My name is Lenka. I'm Rob's wife.

After 4 years of fighting with cancer and using this block as a place where he could express how he felt.

ROB DIED 26/11/2007.

It was very tough ride last new weeks. He was so brave.I have created a website www.justgiving.com/robdian to rise some money for Meadow house Hospice where he spent last 5 days of his life. The staff in the hospice made his last few days as comfortable as possible and by rising money for them I would like to say big thank you. I also would like to say thank you to all of you how visited his website. This website was something to keep him busy, while he was fighting with cancer.

Lenka

I didn't write for a while because a had/have full hands with  trying to stay  on top of things. I'm completely without energy and its probably because my blood cell are very low. I'm not sure about that because they don't test my blood very often.

At the moment I'm too weak to even get up and stand for a minute. I'm completely tired and hopefully they'll fix me up after the weekend

I can't wait for tomorrow to get myself sorted because at the moment I have enough of everything. That is all for today.

Cheers till later,

Rob 

So I wen to the lymphoma clinic to show all my stocking and bicycle shorts that I have and to tell them how it all works. I think I'm getting on the top of my swelling problem. At least in one area and for the time being. I got few more things to try but otherwise I will not got to the clinic anymore unless there are some bad changes. Yesterday I started taking some new pill that my doc prescribed, one of the pills, for treatment of my bad tongue, is I thing a strong antibiotic that you take once a day with or after food. I think I took it couple of hours after and I had such a stomach problem whole afternoon and night and to be honest its still not sorted. I hope that if I take it with food it will be ok. I'm not even 100% sure if the reason was the pill. I'm not looking forward if I'll have similar problems. Anyway, enough bitching for today.

The weather is crap again and I'm miserable. As always when It's cloudy and rainy I need my oxygen mask on 24/7. It dries my month and makes sleeping even more difficult.

I can't believe how much influence the weather has on my body. When its nice and sunny I'm feeling 100% better then when it's rainy and cloudy. 

The doc explained to me why the breathing is easier in good weather. It has something to do with the fact that good weather = high atmospheric pressure = more oxygen in the air. That explains why I can't breath when the weather is rubbish. 

And its not just breathing because if I don't get proper sleep I feel weak and miserable and everything is bothering me. Everything is more sore as well.

My mouth is all funny at the moment too. It feels like when I was on chemo. I don;t know if its because of the pills I'm taking or something else. My tongue is raw and its painful to chew hard food, even things like bread. Apparently its called "Beef Tongue" and they prescribed some pills for me that should help it. So more pills into my ever increasing arsenal and I'll see if it works.

My visit with the lymphoma specialists wasn't too productive. They prescribed by some stuff to wear to le swelling. I'm still waiting for cycling shorts that I had to buy so I haven't tried the whole thing yet. But I know that wearing the bits on its own is very uncomfortable and all of them together will be horrible. I don't thing I'll be able to wear it 24/7.

The stockings, if I wear the at night give me horrible crumps in my foot and the only way to get rid of the crump is to take the stocking off. So if I go to bed with the stocking I wake up in the middle of night because of the crump, try to massage it for half an hour, then I give up and take the stocking off and in two minutes I get massage the crump away.

On Thursday I'm going back to see the with all the gear and check if its the right size and of course complain about how uncomfortable it is. I thing I rather be swollen then then wrapped up in stockings and suspenders etc.

Otherwise the is nothing new, I can't sleep well at night because I'm waking up all the time for some reason and then I'm very tired during the day. The weather is crap so I'm using oxygen quite a lot. I can't go to horizontal position and not have oxygen.  It makes my mouth very dry and that's one of the reasons why I'm waking up all the time.

Anyway, more of the same basically.

Till later,

Rob 

My swelling is bit more under control now that I take small dose of the diaretics but more often. The only thing that is still swollen is my little (or rather large at the moment) friend. Tomorrow I'm finally going to see the lymphoma specialist in the hospice so I'll see what they'll come up with.

Otherwise things are ok except for the fact that I can't sleep, I keep waking up and generally just don't enjoy night. I can get rest and even fall asleep durind the day but for long enough to catch up all the lost time.

Now when the weather is crap and the air is very heavy I have the oxygen on my non stop. As soon as the sky clears up I can take it off and breath fine. Just shows how much influence the weather has. When I wake into a dull horrible morning I'm tired and miserable whole day.

I received my TAXI CARD now but don't know if I ever use it because I'm not too keen to go anywhere. Maybe we'll go to a restaurant for Lenkas birthday which is end of this week. I just don't think I'll comfortable outside of my zone. And its will be probably a waste of money as well since I don't eat a lot. I can't even drink, how much fun will that be

Anyway, enough for today. Till next time.

 

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.