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Trying to sort through 
Started by Bizzy
01 May 2012, 7:11 PM

I had a bad experience yesterday that really showed the contrast between being on the inside, outside of society. People can't understand what we are going through. I feel so confused. Am I feeling sorry for myself, taking this too far?. Am I being lazy, not working hard enough? I went to a nurse to get guidance on weight management. I thought it was a good idea. My weight has gone up. I'm so tired. She told me that I have no excuse for not eating right (which consists of brown bread and brown rice oatmeal and vegetable soups etc) told me it was a life of sacrifice and asked me why it was that my significant other and my sleeping patterns were so vastly different than the rest of the population even though she knew my situation. I came away stunned and embarrassed and overwhelmed with the demanding list of things to do and feeling like a failure. Hours later I realized this "professional" was clueless and ignorant of what it means to have someone dying on them. I was mad at myself for not sticking up for myself.

 

I've come to the conclusion that I have to be careful in protecting myself psychologically from professional idiots.

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Reply by Tian
01 May 2012, 10:06 PM

Dear Bizzy
 
It seems like the nurse you saw didn't behave very competently. Not only are there lots of excuses for not eating right but there are lots of different ways to eat right. The more we find out about weight gain the more we see how complicated it is. It is also not compulsory to conform to the population (whatever that would be) especially if there are extenuating circumstances. For the most part I think professionals are competent (and definitely more so than nonprofessionals) but just because someone is a professional does not make them immune from treating you poorly. If you are not treated satisfactorily see someone else. However beware of quacks because one thing they are good at is behaving very nicely to people.

I myself often second guess after the fact. It usually doesn't do me any good. You seem to be in a very stressful situation which makes what you experienced all that more unfortunate.  But I am not clear about your situation. Are you caring for someone who is dying? If that is the case I suggest you ask the doctor in charge of the case to refer you to a diet expert or any one who can help with any aspect of your situation. And feel free to continue to post here. We won't treat you like that nurse you saw.
Tian
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Reply by Cath1
02 May 2012, 3:00 AM

Hi Bizzy:

Welcome to Virtual Hospice!:-) I'm sorry you had an upsetting experience yesterday. Like Tian I am also a little confused as you mention that the nurse you dealt with didn't seem to know "what it means to have someone dying on them." Are you referring to your significant other?

Weight problems are a challenge for many people and loads pf people have lifelong poor eating habits that they learned as a child. In my opinion our stressful lives and fast-fatty-food dependencies don't help us maintain an ideal weight.

Those who study and counsel us on nutrition and wellness naturally suggest that we make better dietary choices as a way to establish a more balanced food regimen that would promote good health while aiding in losing extra weight, if necessary. Sometimes clinical people are exactly that - clinical - and though they may be well-meaning their message may come across as cold and judgmental.

Is it possible that you are in a very sensitive place in your life right now and took to heart the suggestions about your diet and sleep patterns without explaining to the nurse how touchy these topics may feel to you? Could you have been ill-prepared to receive the information and learn about the work required of you to succeed in your goal to lose weight that you reacted because you do feel embarrassed, and overwhelmed and a failure? I ask these questions because I have at times when feeling low about myself taken personally someone else's unwanted advice. Sometimes we perceive things negatively and take personal offense where there was a good intention to help us rather than to hurt us. If one of our vulnerable spots is suddenly pricked we don't generally feel good about it especially on first acquaintance.   

Sometimes when we seek support of others we don't state exactly what it is we need and the person then decides from the information we offer what kind of help they can give. Perhaps when you asked for help with controlling your weight the nurse simply gave you the best literature and advice available to her and didn't see beyond your immediate concern to see your real need. Not everyone is keenly perceptive, and no one is perceptive all the time.

Having said all that, I personally feel that people who appear heavier are treated poorly at times by many people in our world. It is not right, but it happens. Our society glorifies healthy and thin people - and youth!:-) 

It's great that you are seeking ways to improve your health as it sounds as you are a caregiver as well, and if that's the case, you need to look after yourself. Try to re-think the situation and don't give up on yourself or your mission to feel better about yourself due to one person's response to you. If possible, speak to the person and calmly share your feelings about how insecure and defeated you felt after you left the consultation. It may be that the nurse had/has no idea how you were affected by the interaction and she may be receptive to your concerns. If not, you should seek another opinion and speak honestly upfront with the next person about how you're feeling and give them some context about the other things that are going on in your life so they will have the chance to accommodate and respect your needs.

It could be that you just happened upon a really insensitive healthcare worker and if that's the case, I am sorry and hope you will meet kinder examples of carers in the future.

Please let us know more about your situation if and when you feel ready. We are here to listen - friend to friend!:-)

hugs xo

Cath1
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Reply by Bizzy
03 May 2012, 6:35 AM

This week my partner cleared out his closet of clothes and donated them to charity in preparation for his death. I stood there mortified, unable to move. It was just too much, adding insult to injury. I couldn't help him do it. I just stood there. This is all so surreal.


My partner is dying from cancer.  He was diagnosed 5 months ago. From the information I can gather and from what I am witnessing I doubt if he will make it through this next year. These last 5 months have been a nightmare of varying degrees of hell. Cancer is all consuming and has affected our lives from every single angle possible and on a multitude of levels; suffering in sleep deprivation, relationships, finances, time, energy, career, spiritually, socially, recreationally,   not to mention physically on every possible level. The pain from the beginning symptoms to palliative radiation treatment to recovery, I can only describe as perverse. I've never witnessed such deep uncontrollable pain that went on and on and on. And this is just the first cycle.


It has been a dreadful thing to find myself caught in the cancer system as a caregiver. Its not something I want to be in and its not something my partner and I ever imagined would happen. In a situation like this, kindness and caring is at a premium. It is a precious human quality that is rare within the system . I find myself drinking in every scrap of kindness that comes my way and deeply grateful a hundred times over for every demonstration of caring. These two graces have a remarkable ability to free me of my prison of psychic suffering and I immediately channel my energy into relieving my partner's suffering in any way that I can.


I don't understand how some “health care professionals” within the cancer system get past the screening process. Is it that insurmountably difficult to find people who have effective empathetic communication skills on top of technical and/or intellectual skills? It seems grossly ironic to reward some of these soulless experts with the big bucks when they would better serve society as butchers or mechanics. Meat and metal don't have emotional/psychological senses or needs. Their existence is not complicated. Meat and metal don't question or talk back or suffer.

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Reply by Cath1
03 May 2012, 11:55 AM

Dear Bizzy:

Your story stops me in my tracks. Thank you for sharing. I'm so sorry to hear that your partner has cancer. It's very sad to hear that you are both going through such a hard time which is further complicated so unnecessarily by those who are tasked with the duty to help you both. Now that you have joined this community I hope you will find solace to soothe your deep hurt.  

As your partner is dying your world is radically changing along with his. The carers you have  come into contact with have left you feeling unsupported and overwhelmed and there is no excuse for that having happened.

In my Mom's last few months before she died I came across some very cruel and incompetent healthcare workers and managers. It left me feeling for a long time bitter and betrayed by the system and many of the people in it. I'm healing with each word I write as I try to help others but the memories of those emotional assaults expose deep wounds. 

We have little choice when ill but to trust and rely upon the care of others and it is so unfortunate and unfair when empathy is absent and our trust is abused. It's difficult enough to be in the caregiver role without having to deal with additional complications and controversy caused by those we turn to for help and understanding.

Your weight concern is so minimal in comparison to the situation with which your partner and you find yourselves having to cope. I know how you feel when you say you feel grateful for every small kindness, and like you, I too wonder why some people choose the healing profession and how the harmful ones are not filtered out. Their unprofessional behaviour cannot possibly go unnoticed, and yet it sometimes seems as if no one observes or cares to intervene on the patient's or the caregiver's behalf.

I'm so so sorry for the hurt you feel and in my opinion you are justifed in feeling angry and deeply disappointed. You need help and kindness as you care kindly for your partner and I hope you will receive more of both as your journey continues.

And I retract my last question where I wondered if you could have been feeling embarrassed, overwhelmed and a failure. It is the system and some of the people in who have sadly failed you and that is their embarrassment to own and the cause of your feelings of overwhelm. I apologize to you Auntienana if anything I have said added to your emotional burdens. 

I hope you feel a lighter and more hopeful for having written about your experience and I hope you will continue to write as an outlet for your feelings. I am listening. I care. We all do!

Hugs xo 

Cath1
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Reply by moderator | modératrice
03 May 2012, 12:34 PM

Dear Bizzy,

Welcome to Virtual Hospice and for sharing more of your story with us. Cancer is all consuming and suffering, pain and anguish is not the patient's alone. It affects a whole circle of people around the person who has cancer, most notably you.

Perhaps you would like to share with Caron and CarrieK who are also caring for their partners who have cancer. Join them on the the thread:
For those moments when you feel alone, please remember we are here and listening.
Colleen
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Reply by Tian
03 May 2012, 4:20 PM

Dear Bizzy
 
My heart aches for you. I am a volunteer in a palliative care ward so I have seen how cancer can wreak havoc and you have experienced more than your share. I have come to judge doctors by how well they deal with patients and family members on a personal level since with the advances in technology and interpretation of test results these days most doctors can handle the technical stuff. I am fortunate to be part of a team of great health care professionals but I have also seen my share of doctors who run away from uncomfortable situations. I have little respect for them. I can assure you that good doctors and nurses and social workers exist but that means nothing to you until you find them. All I can tell you is, as exhausted as you are, you need to keep on looking. In the meantime you can consult a professional on this site and avail yourself of information here. Are you looking at the possibility of palliative care for your partner down the road? Is it available in your area? 

I'm also wondering about what support you are getting from friends and family. It's great that you have pursued issues related to your own health because you are caught in a grind that can easily cause your health to deteriorate and you'd be in poorer condition to look after your partner. But in addition to you looking after yourself you need others to help you too. Do you and your partner have kids? On the one hand they can be a source of support but on the other they need to be looked after too. 

Your not finding the professional help that you desperately need is making an almost unbearable situation even worse if possible. If it's feasible for you please keep is informed of developments and how you and your partner are doing. We cannot change the hard reality you are facing but we care.

Tian
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Reply by Bizzy
24 May 2012, 1:24 AM

I just finished a group session on cancerchatcanada with other caregivers.  It was amazing.  It gave me so much courage and strength to be in the same boat with others.  I was so surprised.  It helped me to adjust to what is happening and to accept, a little more, the coming death of my partner. I will be re enrolling because it was so influential in helping me to psychologically adjust. It helps so much to see so many others going through the same feelings, experiences, questions and pain. It changed a surreal painful situation into something "normal" or "common" even though that's not the words I'm looking for. 
 
I am putting my weight loss aspiration on hold as it requires major life changes which demands more energy and time than this present situation has to spare.  I have been considering diet clinics and, although expensive, might be a manageable option.

My partner's life is measured in months now.  Chemo is not an option.  Since we've exhausted all avenues with conventional treatments, we are considering alternative intravenous vitamin c therapy.

He presently has an infection in his jaw.  The radiation treatments opened up a wound in his mouth which then exposed the jawbone.  Its distressing and frightening having this hanging over our heads.  They are talking grafts, hyperbaric treatments and even possibly removing jawbone and replacing it with a piece of his rib.
 
I have connected with the local hospice.  I am so relieved there will be someone there to guide us when the end time has come.
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Reply by Tian
26 May 2012, 7:01 AM

Dear Bizzy

I'm very glad that you were able to find a support group. I suspect that the word you were looking for is "real"; acknowledging our mortality and sharing our experiences with others lets us get more of a handle on reality. Thankfully you have also established contact with the hospice and that will prove to be invaluable. Unfortunately all this will not change the outcome that you rightfully dread. In that regard I wonder if it is advisable for you to consider alternative, that is, unproven treatments. You and your partner already have too much on your plate. Is it worthwhile to subject your partner to a procedure that most likely only add discomfort and destroy hope all over again? I know that you have had bad experiences with helath care "professionals" but I would still advise you to seek out professionals who can help make your partner's remaining days as comfortable as possible. The way I look at things, quality of life trumps quantity of life. Whatever you decide, the next few months will continue to put you through the wringer. Please let us know how you are doing.

Tian 
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Reply by Bizzy
28 May 2012, 9:10 PM

Thank you Tian for your concern and words of wisdom and thoughtfulness.  For sure quality out trumps quantity. We are not looking for that elusive cure nor are we feeling so desperate as to think there is hope because clearly there is none and it is now just a matter of making his life as comfortable as humanely possible.

From what I have read in the most recent publications (2011 from the NIH, the NCI and the PNAS) specifically, ascorbate and not DHA taken intravenously and not orally and in high enough concetrations is showing enough positive results (40 - 53% chance of tumour shrinkage) to warrant further research and interest. The Journal of the Canadian Medical Association 2006 shows 2 xrays of lung cancer before and after vitamin c therapy.  One xray shows the lungs full of cancer.  The "after" xray shows a single lesion.  McGill university is conducting clinical trials but one must be a resident of Quebec to qualify and moving to Quebec is not one of the items on our bucket list.

The research and professionals opinions note that the therapy increases life by about a year and they suggest that it also increases feelings of well being. Its worth looking into at this point. Without a doubt its scary and hazardous to be stepping outside the safety and security of mainstream medicine into possibly snakeoil salesman land so we will tread very carefully, slowly and thoughtfully.

I am still so amazed at how much the cancer chat with other caregivers and the common experiences we shared has given me the strength and courage and stabilty to get through this. Its astonishing how words from a computer screen can make it actually possible to go through hell.


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