I had a talk with one of the docs today so I can understand what is causing the swelling in my body and certain "private" areas.

I have some new tumours growing in my pelvis that are blocking the lymph nodes and stop water from being carried away and instead it fills all the loose bits it can find.

I'm very thirsty and feel dehydrated but can't drink too much until we'll find a solution how to get rid of all the liquid from my body. Since its a mechanical problem the solution is likely to be some kind of drain from certain areas plus the pills I take now to get rid of all the water. Then I'll have to watch my blood levels/minerals and make sure I get back whats needed i.e. potassium etc.

It looks like its gonna be a trial and error until we find something that works well enough. I've never expected this kind of problems on top of my breathing :-)

Anyway, its not very comfy to be in my skin at the moment and its only gonna get worse.

Hopefully I can stay reasonably comfortable for as long as possible and then its not gonna take too long... I don't like waiting and since I can't enjoy much of anything its just not cool at the moment.

I don't sit behind the PC too much these days so I don't know how often I'll update my website and blog but I will try do it as often as possible for as long as possible.

Bye for now...

Ffffffffff, don't even feel like writing. Every day there is something new and nasty that surprises me and makes my day shit. I'm swollen since I had my blood transfusion on Tuesday and its not just my feet that are swollen either

I'm tired and keep falling asleep but every time I do so I forget to take a breath and wake up breathless/choking. I had this after my last lung operation and I think it was because of the pills and it eventually improved. Just can't remember if I need to change pills or do something else to stop it.

I know have oxygen machine and couple of high stools in the bathroom and kitchen so I can sit while I'm there. Which is pretty helpful especially while I'm brushing my teeth.

I didn't have a good sleep last night and I'm knackered now. Everyday is getting more and more difficult. I wonder why

Anyway, enough moaning for today. Lenka is having few days off, then my sisters will be here and them my mum will come and hopefully give me a hand during the days when Lenka is a work. So that's should work ok. 

I went to hospital's day care unit yesterday to get two units of blood as I was anaemic and my HB was low. What a mission, by the time they got he blood ready, and in me, was pretty late and evening transport from hospital is not very good.

Eventually, I got home at about 9pm.I was hoping the extra red blood cells will pick me up and add some energy, as per usual, but not really. Feeling pretty much the same except that now my heart is working overtime. Is beating like there is no tomorrow and I'm not even moving. If I was in hospital I would be hooked up on monitoring in the cardio section... at home, all I can do is it will pass. My chest is pretty heavy and I got swollen ankles so I can just see my pure heart thinking WTF?

Anyway, I hope my local doc will have some idea on how to settle it down so I'm waiting for a phone call back. I feel like I should just go to bed and I think that's what I'm gonna do.

As expected, things are getting worse every day/week. I'm glad we went for holidays in August while I still felt pretty good.

At the moment I'm having a rough stomach from all the pills and my lung capacity is going down pretty quickly. We have seven stairs between kitchen/bathroom and the rest of the flat and these few stairs are making me completely breathless every time I use them. I'm starting to feel like I'm walking around with a plastic bag over my head and it pretty uncomfortable sometimes. My mission for today is to find out if I can change some of my pills to hopefully improve my stomach. 

Otherwise, if I sit or just do nothing I think I look like there is absolutely nothing wrong with me. So most of the time I do exactly that. Even a short walk to my local GP is now quite a challenge that I'm not looking forward to.

Tomorrow, I'm going to city to see my consultant so I'll see how I manage to get there. A good thing is that the train stop is only about 50m from my door and I get to about 200m from my docs office. Except for few staircase on the train/tube stations it should be fine.

So that's me. Nothing new really.