Feeling very isolated

Hello Boone 1953! - my God this site is hard to navigate! MacMillan is great, but its web designers need a good talking to! (Guess I know your age!)

I haven't looked at this site for ages - for reasons above. I'm sorry I wasn't here for you when you needed me, but I am now. I thought this site was supposed to send us messages to our email addresses?

You've your bone marrow transplant by now? I am sure you were scared. I'm sorry I wasn't on here earlier to talk to you. How are you? Who was your donor?

I know what you mean about not burdening people. I didn't because I didn't want to be a drama queen. Also, there was nothing to be done, so what was the point? My youngest sister died from cancer in 2004 and I didn't want my mum and sister to go through it again. I didn't even tell Andy, my boyfriend, until last May.

My bone marrow test was the most painful thing ever - though at least it didn't last long! (I once trod on a scorpion. Almost as painful but lasted almost 24 hours!)

How are you? Dr Blood (not his real name) told me a transplant wasn't an option - and that I probably wouldn't survive the operation. Which seems weird as I feel relatively healthy. (Almost died in Sept, but that was just internal bleeding from all the aspirin they'd had me on since 2005 or so. Luckily my boyfriend turned up and called an ambulance!)

Whereabouts are you? I know we are not supposed to share details on the site, but unless there is a way to message each other privately, I am quite happy to give my email on this site. There are so few of us with CMML I wouldn't mind being innundated. That way we could swap phone numbers and talk properly.

BTW, Cancer Research published some info about CMML last summer. Only just found it. On a positive note, seems I am living on overtime! I've apparently had it since at least 2004!

And don't you get pissed off when people talk about fighting cancer? We don't fight it - we ignore it! We get on with life in spite of it. Then we live with it. One day, we will have to endure it and get on as best we can.

I hope you are well and still checking this site. My email address is kate@obuffrey.fsnet.co.uk.

What no-one ever tells you about cancer is the abject poverty it can cause.

I don't wake up in the morning thinking I am terminally ill. I barely think about it because it doesn't seem real.

I wake up worrying how I can find money for food, electricity and perhaps enough petrol to visit my mum in a home five miles away.

As someone who used to have a pretty well-paid and enjoyable career, I also get pissed off that no-one will ever employ me again because I have leukaemia. My brain still works! Technically cancer is a disability, but employers can fill those quotas much more easily with wheelchair users or the deaf. People who won't cost them in sick leave!

I have an early retirement pension of less than £5k. "The state" believes that is sufficient to live on. I have to pay my mortgage (luckily small) and all the other bills from that.

I had to have one of those key meters installed for my electricity. By 9am tomorrow I will have no power. I've run out of things to sell, and I don't know how or when I will raise the money to get it back on.

The only time I think about being terminally ill is when I think of spending what's left of my life living like this. I would so love to be able to enjoy what time I have. Seeing more of the world - including the UK, visiting friends around the country, days out. But it all costs money I don't have.

I even had to cancel my last appointment with the haematologist because I had no money for petrol or bus fares.