Journal Entries
The fight for Herceptin
Posted Apr 3, 2007
Herceptin is a drug which aids women fighting breast cancer. It is not approved by NICE, however several patients have taken their local health authorities to court, saying that denying them Herceptin is against their human rights. Some patients have managed to get it with interesting moral repercussions.
A hospital in eastern England had to fund a patients Herceptin to the tune of £1.9 million a year. The only way it could afford this was to withhold treatment from 355 other cancer patients.
A case where the human right of one woman to live has been seen as more important than the human rights of 355 other people. I personally believe that all patients should have whatever treatment they need regardless of cost, but of course that is not practical and harsh decisions have to be made. But is this the result we want?
Discuss this Journal entry [3]
Latest reply: Apr 3, 2007
Utterly out of my depth
Posted Mar 19, 2007
I had my fourth relapse December just gone, it surprised me. After physio in the summer when I finally realised that I wasn't in danger of prolapsing a disc or damagng my back in any other way, I thought I was sorted. I did my exercises, we walked more, even a few 10 mile walks. I still needed to rest and was in lots of pain at times, but fantastc progress. I thought all that had happened was that I had got very weak due to lack of movement, due to fear, so all I needed was to build my back up again.
So when I relapsed and the pain was worse than before, what did it mean? The doctor came out and said muscular and referred me to physio. He said it was begining to look like a neurological problem and that physio could refer me to the chronic pain clinic.
Once I was over the worse pain I started my exercises again, knowing that I needed to bend over and stretch and work that back. I know I have no lower back problem, except stiffness and aches.
I read about some new research which said that children exposed to long term abuse, react with fear and this causes chemicals to be released which can lead to inflammation, if it goes on long enough. Hmmm thought I, inflammation explains the pain, the IBS, overactive bladder, VV etc etc.
So brought it up with the physio today and she agrees with my assessment, that I have been suffering from PTSD since 12 and that it has had long-term effects on my health. She asked me why the doctor had referred me to physio when it is obviously more complicated than merely lower back pain. I explained that would have involved listening to me and putting together all the symptoms and realising that they maybe connected. She agreed that its complicated and that I needed to be referred to the chronic pain clinic, psychiatry, occupational therapy and maybe a few others.
Turns out my doctor has to refer me to the chronic pain clinic, at which point I burst into tears. I have developed a phobia of doctors. I explained how when I was on anti-depressants the doctor tried to tell me that time goes forward not back, so there is no need to feel upset about past events. Right, so flashbacks are past events are they. Also how he compared depression to feeling sad, which is pathetic, there is more and more research coming out about how people with depression have unique symptoms in their brains, new brain cells do not grow in certain areas etc, and my doctor has the cheek and lack of knowledge to compare depression - an illness, with feeling sad.
Anyway, he is obviously incompetant and an inappropriate person for me to goto help for. The physiotherapist realised this and offered to telephone the doctor, to aid further referrels without me having to go and visit. A fantastic woman! Even if it doesn't work, being listened to was such a novelty.
Thing is, I have neurological damage, how do I treat that? What do I tell my parents, when they ask? Etc etc. I have no idea of how to approach neurological illness, guess I have some research todo.
Discuss this Journal entry [58]
Latest reply: Mar 19, 2007
The long wait for scan results.
Posted Mar 19, 2007
I nodded knowingly at a news story today about the aforementioned long wait. Clicking on the story though made me laugh http://news.bbc.co.uk/1/hi/health/6457781.stm says the wait for a MRI scan is 14 weeks. That was how long I had to wait, however what about the wait to see the consultant again to discuss the scan? Thats just over a year. They soften the blow by telling you that they have a quick look and bump you up if it shows something serious. They also tell you that you can ask your doctor to get the interpretation sent to them, to be able to discuss it much sooner.
So I mentioned to my doctor that I had been told this and he said that was fine, just to let him know after the scan. So I did, I wrote a letter and got one back refusing to help and that I would have to see the referring consultant to get the rsults. So that was nice.
I do remember though at the scan confirming that they were doing my hips, oh no they said they were just scanning my pelvis. So the area with the pain wasn't scanned anyway.
So at my appointment, at the end of May, do I ask for my hips to scanned as originally planned? Do I fancy another 14 week wait for a scan at a different hospital miles away which requires Moonglum to take a day off to help me to get to - and thats before I was using a walking stick? Then wait another year for my appointment to discuss it?
Not sure I can be bothered! I think thats their technique though, to make us give up. To think everyone is talking about the 14 week wait, when no-one mentions that some of us then have a 52 week wait on top of that as well.
Discuss this Journal entry [9]
Latest reply: Mar 19, 2007
Someone just tried to run us over
Posted Mar 9, 2007
We were on the Green near the river and a car had been going round and round the road. Once we were on the Green though, he left the road, mounted the kerb and came straight for us. Me with my walking stick ran for it, and boy am I paying for that right now. Moonglum went into fight mode and stood upto the car, which skidded at 30 miles per hour in wet grass and luckily missed him.
I was so angry, we stood in the pouring rain for a while, waiting for the police. In the end we went round the corner and found the car!
So we came home and rung the police again and are waiting for them to come round.
I don't get it though, we saw the car go round maybe 5/6 times, but only once we were on the Green did it also go on the Green. Was it deliberate? That thought freaks me.
Alternating between anger and tears right now.
I think it has shocked my depression away, hows everyone else?
Discuss this Journal entry [42]
Latest reply: Mar 9, 2007
Goodbye for now, or maybe for much longer
Posted Feb 19, 2007
My depression has hit really hard and I am not convinced I will survive this one.
In the past certain people have talked about me here saying that my depression etc is made up.
So I know I can seek no friendship or help or support here, until I recover. Finding comments about yourself like that when trying to fight the urge to hurt yourself is very difficult to deal with.
I know when trying to explain this in the past, people have had a go at me, for hiding. So those who hate me and those who alledgedly like me, all feel free to have a go.
Then there are the bitchy comments from people who say 'how can anything be that bad when you have a husband to keep you company?' Well all I can say is lucky you, for living in a world where a husband makes everything fine and dandy.
Funnily enough I cannot take any of that right now. So maybe if I get better, I will come back. I wish I had somewhere to talk about this, but such is life, I shall just internalise some more.
Discuss this Journal entry [5]
Latest reply: Feb 19, 2007
Kaz
Researcher U182246
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