Hi all. I am typing this blog once again from hospital. Am I still in rehab you may ask -no, I am in a real hospital treated for chronic pain. Mid December 2008 I woke up sitting up and not being able to move. Any movement resulted in screaming. Off we went to the hospital and the next thing I remember was Christmas Eve. For 7 - 10 days I apparently spent a great deal of it speaking gibberish and the rest of the time if not screaming in pain I was asleep in an unconscious kind of way.
Apparently I had a great deal of visitors. I also have been told I spoke to some of the visitors in a lucid fashion. This has all left me in the situation where I have yet more pain and a daily procedure of trying to tweak the cocktail of drugs with the aim of having no pain and not being drowsy and off with the fairies. It is not always possible to have the cocktail of drugs that can achieve this.
It seems there was more damage done to my sacrum and that is what was creating the pain. We need drugs and the repair which requires time before we can have comfort.
I guess what has risen though is - what is the real issue, In my case what didn't happen was - I didn't die. The good thing about the disease now is that there are some fabulous drugs keeping cancer at bay. I have had nearly 10years of good health in parallel to having cancer and a variety of treatments. Having a passion for living for me is not that difficult, having a wonderful family and support network are crucial and something I have in truck loads.
Prior to this episode I lost my legs. I went to visit my sister for one night and now we live with her and her family. My son started the September school holidays being part of one school and unbeknowns to any of us he started back at a school on the other side of Sydney. What I am now fighting is paraplegia and intense pain.
What specialist do you need to see? We don't have one. We have pain management and oncology as separate specialists.
Perhaps a new disease has been invented and that is the side effects of cancer when you don't die. We just need a name for it now - but what is it called??
Thursday, January 15, 2009
Thursday, November 13, 2008
YOU WON'T BELIEVE MY HEALTH RESUME
Hi all, this is my first Blog experience ever and I thought I would outline to you my cancer resume and where I am up to at present.
I unfortunately entered the cancer world in February 1999 – in fact you know when you remember where you were on specific dates – well I do. I was in High Street Randwick in a Surgeon's office it was the 18th February 1999. I was 4 months pregnant and he told me I had breast cancer. It was like he was telling me the story about someone else – I didn't believe it. I didn't want to believe it. I had an operation while pregnant, he removed the tumour and lymph nodes and then I continued the pregnancy and attempted to push the cancer experience away and dived in to becoming a mum. My son Bill decided to arrive 2 months early, I rushed to the hospital, they tried to stop him coming and then I needed an emergency caesar – there's not enough drama in my life obviously.
I would of thought that was enough. Bill was small but healthy, I started; after he came home, 7 weeks of ray treatment. I took him with me to ray every day. He was so small I could have put him in my pocket. I would give him to the ray treatment operators and they would hold him while I was zapped.
To fill you in without writing every experience in detail here it is;
2001 October, they found cancer in lymph nodes in my neck, lungs, spine, lymph nodes in my lung area and a variety of other lymph nodes.I was treated with hefty chemotherapy that didn't really work and then was treated with tablets (chemotherapy) that did work. My oncologist said “you have won the lottery”. That lasted 3 years and the side effects were minimal.
December 2004 – collapsed at home and they found multiple tumors in my spine. Looks like the tablets stopped working. This was treated with ray treatment and was successful.
Between this time and September 2007 my life was measured in 6 week blocks of blood tests, cancer markers tests, scans and general monitoring of size of tumors. We were looking at tumors on scans trying to work out if they were bigger or smaller, if cancer markers went up we changed drugs and so it went on. September 2007 revealed more tumors on the spine. More ray treatment (ruined a skiing holiday in New Zealand), more ray treatment in December (ruined the Christmas break).
April 2008. The liver tumors that had become tiny specs now decided to blow up. I had an angiagram and they injected directly in to my liver ray treatment. Didn't seem to work then. More drugs to try, and my back was still painful. It had been painful for nearly 12 months. It was becoming more painful and tiring.
June 2nd 2008 I woke up with an excruciating headache, vomited and after a call to my oncologist we went to Prince of Wales (POW). I think our car knows the way itself. An MRI unveiled a brain tumor. A week later this was successfully removed.
My back was still painful and was starting to become as they say a number 10. Another trip to POW – I had a procedure on my back a facet joint injection. This was to relieve pain. Not entirely successful however a slight improvement. Hideous pain continued.
September 2008. I drove with my son to my sister's house. The next day walking was difficult. I drove home with trouble. I collapsed outside the house trying to walk up our flat driveway. Funnily enough I was carried to my front door by a man who had pulled up outside a neighbors house. He was from a company called bar-b-que rescue. I know I don't look like a bar-b-que however I did need rescuing. I was loosing my legs by 100% every day. I went from a walking stick one day, a few days later a walking frame and a few days later a wheelchair. What happened? A vertebrae in my spine was resting on my spinal chord and nerves. They couldn't operate as there had been too many tumors in my spine. The damage to the spine was too great.
So where am I now?? I now (with my husband and son) live with my sister and her family. Her family of 5 is now 8. Our family of 3 is now 8. I am now permanently in a wheelchair. I am always still in pain. Today I am in a rehabilitation hospital trying if possible to work out how to move from a wheelchair to a toilet or a car seat or a bed,trying to relieve pain with exercise and drugs and most importantly to me trying to see if there is any movement there. I'm sure there may be a future blog dealing with the machinations of extended family communal living. I'm sure I could also write about being the young chick in the hydrotherapy pool – but the least able – another blog perhaps.
In December I have to go back to POW and have another procedure in an attempt to tackle this pain issue. I cannot tell you how debilitating back pain is. Watch this space as well.
Did I say earlier I had a brain tumour? – oh yes I did have one however the impact pain has on your life seems to overtake what would normally be the only major event that happens in ones life.
After I get through rehab - I'm here until the end of next week I may need to write again who knows.
What was the biggest impact on my life in this whole resume – losing my legs. This far outweighs the cancer experience in terms of being difficult to accept - most challenging to live with.
My husband and I put our life in storage and what did we bring to my sisters house being the most important – a few clothes (we threw most of them out), photos and my sons lego box. That's it.
What's important to us. Our memorable experiences and our loved ones. What else do you need?
Cheers,
Annie
I unfortunately entered the cancer world in February 1999 – in fact you know when you remember where you were on specific dates – well I do. I was in High Street Randwick in a Surgeon's office it was the 18th February 1999. I was 4 months pregnant and he told me I had breast cancer. It was like he was telling me the story about someone else – I didn't believe it. I didn't want to believe it. I had an operation while pregnant, he removed the tumour and lymph nodes and then I continued the pregnancy and attempted to push the cancer experience away and dived in to becoming a mum. My son Bill decided to arrive 2 months early, I rushed to the hospital, they tried to stop him coming and then I needed an emergency caesar – there's not enough drama in my life obviously.
I would of thought that was enough. Bill was small but healthy, I started; after he came home, 7 weeks of ray treatment. I took him with me to ray every day. He was so small I could have put him in my pocket. I would give him to the ray treatment operators and they would hold him while I was zapped.
To fill you in without writing every experience in detail here it is;
2001 October, they found cancer in lymph nodes in my neck, lungs, spine, lymph nodes in my lung area and a variety of other lymph nodes.I was treated with hefty chemotherapy that didn't really work and then was treated with tablets (chemotherapy) that did work. My oncologist said “you have won the lottery”. That lasted 3 years and the side effects were minimal.
December 2004 – collapsed at home and they found multiple tumors in my spine. Looks like the tablets stopped working. This was treated with ray treatment and was successful.
Between this time and September 2007 my life was measured in 6 week blocks of blood tests, cancer markers tests, scans and general monitoring of size of tumors. We were looking at tumors on scans trying to work out if they were bigger or smaller, if cancer markers went up we changed drugs and so it went on. September 2007 revealed more tumors on the spine. More ray treatment (ruined a skiing holiday in New Zealand), more ray treatment in December (ruined the Christmas break).
April 2008. The liver tumors that had become tiny specs now decided to blow up. I had an angiagram and they injected directly in to my liver ray treatment. Didn't seem to work then. More drugs to try, and my back was still painful. It had been painful for nearly 12 months. It was becoming more painful and tiring.
June 2nd 2008 I woke up with an excruciating headache, vomited and after a call to my oncologist we went to Prince of Wales (POW). I think our car knows the way itself. An MRI unveiled a brain tumor. A week later this was successfully removed.
My back was still painful and was starting to become as they say a number 10. Another trip to POW – I had a procedure on my back a facet joint injection. This was to relieve pain. Not entirely successful however a slight improvement. Hideous pain continued.
September 2008. I drove with my son to my sister's house. The next day walking was difficult. I drove home with trouble. I collapsed outside the house trying to walk up our flat driveway. Funnily enough I was carried to my front door by a man who had pulled up outside a neighbors house. He was from a company called bar-b-que rescue. I know I don't look like a bar-b-que however I did need rescuing. I was loosing my legs by 100% every day. I went from a walking stick one day, a few days later a walking frame and a few days later a wheelchair. What happened? A vertebrae in my spine was resting on my spinal chord and nerves. They couldn't operate as there had been too many tumors in my spine. The damage to the spine was too great.
So where am I now?? I now (with my husband and son) live with my sister and her family. Her family of 5 is now 8. Our family of 3 is now 8. I am now permanently in a wheelchair. I am always still in pain. Today I am in a rehabilitation hospital trying if possible to work out how to move from a wheelchair to a toilet or a car seat or a bed,trying to relieve pain with exercise and drugs and most importantly to me trying to see if there is any movement there. I'm sure there may be a future blog dealing with the machinations of extended family communal living. I'm sure I could also write about being the young chick in the hydrotherapy pool – but the least able – another blog perhaps.
In December I have to go back to POW and have another procedure in an attempt to tackle this pain issue. I cannot tell you how debilitating back pain is. Watch this space as well.
Did I say earlier I had a brain tumour? – oh yes I did have one however the impact pain has on your life seems to overtake what would normally be the only major event that happens in ones life.
After I get through rehab - I'm here until the end of next week I may need to write again who knows.
What was the biggest impact on my life in this whole resume – losing my legs. This far outweighs the cancer experience in terms of being difficult to accept - most challenging to live with.
My husband and I put our life in storage and what did we bring to my sisters house being the most important – a few clothes (we threw most of them out), photos and my sons lego box. That's it.
What's important to us. Our memorable experiences and our loved ones. What else do you need?
Cheers,
Annie
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