Saturday, September 10, 2016
I now know two people who are at the beginning of their love and cancer story. They were both married before, and both lost their spouses to illness. They know the caregiver role well. Now he knows the patient role.
They met about a year ago, and their rhythms were a great match. They are both smart, funny, and welcoming. She's animated and active; he's more pensive and accommodating. He wraps her in his larger bear of a body, and she curls, catlike, in his arms. They suit each other. And they have come to love each other.
Several months ago he was diagnosed with cancer. In fact with two different cancers. Sounds bad, but the doctors are hopeful surgery can eliminate both -- once the tumors are shrunk though chemo and radiation to a surgical size.
They recently decided to get married. I haven't asked them why. I imagine it has to do with love, and giving, and caregiving, and a vision of hope. I applaud them for doing the normal thing in a situation of such............
Readers of this blog have deep experience with illness and its demands, and the hard, and often special paths it takes us down. What thoughts or guidance would you offer this couple?
Friday, August 5, 2016
I wrote a post about this topic a while ago, and readers are still offering comments. I think this is the case because illness and sex is a common but often closeted aspect of living with a serious health condition. When illness becomes the third partner in the relationship, it infiltrates into the living room, the check book, the social calendar, and the bedroom. If the couple is older, or younger, the intimacy-illness equation gets even more complicated.
I am linking to the original post. But more important than the post itself are the comments. I thank all those who shared their situations and heartaches, and solutions. I hope other readers find community and some comfort in knowing that we are not alone. Here goes:
"What do you do when your partner is no longer interested in or capable of sexual intimacy with you?
Illness takes many tolls, on both partners. One of them is too often sexual intimacy. Medications, pain, and exhaustion can not only turn a libido off, but can make intercourse painful for the ill partner. The well partner may be just too drained after a long day of caregiving, working, caring for kids, and running the household to want anything more intimate than falling asleep side-by-side. And the shift illness produces in some partner relationships -- turning a bond of equals into one of caregiver and patient -- can make sex feel like a taboo."
Wednesday, June 8, 2016
I thought this article was worth posting in its entirety (please forgive formatting issues).
Why being married could stop you dying of cancer: Sufferers have 'something to live for' if they have a spouse
- Analysis of 60,000 patients showed singletons were more likely to die
- Patients' other halves are more likely to 'hassle' them to see a doctor
- For one blood cancer the unmarried had a 43 per cent higher death rate
PUBLISHED: 18:06 EST, 7 June 2016 | UPDATED: 03:00 EST, 8 June 2016
Being married increases your chances of beating cancer, experts have revealed.
An analysis of 60,000 patients over ten years found single or unmarried patients with the disease were a fifth more likely to die.
Researchers say having a spouse or family gives sufferers ‘something to live for’ and makes them far more determined to beat the illness.
Patients’ other halves – particularly wives – are more likely to ‘hassle’ them to see a doctor about any worrying symptoms or remind them to go to chemotherapy appointments.
Being married increases the risk of beating cancer. Researchers said having a spouse or family gives sufferers ‘something to live for’ and makes them far more determined to beat the illness
Researchers from the University of California in San Diego presented their findings at the American Society for Clinical Oncology conference this week. They looked at the records of 60,000 men and women with leukaemia and other types of blood cancer between 2000 and 2009.
On average, patients who were not married were 21 per cent more likely to die than their married counterparts.
But among those with follicular lymphoma – a rare blood cancer – the unmarried had a 43 per cent higher chance of dying. And the figure was 37 per cent for Hodgkin lymphoma sufferers.
‘If you are single you don’t have someone at home nagging at you to get checked out.
‘This is particularly true with men. Women tend to have more support even if they are single.’
He added: ‘Married people and people with families are more likely to stick to treatment. They have a support system making them go to chemo, reminding them to take their medication.
‘They are also more motivated to seek out healthcare. To put it bluntly, they have something to live for. These results show that health services need to take more care of single patients – they need to be the surrogate for a spouse.
MARRIED PEOPLE ARE ALSO MORE LIKELY TO SURVIVE A HEART ATTACK
‘Single people often don’t look after themselves.’
The university’s Professor Maria Elena Martinez, who was also involved in the study, said: ‘Being single should be a red flag for doctors. If a cancer patient comes in without a family member or spouse it should be a warning sign.
‘Medical staff need to ask the patient about the support at home. Doctors need to go that little bit extra with single patients.’
Patients’ other halves – particularly wives – are more likely to ‘hassle’ them to see a doctor, researchers said
Previous research has shown that married couples are more likely to survive heart attacks, overcome high-risk surgery and also tend to live longer.
Adrienne Betteley, interim head of health and social care at the charity Macmillan Cancer Support, said: ‘We know that a cancer diagnosis can leave people feeling very lonely and that this can have a detrimental effect on their lives, with many forced to skip meals or attend vital appointments alone. At worst it can result in patients refusing treatment altogether.’
Cancer Research UK’s senior clinical adviser, Professor Arnie Purushotham, said it is ‘unclear why married people in this study seem to have better outcomes’.
But he added: ‘It may be that cancer patients who have close support of partners do better and this may be due to sticking with their treatment better and a network of social support. Developing such a network of support may benefit all cancer patients.’
Saturday, April 16, 2016
From an article in the Chicago Tribune:
"Married people seem to have a marked survival advantage, the researchers found: Single men with cancer had a death rate 27 percent higher than it was for married male patients, while the death rate for single female patients was 19 percent higher than their married counterparts.......What's more, this advantage appears to rely solely on the emotional bonds of matrimony and not the financial advantages that marriage offers......"
The article highlights the practical help well partners offer -- driving, shopping, reminders to take medication -- in addition to the emotional support that comes from having a loving, listening presence.
But the article, and the research it's based on, don't go far enough. It's not just that the presence of a loving partner can help with the fight against cancer. It's that the challenges cancer (and other illnesses) brings into the relationship can serve as a catalyst to finding more truthful communication and a deepened connection. Many of the couples we interviewed for our book said that they reached levels of intimacy that would not have been possible had it not been for the presence of illness.
The relationship has the potential to heal - emotionally, spiritually, and now there's research that shows that a physical healing can happen too.
Saturday, March 26, 2016
A dear friend had an episode of dizziness and a touch of confusion the other day. He is now scheduled for open heart surgery. You never know when a wound that's slow to heal or a bruise that just grows worse or a cough that lasts for months will wind up being a diagnosis you really don't want to hear. The point is not to live in fear; but to really live.
My friend has been getting MRIs and ultra sounds, talking with a multitude of specialists, touring cardiac ICUs of local hospitals. Every clinician he meets is friendly and reassuring. All his questions get answered. He is being well looked after.
His wife, however, is relatively invisible to these excellent professionals. She is an appendage, a steady hand to hold his frightened one. Not one of these very excellent clinicians asked her if she had any questions, much less how she is doing. And much less, how they are doing coping with this crisis together.
The partner in these situations is too often, sadly, a sidebar. But a side bar of whom much is expected. The partner is expected to be fully present during the hospitalization and fully responsible for the heavy load of caregiving that will be needed when the patient is back home. And the caregiver must give care whether or not she/he is exhausted from sitting for days at the hospital bedside, missing sleep, and eating badly. And she/he must take on the heavy care load at home that often involves helping the patient move, dress, shower, get to doctors' appointments, in addition to grocery shopping, laundry, child care, and going to work. And all this is on top of the caregiver's emotional exhaustion that comes from fearing the worst, watching her sweetie in pain, and feeling illegitimate for having her/his own needs and frustrations.
How much more bearable this load would be if health care professionals understood that their patient's outcome will be strengthened or weakened depending on the resilience of the caregiver and of the relationship between the patient and caregiver. If the caregiver sinks, the patient will sink even lower. If the caregiver feels recognized and appreciated by providers, she/he will transfer that support back into the caregiving relationship.
Of course, not all providers neglect the caregiver. And not all caregivers can, or want to, serve as caregivers. I would like to hear about your experiences as the caregiver at a time when your partner needed hospitalization. Did you feel recognized, or invisible?
Wednesday, February 24, 2016
From an article by a therapist at CTCA -- advice for couples living with cancer. He hits many nails right on the head:
1. Keep communication open: Communication may not always mean agreeing, but having a goal of being honest with one another is important.
2. Rely on developed skills: Most couples do not realize that they already have the tools to cope with cancer based on previous crises. Remembering how they overcame difficult situations in the past may help a couple develop coping strategies in the current situation.
3. Allow room for a "time out": Cancer can cause feelings of anger and depression. Allow your partner to feel their emotions and be comfortable with him / her taking a moment alone. The end goal is to fight the cancer, not one another.
4. Remain intimate: Intimacy does not necessarily equal sex. In fact, cancer treatment side effects often make sex uncomfortable. Instead, intimacy means spending time together - holding hands, reading together, talking, etc.
5. Find time to do the things you love: Take time to play and have fun together - fishing, going to a movie, playing a board game, or even watching a sports game on TV.
6. Boost your support network: When a significant other is diagnosed with cancer, the caregiver is tasked with extra responsibilities. Don't be afraid to ask friends and family for help, giving your partner a chance to take a break and process his or her emotions.
7. Find other couples in a similar situation: These couples, often found in support groups, may understand what you are going through. Don't be afraid to seek tips and advice from others, as well as share what you have found works in your own relationship while recognizing that each couple's experience is unique.
8. Keep each other accountable: Cancer causes stress, and stress compromises the immune system. Remind each other to participate in healthy activities to remain resilient - getting plenty of rest, eating nutritious meals and exercising.
9. Don't blame each other: Many people blame themselves or their loved ones for getting cancer, including being too stressed out, working too hard, or smoking. Realize there are many factors that contribute to cancer, not just one.
10. Speak with a therapist: Speaking with a therapist, who is unbiased and has experience with other cancer patients, can help couples express their emotions, confirm that the feelings they are experiencing are normal, and help provide useful coping tools.
Thursday, February 18, 2016
Illness is such a thief. It steals so many pieces of your life -- time, safety, even intimacy. It separates you from the "healthies" -- those who don't even know what a privilege it is to take their body for granted; those who don't couch every invitation with, "If I'm feeling well enough...."
Sylvia Plath's character, Esther, in her miraculous book The Bell Jar, describes her episodes of madness as feeling as if she were trapped inside an airless jar that distorts her view of the world and interferes with her ability to connect with others.
I've often felt that my pain condition was my bell jar, forcing me into a box too small and too rough to accommodate my real life. As if I still had a real life, an experience apart from illness.
Yet as much as I mourned my losses, the very fact that I mourned kept me tied to the experience of normalcy. I could not travel to Paris. I could grieve for the loss of Paris. Yet I kept thinking about Paris. And deep, deep inside, without language or image, a part of me quietly hoped I would once again walk those majestic streets.
Ironically, that secret longing for Paris kept me in life. It kept me tied to normal. And that tie, like the thread Ariande gave her beloved Theseus so he could find his way out of the Minotaur's labyrinth, helped me find my way out of the box, sometimes. The streets and smells and tastes and beauty of Paris were still alive in my imagination and in my memory -- beyond the reaches of illness.
In September of this year, Richard and I spent ten days in Paris. He understood what it meant for me to be there. And his understanding sweetened the experience.
What ties you to normal? What people, memories, experiences, dreams help you know that you are in life, and not inside that bell jar?