Cella's blog

Mental health

2009-08-31T18:52:40Z

Today while reading blogs here something hit me that I have 'known' all along but never quite put my finger on it...and that is, at least here in the states, psychiatry is not offered as support unless asked for. You can have your complete work-up, surgery, post surgery care, follow-up visits at home, follow-up visits everywhere, etc. All those services are 'built-ins' to the care. But one thing that is an absolute string throughout ALL our posts (pretty much) is our mental health. Our mental health is not automatically cared for as part of the plan of care...pretty much until we ask for it or have demonstrated a deviation from our norm. And it is sooooo important. Our self-images, are we burdens to our families, finality of days, loneliness, inability to tolerate visitors, irritability, irrational behavior...I can go on and on...We get psychiatric help if we ask or it's noticed, but it is not a 'given' or as part of the cancer care. Hmmm...I think I have 2 cents to offer my care team! Here, we automatically have social workers as part of the care team, but not psych people...Do you have it in the UK or elsewhere? How is YOUR mental health cared for?

It's been awhile

2009-08-20T15:15:02Z

I have not blogged for awhile but I have been peeking at and reading blogs and posts daily. Some make me smile, laugh, cry. All the things I feel you all feel. There is a kind of sorority-belonging feeling about that...a soritity that none of us want to belong to but are so happy we do. I like the ordinary lives of some of the blogs in the face of extra-ordinary events in their lives. It amazes me how we go on. We haven't many choices but choose with conviction and, find our own strengths. Hooray for strengfh!! I have had my lung catheters placed to help drain my lungs of fluid that won't go away. They help me breathe better but require a visiting nurse to help me do it because of the awkwardness of their placement. I will be doing chemo #10 next go-round. They actually are more tolerable but only because I kind of know what to expect of it now after so many. However, none are without a 'lil surprise thrown in. So for now, I maintain my 'hanging in there' mantra that I tell others when they ask how I am doing. My gratitude: I actually DO feel better.

I am not going to get well

2009-07-03T18:22:25Z

I have come to a realization (latent and out of denial/hope) that my cancer cannot be cured. Somehow I thought that my care team could make me all better. Why not? They make me feel better every time I have to see them. But now I know that I will never get better. How sad for me and everyone like me. How sad to know there is very little hope of a cure. My only hope is that I live longer than I think I have and not feel too badly about all of life that I miss out on and will miss out on. I hope I am not too fearful at my time of death. I hope my family and friends are not too burdened by me and know that I will hug them every day even after I am gone...somehow. Hope is a miracle.

Sticky chemo

2009-06-01T09:40:24Z

Had chemo last Wednesday and I am still feeling it...nausea, numb tingling feet, tremulous hands, runny nose, can't breath right because of the pleural effusions the chemo is supposed to fix, can only sleep sitting up, can only eat small bits at a time, can only move one room to one room at a time with oxygen on. Ummm...this is not exactly my idea of living, 'ya know? Tired of the abdominal injections, tired of the pills, tired of bothering honey for everything...sigh...

Next go-round

2009-05-14T13:26:03Z

Monday starts new chemo, carbo and alimpta. I was getting carbo/tax/avista, which was a trial and now I am out of the trial. The alimpta (usually for mesothelioma) is because we can't get rid of the fluid in my lungs. We shall see. I have been tapped about 14 or 15 times so far. About every one and a half weeks. I really can't do very much and haven't been able to do very much for quite awhile now. I walk 30' and I am so winded I have to sit and catch my breath before I can continue, otherwise I feel pretty good...if that makes any sense. I have developed fluid in my ankles again that is not quite going away as easily as the first time around. And of course, because of this I have become very dependant on everyone. And everyone is mostly my honey who does have his moments and I have to watch how 'demanding' I become. I try to group all my 'I needs" and ''can I haves' together so there aren't too many errand runs and too many runs around the house for me. I find the greatest needs I have are the simplest...but the most annoying to others. Like I drop things and I can't pick them up. If you need to find me just follow the droppings. Sometimes I think I have left my reading glasses in one room but I actually brought them into the tv room where my other reading glasses are...now both of them are in the same room but I am in another room and need a pair...and of course, I have to wait until I catch my breath until I can go into the tv room to get a pair. Yes, simple, goofy stuff can be sooooo annoying and sooooo difficult for a carer. ::sigh:: My gratitude: There is someone actually willing to help with all of this...honey.

Chemo not working

2009-05-05T14:09:16Z

Well...my chemo is not working. After cycle 5 and an elevation of my Ca125 to 95, it is not working. So yesterday I attempted another Cat scan and could only do the IV part. I couldn't even think to put that stuff to my lips. The test isn't as accurate but we shall see what comes of it. Tomorrow I go for another lung tap...the doc found my liver lower from the weight of the fluid. Can you believe how strong the body is???? I am going to see if they can keep me overnight and tap the other side the next day...Cancer is a slow torture, isn't it? My gratitude? I don't have honey's cold...yet...

Who dropped the pennies in my penne?

2009-04-18T15:37:20Z

I have been dying (okay, maybe, maybe not) for a nice small bowl of pasta. Nothing major mind you, just a small 3-4 inch bowl of penne with red sauce and a meatball or two if I could stuff it in. Since I can't shop for myself I made a small list for honey to get at the food store. I did ask for meatloaf mix x2 pkgs (pork, veal, beef) to make the meatballs. What I recieved were two packages of powered meatloaf mix to flavor meatloaf. Okay, I wasn't specific and life around here has gotten either very abstract or very literal. So that was two days ago. So yesterday I try to enjoy a steaming hot cup of coffee. Yes, you guessed it...I burned my tongue...flavor altering unto itself. Now, for you chemo-lovers (we love it so much we go back for more) you are perfectly aware that all of your food begins to take on distinct other flavors and textures. Flavors like you have not really known or think has faintly reminiscent flavors of metals way low down on the periodic table. So I made my meatballs after honey bought the meat mixture of expectation, fired the heat up under the water for the penne and voila, I have no idea what it tastes like or even if it is tasty. I'm not even sure if I like the way the meat feels in my mouth!! Well...my gratitude? I DID have my penne and had enough left over ingredients in the house that I made a small lasagna...which I froze for a day I can taste!! And...that I was able to do any of it at all.

I'm upright and typing...

2009-04-14T17:16:17Z

Sometimes it seems like the agony is never going to be over. One new thing after another for me to the point that the unexpected is the norm. But what it has done is make me hypervigilent about my body and any new 'symptom' makes me like a deer in the headlights. Last week after chemo #5 I thought I was having a reaction and went right to the hospital...boom. The docs are still not sure what happened but I feel pretty certain that I did. From there we develop pneumonia and get tapped for #12 and #13 thoracenteses. They are making grumblings about putting in semi-permanent (removed if no longer needed) lung ports. I get to drain them at will, I guess, I still don't have enough info to even be talking about them...so I won't. And today work called me to say they will be posting my job...I can have 'A' job, but not necessarily the one I left. So, even though I have had worse days my gratitude is that my blood pressure is down to the point where I haven't taken any pills for 2 missed doses now...maybe that is a good thing???...lol Who knows? I'm still smiling though...you have to when things get too absurd...wagging my finger at you...and you know what I mean...lol

Another go 'round...

2009-04-02T16:46:37Z

Had another thoracentesis (# 11) and a cat scan this week. A day in the life of an ovarian cancer patient. At least this thora went for two weeks without needing one sooner, so it is a wee bit better. I didn't have to drink that chalky white contrast goop...they have it in Crystal lite flavors of either iced tes or raspberry, both very sweet I'm afraid, but not so filling and bloating. I am riding a smooth sea right now and am grateful for that...which is my gratitude. We shall see, as I have requested copies of my last two cat scans with interpretations.

Feeling sad

2009-03-19T15:59:29Z

Third round of chemo is over and last night was rough...woke up with a headache and feeling quite alot of nausea...awful. I took meds and feel better now. My breathing is pretty good, kinda. Had my weekly thoracentesis. They hurt. Honey isn't coping very well and I am seeing things more clearly these days that I haven't been wanting to see before. And I am sad about it. I don't think we are going to be together in the long run. I have to do things slowly. I have so much to think about. I think I am going to need more support from my care team because I don't think I can do this alone. My gratitude: There is always help.

I'm tired

2009-03-10T20:06:18Z

I completed my 9th thoracentesis today. I am pretty tired of them I get sooooooo anxious before them, for anticipated pain, whether it's there or not. My pressure goes sky high, my fingers turn a lovely dusky shade of gray/blue from taking such shallow breaths on top of shallow breaths. My hands shake some and I jump a bit whenever the doc touches me. You would think I would be accustomed to it, but I don't think you ever get used to pain, do 'ya? Today's pain wasn't as bad but I am still somewhat short of breath. They took off 1000cc...there is more in there but i become physically ill when they take more off. The chemo is supposed to lessen the fluid. When? I dunno...'with each chemo treatment' they tell me. Okay, I'm waiting. The last weekend was hardly quality time going from chair to chair and panting like a dog just out for a run! And what quality is it to 'sleep' upright over a table? I tell you, it is like Beelzebub himself running around in our bodies. I told my doc they ought to find a way to use bleach. Bring the bleach to the cancer or make the cancer go get and suck up the bleach. Bleach kills everything. Here's wishing to such an easy cure ... My gratitide for the day: I can breathe easier, even if not breathing great.

Kezzer...

2009-03-06T13:05:06Z

Rob's comment to the reporter re: why he had his back waxed brought tears to my eyes. Your blog of your vacation brings to light how cancer makes even the smallest of things large...maximizes life's events like nothing else can...almost teaches us how to REALLY live a life so it is full and with depth, and with quality. I think we are ALL enjoying your vacation :) I would love to see a pic of you in those snazzy thigh high striped socks...lol...Cella

How frustrating

2009-03-05T21:13:13Z

I called yesterday to get an appointment for Friday to have a thoracentesis so I could breathe normally again. Nothing new or unusual with this request. I get 'tapped' about once a week until this chemo kicks in and I go for longer periods of time until there is zippo fluid to drain off my lungs. Well, I am told there is no appt. open until Tuesday AM. I guess they can't/don't want to squeeze me in any more. I wanted to go tomorrow early. They told me I should go to the emergency room at the hospital. All well for them, that is $150.00 out of pocket if I have to go to the ED for it. And I go once a week. I'm not looking for answers or even support, but sometimes modern medicine just misses the human side of it all. If it wasn't that I like to breathe I wouldn't go at all..

Toot Toot:Next stop...hypertension!

2009-03-03T18:56:42Z

Sure enough, if there was going to be an issue with hypertension once I received the avastin, I was going to have hypertension! Of course, why not?? I have had all the other side effects one could have for ANYTHING...for ALL of it! All aboard the 'adverse reaction' express!! Sooo, now I take lisinopril. Or, I WILL be taking it as soon as hubby gets it for me after work. Okay, what's my gratitude?? That there is a drug that can lower my BP and spare my kidneys harm. geesh...

Feeling more like myself now

2009-02-28T14:26:24Z

The desens chemo over now and I am finally feeling a bit more like myself. My bowels don't want to cooperate exactly, but I haven't been eating like my old self either. The bowel meds they gave me were AWFUL. Bloating, gas...no way for me. I feel that way already!! Lots of water is doing the trick for now. I am on the avastin trial and have to watch my blood pressure each day. I run a wee bit high anyway so I purchased a BP cuff...very cool, and keep track of it. And of course, I have to make sure I don't have a delayed reaction to the carbo like I did before. I can't seem to let go of the few hairs I have left...lol. When I put a hat on I think I still have some hair 'cuz it peeks out from the hats. It works for me...for now. All of the sloughing off has subsided so I don't have that going on anymore. My insurance will pay for wigs (more expensive) but not for hats (less expensive). Go figure. My breathing is easing up a bit from all the fluids in my lungs and I am hoping that continues because I like to breathe . The doc is counting on that response...me too. Chemo can really kick your bum, can't it?? Well...here is to another day that I am feeling better...I will leave all the weepiness for the nights when I sneak in here for my comforts. Big hugs...Cella