What bugs you about having Cancer? Besides the Obvious?

What Bugs You About Having Cancer, Besides the Obvious?
OCATS
Ovarian Cancer Awareness & Treatment in Saskatchewan
A SUPPORT & ACTION GROUP FOR PEOPLE AFFECTED BY GYNECOLOGIC CANCERS
December 2009 Support Group Meeting
What Bugs You About Having Cancer – Besides the Obvious?

Many patients speak about the seemingly insignificant but very powerful little things that
happen that make having cancer more difficult than necessary or belittle the patient in some
way. This discussion was held at our Support Group meeting not only as a way to allow
patients to vent and share their experiences but also to develop some tools to handle the very
situations that annoy us. At this group were patients, and patients’ support people who had
their own list, at the end. This is a summary of comments from a group of people – men and
women.
• Upon hearing you have had cancer – through discussion or being in a public
setting in which your cancer had to be mentioned – some friends and
acquaintances assume you are interested in all things “cancer” and go on at
length and in great detail about others they know/knew who have/had cancer
and who have died or are suffering. Yuk!
What to do? I heard about a woman who leads a group for pregnant women
and how they hate it when someone shares their “horror” story of delivering a
baby. They have come up with something that is really effective we may
want to try. When someone starts telling you a cancer “horror” story, or
unhelpful information or advice, put your hand up, palm towards the speaker,
and say “stop”, politely, with kindness and compassion but assertively. You
can say something like “I’m very open to hearing anything positive you can
share with me, however, only positive stories with happy outcomes are
helpful.” People often don’t know what to say, and need direction from us,
the patients. If that doesn’t work, remove yourself from the situation. Anyone
who persists is not interested in your well being so don’t feel guilty about
stopping this behaviour however you must.
• Well-intentioned callers who turn into “energy suckers” – very draining. We
try to keep in mind those people who at least are brave enough to reach out
to us, however, sometimes it seems to serve their own purposes more than
those of the patient. They drain our energy by talking about people who died,
constantly talking without listening, telling us a long list of what we SHOULD
do, say, eat, not eat, remedies, and giving us advice. Very difficult to cope
with when all you can do is make is from the bed to the couch and back
again.

What to do? Put your thick skin on – there’s no explaining the rationale or
perspective of some people. When you are in the public sometimes you
have to (even with your own family!) ignore the crap, and just move away
from it.
I eat and enjoy an extremely healthy diet but if this disease is going to kill me
despite all my efforts I don’t want to be like the women on the Titanic who
passed up having dessert…occasional treats are good for the soul and I’d
rather not regret having given them all up for nothing.
• Screening Calls. You have to be very careful about who you talk, when and
why. That’s just the way it is when you are ill. Don’t take calls when you are
too tired, don’t talk to certain people who drain you. Many patients find it
easier to email and update about themselves saying “sorry, I don’t have the
strength to call you all personally, but here’s what’s happening with me now.
Don’t worry, feel free to email me back, but I’m not taking calls right now. I
plan to call you personally when I feel better. Thank you for your concern.”
This leaves the door open for you to call who you want. I asked my husband
to take visitors at the hospital to the visitors’ room and tell them “the story”, I
just couldn’t take saying it, or hearing it each time people came. I got call
display so I could only answer the calls I wanted to take, and avoid anyone
who was too draining.
• Well-meaning advice. People who try to use our cancer as an opportunity to
push a new diet or alternative/complimentary remedies and therapies on us.
It may just not be the right time or the right advice for where you are at.
What to do? When someone starts offering advice on treatment or diet I
often say “been there, done that” to nip it in the bud.
I found it helpful to stop advice-givers and energy-drainers by saying, “you
know what would really help?” Most well-intentioned people respond well to
that. Then you can say, I’m trying every healthy thing possible but if you
could deliver a meal to my husband sometime that would be wonderful, or if
you could drop that book off in my mailbox I’d appreciate that…. or whatever
it is specifically you want. Women sometimes find it difficult to ask for help,
and people find it difficult to know what to do when you have cancer. Tell
them.
Those who really care about you will be happy to comply and those that don’t
you must avoid…this is a time when you must put your well being ahead of
hurting someone’s feelings.
• Having to say, “I have cancer” to people in social situations, or to a group of
strangers – some times there is a huge lump in the throat, or tears close by,
What Bugs You About Having Cancer, Besides the Obvious? Page 3
or it just seems too private and too personal for the situation. I attended a
workshop for people who have completed treatment put on by a cancer
agency. We had to introduce ourselves and I was almost last. One of the
first people to speak went on at length about how she was completely
devastated to hear the ovarian cancer diagnosis and all the reasons why it
was the worst ever, then her doctor called to tell her that it was actually only
stage 2, not 3C as they first thought. By the time my turn to speak came, I
could only say stage 3C ovarian cancer before I burst out crying. Normally
I’m a pretty strong person, but that was very defeating.
What to do? This is a tough one because, hopefully, the benefit of attending
the workshop outweighed this negative incident. Be aware that when you put
yourself in this type of situation you may have to take some bad with the
good. If you find the possibility of having a negative incident too devastating
then perhaps you aren’t ready to attend workshops or support groups yet.
Comfort yourself with the thought that with the passage of a bit more time
you will become stronger and less likely to “lose it”.
• It really bugs me when I hear people say about anyone, any illness, “he/she’s
not going to make it”! How dare they make that assertion? One time my
husband came home from work and said people were talking in the elevator
about a co-worker’s dad who had been hospitalized for heart surgery and
experienced post surgery pneumonia and one woman in particular felt
qualified to determine and announce a prognosis for him – he would not
make it. When my husband told me this I burst into tears and asked him to
never ever say that about anyone! I explained that I’m sure that people
around ovarian cancer patients do that too and I felt so insecure that I
couldn’t bear to have any negativity around me like that. I also asked him to
call people on it when they said that – to nip in the bud. The man in question
is alive and well 2 years later and so am I!
What to do? Exactly what you did!
• Hair. Losing hair, having no hair, having angel hair growing back, losing
chunks of hair and having hair grow back in spots only. Wearing hats or
wigs. It IS a huge issue – financially, personally, health wise – feeling good
about yourself. For many women it’s devastating when the hair falls out
because it’s a confirmation of the illness. For others, being bald means
nothing, but looking in the mirror and seeing no hair on the head, no
eyelashes, no eyebrows, no hair on legs, under the arms, pubic hair – makes
us feel much sicker than maybe we are although it’s from the treatment not
the illness. It’s a challenge every time you have to leave the house – wig or
hair or bald? It’s a challenge every time your family comes home –
sometimes its worse for the people you live with than yourself. It’s all about
trying to stay hopeful and strong. Very few women worry about the fashion
part of it but for some who need to be in the public this is difficult too.
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What to do? If you are self-conscious about your hair loss get a wig or buy
and/or borrow a hat and scarf wardrobe. Synthetic wigs are stylish,
comfortable and affordable. Hats and scarves are funky, fun and
fashionable. If you are not self-conscious…you go, Girl…you have admirable
self esteem.
• Because of the low survival rate, ovarian cancer patients are sometimes
treated like “dead women walking” by those aware of the statistics including,
unfortunately, some medical professionals. I often feel I need to remind my
doctor that I’m still alive, have a family and my treatment is just as important
as anyone else’s.
What to do? Speak out if you are being treated like this. It is unprofessional
of the medical community and unworthy in anyone, to dismiss us. We will live
until we die…the same as everyone else…and no one can predict when that
will be therefore we must demand that we be treated as any other cancer
victim…with every treatment available. Some of us do beat the odds and
survive but not if everyone gives up on us.
• Pink. The money invested in pink, the way Pink has become a marketing
tool without any investment in breast cancer, having a love/hate relationship
with Pink. How did this whole colour thing get started and do we want to, or
need to, do this with Teal before things can get better for ovarian cancer?
Actually the red ribbon campaign for AIDS started it. My mother had breast
cancer before things changed for breast cancer so I am glad to see the focus
and money being spent on breast cancer, but I don’t like it when companies
use pink to sell products. I won’t buy Pink things now unless they are
directly from Breast Cancer support groups.
• On the other hand, if we have to flood the world with as much Teal as there is
pink to raise awareness of ovarian cancer and research, until people are sick
of it, we will.
What to do? We need to be cautious about what products we buy that
appear to be associated with breast cancer or any other cause, and make
sure our money is going where we think it is…awareness, patient programs
and research.
• Family who care more about their own situation than that of the person who
is ill. My brother phoned me once and told me that his girlfriend told him that
it was harder on the family members than it was for the patient. I said, “Oh
really? Are you worried about dying? If you haven’t had a life threatening
illness then YOU DON’T KNOW”. I’ve lost my mother to breast cancer, and
I’ve had ovarian cancer – its not the same. Both are horrible, but you cannot
What Bugs You About Having Cancer, Besides the Obvious? Page 5
compare. The needs of the person with the life threatening illness are urgent
and critical.
What to do? Another tough one as what you can do depends on how strong
you are feeling, your relationship with that family member, his or her
personality and in what way he or she thinks that your illness makes them
worse off than you. For example, my sister wouldn’t come visit me when I
had no hair, I knew she couldn’t face me; she’s not very strong. So when I
was healthy enough to travel I drove to her city and took her out for lunch –
when I had no hair! It had to be done or maybe we never would have talked
to each other again.
Confrontation like this will work in some situations but not all… you must use
your judgement, as you know these people best. But in any case, if anyone
suggests that your illness has made him or her worse off than you, feel free
to set them straight on that point…its just nonsense.
From the Support People (what bugs caregivers about their loved one
having cancer?)
• We are often confused by our loved one – they are often unfocused and give
conflicting messages about what they want. I’ve felt overwhelmed as the
sole caregiver for a very sick patient and yet the patient rarely tells me
exactly what they need. I feel like I’m living on pins and needles; at
heightened awareness of their every breath yet feel unappreciated for the
stress I am going through.
• Sometimes patients and their doctors expect too much from the caregivers.
We weren’t nurturers, or have any medical experience and suddenly we’re in
charge of a person’s life and death. We often have no idea what to do and
there is no training.
• Often I feel completely inadequate as a caregiver – I do not understand the
system, the patient and what she needs or how to give it to her and I must be
the “happy strong person” all the time for both of us.
• I’m not sure I have the personality or skills for the role reversal but I try my
best. Sometimes my loved one doesn’t like the role reversal anymore than I
do.
What to do? Support People Need Support Too. Make sure that you ask
for what you need, be clear in stating specifics, weed out energy-drainers,
and ask people for things that will help – time out visitors, meals,
housekeeping, etc. Get counselling and respite when you need it.