Fear, anger, guilt, determination

alex · New User Joined: 06 Sep 2005 Posts: 2

Hi all,

My wife has cancer. There, I said it. She's 26 and has just been diagnosed with Hodgkin's Lymphoma. The last couple of days have been like a nightmare we can't wake up from, with I would guess all the emotions and questions anyone might feel when told in the prime of life that they may have a terminal condition.

Truth is we don't know the full extent of the condition as yet, pending more scans and stuff. We've a million questions, most of which can be answered by google, but I was hoping to get the benefit of some first hand experience here on a few issues?

I want to make sure she gets the very best possible treatment. Due to some convoluted mess concerning public healthcare and insurance we find ourselves in the position of having to pay for the treatment. This hopefully shouldn't be a problem, though we may have to sell the house, cars etc. What I really needed to know here was, how much money will I need to make available immediately, and what's the likely cost through the year? We're currently in Australia in case anyone has any direct experience there.

From what I've read about treatment, the likely course of events will be chemotherapy, a term which strikes fear into both of us. Question is though, how intrusive is this treatment into normal life? We've long planned, and been looking forward to a 3wk trip to our home country to visit family & friends which we're supposed to leave for in four weeks. If she has to start with chemo before then, would it still be possible to take this trip?

Did we ought to seriously consider re-patriating? Health care here seems to be excellent, but of course being recent immigrants we lack the support network of friends and family we had where we grew up. Or is that potentially a blessing in disguise if she is to become ill during the treatment she may prefer not to have to see her friends & family? I guess it's difficult to know how an individual deals with such a situation until one's actually in it.

Thanks for reading. Thanks for any advice, tips, links, encouragement, anything really to let us know what we're up against.

Alex

emyahmr · New User Joined: 30 Aug 2005 Posts: 7

Hi Alex,

Found a good article that I would like to share with you. Hope that help you.
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Path to Healing by Bonnie Moss

It is within us to explore and draw upon our inner resources to heal.

Some wounds are embedded so deeply that no amount of professional expertise can cure, much less heal.

A famous Yale surgeon says that as a surgeon,
he cuts into the body, but he can not order the
wound to heal. Ultimately, it is through our efforts
that healing can occur.

The path to healing is a personal choice. It is a path
where you choose to piece together the fragments
and make it" whole" again. It paves the way to
self-discovery, to open the door to your inner self
and experience inner harmony. And ultimately, come to
meet the child within that has longed for your love ,
care and attention. The child within that is forgotten,
pushed to the background, lurks in the shadows,
but patiently waits to be acknowledged.

WHAT NEEDS HEALING?
Childhood trauma:
The imprints of childhood experience is a powerful
force. An expectant mother who lives through a stressful
situation during pregnancy share the burden with
the unborn child. Years ago,domestic matters were
never discussed openly, especially issues about abuse,
violence,neglect , abandonment and other related matters.
Today, society is more aware of the potential or
actual existence of abuse and violence in the home.

Tragic that the innermost and safest sanctuary society
depends upon can be the most dangerous.These are
issues that take its toll on the young victims. They grow
up with wounds, carry them around like a heavy load
on their shoulders.Some never get over their trauma,
it turns up at the most unexpected moment to haunt them;
yet, there are those who are lucky enough to confront
it and use it to propel themselves to a healthier mind,
body and spirit, successful relationships and life itself.

When love is a venom:
How many hearts have known pain all in the name of love.
It invades lives from all walks of life, social status,
add to that race or creed.No one wants to suffer pain,
but it does happen. Healing a broken heart, picking up
the pieces of broken hopes and dreams, suffer the betrayal ,
endure shattered self-image, re-live the haunting
nightmares, the violation of one?s innermost being,
soul and spirit...it can take a lifetime to heal.
The most traumatic of all is the violation that comes
from those who are supposed to provide a nurturing
environment to those who are entrusted to their care.
All in the guise of love.

Grief
The loss of a loved one can be most devastating.
Sometimes one did not have a chance to bid their
last farewell. It was all too sudden.Or one passes
away after a lingering illness, with the relief
that the suffering is over comes the grief of the loss.
At one point and time in one?s life, grief is a reality.

Guilt
Wrong turns, wrong choices, wrong decisions-
we all take wrong turns, make wrong decisions and choices.
This is a human trait, even the saintliest of the
saints has experienced this. We stumble, we fall, but many
of us manage to get up and get on with life.The losses
incurred at times may be life-threatening, or at the cost
of financial comfort and security or worst, relationships
are threatened, lost ,sadly but innocently or unconsciously
someone else has to bear consequences and the sacrifice.
Wearing guilt on your sleeves, in your heart, in your being
invites negative vibrations and digs you deeper into the mire.
Take a look at those sad eyes,the window of the soul ,
and you?ll know. However,this is not a dead-end!

Unfulfilled dreams and hopes
Live your dream,ride on the wings of hope- this will
not always work out. One day you wake up and realize
your dream never materialized and now you languish over
the many years you spent trying to pursue that dream!
All this while, time, opportunities and life passed you by .
Hope can lead to disappointment- realize this. When all
hopes are dashed , what have you got?

PATH TO HEALING:
Healing is a complex matter.
Who has never felt the pains of suffering, be it
physical, mental, emotional, material and spiritual

Even our dear Mother Earth is in desperate need of
healing from the abuse inflicted upon her through man?s
recklessness,negligence and lack of respect.

There are avenues open to healing. One may choose to
spend time with a professional, seek comfort from related
groups,from family, but always, healing has to start
with oneself, from within that deep well of strength .

It takes determination to face up to your dilemma,
but, ultimately,it is most rewarding to regain your personal
power, self-confidence, learn to love yourself and enjoy
that inner peace and calm.It is important to acknowledge
the pain, to recognize the cause, to be able to integrate
the fragmented pieces and be willing to take it to the
next step to be "whole"again.Then, you will be able to
share love and peace with the world once again.

Healing extends beyond the physical state- when the pain
is so deep, the spirit, the soul also bear the pain.
It comes in hauntingly in the dark of the night ,
it fills a once loving heart with venom, it could
ravage a once healthy mind and body. Beneath a once
beautiful and graceful soul is the mask of vengeance.
Venom for venom.

BLOCKS TO HEALING
Sometimes, the path to healing is full of potholes.
Indeed, the path is covered with blocks, where healing
can not be accomplished,it's almost out of reach.

Impediments on the path:
denial, apathy, self-absorption and self-indulgence,
addiction, putting up walls and barriers, busy-bee
syndrome, compartmentalizing, isolation,withdrawal
from society, cynicism, loss of faith, trust and compassion,
self-pity, poor ?me syndrome, anger, fear of getting
hurt again, martyr complex, neurosis or psychosis,
aggressive/ oppressive behaviour, confrontational attitude
guilt complex, resignation, loss of motivation.

Sometimes, we hurt those we love most deeply,
likewise, we bear the pain they cause. Time is a
great healer, but don't take the painfully slow
route and miss out on what the world holds for you.
Let life flow for you and with you.

E N D .
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lunula · New User Joined: 30 Sep 2005 Posts: 4

Alex,

I'm so sorry for your wife's diagnosis - what an awful thing to go through.

My father was diagnosed with hepatosplenic t-cell lymphoma on Aug 1. It is apparently extremely rare... in fact, none of the doctors where he is being treated had ever heard of it before, and he was never given a "stage" b/c so little is known about it, they just cannot tell us "where" in the disease he is.

After a lot of consultations w/ the Lymphoma Society, Johns Hopkins, Sloan-Kettering, Duke University, etc. -- they recommended a treatment protocol of chemotherapy (no radiation). I do not know the names of the drugs, but it was a intravenous drug for 96 hours (4 days) and then another drug was given on the last day, and he had to stay in the hospital the entire time (5 days).

Overall, he said he felt pretty good... he was given anti-nausea drugs and Procrit to treat anemia. His only complaints were boredom, light-headedness, overall weakness (though he was ill before his diagnosis, and had already lost abut 75lbs in roughly 2 months) and dizziness.

Also, his immune system was completely gone - he had his spleen removed (which is how he was ultimately diagnosed) - so he also had problems with random fevers, night-sweats and chills. He was given another medication to fight the fevers, so that's under control.

Unfortunately for my father, Non-Hodgkins is the more aggressive of the two, and the type my father has is apparently ultra-aggressive. From what I've read, there are many treatment options for Hodgkins Lymphoma - so if something isn't working for your wife, there are other options. Plus, age is really on her side!

I wish the best for you both!

Crystal1111 · Regular Joined: 18 Jul 2005 Posts: 27 Location: Florida

There are so many success stories with Hodgkins. In the limelight, a young actor from the TV series "Seventh Heaven" suffered lymphoma, went through all the treatment and is back on the show and looks fantastic. That's just one of the many success stories regarding this type of illness. He was only about 28 when he was diagnosed. Read about the cure rate and feel comfort from that. Be strong. Take it day by day and strength will come. I wish you both blessings, health, and love.

Crystal

Al · New User Joined: 12 Aug 2005 Posts: 1

I noticed you posted this 4 days ago, but im hoping you have a look back and see this to get an idea of what to expect.
Im 22 and i was diagnosed with Hodgkins just over 2 months ago. Im half way through my chemo now, just had the 4th of 8 treatments yesterday.
As far as it effecting every day life, it will but not to the extent you are probably thinking at the moment. I get my treatment once every too weeks (not always the same for everyone). I just thought id let u know some of the day to day effects your wife will likely experience.
I think the most accurate way to describe the effects of chemo are that it gives you a 'hangover' type feeling. This lasted for about 3 or 4 days after the 1st and 2nd treatments but was more like 5 days after the 3rd treatment. Thats not too bad really, it means u get about 9 days straight where you feel perfect. Getting sick is apparently reasonably uncommon these days for most people because of improved anti-sickness drugs that your wife will be taking. I personally havent gotton sick yet, and im half way there now. Another affect is taste. Most peoples taste buds are affect while getting chemo. I noticed it alot after the 1st treatement, and it lasted about a week. Everything tasted very bland, like i had a wax coating in my mouth! The affect was less after the 2nd treatement, only lasting a few days, and i didnt notice any affect after the 3rd treatment. But this is just me, its different for everyone.
During treatment, your wifes immune system will also be very low and so she will likely be told to stay home as much as possible and wrap up warm. This doesnt mean she is under house arrest for the course of the treatment, i personally still go out with my friends and play golf when i can. You just have to be more carefull, completely avoid anyone who is sick (even simple things like a cold or sore throat) and avoid crowd situations like movie theaters for the same reason.
As far as drugs go, i have to take 2 anti-sickness drugs 4 times a day, for 8 days after each treatment so i dont have to take any for the remaining 6 days. I also have to bush my teeth 4 times a day, and use a strong mouthwash (prescribed) each time. I then use an anit-fungal mouth wash too after the regular mouthwash. I also take 1 other (very tasty strawberry flavour Razz

) sweet/tablet each morning. This is simply to reduce stomach acid because chemo can damage the lining of your stomach.
The reason for all this oral hygene is because of the effects chemo has on the inside of your mouth. As well as the lining fo your stomach, chemo can also damage the lining of your mouth. This is because the drugs target the fast dividing (fast growing) cells in your whole body and kill them. The problem is, cancer cells are not the only fast dividing cells in your body, other cells are stomach and mouth lining, and your hair cells (which is exactly why your hair falls out).
This might sound stupid, but if you had to pick any cancer to get, Hodgkins is the one to pick! It is apparently the most curable of cancers and it is almost always 100% curable, with only a very small chance of it ever coming back. This is especially the case in such a young person.
Trust me, when you go to the hospital for the 1st treatment, you'll see alot of people in much worse situations and realise it could have been alot worse for your wife. I look at it all pretty logically (which is alot easier for me to do now after ive had 2 months to get used to it), but nobody is to blame for it and theres nothing you can do to stop it so there no sense getting annoyed/upset over it. Its only a small part of your life, and once its over you can forget about it and move on.
If you have anything youd like to ask me, fell free, ill try to check this thread now and then.

alex · New User Joined: 06 Sep 2005 Posts: 2

Thanks Lunula, Crystal & Al for taking the time to post, much appreciated.

Today however, I have some incredible news: Second opinion provides different diagnosis - the cysts are benign. We heard this about a fortnight ago, and it didn't seem real, so off to a third doctor to cast a deciding opinion. Result today: No Lymphoma.

There has been talk of some kind of mix-up with the first test results etc etc, but none of that matters one bit; she's clear. There's been a good bit of crying, followed by a longer bout of celebrating - now we're getting our lives off pause again and making some serious plans for the future. One thing we've both taken away from this is that life's too short, sick or not, and has to be lived to the full, every day.

Very many thanks for the support, and sorry to have raised a false alarm. I wish each and every one of you dealing with this bastard the very best of luck and hope you find the strength to make it through.

Over n'out,
Alex

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