I am a physician who had been diagnosed with throat cancer four years ago. I very much appreciate the care and support I received from my family, However, I personally experienced the great strain and challenges they faced in caring for me. I realized that there is a need to highlight and improve the attention given to care givers of patients with cancer.

Being a care giver for a loved one with a serious illness such as head and neck cancer is very difficult. It can be extremely hard to watch their loved one suffer especially if there is little that they can do to reverse the illness. It can be physically and emotionally very taxing. Care givers should, however, realize how important is what they are doing even when they get no or little appreciation.

Care givers often fear the potential death of their loved one and life without them. This can be very anxiety provoking and depressive. Some cope by refusing to accept the diagnosis of cancer and believe that their loved ones illness is less serious in nature.

Care givers often sacrifice their own well being and needs to accommodate those of the person they care for. They often have to calm down their loved one�s fears and support them despite being often the target of their vented anger, frustrations and anxieties. These frustrations may be exaggerated in those with head and neck cancer who have often difficulties in expressing themselves verbally. Care givers frequently suppress their own feelings and hide their own emotions so as not to upset the sick person. All of this is very taxing and difficult.

It is very useful for the patient and their care givers to openly and honestly talk to each other sharing their feelings, worries, and aspiration. This may be more difficult in those who have difficulties in speaking. Jointly meeting the health care providers allows for better communication and facilitates shared decision making.

Unfortunately the well being of care givers is frequently ignored as all the attention is focused on the sick individual. It is essential, however, that the needs of the care givers are not ignore. Getting physical and emotional support through friends, family, support groups, and mental health professionals can be very helpful for the care giver. Professional counseling can be an individual or joint one with other family members and or the patient. They should find time for themselves to �recharge� their own batteries. Having time dedicated to their own needs can help them continue to be a source of support and strength for their loved ones.

Itzhak Brook MD

The only thing anyone (including medical professionals and friends - we have no family) ever said to me was "now make sure you look after yourself". I would just look at them and reply, "Yeah? When?" I'm still reeling from the fallout (physical and emotional) of being the sole caregiver. I was regarded as a nuisance by the medical professionals and expected to just shut up while they were dealing with Gordon, who was so bombed on painkillers that he could hardly string a sentence together, which he would try to do when he wasn't hallucinating.
Elianne.

Dr Brook,

FYI, today, at my monthly OC support group meeting, there was a "display" copy of your book on the table with a sticky note listing your blog site.

Great support group meeting, we got to spend three hours with a H&N RO.

Lots of good info on IMRT planning (RapidArc, SmartArc, Tomo, IM-Proton, Cyberknife). Good discussion about HPV+ along with recurrence issues and options such as IMRT re-treatment and Cyberknife.

Good Chemo/RT discussions. He also spoke about acupuncture, and nutrition issues.

Don,
I was pleased to hear that my book "My voice- a physician's personal experience with throat cancer" was displayed in your monthly support group meeting. I hope that the members of your group found it helpful. For those interested in reading it, it is available to be read on my blog at http://dribrook.blogspot.com/
I will be happy to hear your input after reading my book.

Itzhak Brook MD

Thanks for this post. As a caregiver I am going through a hard time now. Feel I don't have support and am looked at as if I am crazy that I need it when a family member is recovering from this disease. How selfish am I?
I am now not talking to my sister over things that this disease has done emotionally to both of us. I can't tell anyone my issues though because they look at me like I have two heads for complaining about how I feel or about things that have been effected in my life. It is very difficult and I feel all alone. Flat left actually. Our fight was pretty bad to and I don't see it being resolved anytime soon. To much Anger on both our parts. Its a shame this disease can do this also. It has torn my family apart.

I can relate to this post also. I had one person as my support network when Steve went through treatment (my mum). I come from a large family and am the youngest of 5 children but still only had 1 person to support me while I supported Steve through everything. I am eternally grateful to my mum. Without her and ocf I wouldn't have made it as well as I did, which means Steve would have suffered more. The reason's I get passed onto me why no one ever visited or still visits is "they don't know how to cope with it". When I have tried in the past to talk to one particular person about my fears of losing Steve all I get every time is "we all die one day". I have given up and now talk to no one other than my mum or ocf members. I have never felt so truly alone since all of this began.

I feel everytime I try to talk to other people I am just being a whinger. So I don't talk about it anymore. When Steve was diagnosed we sold up and moved closer to family for support. Well not only did we walk away from our home, our jobs and great friends but we came to a place where we were literaly abandoned upon arrival even though before arriving we were promised all kinds of support. And all I ever feel now from people is "shouldn't you be over this by now" kind of feeling's. They don't say it outright but you just know that's what they are thinking. Not only am I constantly worried about Steve but I'm also grieving for a very happy life that I had to give up. Don't get me wrong I'm extremely grateful that I have Steve here and he is going so well and that's all that really matters in the end but it's still very hard to have your life turned upside down and then be expected not to show that it has affected you. Being a care giver is damn hard, especially when you are promised so much support only to be abandoned by those that you loved. But it makes us care givers tough, that's for sure.

On a recent trip home to see our friends I was extremely touched by 2 friends that actually thought to ask me how I was and how I had coped with everything we have been through over the last 2 years. Everyone asked about Steve and how he was (which is fair enough) but only 2 actually thought of how this may have affected me.

Susan and Wendy especially (et al),

After seeing both sides of the equation, I hear what you are saying. I saw my mother literally disown my sister when she was living with her while my mother battled ovarian cancer. It took almost a year before they even spoke to each other. The caregiver is the real unsung hero and even when you have homecare nurses coming regularly, all they say is YOU must find respite care for yourself so you can help your loved one better. Yet, as you know, when you get out there, nobody fills that void. My wife used to trek across the medical campus to get soup for many at the chemo area partly to just get away. Then anger in the midst, as I call it, abounds and nobody really enjoys being the patient or the caregiver.

Many of the feelings we develop during the worst of times are things we develop. Never assume others are thinking anything and take care of your mental health above all. This nasty cancer world has a tendency to allow the million what-ifs to flourish. When we narrow it down to the real "what-are's" we often find that focusing on the facts and what is going on and shutting out the endless possibilities frees up a lot of time we spend on worrying. When we feel we cannot do that, there is absolutely nothing wrong with seeking the help of a professional that is trained in addressing this and helping us resolve the things that eat at us. I strongly urge you to address this with the social worker where your loved one is being treated and they will help direct you where you can best be served. Never think you are being a pain to those treating your loved ones or yourself. The average person does not know what to say to the patient or caregiver so they just say something and hope it was right. Often it is not. Never feel you are whining but find someone that can truly ask you and be prepared to listen to what you really have to say.

If you like, send me your phone number (PM please, not here) and I will call and you can unload until you feel better. I spend a lot of time with patients but more importantly, I spend a lot of time with caregivers as I believe they are provided adequate support by most people. I have to warn you in advance, though, I am a trained volunteer hospital Chaplain, a Stephen Minister and a Lay Paster so my slant is toward religion although I also spend time with atheists and agnostics so I can tone it down if you prefer. The important thing is that you be able to release those frustrations and the anger for yourself first and your loved one as a consequence.

Be proud of what you do because it is really the toughest job and one of thhe most important!

Ed

There are many sides, faces, colors, etc to cancer in general. I can't say survivor or caregiver...which is worse~~~~ They both rate up there in the 5x:( scale to me. Yes caregivers need to take time for themselves but that is often, if not always impossible. There is always something to "take care" of. I have always listened to everyone's advice, keeping in mind "they don't have a clue". People don't realize because they never had to experience it, THANK GOD!!!

When my husband was first diagnosed in 2001 I was 34 years old and at that time the internet was not what it is today!!! I educated myself the best way I could. I wish I found this site years ago but still glad I found it.

Doc, I'm glad you are mentioning the flaws of the physicians, nurses, etc. I worked in the medical field for many years and am in a hospital. Not as an RN but am now in the maintenance department but did work as a unit secretary. I go to work each day knowing both sides of a hospital and work accordingly. I never want to hear a patient went without something that could have been fixed. I remember walking into my husbands room the day after one of his surgery and his TV was not on BUT they turned on his phone!!!! Hello he has a trach, he's not blind!!!! Another case of people, medical professionals included, not knowing......

In my 8 months as a caregiver i found my one overiding thought used to be "i wonder how he feels?".I found being robins carer and advocate was easy in terms of practical matters as i was a qualified nurse and it was my area of expertise.I just immersed myself in facts and information as i felt the more knowledge i had the easier it would be.
This is in fact a double edged sword as knowledge is power but it is also the cause of much distress and heartbreak.Doctors words are interpreted and understood with all their ramifications and it was difficult sometimes to sugar coat the truth when robin asked,and also difficult to hold the truth when he didn't.
The hard part is the previously unseen emotions that cancer brings with it,and how to deal with them.Nobody but the person with cancer knows how it feels to be given the news you have the disease,no matter how hard we carers try to stand in your shoes ,we can't..We try so very hard but it doesn't work,and we have to deal with the "its not your cancer its mine" scenario,which can end up being destructive and frustrating.Becoming the target of aggression anger, frustration, fear, rejection, withdrawal,submission,confrontation,desperation,failure,and despair.

For the carer left behind,these feelings unfortunately continue long after they are left alone and are added to by the what ifs and why's.For the lucky survivors they may recede to be replaced by anxiety and fear of return, frustration at the the slowness of recovery,and the abilities and appearence that may never return.

Who can say which is worst?.who's journey is harder who's feelings more or less important?Its a minefield,and we all have to find our way through it with the least amount of damage.

OCF is a bit like the soldiers who diffuse those mines,and we march on hoping we don't step on one.

Well put Liz. I couldn't have said it better.

Christine

Once again , Liz...awesome insight and words.....

Thank you for your message. I am the mother of a 26 year old, and I thought I was doing okay. The fact of the matter is I am not. So I am going to talk to more people and find support groups. There are not a lot in my area, but I will not give up!

Awesome insight, Liz - from the caregiver perspective as well as being such a compassionate understanding of the cancer person's experience. With your medical background and your many great posts while being Robin's carer and advocate, you should really write a book or at the very least, a "how-to" manual for caregivers. It would be invaluable to so many.

Did not know where to post this. Still a newbie when it comes to navigating the site.

But my daughter will finish up her 4wks of chemo and they did a scraping of the tumor and found no change of the cells. Now on one hand that is somewhat good news that it hasn't multiplied, but on the other should we not have seen some shrinking (for lack of a better word)

Thanks for any input

I am answering this here, but it would be a good idea to keep posting in the original thread where all the information about what has happened to date is. That way people that have not been following you can read through everything before they say something that isn't appropriate to the situation, or has already been said by someone else. So I think I have read most of the other posts, but I may say something inappropriate, since I am not sure I got them all.

This post leaves me wondering about a couple of things. I don't think I saw anything in your other thread about other treatments, except the comment about not doing surgery. That comment makes me think (since this is only a stage one at this point, which most of the time can be resolved with a surgical intervention) that it is in some very touchy anatomical site... (base of tongue -full of nerve bundles etc. or like that). I say that because we know that chemo by itself is not curative for oral cancer. Surgery or radiation is, but not chemo. So that begs the question- where is she being treated at? This would not be the customary treatment protocol at a major cancer center. Chemo by itself can be used as a prelude to radiation (why nothing else has been done yet) sometimes, or in conjunction with radiation. I would make the guess that she is not being seen by an ENT since they are surgically trained and do not do chemo. I would just like to establish that she is in competent hands, in a quality hospitals protocols. Stage one is a good thing, but dealys in doing the appropriate things are not good. Please do not think the worst about your doctors or institution, I may just be working from a lack of information here.

Would you mind posting answers to these observations/questions so that I might better help you?

Thanks, Brian. I will starting posting from my first post from now on.

Yes, you are right. They do not want to do surgery as the tumor is laying on a bed of nerves underneath her tongue, and will only do this as a last resort. They say it would effect her eating, swallowing and speech. They were going to due Radiation too, but recently decided against that since the sores in her mouth are extensive and they said that radiation would make it worse. She is being seen at the Markey Cancer Center in Lexington, Kentucky. Her medicaid made be revoked due to an oversight on her part. And so getting a second opinion at this stage is somewhat sketchy. She has started the paperwork to get a second opinion but her caseworker has said it is a long process. I have heard of laser surgery for some types of tumors and we found out that the soonest she could get in to do this is March 21. It is something that would cost $700, which I am trying to scrape money up to do. Now she raised a question about that. Will being in treatment with chemo effect a second opinion for any reason? I think I need to call and ask them this. I don't see why not, but I'm not a professional. She is also quite anemic, and will have to have feeding tube if she loses another 5 pounds. She has also lost most of her teeth due to an infection or maybe the tumor/cancer itself. These are just some of the other things she is facing to give you more info.

Letitia -

Thank you for adding to the information. Your answers generated more question in me, and I would like you to give me a call at the OCF offices. I still am concerned that a doctor chose a non curative treatment for someone that had an early cancer as the first go to thing. That just defies logic. Those sores that they are concerned about aggravating wouldn't be there, if they had picked radiation first, which is curative. Something isn't right about this and rather than type for great lengths here, if you wish please give me a call. I am in the office most of the next week, and in the Pacific time zone. The numbers are on the contact us link of the man web site.

I do not wish to do anything but make sure you are asking the right questions of the right people, and that her treatment is being managed by some kind of standards like those from the NCCN which are very specific, and drawn up by the top cancer centers in the US.

I will call you on Monday and I will ask my daughter to also be on the call. Since she will probably be better to answer some of the other questions you might have.

Thanks, again.

Dr Brook, I cried whilst reading your post, but won't carry on, because if you read WendyG's post on page 1, I am in the same shoes as her. Without this site, my OCF FB friends and my folks, I wouldn't be sitting here writing this.

Thanks for your understanding.