Marmite experiment.

Well the side effects from last week are still apparent.

Mainly the hand thing. Weirdly, they turned bright red a few days ago. They looked and felt like they had been placed in boiling water. Very sore. The skin stopped coming off, but now it is back. So now they are red and exfoliating madly. They look absolutely awful. Awful. I looked up Taxotere/skin rash on Google and did indeed find a few images of what is on my hands. I am moisturising hourly, which makes them comfortable for a few minutes after the initial sting, but they start to exfoliate again soon after.

Mouth is better, but still no real sense of taste. Last night I ate a spoonful ofMarmite, right from the jar, just to see what my mouth thought it was. It didn't think it was anything. I couldn't really taste it. Marmite?!? That stuff is toxic!

Bones are ok and they were better by Monday, which I thought they would be. Tummy has been a little sore too. I imagine I am on the tail end of the worst it now.

All the above I can handle I suppose. I haven't felt 100% this week. I know Taxotere must be heavy duty if I have this level of side effects! But again, I am not complaining. I have still been able to work and, as it is Royal Ascot this week, there has been plenty to do, although I am glad most of my work associated with the biggest and grandest racing week in the world racing calender has already been done and I have had a reasonably easy time of it.

But the real news is my skin. Psoriasis has gone bananas and I am in a lot of pain, as well as looking terrible. Lucky I am not a posh bird and was not supposed to attend; imagine, all those beautifully turned out people in their beautiful clothes and hats and then me, with my boiled red hands and a bald head?!

I would think those of you who don't know anything about psoriasis think of it as a bit of dry skin, mainly on elbows and knees or perhaps the scalp.

I wish I was a mild sufferer. Right now I have about 40% coverage, but it is flaring, hot and incredibly sore. My clothes rub me raw. It hurts to sit down. It hurts to lay down. Sleep is difficult. I wake and find blood on my bed linen. My skin feels like it has had acid thrown over it. Every time I risk looking at my body, I see more psoriasis...

The physical side effects of psoriasis can be terrible, but believe me when I say the psycho-emotional ones are far worse.

Yes, there is a lot of self-loathing and low self-esteem at Plaingoldband Towers at the moment. Enough said on that, I think. Although I will say I am trying to put a brave face on it, as most psoriasis sufferers do. Few of us let people know how much we are really suffering. It is a very personal thing, psoriasis. I am trying to be chipper when I have to see people, although I am not seeing many on purpose. I don't feel like seeing people. But the truth is, I am not feeling very chipper. I am not my normal, happy-go-lucky, positive self. But if you met me right now, I would smile and crack a joke or two, tell you how it is 'ok' and how I am keeping it all going. That is what I do, even when I am dying on the inside. I am a bloody good actress...

Anyway, I think it is possible that even if the Taxotere is working, I will not be able to have anymore. I cannot imagine I will be fit enough with my skin like this and getting worse by the day, plus they were talking about early surgery anyway because they were 'concerned' my skin would prevent it. Bit late now. I think worst case scenario is going to happen and I might be too sick for surgery, if the psoriasis keeps going unabated. Next stage is erythroderma...

I also think radiotherapy would be impossible with such bad psoriasis. I understand it can make the skin sore. My skin is already sore. I cannot imagine how they can irradiate the area if it covered in flaring psoriasis?

I need to make sure I ask serious questions of Scouse and House next week. Have they ever performed surgery/given radiotherapy to someone with severe psoriasis?

James has asked about future psoriasis treatment and cancer below. Yes, I have thought about this, A lot. I do know there is a woman in the US who is taking a biological after having breast cancer (my derm did indeed do his homework). The only treatment I can use is biologics. I am non-responsive to everything else. There probably isn't much experience on any of this yet, as the biologics are such a new medicine. Hey! I have just realised I will be logged as a '41 year old Humira taker with breast cancer' in all the data on the drug from now on!

I have said this before in this blog actually: it is not about quantity of life, it is about quality of life.

I have no quality of life when I have severe psoriasis. I do not want to live life like this. I can't. If I have to choose to take a drug to keep my skin under control which might have consequences for a relapse of the cancer, I really have little choice.

Cancer can kill you, but psoriasis really makes you want to be dead.

Please, don't be concerned about me and suicide. I am not suicidal. I am just trying to be honest and if I can't be honest here, where can I? It is not easy to talk to people about this right now in real life; they would think it was the cancer making me feel so low, but it really isn't. I can deal with the cancer. I can't deal with the psoriasis.

Truth is, most of my thoughts are on the possible outcomes of both my scan tomorrow, my meeting next week with Scouse and House and an appointment I have with Silvano soon after...

Not many laughs to be had at Plaingoldband Towers right now. I apologise. I could do with a bloody good laugh and we all know, laughter really is the best medicine.