Fatigue, and the Cancer Card.

JessicaV · 07-31-2015, 06:12 PM

Forgive the rant I am posting here, but I am just feeling really stressed, low and exhausted.

In an argument over a confusion about plans for getting takeaways, I said "So who has been upset and messed around most by this problem", and my husband replied "And who's got cancer then?"

He then went on to say that I use the cancer card a lot in inappropriate ways, eg telling the man who cut off the gas without warning that I need my hotwater to stay connected because I am not too well because I am recovering from cancer treatment. And like accepting the wheelchair offered by the airline when I only asked for priority boarding(I was boarding a 4hr flight alone in the evening and utterly exhausted beyond belief and they could see it and I couldn't). And like asking him to take me out for dinner because we had no gas to cook with and I was still recovering from my late flight. Takeaways from 2 different places were his choice and I was too tired to argue further.

I still have severe cognitive and physical fatigue, but my doctor has insisted that I should work two days a week in my really exhausting job (though normally I love it) ie as a psychologist, because this is the back-to-work programme she told the insurance company was in place. So I am too tired to do any of the things I used to do to manage the fatigue, like meditation, pottery class, morning drawing, etc. And our finances are at a point where costs come out of our offset account so the mortgage goes up but a man will get away with $1500 unless I fight for it. Any income I make reduces the small amount of insurance I get paid. And I am in the middle of a once-only training that is very important to me, yet arduous and some of the people are really difficult, and I have to do a return 4 or 5 hour flight each month. And the backyard is getting really overgrown with blackberry and may start to house snakes from the wild reserve next door if I don't clear it (and this is my job because it is my garden)

I have a lovely daughter who walks with me almost every day who says she is worried about how much more fatigued I am now I am working again, that I take things to heart because of it, and she thinks I should be asking for more help because of my cancer-related fatigue, not less, and that I am not being manipulative. She does tell me painful truths when she needs to so I don't think she is just being nice.

I don't like being judged my my husband and told I am lying about the ongoing impact of my treatment. I really am close to breaking point. I am trying to make him understand but he sticks to his view. It seems that he doesn't see me or understand me at all. And what he does see is a somewhat despicable, manipulative person. Which feels like he is adding insult to injury.

How do you cope with this level of fatigue and still have a job, relationship, cope with the gas being cutoff, people billing you for $1100 with no cause, etc. It is not really a question of is it valid to use the cancer card, it is a question of how do I get through the next day. Please advise. I think some of you get it.

KathyT · 07-31-2015, 07:23 PM

Jessica,
I am so sorry you are having trouble. I also struggle with fatigue, have no energy or motivation to exercise even though I know it is the best thing for me. I'm sorry you aren't getting support from your husband, it's really hard to do this alone...
This journey is filled with so many ups and downs.....I wish I could just do the treatment(chemo, radiation, and surgery) then it all be over....but that's not the case...
This is the best place to vent and let it all out. Hope it gives you some comfort knowing your not alone in the way your feeling.

Kathy

JessicaV · 08-01-2015, 03:46 AM

Hi, thanks for your kind support.
Jessica

europa · 08-01-2015, 05:41 AM

I found myself using the cancer card to explain the radical awakening I was undergoing. Cancer was the best thing that ever could of happened to me. Seriously. Even though it can come back and kill me, I am grateful because I live so differently now, so fully. However, during this transformation and in the midst of Taxol I found that I had little to no patience because I was drained...all the time. I would cut people off because I didn't have the energy to hear them out. And I would use cancer as the excuse. Actually cancer became my excuse for everything. I became selfish and you know what, I am glad I did. For once in my life I thought about me and only me. My partner and I were not getting along to say the least and so one day I came home from treatment, sat next to him on the coach and said: listen, I have cancer, and treamtent is taking over my life. You add to the stress. So you have to leave. It was tough, but it saved me. I also have used the cancer card to get ahead of the line, because I was exhausted and standing for long periods of time was impossible. I used the cancer card once and got upgraded to first class, that was fun. But since leaving treatment and being NED I have noticed that I don't use the card anymore. It's not for me to use anymore because others, like you need to use it. This is your time to be a bit selfish and if someone comments that you are using it too much....just let it roll off your mind. They really don't know what you are feeling inside, so use it. Because of cancer I now have boundaries and take great care of myself and my sould to make sure I am as happy and at peace as much as possible. And sometimes I remind myself that I matter and that I developed cancer and went through a horrible treatment to be here, to be present. So I use the cancer card on myself, to remind myself when I need reminders of how blessed I am to wake up every single day.

agness · 08-01-2015, 05:58 AM

I bounced back rather well from treatment but this spring went on a slow decline. I think I was unusual but I was doing targeted nutrition which helped immensely -- based on blood labs by my naturopathic oncologist and additional research into the adrenal and liver basis of my disease on my own.

I have read of others who had a very rough go with TCHP, including a woman my age (mid-40s) who almost died. How our bodies respond is do individual.

I'm sorry you feel pushed to work once again. I was working too but I think I can mostly put that to rest now except for small consulting projects.

I guess I would say to you to get more blood labs done and see if you can help heal your body more. Here are some things to check:
Serum zinc
Ceruloplasim
RBC magnesium
Serum magnesium
Ferritin
Vit D3

BonnieR · 08-01-2015, 09:45 PM

As far as I'm concerned you can "play the cancer card" for as long as you feel the need. Nobody would choose to have to do so in the first place!
You have a big list of concerns and burdens that are overwhelming you in your fatigued state
I remember when my oncologist didn't think I warranted a temporary handicapped parking permit. But I knew how exhausted I would get just walking across a larger parking lot and I was angry that she didn't appreciate that aspect of treatment. ( I got the permit from my GP)
Your husband might be having his own issues and is taking out his fears/ frustrations inappropriately on you. I think sometimes people feel we should bounce back faster than is realistic. Maybe he is worried that you're not all "cured" and your old self
And for Gods sake, somebody better cut that yard before the snakes invade!!
Keep the faith

Donna H · 08-04-2015, 06:52 AM

Having cancer and going thru treatment for it is the absolute most appropriate time to be selfish. Do what you need to do to get thru it. 2 saying comes to mind - the squeaky wheel gets the oil and ask for forgiveness, not permission.

ariana · 08-04-2015, 08:14 AM

{I don't like being judged my my husband and told I am lying about the ongoing impact of my treatment. I really am close to breaking point. I am trying to make him understand but he sticks to his view. It seems that he doesn't see me or understand me at all. And what he does see is a somewhat despicable, manipulative person. Which feels like he is adding insult to injury.}

I would have the cowards attend a cancer meeting with group support people who
are all going through the same same SO THEY CAN LEARN FROM OTHERS WHAT IT IS
LIKE. If they dare to go.

JessicaV · 08-04-2015, 03:41 PM

What wonderful, kind, helpful replies from you amazing people. You have no idea how much it is helping! I feel understood and supported, but also humbled when I look at your individual journeys which have been pretty arduous and horrible yet you make time to help people like me get through a bad patch
Thank you

TKasander · 08-07-2015, 08:09 AM

Jessica,
I'm with Bonnie 100%. Not only is going through treatment and being your own advocate exhausting, it takes over your life. Any little bit that eases the burden - go for it. Money problems on top of all of the other stress sure makes things difficult, but at some point what you can do is all that you can do. Encourage your husband to talk with someone other than you about his method of dealing with your illness. It took a lot of coaxing for me to finally do it, but it made a huge difference in our relationship. Sometimes being the care-giver is exhausting too, but we feel guilty that we can't fix the problem and we inappropriately lash out from time to time. For me, it was about the frustration of not being able to do more and sometimes Denise felt like she was being blamed when I didn't mean that at all. Hope this helps.

Ted

JessicaV · 08-07-2015, 12:29 PM

I have learnt quite a lot through this experience. One thing is that I have nursed a secret tendency to despise the feral, needy, demanding, incompetent, lazy cancer/chemo-victim I have glimpsed in myself since surgery, through all the ongoing fear-ridden and fatigue-ridden months. I have been afraid I am being a fat, demanding slug. Which is why his judgement of me hurt: it mirrored my own judgement of me.

Another thing is that to live with the fatigue and continue towards recovery, I MUST keep going with the things that feed my spirit: my lovely local pottery class, my meditation group, and daily morning walk to a local cafe to sketch my coffee cup on the table with the cafe behind, my daily evening walk with my daughter. When there is little that feeds me and many things that drain me, life feels pretty crappy.

And a third is to recognise that Ian and I both crave for the cancer, and the fatigue to be gone for good, and we have both rushed towards a pretense of "normality" and into a denial of the ongoing fatigue and fears.

So it has been important for me to become staunch enough to defend myself against his harsh judgement, for us both to own the truth and to live it and our relationship more consciously, honestly, acceptingly and lovingly.

SoCalGal · 09-02-2015, 12:27 AM

July 2015 Worktrial - perhaps you "trialed" and it isn't working for you right now. Is not working yet an option? Fatigue (chronic fatigue) is a real thing. Yes, nurture and feed your soul, EXERCISE even at gunpoint (it is the only proven method for fighting fatigue, 20 minute walk 1 of 2 times a day is part of the healing regime). Glad you've realized some insights, overall it does take awhile to get back to your "old" new self.

jacqueline1102 · 09-02-2015, 03:03 PM

Greetings Jessica,

I echo what everyone else has said here. I will add that you ask your health care providers to check your iron levels. My ferritin came back this week at 6.1. This is extremely low. So, you can do all the good stuff that everyone has mentioned and still feel fatigued. The issue may be your iron. Docs don't tend to check iron too often; not seen as a necessary test. And with chemotherapy treatment, the results even if after a few years has shown that iron levels, b12, D3, can take a big hit.

Good luck,

Jackie

Donna H · 09-02-2015, 04:31 PM

I liked the "old" new self line.....after all that we have been through and continue to deal with, we can kiss our old self (selves??) good bye. I think realizing that life will not be the same as it was before all this helped me to cope with everything. I had to stop focusing on pre-cancer life and move on. Tomorrow is a new day. Why not make it a good one??