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I don't want to be alone anymore

Spacecase82
Posts: 3
Joined: Jun 2003

My husband (47) was diagnosed with Astrocytoma grade III on October 20th 2002. It was sudden and shocking to all of our family, especially for my husband, it was the morning of his birthday he had his first seizure to find a mass on the right frontal lobe. It all went by fast, I have studied neuropsychology so it was easy to talk to the neurologist and Neurosurgen. The surgery occurred 2 days after discovery. My husband was doing exceptionally well and we continued the fight with 6 weeks radiation therapy. No bad side effects except for food tasting like metal.

We flew through christmas with a new lease on life till in febuary another seizure occurred followed by dementia. They claim my husbands memory was deterioting and he will become inpossible only in a matter of time.

His memory improves, but once a month another seizure takes over and we start all over again with hallucinations, paranoia, and memory loss. His last seizure almost killed him. They wouldn't stop, so the ERs last resort was to give him a paralytic, which put him in a temporary coma. We are now battling another tumor in the same place. He's home now and is not fully understanding of what is going on with himself, but knows who family is which surronds him.

I've been very strong about everything. I have gone to support groups which are helpful, but haven't had the chance to meet someone who is in my husband or my position. Unfortunatly there are so many cancers in this world, but haven't been able to run into anyone with the same.

My parents moved in with us to help out, which was a godsend, but my mother has been recently diagnosed with NonSmall Cell Lung Cancer Stage II and will be recieving Chemo & Radiation soon. Clinical Trials look promising for my husband, will be talking to his oncologist about that tomorrow.

What I'm asking for is a pen pal, friend, or someone to share to me or with. I'm just so scared being alone through all this.

Heidi
Spacecase82@hotmail.com

mrsbe
Posts: 58
Joined: Jun 2001

Hi there Heidi,

I was diagnosed with a chondrosarcoma in 2000. I had a Crainitomoy and then proton beam radiation . I know first hand how hard this can be and would be honored to stand beside you and be your penpal while you and your husband go though this. Remember if you need to talk or ask questions or cry im just a click away. Im sorry you have to go through this. I wish you and your husband wellnes and strengh. MrsBe

lfrey911's picture
lfrey911
Posts: 6
Joined: Mar 2003

I just wanted to leet you know that you are not alone. You are going through a tough time now I know. I wwas diagnosed with an astrocytoma in 1991 and I have have surgery 4 times to have the tumor removed. I also had radiation in 1991. My latest surgery was This last October in 2003. I have gone through siezures and several downs and then ups withmemory loss. But GOD has a plan for me and is giving me strength. The Love of my family is keeping me going.

cherylk
Posts: 2
Joined: Sep 2003

Hello Heidi,
I'm replying from sunny NSW in Australia. Well actually it's 3am in the morning. I just wanted to share with you my success and perhaps put some hope into your lives.
In April last year (2 weeks before due to travel to Europe for 4 months holidays) I was diagnosed with inoperable lung cancer non small cell stage 3. I went on chemo every 3 weeks for 10 months as well as 5 weeks of radiotherapy. A scan in January and again in April this year showed that the cancer, which had not moved out of the lung, had reduced from about 7cms (medium sized lemon) to scarring. This obviously was great news. My biggest concern was that apart from scans there is no dietary follow up as we know that the chemo kills the bad cells but also kills the the good ones and chemo was treating all of my body in case any had slipped away (as happened).
In May this year having been given the all clear by my Oncologist I flew home to Port Lincoln in South Australia to spend a month with my family (who had all visited me for support at one time or another). I was there two days and had a seizure and ended up in hospital with suspected tumours in the brain.
After release I, Mum and carer flew back to Canberra to see the Oncologist and have a scan which revealed two tumours. The Oncologist was a bit negative (I did ask) and said that I would be dead by Xmas must admit I dropped my bundle for about two seconds and he said but then I did beat it before and I thought I'll beat it again as well. I'm taking Epilim and probably will for life to stop fits as scarring can cause them, but I was also put onto Dexamethasone (suppresses the tumour), which I am currently being weaned off - thank goodness, what a horrible drug. I had one week of Radiotherapy and then put down for regular scans and blood tests.
I thought I want more than this so I made an appointment with a Doctor Chen in Sydney with regards to my body fighting these "things". He has an excellent reputation and along with being an orthodox practitioner concentrates on the Traditional Chinese Medicine side -meditation/ acupuncture and chinese medicine of course.His website is:
www.complimentarymedicine.com.au
I go every fortnight to see him. A month ago went to Sydney and the night before ended up in a big Sydney hospital emergency room as I had had a seizure (had been off the Dexamethasone for a week). That night, an X-ray showed the lung cancer still gone and the brain tumours were stable. Back in Canberra put back on Dexa and appointment made for last week for another scan to see if tumours were still stable/ had grown/ shrunk but never thought the best possible outcome.
Saw the Oncologist last Friday the scan revealed that the tumours have disappeared completely with possible scarring i.e. in one month. In the Oncologist exact words "he has never seen anything like it before and whatever I'm doing to keep doing"
Now the only thing I have done different in this month is to take two tablespoons of, blended good asparagus(juice and all, in the morning and two at night. Obviously I cannot pin it down to any one thing. The radiotherapy/ TCM and a major one "positive thinking" all must have played a part - but quite frankly I believe that asparagus,which has well recorded cancer fighting properties, has also had a lot to do with it.
I found out about the asparagus from photocopies in Dr. Chen's surgery - it is an old U.S. document written in 1979 with all the usual success stories but as I love asparagus I thought why not give it a go.
I must admit that I have had no side effects over the past twenty months other than weak legs and can't sleep now due to Dexamethsone (gets absolutely blamed for everything)but that will be off my agenda at the end of the month. Can't drive for 12 months after the last seizure but have community volunteer drivers/wonderful carers and family (they all flew back again)as supporters.
I wish you and yours all the best for the future and stay on top - stay positive,look and plan the future. Don't let a negative thought cross your mind.
best regards
Cheryl

bdiehr
Posts: 2
Joined: Oct 2003

Hello heidi
in your situation you are never alone. in may of 2002 I was dignosed with an anaplastic ependymoma
a brain tumor usually found in children I was 41 when it was found I am 43 now and still live with the effects which is memory loss, loss of spouse which is the worst side affect I can't blame her, if it wasnt for family and boards like this one I would be alone. so even though my tumor was different the effect were both tragic and sudden. your husband is lucky enough to have a woman strong enough to stay by his side
for that I praise you if you feellike talking you can email me at bdiehr@sbcglobal.net

Docfat
Posts: 1
Joined: Oct 2003

Heidi,
I know how it feels to be alone. In 2001 I was diagnosed with Minastroma 2743. It is such a rare form of degenerative cancer that fewer then 500 cases have been reported. Being alone is difficult and I know from first hand experiance because cancer has become a dirty word in with my family, friends, and coworkers. Sometimes I wish I could just be afraid or intimidated but I have to be the support for my family during this time. It is difficult and if you need someone to cry with I am here.
David

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