessens the chance of having bad drug interactions as well as giving you a somewhat local contact when something like this does come up that is scary.

This disease is scary, the symptoms and side effects from treatments are scary, the whole process is scary. What's terrifying is the unknown. David is allowing himself to let his terror of the unknown stop him from taking the appropriate actions to his care and that's just wrong. David not only needs to go to an ER or Dr right away he also needs physchological help ASAP. He should really be on an anti-anxiety med and an anti-depressant along with the counseling.

As his caregiver and wife, unfortunately it's your job to make him see that because he isn't seeing it himself. My heart goes out to you dear and I hope I didn't sound harsh above, I'm just that concerned.

You've got me on facebook, send me a PM anytime you need a sounding board or whatever.

Eric

Let us know what the ER Dr. says. I will say a prayer for you and david. I now this is all scary for you right know. Just remember what is on your signature, Phillipians 4:13. i have another one for you which has become my life verse, Jeremiah 29:11. Hope you can find comfort in knowing that HE is always with you!

I am going to apologise in advance if i offend anyone here,but i really am fed up with this magic pill attitude every time anyone hits a rough patch.Medication is not the be all and end all,and in a lot of cases it can be totally counterproductive bringing many more problems of its own.Carers and patients who have insight into their illness and all its allied problems will realise that emotional and behaviour issues are part and parcel of having cancer, and treatment and recovery are tough on every one.While some people undoubtedly benefit from chemical intervention when these emotions become a danger to their well being,for most, they pass and drugs should not be considered an integral part of TX.I have spent too many years watching lovely people become dependant and addicted to medication given to freely and taken too lightly.To the many people here who i know find this method of dealing with things a god send,i apologise if i sound harsh or arrogant but believe me when i say i have had dozens of people say to me that i should go to the doctor and "get help" and i say to them that i don't want to not feel,or to live my life numbed and in limbo.As a short term remedy i admit it may be beneficial,but i would urge you as far as posible to try and cope until the situation becomes untenable.

liz

Hi Liz. I do 100% agree with you. Here in the "states" our doctors will write a script for just about anything without considering the long-term affects and how addictive and dependent the drugs are. I have the opposite problem with my husband. He is currently 8 weeks out of treatments and still in a LOT of pain in his tongue and throat. From day 1 he has refused to take any pain medication besides Tylenol. I work in a hospital and get our prescriptions for next to nothing. I have gotten them filled and he has refused to take them. We have pain patches, Percocet etc. He did take the Zofran until around 3 weeks ago because the nausea was so bad. He is currently trying to eat some soft foods and won't even use the Magic Mouthwash because he said that numbs the taste buds and he can actually taste everything.

More than one person said to me "the doctors did give him anti-depressants didn't they"? Dealing with cancer is going to be depressing and produce "feelings" of despair, anger, sadness etc. Our society does expect a "magic" pill for just about everything.

Nicely put Liz. WE sem to think alike on a lot of things,.I get tired of hearing the same thing day after day after day too. I sure would worry about the yellow tint . never really a good sign.

Update:

David went to the ER on Thursday.

CT scan, chest x-ray & blood work all came back normal.

The 'woom woom woom' feeling in his head has nearly vanished since getting some sleep.

Personally, I think you all called it: stress & anxiety!

He'll see his ENT & Prosthodontist Monday & Tuesday - I'll update then.

Thanks again for your advice everyone!

-Philly

Good Job Philly

lets hope things keep going forward now

liz x

Liz, if you knew more about what Philly has been dealing with and David's actions you wouldn't be so quick to rule out meds. I'm with you on the fact that they are over prescribed and shoved on cancer patients...I walked out on a Dr. that was hell bent in telling me I was depressed and wanted to give me meds. I switched to another dr because I don't need nor want to be on those things.

However you have a person like David, who quit treatment and has been letting fear and anxiety rule his life. He quit and gave up on his young wife and 4 children. I believe he needs assistance and if you knew more about it, you would too. Believe it or not, they help in some situations.

Eric i respect your opinion,but i most definately do not respect your statement "if i knew more about it "!!

I am a fully qualified state registered nurse and did my psychiatric secondment in a state funded mental facility.My mothers sister comitted suicide after years of treatment for manic depression and my own mother recieved electro convulsive therapy and was committed to a psychiatric hospital following this .My 25 year old niece has ocd and chronic anxiety disorder for which she receives medication and cognitive therapy,and my sister in law pops anxiety meds likes sweets since the death of her sister from breast cancer and her father 18 months later from oral cancer.

How much more would you like me to "know about it"?


My point is that while all these medications have a place in treatment they are far too often used too quickly as an easy one pill cures all.I know what Philly and david are going through is horrendous,what i went through with rob and his attitude and emotions was horrendous but i also know that it may not all be solved by medication,but if things don't improve it is an option that can be looked in to.

Bottom line if it works for you well and good,but sometimes it can muddy waters andactually bring its own problems.

You go Liz!!!

My husband had a similar feeling and occasionaly lightedness about 6 months out fromt treatment. We too panicked that it was cancer related and were very upset for days maybe longer. He was DX with mild high blood pressure which is now under control. Cancer makes one hyper vigiliant. Both a burden and in some cases a blessing. Glad he got checked out and that the news was good.

Liz, thanks for listing your "qualifications" but I'm not going to sit here and let you villafy a tool or tools that some of us may need.

I'm gonna be the jerk here (thanks for pushing this issue and driving me to this btw) and point out the obvious, you've never battled cancer. You had great seats to the show but you didn't have to glove up and stare death in the face. I did, David is and by god if he needs "liquid courage" or a pill to help him stare back at death then I refuse to let anyone make him or anyone else in the same situation, feel weak, or cowardly or badly for taking them. That's exactly what I read in your post.

I give it up for caregivers and have on these boards on several occasions, but in the end it's the people that have faced this demon that I'm gonna take my advice from and listen to. I've had to sit across the table from my children and tell them that daddy might not make it through this one, much like David, and I was scared out of my skull. I've fought men in the steets and in the ring, I've had guns and knives pulled on me but facing a foe that attacks from within is more frightening then anything I've ever experienced before in my life and there is no shame or weakness in getting any support, taking any med, drinking anything that allows you to fight this evil.

if I get banned for this post so be it, if people view me as a jerk so be it, but nobody can take away the passion in my heart to help those fight the demon I did and if I've hurt peoples feelings I apologize

Philly thanks for the message on facebook, it probably is the only place you'll be able to reach me after this one.

Eric

Bravo, Eric.

I am not going to get into the middle of this, but I do want to point out just a couple of things: One, Liz (and never, ever forget that we all recognize the extraordinarily difficult journey you traveled with Robin!)....but you mis-read Eric's post, when he said the following: "If you knew more about what Philly's been dealing with and and David's actions..." He did NOT say, "If you knew more about the subject of depression."

Secondly, clinical depression is a very real illness, and for some, the extraordinarily emotional experience of facing cancer can be the thing that will trigger a depressive episode, making them unable to function properly and impairing their healing.

I feel that this discussion has descended into areas that are not helpful in the general way that this forum generally is helpful. For any person to criticize the use of antidepressant medications for another is irresponsible in my opinion. It is a return to the dark ages, when persons with mental conditions were socially stigmatized and did not receive the help they needed for fear of being ostracized.

Different people respond to stress differently, and for those of you/us who are wired in such a way that we can tolerate the terrors and difficulties of this horrible experience, that's great, but let's please do not deny others the emotional support that they may need to do all they can do for themselves to aid in their own recovery.

Thanks for letting me sound off. I was a bit surprised by the tone of this thread, and I simply couldn't stand by and not comment.

Eric-Too often the caregivers are the ones who see what's going on with the patient before the patient even does. We can see what they can't because they are so scared. We are also the ones, far too often, left picking up the pieces. So at the risk of offending you, Get off your soapbox!

Sue

But Sue, isn't that an argument for using all the tools available to the patient?

I was just defending Liz's take on the idea. She was not listing her "qualifications" as Eric tried to twist it. She was also not saying that the drugs are not useful to some but ARE often prescribed without thought to the after effects. I would never tell someone not to seek medical care for mental issues. We are all entitled to our ideas on the subject and just because we are not the patient doesn't mean we should be discounted so quickly from the subject at hand. I, as Liz, was in the trenches with my husband every step of the way and even though he did not have mental issues to deal with I do see the reason to be wary of more drugs being pumped into people without regard to the side effects. Sorry if this sounds like a rant-I don't mean it that way-just trying to defend a wise lady's right to her educated opinion. Take it or leave it-I'm done with this.

Sue

Sue

thank you so much for understanding exactly where i was coming from with my origonal post,
i too am done with this.

liz

My MO was my PCP for the first year and they are truly specialists in managing body chemistry. He managed all of my meds. I also took anti-anxiety meds throughout Tx. I refused the anti-depression drugs because I felt it was "situational" depression and not chronic depression and I didn't want to screw up my brain chemistry with Prozac. Antidepressents are often prescribed in the US by less than qualified doctors and then the monitoring required is also not performed.

I do have to state here that depression is a common and well known side effect of cancer therapy, however.

Drugs in general are overprescribed in the US today and that's one of our major health care issues.

Situational - thats a great word Gary and in my opinion sums up the problem brilliantly.

liz

I know the feeling.I have been having problems the last 6 months or so.I am coughing so bad all the time,my throat is so sore,dizzy oh yeah and can't keep anything down.I am in year 5,but it's like everything is going wrong>It's like everything in my mouth is swelled,my ENT won't see me until i get enough money up to in to see him.I just pray every night that nothing is wrong and hope i get the money soon.I am scared and my kids just don't listen to me because they don't want to talk about it.It's been awhile since i have been in hear,but anyway it felt good to vent alittle.
lynn

Sue,

Aren't there any public health clinics available? I got one of my employees seen and treated at Moffitt, a CCC, without money or insurance. It's a hassle but doable if you persist.

Hell go to an ER that won't refuse you without payment.

Last resort, call a newspaper and tell them your story, i.e. cancer survivor with similar symptoms recurring and your cancer doctor (his name in BOLD LETTERS) refuses to see you without cash up front! I bet you would have an appointment the next day.

Great advice, David! Sue you should definitely be seen as soon as you can so you can quit worrying. Stress isn't good either.