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Reply by Bizzy
25 Sep 2013, 4:19 AM

These last two years have been very hard.  He's lived a lot longer than any of the professionals predicted which I am grateful for but its been frightening to see his constant suffering and the endless parade of doctors, nurses, hospitals and procedures. Someone told me head and neck cancer is the worst as far its effect on breathing, eating, posture.  I have continued to see a professional counselor and I'm developing stronger bonds with my family members.  I've enrolled in cancerchat again and enrolled in a mindfulness meditation program.  They both start in October. I do go out every night for a couple hours until the stores close at 11pm. Its lonely seeing the empty parking lots and the empty rows in the department stores. I've tried oxytocin shots to try relieve the loneliness and I take vitamins regularly. I've gone to a few caretaker meetings and attended a meeting for the family members of stage 4 cancer once a month.  I've asked the palliative team a couple weeks ago to connect me with their social worker but I haven't heard anything back from them yet.  My boyfriend cancelled the visit from the palliative nurse  so I will have to get hold of them on my own. I will talk to my counselor about adding in anxiety medication. I got my yumalight today so I'm trying it out tonight.  I just feel like a circus performer trying to balance on a ball while spinning plates in the air and holding a stick on the tip of my nose.
I've lost 70 lbs this last year on the hcg diet.  It was easy since there is no exercise required and while I sleep I lose weight.  Its a strange feeling to feel skinny.
My partner is very resistant to any help so I've had to push hard to get him to do anything.  This goes so deeply against my nature to have to push someone. It really upsets me to have to push.  He doesn't like the lights on at night so I live in the darkness with small lamps and watch that he doesn't fall.  He's deeply invested in his routine so I can't change anything in the house.  I wanted to get a treadmill but he balked at that.  Its not my house so I can't override his decision.
His eyes are swelling shut and his legs have been swelling for two weeks.  I finallly got him to call the doctor and we have an appointment tomorrow.  He sleeps a lot on his feet!  Its so scary.  I can't make him lie down or even sit down.  He just hangs onto the edge of the counter top and sleeps.  I tried putting pillows down around him this evening and I went out to get some groceries.  I came back and he had put the pillows back.  The nurses don't know why he falls asleep on his feet, the pain clinic says its not the pain medication and the doctor doesn't know either.  I'm at a loss. 
I'm scared. I'm seeing changes in him these last few weeks that are more than I've ever seen.  I finally got him to do his will and to make arrangements for his body.  He's going to donate to the medical school.  I hated having to push him to get this done.  I'm just so scared at the changes I'm seeing.  
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Reply by NatR
25 Sep 2013, 5:01 AM

Dear Bizzy,

 I cannot imagine the pain and fatigue you are dealing with.  No one can understand til they have walked in your shoes.

You are an exceptional and caring person. Never doubt that.

I hope that the light helps your mood and make you feel a bit more energized - honestly your body is taking a lot and has been for quite a time.

i hope you will continue to share and feel supported here,
sending my thoughts your way,
NatR
 
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Reply by marstin
25 Sep 2013, 5:25 AM

Hi Bizzy,

You poor girl! This is so much for you to have to deal with. Does your boyfriend not have any family members that could help you? It sounds like you are tiptoeing around  and doing your best to make him happy but at what cost to you?

Has there been any talk about hospitalizing him at all? I understand that he probably wants to pass away at home but it sounds like it's becoming very difficult for you to take care of him. I remember how tough it is to have to deal with wills and final wishes as it makes it all too real.

You are talking about swelling. It might be that his kidneys aren't functioning properly at this point..That could be why he is sleeping standing up because it eases the pressure. I'm sure that the doctor will be able to give you more information tomorrow. That must be so frightening to have him sleep standing up and have the worry of him falling down. When you talk about the changes in him the past few weeks, it reminds me of certain facial changes I noticed in my partner as his illness progressed. Nothing that I could really pinpoint, just something different. Is that what you are noticing?

Having invested so much time and love into caring for him, have you given any thought to what you will do in the future? Do you work on top of all of this? It's good to know that you have joined many groups and reached out for support in as many ways as possible. It's an important thing to keep connected to the outside world so that you don't feel so alienated.

I hope that your new lamp helps you feel a bit better. At the risk of sounding stupid, what is the hcg diet?  Seventy pounds is alot of weight to lose in a year. I imagine the stress also plays a role in the weight loss.

Know that we are here to listen to you and try to bring you some comfort on this journey.

Hugs,
Tracie
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Reply by Tian
25 Sep 2013, 2:03 PM

Dear Bizzy

I'm very glad that you are getting closer to your family and that you are continuing to get professional help. But it is still totally understandable that you feel scared because of what you are being subjected to. And I greatly admire you for going against your nature and pushing your partner to do necessary things. I am generally in awe of what you have been able to accomplish these past two years. I hope that the light therapy will help you but I think what will help you the most is getting to the light at the end of the tunnel. But you will have more to endure until then.

Tian
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Reply by Bizzy
30 Sep 2013, 10:40 AM

Tian..  your comment "light at the end of the tunnel" so surprised me I found myself laughing and crying. No the yumalight doesn't do the trick. I still feel a sense of forboding when the sun goes down.  I can feel the darkness swallow up any sense of normalcy that carried me for the couple of hours the sun shone.
Answers are not clear. They haven't been for a long time.  It seems that now though is when I have to let him go.  It is the compassionate way.  He's smoking again now and then. Thats what brought the cancer on in the first place.  A pamphlet that I was given by the nurse says its okay to let him smoke or do any other thing he wishes.  He wakes up deeply choking from the phlegm that builds up in his lungs.  It scares me. It scares him.
I would not have made it through these last 2 years without my counselor.  I know that my fate would have been dire. The emotional pain and the everchanging dynamics of this whole situation is too much for any one to go it alone. I am one of the fortunate ones...my counselor is truly exceptional.
As an only child my partner doesn't have any family here in the city except for his dad who is 86 and his cognitive abilities are decreasingly rapidly. I wouldn't be surprised if they die within months of each other. Although I worry about the old man I know that I am not in a position to intervene. 
When my partner was diagnosed with terminal cancer and given a prognosis of months we had only known each other for one year. The development of our relationship ended at that point to make way for this journey. Had things been different we would have hammered out our differences in the normal course of a courtship and either found a balance or ended it.  I have allowed him his way because its the answer that I found worked best in this situation. Yet for all his rigidity and routine it is these very qualities that I believe caused him to be a near world class golfer and free style skiier and to to excel as a salesman with over a million dollars in sales. Also, his routine has provided me with an anchor for predictability and a reference point from which to compare changes. It provides stability to my sometimes ethereal traits.
The palliative nurse says he is not ready for hospice. That was two weeks ago. The hospital says there is nothing they can do and wouldn't admit him. The doctor last Wednesday didn't know the reason his legs are swelling or the reason the other side of his face is swelling.  He did blood tests.  Hopefully there will be a result tomorrow. He told us to go back to the cancer clinic and get the oncologists there to look at him.  After trying for a couple days we finally talked to a secretary on Friday at the cancer clinic so I think she will get an appointment set up this week maybe.
The hardest part is watching him sleep on his feet.  I'm so afraid he's going to fall and really hurt himself bad but I can't stop him. Somehow I've got to let it go.

I've thought about what it is I will do in the future but there is no clear idea.  I am educated and experienced in advanced science but I don't know if I will go back to that.  I know I will make up for the time I've been away from my precious grandchildren. For now I only seem to have enough psychic energy to get through each day or should I say night.
The flood that hit Alberta in June hit us hard too.  His lymphadema therapy got cancelled until they found a new building to relocate to and I had relied on them to help direct us since we saw them almost weekly. Then he had an emergency hernia operation done. 10 days in the hospital. Another stretch without seeing anyone as he recovered. His post-op follow-up appointment revealed he has another hernia on the other side of his groin. Both he and I were just devastated.  His lymphadema therapist has been sick for the last 2 weeks so we haven't seen anyone for awhile. The cancer group I attended got cancelled and then shuffled around to new locations and everything is last minute. This flood really interfered with our support systems.
The hcg diet uses human chorionic gonadotropin injections and a low cal diet.  I have a doctor that prescribed it for me and he ran a bunch of tests before I started it. Thats when I found out I had developed high blood pressure and diabetes.  Those problems are all gone now. I've gone from a BMI of 34 to 23.5. Simply amazing for me because I was honestly stuck and my weight was climbing fast from the stress.   I think its just been recently approved in Canada because I hadn't seen it before and it must be a success because the price went up by 50% from $100 to $150 this last year. But I digress.
I don't know if there is a light at the end of the tunnel, except for when we die, I'm told. As I read the grief section I see I still have a way to go yet. It will be nice though to rid myself of this "Bobo, the dancing circus bear" survival tactic.
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Reply by Tian
30 Sep 2013, 11:23 AM

Dear Bizzy

Thank you very much for your update. Your dedication and adaptability continue to amaze me. Just to clarify, I was not referring to the yumalight as the light at the end of the tunnel although it would help if it worked. What I had in mind was that, at some point, this ordeal will come to an end. The grief will continue for who knows how long but Bobo will move on. And then maybe Severiano the performing seal may appear for a different set of circumstances. Life moves on.

Tian 
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Reply by Bizzy
02 Oct 2013, 10:21 AM

For sure writing isn't always the best way of communication and things get mixed up. I put two thoughts too close together.  I understand Tian that you weren't talking about the yumalight.  I just wanted to say how I appreciated the way you seguewayed into the "light at the end of the tunnel" from that point though.

I am feeling sooooooo comfortable right now.  I feel like I took a hydromorphone pill for my emotional pain. I got to spend 5 hours in the sun today.  It felt exhilarating and refreshing.  I loved being part of the human race. Then I found out that my boyfriend's thyroid is down.  This is the reason for his swelling and pain and suffering. Then I had a session on cancerchat and talked to a whole bunch of other two headed freaks in dancing circus bear costumes just like me.  I felt so liberated to find a group of people who were suffering as deeply as I and who were having the same feelings and experiences. I felt a tremendous load come off my shoulders today. I feel so well adjusted having participated in this group that I can relate to...that I know gets it.  I just want to wallow in this comfort for as long as I can. Its been a very long time since I have felt a sense of well being.

I had no idea how much pain I was in watching his suffering and being powerless to do anything about it. I feel such a relief to know what's happening. I had no idea how to help myself and somehow I managed to get some wheels turning and the return has been powerful. I realize that the pain I was in was way too much and clouding my perspective on life. I was in hell.  I thought "life is always going to be this painful, get used to it".

Next week I start mindfulness meditation practice. Perhaps it may become my Severiano for the next part of this journey.
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Reply by Tian
02 Oct 2013, 10:56 AM

And in moving on life takes twists and turns, even positive ones. You're still deep in the woods and it's a long journey but maybe now you've got a map.  

 
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Reply by Bizzy
10 Oct 2013, 6:34 AM

I'm in so much pain.  He's getting sicker.  He's fallen twice this week and twice last week.  He's got bruises and cuts on his shoulders and elbows. and head. We went to the hospital and they gave him an iv infusion to bring his calcium levels down.  They thought that might help with alleviating the sleepiness. It didn't help with the sleepiness but he hasn't fallen either. 

I'm so hurt that no one was monitoring his TSH levels.  It only makes sense now when I look back that of course someone should have been watching that since it was his throat that was radiated.  Of course his thyroid would have been fried. Someone should have been monitoring it.  Isn't that just common sense or am I asking too much? Is this what is causing him to be so sick now or is he dying or is it both? I don't know.  I doubt anyone knows.

Respite started coming in this week. They are scheduled to come in 3 times a week.  It helps to have someone else watch him and carry the anxiety while he sleeps on his feet. I just sleep when they are here. I could hear the anxiety in the voice of the respite provider about him sleeping on his feet.  I just turned over and went to sleep. The nurse is coming tomorrow. I've got her coming in now once a week. He's getting confused and its taking him longer to answer questions or to form his thoughts.  He won't drink water as the nurse advised and he keeps pulling the oxygen off his face. I'm so scared. His body is so skinny.  The skin just hangs off of him in folds. From the beginning I've been terrified of witnessing a death again.  I hope that it won't be traumatic or frightening this time. The nurse has talked about hospice.  He is resistant but I think I will have to force it when the time comes because I don't want to be alone with this.
The other day I was so scared that it was soon and I felt myself breaking from reality but the thing was that it was reality.  It was surreal.  It was like being in a waking nightmare but I couldn't wake myself up. I left him this evening for a couple hours to go try out meditation but I was so worried that I would come back to a body I couldn't sit still and ended up fighting off panic the whole session.

Then there was the "helpful advice" I got the other day.  Its been bothering me since and I've just got to vent my outrage and feelings of impotence. Someone told me that I had chosen this. That before I was born I had chosen to go through this.  I was furious when they said that.  I looked the guy in the eye and very coldly said, "I can unchoose it".  He looked shocked.  Good.  That's what I wanted. The extra guilt and self condemnation and helplessness that I felt from that statement was overwhelming. As you know I never get mad when I feel stressed out  Innocent  As I think about it I recall this "new age philosophy" came out in the 90's.  It doesn't help me.  It is like a poison but I can't fight or argue against something to which I don't remember being a part of. Yet he talked like he was some kind of authority. Then he went on to sagely advise that I look at the good things in my life. More guilt. It is like he is suggesting that I am not appreciative enough and if I would just be more appreciative then things would be better.  I recall hearing this "little gem" of wisdom years ago coming out of Oprah Winfrey's mouth. Considering the source I would say that yes I could be pretty damned appreciative about everything most of the time if I had a couple billion dollars and my own TV show.
It just seemed that every little protest that I uttered he had a rehearsed answer for and for which I was unprepared.  Kind of like being proselytized. I'm so furious. To think that we choose to go through this kind of fear and suffering for who knows what reason makes me think we are some very sick bunnies. To think that there is a force out there making us go through this for some higher reason makes me think whatever that force is has got to be sadistic and insane.  In a court of law I could just see how ridiculous it would be for some sadistic torturer explaining to the judge "I tortured this person to death for this long because it was for a higher purpose, for their character development, for there own good".  We'd put that sicko into an asylum for the criminally insane if not a life sentence in jail.  

Anyway,  I just had to get this off my chest before I implode.
 
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Reply by Tian
10 Oct 2013, 1:35 PM

Dear Bizzy

Good for you. You've got more than enough crap to fend off dealing with your partner's situation. No one has walked in your shoes. For someone, especially a stranger, to presume to know why all this is happening to you and how to overcome it is ridiculous. It's easier said than done but try to shake it off.

As far as your partner's health is concerned, I've been operating under the assumption that your partner has been dying for more than a year now. Although his physical deterioration and frailty for someone with his diagnosis is common, your shock and distress in seeing it up close is totally understandable. Unfortunately it may even get worse. You have shown yourself to be a very bright and perceptive woman. But it is impossible to foresee or explain everything that unfolds. There is so much to analyze that it is very easy to overanalyze. All I can offer is that you should try to focus on keeping your partner as comfortable as possible. That requires observing his physical and emotional state and that also requires that you don't neglect your own well being. 

Tian 
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