For Caregivers Only - When Cancer Lasts a Long Time

by Gumpus61

I had experience with cancer before it arrived in my marriage. Some 10 years ago my Mother made that awful phone call to me. “Can you call your brothers and sisters? It’s lung cancer and they are giving me a year”. Being tough Mom did not respect the diagnosis, it was about 15 months before she made the last call “come get me, I just want to go home”. 

Ann Shopping

Hospice came early that night and were back at 3:00 AM, and mother passed with her dignity. All pretty much according to our common understanding of cancer. They get sick, it sucks for all concerned, but in 6 months….maybe a year, it’s over.

Caregivers and kids move on with their lives, marked of course by the terrible sadness of what they witnessed. Some carry more of a burden, new responsibility or the pain of what cancer cost in Money. Everyone has to deal with one of cancer’s greatest thefts, Time. When Dad got Sick, and it was Cancer, he followed the script. My sister was the caregiver who sacrificed her time again, not quite so long this time. I saw the emotional price she paid and shuddered a bit…….my few hours or days helping hurt so bad. They could not have compared to hers.

So when the day came that a single tear rolled down my wife’s cheek and the doctor said cancer, I thought about Mom and Dad. I thought about a year or so of sacrifice and how that would suck. I resolved to be strong no matter what it took. I have written blogs before on this site. About the fact that guilt is such a part of cancer, about what they don’t tell you the day your wife is diagnosed. Go back and read them, they will give you context on what I am about to talk to you about.

Some cancers do not kill you right away. A woman who has lost her breasts will never forget her cancer, neither will her partner. That last’s a long time. But you can plan, you can look forward, you can get fat if you want to. Uterine and ovarian cancers are worse. High recurrence and dreadful treatment cycles make their own special hell for patients and partners. I keep mentioning partners. Because…when cancer strikes the whole household gets sick as well.

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After Ann’s diagnosis and all this stuff ringing in our heads, we went home and read about our own cancer. Primary Peritoneal Cancer, stage 3C. It took a couple of paragraphs to get through “poor prognosis” to finally read the words “uniformly fatal”. So you study some more, looking for hope. I was looking places my wife wasn’t, charts and graphs. I learned new terms like “disease-free progression” and “overall survival”. Mean, median, and average were all over the place. The bottom line was a graph that said they started dying at 12 to 18 months and only 20 % or so made 5 years.

That was 5 years ago.

Peritoneal cancer is rare. The peritoneum is a sheath of tissue that covers your major organs. It is loaded with blood supply and the cancer gets in there at a microscopic level…..and you can’t kill it. Year one was 6 months of treatment. Complete hysterectomy and chemotherapy before and after. The cancer was beaten back and stayed quiet for about 9 months. Another course of treatment, platinum therapy that killed Ann just slightly slower than it killed the cancer. We got about 6 months and then again, and again, and again. 6 or 7 lines of treatment and now the only drug that works is running out of gas.

Ann At American Airlines Headquarters

I can tell you that we have denied cancer in many ways over the last 5 years. Our lives became a cycle of treatment and recurrence. Each time the recovery is shorter, the treatment more difficult. But we lived well when we could and as we still can. The problem with reading that diagnosis is that there is not a patient who doesn’t start out sure it’s just not going to get them. So we did things you might not do if you were quite certain of a day and date. We lived as if she didn’t have cancer as long and as often as we could. 

But the damn stuff just wouldn’t stop. The natural cycle of grief went out the window, locked between denial and anger, never making it to acceptance. The same fight, over and over. You see, not curable and uniformly fatal are the same. Cancer can become a horrible chronic disease. It only quits when you do.

Ann At Garden

The list of things long-term cancer patients and caregivers lose is awful. Cancer over time takes your vitality, your sexuality, your mind, your body. The caregiver watches them go and misses all those things too. Our cancer happened when we were relatively young. I was just 56 when this started, my wife Ann just 51. We had been married more than 30 years.

Setting all the selfish things that a man can feel, and we can have some dandies, I think I can share some thoughts about caregiving for long-term cancer patients that might help others

Cancer has stolen a lot of the meaning from life for long-term patients, career, appearance, sexuality….gone. Cancer patients need to win once and a while. They do this by picking and winning small battles. Arguments over the mundane, setting the mailman straight about him slamming the mailbox…..and that mail order shipment is two days late! Caregivers should have a constant sore from biting their tongues. Do not say the mailman has been slamming that lid for twenty years. If she wants to make you a lunch and puts mustard on your sandwich for the first time……….tell her you wish you had them that way your whole life. You have to let them discover what they can no longer do, it’s just not important to be right anymore, about anything. Cancer has a strange effect, somehow it makes the patient smarter and the caregiver dumber.

Ann Hot Tub

If you’re younger when it starts, that sex thing rears its ugly head. Fortunately, or unfortunately, caregivers of cancer patients are toxic when it comes to that. Nobody wants to look like they are snooping around for the future, and nobody wants to wait. Just give it up. If after 5 years of cancer treatment your partner has some of that gas left in the tank, respect it. As sad as it is, my wife and I made love for the last time a long time ago. There is something you never want to approach “for the last time”. I suppose it is best that way. If you’re going to wander, know getting caught is the worst betrayal of any to a long-term cancer patient. Don’t be fooled by the “go sow some wild oats” comment…..they don’t really mean it.

So at some point your still partners, but as Ann and I discussed the other night, I have become a caregiver and she is a cancer patient. We still have good days and moments. I can still say cancer will not get her this week this month or this year. I hope to say the same thing in January.
As a caregiver, I feel trapped, lonely and afraid. I dare not dream of what’s next, because it only makes what “is’ worse. The thought of a new life with someone else and all that entails…………I am eager and afraid at the same time. After 5 years all of our work benefits are gone, insurance is over $3,000.00 a month, the financial pain now coming to roost. I just don’t know how much of me will be left when this is over. I grew up running to the front and leading, some would say I am an accomplished man. Cancer has tested me as no other thing. While I refuse to let it consume all of me, it has taken a chunk, it will leave a mark, and it will one day take my wife.

As a caregiver I don’t have the comfort of denial, I have no good place to put my anger and I cannot take it home. I fought and twisted and begged and barked and cried an ocean of tears…..and nothing changed. I am not trapped in the same cycle as Ann, I have learned to accept all of this as part of my life.

Mitch And Ann At Ballpark

At the end of the day, acceptance is the only true way to approach it, struggle just sets the hook of guilt and doubt deeper. Stick with your partner. Pay the price…..and find good days when you can. At some point, your long-term cancer patient will grow tired and join you in accepting the trial you have been tested by. Then and only then, does your life begin again. If you do it right you can get there with the strength your partner knew you had because all they truly want is to know everything will be OK when they are gone. I think I can give that to my Ann, as difficult as it might be…….and you can do it too.

"Gumpus61" is a member of the WhatNext Community and caregiver for his Wife Ann. He is a contributor to the WhatNext blog page with articles that chronicle their experiences with Ann's cancer. You can drop him a message on his home page at WhatNext

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