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Archive for May, 2010

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There is a line in this song about being a friend I would like to have. This song was sent to me by just such a friend.
Thank you my friend.Respect always.

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The first couple of days once more in hospital spent in a haze of tests and pain killers. I was under the watchful gaze of Dr.Bartholome. I felt safe and knew what ever was wrong, he would soon find out.

They say it never rains when it pours. When you think things can never get any worse, there is always something to prove you wrong.

I had always since my mothers stroke, kept in close contact with the family doctor. My father ,I knew, had had a few health problems and some tests had been carried out. The news I received when picking up my messages took my breath away. My father had bowel cancer, he needed surgery right away. Now what do I do? was my first thought. I had spent my time speaking with my family telling them I was on the beach,in the pool, having a drink with friends, apologizing I could not get away as we were both very busy working. The reality very different . Had my parents seen me at that moment in time, the shock would have killed them both.

My sister caring for my mother 24/7 needed my help, dad would have to stay with her while he recovered from his operation. I could not decide what to do,tell her the truth, or be an uncaring daughter and selfish sister. For the moment I chose the latter.

I could not put her through anymore and hoped for the best.

The pain was much worse and drinking water was like pouring acid in my stomach. I was also swamped with guilt my family needed me and I had let them down.

The fourth day walking to the bathroom was almost impossible. I called the nurse and asked for more pain killers.

Later that morning Dr.B. looked at me and then at Stephan and said with a very serious face( I guess the nurse had told him my thoughts. I believed the cancer had returned) pointing to the liquids entering my vein to ease the pain ‘All of this means nothing if you do not think positive and I am being serious, no joking,understand?’

We both looked at him and nodded, he walked away.

Dr.B.s words, of all the times we have spoken… words I remember the most.

That night around 10 pm I called for the nurse, I was doubled up in pain and screaming,they could not understand why water would burn me and said it made no sense. They were so kind and sat with me as the waves of pain engulfed me, even the pain killers had lost their power.

The following day I had another scan and later, around 5 pm two your doctors dressed in green came to my room( green gowns are worn only by surgeons , the rest of the medical staff wear white) They had found the problem. I had a cyst and they were going to remove it ‘NOW’.

I rang Stephan who had left about half an hour earlier and told him the good news. He wanted to return to the hospital but I told him to go home and get some rest, besides we have animals and there were are lot of little hungry mouths to feed.

Around 7 pm I was wheeled into a small room where there was a scanner . I had another scan and a local anaesthetic was injected into my stomach. The surgeon made a small incision and with a syringe he proceeded to draw liquid, he asked for another syringe and then another. I watched his face, he looked very serious . I asked what the liquid was, it seemed a great amount for a cyst. ‘Faeces’ he said….faeces was seeping out from my stomach and through my skin.

The surgeon slipped a long tube into my stomach , at the end of the tube was a bag which hooked onto the side of my bed.

The relief, I cannot describe, the pain had gone . For the first time in many days I had a good nights sleep.

The following morning Dr.B. came to see me. There was relief, the problem had been found, but uncertainty how to solve it. I would not be allowed to eat or drink . I needed a feeding tube and would be moved to Oncology.

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You may not understand the words.

But you are a beautiful woman, dont let cancer ruin your life. Get checked and if you are not happy with your doctors answer INSIST on another check. It is your life.

http://www.youtube.com/watch?v=oHRad5HxM74

I managed to find a translation for some of this beautiful song.

TOMORROW
I woke up today next to you
and my day was in a strange way smiley and easy
I wished tomorrow to be here again!
My world is changing, every monet is a break up,
every breath is a life,
every fear is a road backward,
stimulus to be here tomorrow again.
I woke´╗┐ up today next to you
and I remembered for how long I was waiting for this moment,
but will it have another to be here tomorrow again

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Cancer the Poem

My husband and I are grieving for a friend who now has terminal cancer. Please let there one day soon be a cure for this dreadful disease . Let Cancer be only a distant memory.Let us one day no longer live in fear of its return.

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This is Kirstis story, she was not to be one of the ‘Lucky ones’

Invasive Lobular Carcinoma..Metastic breast cancer.

This was also my diagnosis, but NOT in the breast. This is why my case has baffled doctors and is now in the Medical Journal.

Kirsti,I think of you often.

http://www.kirstio.com/carcinoma.htm

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FEMARA the new ‘Wonder drug’ the answer to all our prayers . But is it?. Tamoxifen, not the first choice for me by my Oncologist. Femara was ‘perfect’ for me because my cancer had spread to other parts of my body.

An Oncologist is just that and nothing more. I was not told about side effects from this wonder drug only that I must take it the same time everyday. If you want tea and sympathy, you are knocking on the wrong door. Your GP? knows very little about these anti cancer drugs, if anything at all. We all need a good Internest, a doctor in the hospital who works with your Oncologist. When you are in pain you go to him. I went severeal times to my Onc. and told of the terrible side effects I was having with Femara. I may just as well have been talking with myself. It seemed according to him no other patient had complained. I found this very hard to believe.

I joined every blog I could find with people who were taking Femara and what did I find ,they were ALL suffering.

I made an appointment with Dr.Bartholo…who asked what on earth was wrong with me as I could hardly walk into his office. My hands and knees were swollen. I could not even take the cap from the toothpaste,the soles of my feet were on fire. I could not write or brush my little sprouts of hair that had just started to grow.

I told him I was taking Femara. I know at this point I knew much more about this drug than he did and told him of Femaras side effects. He told me to stop taking it and he would speak with my Onc and get back to me.

Dr.Bartholo…always keeps a promise and sure enough he asked me to make an appointment to go and see him. In his office he asked me if I would be willing to try something. I trust this man 100% and said yes. Dr.B. gave me a treatment of steroids for a short period , 21 days. He told me in a few days I would be feeling much better and I would ask him if I could continue the drug…but he would have to tell me no.

As if by magic the swelling and pains all disappeared. I felt like I was walking on air. The next time I saw him I gave him the biggest hug I was able…He laughed and said ‘For me quality of life must come first, what good is living five years in pain, rather one GOOD year pain free that you may enjoy’.

I am taking Tamoxifen ,although Oncology is far from happy but has said rather Tamoxifen than nothing. The chioce is mine. On this we are agreed, it is my life and I refuse to live it in pain.

Here are a few examples from people who are taking Femara:

My only advice I can give to an Oncologist is LISTEN to what your patient is telling you and do NOT brush them off.

3 stage 2 breast cancer . cognitive impairment, fatigue, joint pain although I manage to run 4 miles a day-new symptom is terrible gerd similar to what I experienced with chemo. esopagus to stomach burning sensation which worsens after eating. getting off femara for a month but from what I read might not be long enough to get symptom relief. I’m afraid of long term effects but also afraid to decide to stop femara as I am fearful of recurrence. anyone else with gerd or stomach problems? F 59 4 years
2.5 1X D 5/6/2010
3 Breast Cancer I had DCIS Breast Cancer, very large lumpectomy and alot of radiation. 2 years ago. I was on Tamoxafen for two years. Tolerated ok. Now they have changed me to Femera, after 4 months it is close to unbearable, the aches and pains are terrible. F 45 5 months
2.5 1X D 5/2/2010

2 Breast cancer Extreme body pain – head to toe, very stiff, arthritic feeling, headache, insomnia, hair thinning/loss, no appetite, depression, lethargic, fatigue, constipation, hot/cold flashes, high cholesterol. With all the horrific side effects of Femara, it is difficult, if not impossible, to appreciate any benefits of this drug. It has horribly impacted my quality of life. F 49 32 days
2.5 mg 1X D 5/1/2010

2 stage 4 breast cancer I just recently started having joint pain – bad in my knees and feet. I have had insomnia since I started on the drug. Am EXTREMELY tired all the time. I thought that was just from coming off the chemo – now that I see all these comments it makes me think it is this drug. I too feel very old. I was told I have to stay on this the rest of my life as this was my 2nd recurrence of breast cancer – it came back on my lung after 17 years cancer free. This drug was supposed to be the new miracle drug – It is VERY expensive even with insurace and it seems to be causing an awful lot of problems. I sure hope it is worth it. F 53 1 years
2.5 mg 1X D 5/1/2010

2 Stage II Breast Cancer I have been taking femara since August 2007 and I feel as if I am slowly losing my mind. Problems with memory, especially with words or phrases during routine conversations. I’m extremely tired all the time, my joints ache, even the joints that are not afflicted with arthritis. Sex has become almost non-existent due to vaginal drynessl I can only sleep if I take Lunesta, Demerol, & Neurontin. I also take Effexor in the AM, Levothyroxine, and Triamerene. I’m beginning to lose track of time, dates & important events. Can anybody please help me? F 54 2.5 years
2.5mg 1X D 4/27/2010

2 ductal and lobe- triple positive severe joint pain, hands, shoulders, knees, hips and feet. Hot flashes, memory foggy, headaches, dizziness. Doctor finally has taken me off of the drug. I am off of it for one week and will not take the new one till I know this one is out of my system. Does anyone know how long it takes to get out of you body? F 56 5 months
25mg 1X D 4/27/2010

5 idc, left breast headache, neuropathy in feet. neck & wrist, thumb joints hurt. Muscles ache. Ribs hurt if I twist. sweat a lot upon exertion. losing words while speaking. some swelling of extremities. horrible insomnia.

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