› Forums › General Melanoma Community › Reliving the trauma a year later
- This topic has 15 replies, 4 voices, and was last updated 11 years, 4 months ago by
Bubbles.
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- October 6, 2014 at 3:51 pm
Hi
A year ago I returned home from a 10 day business trip to find the "depression" symptoms my husband (we were only married for 8 months) was displaying had worsened. I started a concerted fight to get someone look at it seriously. He was very apathetic, so I had to cajole, connive and lie to get him to a doctor 3 times in 8 days. Finally I had him admitted to a psychiatric clinic and the psychiatrist decided on an MRI – Thank God!. She told me not to worry, there is a 1% chance of it showing anything, but that was the moment I knew – he has a brain tumor. I was right…(sometimes it is awful to be right!). He had a 5.3X5.2 tumor in his right frontal lobe with severe swelling of the brain. During the two days we had to wait to see a neurosurgeon he deteriorated rapidly – paralysis, confusion and just total incomprehension. He became a little boy.
On the 23rd of October the surgeon removed the tumor. Then two weeks of silence. I kept on asking about the histology and just got silence back. Finally the doctor saw us to remove the staples from the craniotomy. But his first words to my husband was: "Take off your shirt." I knew. Melanoma.
He had already set up an appointment with a radiation oncologist for us for the next day. This is why he waited so long to give us the histology results. There was no time to look for a second opinion or to do more research. I was panicky and hubby still apathetic. The radiation oncologist (telephonically) informed my husband (who couldn't care) that he is changing the radiation treatment from SRS to 3D conformal radiation therapy. I couldn't get answers since I am not the patient. He had 5 sessions of radiation – how much I don't know – because I am not the patient.
I started hunting for a medical oncologist and finally found one through my husband's nefrologist. He is one of only 10 in our country! It seems patients are by default sent to radiation oncologists since there are so few physician-oncologists. Never mind a melanoma specialist. (Our country has the second highest incidence of melanoma after Australia). This doctor is great! Yet he only offered watch and wait – it would have been our preference too. In the mean time he has had MRIs every three months and is due for a PET scan in November. So far No Evidence of Disease! Thank you, thank you, thank you.
How is my husband doing? He sleeps most of the time, he is sometimes confused, he has developed epilepsy and is on two different medications, he has stage B chronic kidney disease, he has short term memory problems, there is something wrong with the way he walks, he has very little interest in anything outside the home. The way things look now, he will never work again. He even forgets to water the plants.
The man I married only 21 months ago is gone. Gone is the highly intelligent, very musical Maths genius with an acute social awareness. In his place I have a little boy eager to see me, who pines for me when I'm at work. I get nervous when we are in social situations, since he is bound to say or do something completely inappropriate. Some days are better than others. I still love him with all my heart and will always take care of him!
Currently I just feel overwhelmed and alone. I stopped talking about all of this to friends and family – thinking they must feel I'm always complaining. Financially it is a struggle, we both have college aged kids from previous marriages and just my income. Luckily I have very good medical aid (medical insurance), but I still have to contend with ever increasing cost of living and the realities of living in this country.
I am reliving every moment of one year ago. I am double guessing myself. Most of all, I think I should have stopped the radiation therapy – I suspect that is the reason for his current state, and why his confusion is growing. Suddenly I cannot stop crying…
I am grateful that he is with me and "healthy", I am sad that at 52 he is suddenly a very old man. I am truly glad I knew him before he got ill. I am all in all happy to have him around and to care for him. I just really wish I can have him back the way he was…
Now I'll dry my tears and cook a nutritional supper, while doing some work in between, because I fell behind today what with all the feeling sorry for myself!
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- October 6, 2014 at 5:27 pm
Oh Tina. I'm so sorry for the situation you find yourself in. All I can do is hope and pray that things improve in the future. The brain is such a mystery and you never know how it may adapt and heal itself in time. Hopefully I'm not stating the obvious but has your husband applied for social security disability?
Maybe others will share some brain experiences that will provide some hope for you. Hang in there!
Brian
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- October 6, 2014 at 5:27 pm
Oh Tina. I'm so sorry for the situation you find yourself in. All I can do is hope and pray that things improve in the future. The brain is such a mystery and you never know how it may adapt and heal itself in time. Hopefully I'm not stating the obvious but has your husband applied for social security disability?
Maybe others will share some brain experiences that will provide some hope for you. Hang in there!
Brian
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- October 6, 2014 at 5:27 pm
Oh Tina. I'm so sorry for the situation you find yourself in. All I can do is hope and pray that things improve in the future. The brain is such a mystery and you never know how it may adapt and heal itself in time. Hopefully I'm not stating the obvious but has your husband applied for social security disability?
Maybe others will share some brain experiences that will provide some hope for you. Hang in there!
Brian
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- October 6, 2014 at 8:58 pm
Tina, I'm also so sorry to hear about you and your husband's situation — I wish I had words to be more encouraging, other than to say how strong you must be to continue fighting for both you and him. I don't know anything about the healthcare system in South Africa, but I'm sure it's full of challenges as it is everywhere. You sound especially burdened by decisions you made about radiation therapy following his surgery. I know it will be hard to let it go, but try, try not to be so hard on yourself. Radiation following surgery for a melamoma brain tumor is the standard and while there are different approaches, there is no perfect answer, only a best choice given the information we have at the time. I've faced similar decisions with a brain tumor, surgery, and radiation treatment. You didn't make a wrong choice and you didn't cause his condition today. Instead, you and his doctors collaboratively made a choice that you believed gave him the best chance of survival and recovery. You have a lot going on, so please don't add to your burden by blaming yourself.
i wish you both the best, Joe
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- October 6, 2014 at 8:58 pm
Tina, I'm also so sorry to hear about you and your husband's situation — I wish I had words to be more encouraging, other than to say how strong you must be to continue fighting for both you and him. I don't know anything about the healthcare system in South Africa, but I'm sure it's full of challenges as it is everywhere. You sound especially burdened by decisions you made about radiation therapy following his surgery. I know it will be hard to let it go, but try, try not to be so hard on yourself. Radiation following surgery for a melamoma brain tumor is the standard and while there are different approaches, there is no perfect answer, only a best choice given the information we have at the time. I've faced similar decisions with a brain tumor, surgery, and radiation treatment. You didn't make a wrong choice and you didn't cause his condition today. Instead, you and his doctors collaboratively made a choice that you believed gave him the best chance of survival and recovery. You have a lot going on, so please don't add to your burden by blaming yourself.
i wish you both the best, Joe
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- October 6, 2014 at 8:58 pm
Tina, I'm also so sorry to hear about you and your husband's situation — I wish I had words to be more encouraging, other than to say how strong you must be to continue fighting for both you and him. I don't know anything about the healthcare system in South Africa, but I'm sure it's full of challenges as it is everywhere. You sound especially burdened by decisions you made about radiation therapy following his surgery. I know it will be hard to let it go, but try, try not to be so hard on yourself. Radiation following surgery for a melamoma brain tumor is the standard and while there are different approaches, there is no perfect answer, only a best choice given the information we have at the time. I've faced similar decisions with a brain tumor, surgery, and radiation treatment. You didn't make a wrong choice and you didn't cause his condition today. Instead, you and his doctors collaboratively made a choice that you believed gave him the best chance of survival and recovery. You have a lot going on, so please don't add to your burden by blaming yourself.
i wish you both the best, Joe
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- October 6, 2014 at 11:58 pm
Oh, Tina. I am so sorry. I am glad you at least let some of what you are feeling out by telling this forum. None of us can fix it. But, perhaps you can let some of the pent up emotions go and be freed from some of your pain and sadness by doing so. I am the one with melanoma in my partnership. However, I have always contended, and 11 years in am certain, that my husband has had the hardest burden to bear. I really do not think you have to continue to carry the load of worry that the radiation caused your husband's current condition. It seems very clear to me that the position of the tumor and the surrounding edema did the damage that the two of you live with today. I can do nothing to ameliorate your pain. It is probably just hitting you all at once after having had to be so strong for so long. However, there are many of us out here…ready with long distance hugs…if it helps. Yours, Celeste
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- October 6, 2014 at 11:58 pm
Oh, Tina. I am so sorry. I am glad you at least let some of what you are feeling out by telling this forum. None of us can fix it. But, perhaps you can let some of the pent up emotions go and be freed from some of your pain and sadness by doing so. I am the one with melanoma in my partnership. However, I have always contended, and 11 years in am certain, that my husband has had the hardest burden to bear. I really do not think you have to continue to carry the load of worry that the radiation caused your husband's current condition. It seems very clear to me that the position of the tumor and the surrounding edema did the damage that the two of you live with today. I can do nothing to ameliorate your pain. It is probably just hitting you all at once after having had to be so strong for so long. However, there are many of us out here…ready with long distance hugs…if it helps. Yours, Celeste
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- October 6, 2014 at 11:58 pm
Oh, Tina. I am so sorry. I am glad you at least let some of what you are feeling out by telling this forum. None of us can fix it. But, perhaps you can let some of the pent up emotions go and be freed from some of your pain and sadness by doing so. I am the one with melanoma in my partnership. However, I have always contended, and 11 years in am certain, that my husband has had the hardest burden to bear. I really do not think you have to continue to carry the load of worry that the radiation caused your husband's current condition. It seems very clear to me that the position of the tumor and the surrounding edema did the damage that the two of you live with today. I can do nothing to ameliorate your pain. It is probably just hitting you all at once after having had to be so strong for so long. However, there are many of us out here…ready with long distance hugs…if it helps. Yours, Celeste
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