As ever, I’m living with a few incredibly difficult chronic conditions that can only be managed and not cured. Cancer and Narcolepsy, as such there have been some more developments …
I’m keen to avoid complaining about all of this, it is difficult as we’re all human. Indeed I’ve seen people have just one restless night sleep and handle it much worse than I handle Narcolepsy. I check my skin regularly for cancers, whereas most people wouldn’t know what to do. I dunno you just get used to it really, it all becomes facts that you cannot argue with and these things will never go away. That’s just the way it is.
Cancer Genetic Screening and My Kids
So I had a third confirmed primary Melanoma Skin Cancer removed in July last year. Luckily it being stage zero, it’s never gonna be a threat to my life. However because I had the third primary tumor, it’s thought that I do indeed carry a genetic mutation that I could pass on to my children.
Confirmation of genetic screening appointment in Leeds for Cancer is in progress
Because I’m teaming up with a fellow red head, we may one day want to have children and at this point me and my consultants agree that we should assume a certainty of our children being more at risk of developing Melanoma skin cancer than the average. That’s really the main driver behind going to Leeds for this test, to make sure that I know the risk and get any issues noted and addressed over the coming decades.
So to be in a position where I’m alive after 30 and have the potential to start a family, I feel pretty blessed and thankful.
I honestly thought my game was up in 2004, having the most aggressive form of the deadliest form of skin cancer at a stage when chemotherapy wouldn’t have increased my chances of surviving. So to be in a position where I’m alive after 30 and have the potential to start a family, I feel pretty blessed and thankful.
Narcolepsy Is Far Worse Than Cancer and NICE aren’t Nice
So with the Narcolepsy, we’re trying one more stimulant approach before applying to be allowed to have funding for the drug that will control it called Sodium Oxybate. I was moved onto Amphetamine (Speed) by my consultant who also added Proazc to that to reduce my REM Sleep in the day.
Even though Xyrem will address the issue once and for all, I can’t yet get access to it. For a number of reasons, one being its expense. About £13,000 a year on the NHS and you have to go through all kinds of appeals with your PCT. Why? Because of the NICE “death panel” as the Americans call it. Xyrem, which is the brand name of the drug isn’t approved by NICE. The other reason is this Spinal Tap result is still in doubt.
I was moved onto Amphetamine (Speed) by my consultant who also added Proazc to that to reduce my REM Sleep in the day.
Strung Out Waiting For A Miracle
I dunno what to make of it at this point. Amphetamine is most likely causing blood pressure spikes when I do anything straining, but the Prozac does seem to be reducing my Cataplexy attacks in public. I’m still falling asleep in Tesco etc, but with some ear plugs I think I can get by with blocking out all those audio triggers that can lead to me collapsing.
Amphetamine is most likely causing blood pressure spikes when I do anything straining, but the Prozac does seem to be reducing my Cataplexy attacks in public. I’m still falling asleep in Tesco etc
I have noticed though that the Amphetamine in particular is increasing my ability to think. Like in the film Limitless, I seem to be able to call upon some untapped creativity, which in all honesty is a great bonus. I do know though that this drug is screened for in job interviews in the States and that makes me very nervous. I need to see if I can get by without the stims, because I really feel the best way forward is Xyrem, putting me to sleep at night and letting me have just ONE good nights sleep will be amazing. That’s all I want, I want to sleep at night and stay awake in the day, is it so much to ask for?
Loosing More Than My Religion Here …
Things are tense with Welfare, because I don’t yet qualify for full housing support for accommodation with one bedroom, meaning that pretty soon I will only get help to live in a bedsit at best. I’ve been in touch with a CPN, who might be able to help me with the emotional impact this is having on me, needing support and not getting it. So at best at least I’ll be able to talk about how this is all making me feel, rather than bottling it up and I think that’ll be a healthy way of controlling the Cataplexy too.