I posted a response to a caregiver in another forum concerning her struggle with caring for her partner with SCC H&N cancer. She was having trouble dealing with her partners moods during treatment. She wanted to know if the drugs brought out the "real" person or could change someone.

I've been reading a bit and there are plenty of patients that are stubborn and difficult to deal with (Raising my hand)

I'm copying a bit of my post in that perhaps it will provide some insight as to what's going through their minds.


Changes

Hi CG,

I'm sorry about your situation. Cancer causes collateral damage to many things and people close to the patient.

The answer to your question about pain meds is "yes"... Pain meds as well as other drugs used in treatment can and sometimes do change one's mental and emotional outlook. Having recently finished treatment and recovering, perhaps I can shed some insight by sharing a little bit of what I was personally feeling at times.

Let me say that I was not a happy camper in general for much of the last 6 months. From the time of diagnosis through all the tests and treatments I was pretty much a PITA to deal with. When one loses control of their lives it causes emotional changes that can and do manifest themselves in how we interact. I feel bad for my partner/caregiver for what she had/has to deal with. When I found out I had cancer I was angry! I won't get into all the details but suffice it to say I wasn't happy at all and made it known. She's been absolutely amazing but we both struggled throughout. It wasn't pretty at times for sure.


PAIN: Pain has been the most influential factor in my mood. When you're in pain, sometimes severe pain, all you want is for the pain to stop. Don't talk to me, don't try to comfort me because you can't. It's best to just leave me alone until the meds kick in. I'll let you know if I need help.

SICK: Same thing goes for that. I don�t want you rubbing my back as I vomit. Close the bathroom door and leave me alone. I'll deal with it. Again, I'll let you know if I need help.

HYDRATION AND NOURISHMENT: I know I need to eat and drink. It's been drilled into my head from day one. Please don't talk about food or what I need to eat and drink 2 minutes after I open my eyes. I can't see straight let alone think straight. And don't ask me three times. If I say "no", that's my answer and it's not going to change in 30 seconds. (I had a PEG put in the last day of treatment so much of that issue has been alleviated as I take 99% of my nourishment and hydration through it for now).

DRUGS: Take all the above and throw drugs into the mix. Pain killers, side effects from chemo/rads and for me, steroids. I had a very negative reaction to the steroids I was given to help with nausea. About three weeks in, I began to get what would be best described as "roid rage". Every little thing irritated me beyond reason. The beeping of the machines in the chemo suites, a squeak in my truck, a bug hitting my windshield... yes, crazy I know! They also kept me from sleeping so add lack of sleep to all of the above. I began cursing like a sailor and I don't have a potty mouth! It got to the point that I was hallucinating. I would have my eyes open and be almost in a dream state, hearing voices and seeing things that weren't there. I explained to my oncology nurse what was going on and the next thing I know I was meeting with an oncology psychiatrist (which irritated me even more!) She explained to me what was going on and took me off the steroids. It took about a week or so but I got better. Unfortunately, the lack of steroids allowed the nasty chemo and rad symptoms (fatigue etc.) to hit me hard and that just reinforced the general bad mood I was in. It's like a vicious Catch 22. The narcotics definitely altered my mood and still do to a degree. I had bouts of amnesia/short term memory loss. I would forget something sometimes minutes after it happened. There were times I honestly didn't realize the curse words were coming out of my mouth until she said something to me about it.

The days from about the 4th week until a little over a week or so ago have been like a weird and painful dream. It's like a nightmarish version of the movie Groundhog Day. The worst part about all of this is I didn't really connect the dots (the drugs prevented that) and all it did was frustrate me more. Fortunately, although she had every reason to, she didn't put a pillow over my face. I'm very blessed that she loves me as she does. I love her dearly. I can't imagine what she must have been going through watching me change. I know it hurt her to see me dwindle away physically (60 lbs since last fall). It hurt and confused her to have me lash out and be over critical of everything but she hung in there and we're closer having gone through this together. I'm far from healed but we're over the hump and things are looking brighter.

Perhaps your partner is feeling some of the same things. Perhaps what I shared can help you understand why he behaved the way he did, The drugs as well as the entire ordeal of dealing with cancer can change someone. I don't believe it's showing you who they really are. It's what the cancer does to us that you're seeing. He may also be dealing with some level of depression which is very common.


�T�

Thanks for the info. Some of these points do impact the patient and caregiver,

Brilliant, "T"!

where were you 3 years ago when I was crying myself to sleep and wondering if Alex and I were going to make it?

3 years later, we are as strong as ever (stronger even for having shared the experience) and every word you have written could have been Alex and I.

I would only add that cognitive function due to chemotherapy (Alex had triple therapy induction chemo) made Alex irritable as he got lost in even short conversations. He could not concentrate on anything for longer than a few minutes and this caused some outbursts that came from left field.

I would also add that the carer asking "are you sure?" or making a further suggestion after the patient has said "no" is a sure fire way of bringing out the Mr Hyde when the patient is tired, miserable and wondering if it is all worth it. If I had one piece of advice for a new carer, it would be to accept that no means no, and cajoling and threatening serves no purpose other than to raise everyone's blood pressure. Whilst your loved one is acting like a 2 year old, they are actually an adult. As such at the end of the day, the choices are theirs. I found this nearly impossible to accept in the beginning.

I was frustrated (understatement) with Alex's behaviour and thought it a death wish but it was his way of trying to maintain some control. His whole life had been handed over to others and he struggled with this. Obviously some of his choices were poor due to his drug addled confusion but my job was to help him through the confusion - not make the choices for him. I did not learn this easily and I can thank my lucky stars that Alex was too sick and weak to toss me off the balcony. I guess Alex wasn't the only one behaving badly

Wow, just read your reply "T"... This needs to be published! Wish I could have read earlier in this whole nightmare, but still very very helpful. Helps to read all the replies as well, as often surprised by some of my husbands replies and often in tears . Recently told my mom that he will probably divorce me when this is all over- because on days/times when he is perked up, I'm left to feel like I'm unable to do anything right and seem to ignite such anger and bullheadedness! Crying yourself to sleep, pillows over Cg head, getting thrown off balcony- thanks had to chuckle at that....I do have a secure feeling as knowing I can out run him right now ! Very reassuring to know that these are all just part of the process for both of us! Thank you.

Oh My Goodness, "T"! I agree with Colleen. You really need to publish this and/or make it a handout in all oncology doctors' offices. Every caregiver should read this as a survival guide. Sure wish you had been there with your insight when my son first got diagnosed and when I did not yet have OCF with me! The posts above should also go along with it. BIG Thank You!

So gotta ask.. Why when you offer suggestions i e like from this great group.. Is the patient so bull headed he will not try any of them.... he has been sooooo bullheaded -and then gives me this look that ..you know if looks could kill .., where I've had to say look like in not the enemy,...Just trying to make things a little easier for you!!!! You gotta add that in the publication as I am scratching my head.....trust me all offered carefully and lightly as he has become Dr Jekyll and Mr. Hyde .....

Colleen,

I know the look. I've given that look and I'm good at it ~lol~
I wish I had an answer for you. I feel a patient needs to educate themselves and learn as much as they can from forums like this. There's a lot of great information and support from folks that have lived through it. I know I wouldn't have made it through without it. However, regardless of how much I read and learned, it didn't truly prepare me for what I went through and will go through in the future. It's like seeing a picture of the Grand Canyon and actually standing on the edge.

To a degree I understand why some patients wouldn't join a forum like this but it's a disadvantage to them and their caregiver. The way to beat the beast is to know the beast.

It sounds like the walls are already up with your husband and just about everything you say will be countered and rejected. If you say white, he's going to say black just because he can.

Does he like to read? Maybe you can print the post. Compile some of the great info and suggestions in a MS Word doc and just leave it out for him to read at his leisure.

I'm fortunate that my partner and caregiver has many interests. She does craft work and paints (she's an artist) so she finds things to occupy herself with and has given me lots of space since we've been home. That's exactly what I need at this point. She'll come to me every few hours and ask if I need a can of food and takes care of prepping everything as well as helping me getting set up. After I'm done, she helps get everything put away and goes back to her crafts.

I know you just trying to make things easier but know that anything your husband can do for himself helps empower him and makes him feel better.

Thanks for the kind words about the post. There's a bit more to it. I should put it together/revise so it's readable in a general sense for all. I wonder if the admins here would want to post a read only version on the caregiver page?

"T"

Lol well you get together and I'll order a copy!