may I be Frank ?

Tonight and every night

Typical night: I wake up. It's around 3.

The pressure in my stomach is hurting. I do that every night. Often is stops me from getting to sleep in the first place. At the moment there is a fight going on between what is in my lower intestine, my stomach (at the top) and so-called free fluid in the gaps in between. And there just ain't enough room.

I've got 3 choices: Have an enema, be sick or have a drain of the free fluid.
Nice.

So, I try to make myself sick, but the new anti-sick drugs were having none of it. So I shift around dragging the drip off to the loo, come back, lie down again. Can't put my head down without being sick. I won't go on. You get the picture. This happens most nights.

a hickman line

As you know, tomorrow I have to have a "hickman line" put in to my chest.

Yuck yuck yuck. It is the only way I can get nutrition as I still can't eat with out puking green stuff.

Apparently I will be sedated.

Well they'd better give me something good!

a short interlude

I am out.
I just nipped out for a morning cos I was so bored.

I have been at the hospital since Jan 3rd.
I did make it Wales but was poorly while I was there.

I can't eat for being sick. Waiting for new drug to kick in.
They have attached a little box to me that gives my constant
anti-sickness drugs and pain killers.

On monday they are going to insert a "line" which goes into my
main vein and means they can feed me.
How gross is that?
blah blah...

Haven't worked out how to moblog yet.

Sorry for any inconvenience caused....

I can get email on my phone.

new year, new drugs

I forgot to say....

The reason I was back in hospital was my symptoms coming back. This means that the topotecan was not much good. So in the new year I'll be on another new one Caylex. More side effects, apparently the skin on your hands goes red and sore and your skin can get darker.

Save on sunbeds eh?

once again with the renegade master

Well hello...

Back from the hospital
again

2 bags of blood in
3 litres of fluid out
3 litres of water in
no more pain
can eat normally

So room for Christmas dinner now. Can't wait.
Not all of my internet shopping has arrived so I will have to print out the ones that haven't and give them as promises.

Went straight to the pub more or less from the hospital.
Thought I needed to catch up on xmas enjoyment.

off to see the wizard

Why is it when you actually see the doctor you start feeling better?
Started to be able to eat again.

Going in to hospital today for some blood and a "drip and suck" as the nurses delightfully call it.
I'm not sure about it now. I don't want the drain cos I know any kind of invasive proceedure is dangerous.

So do I take opiates for Xmas or get the drain?

Keep you posted.

hospital corners

Well...I rushed back to see if I'd got any more comments on my blog and there were none!

I've been away you see. To Hospital (she said self importantly).
The cliff-hanger on the Thanksgiving meal was would I managed to eat anything else and keep it down.

The answer was no.

Doc said, well as long as you're not vomiting then it's ok. Helpfully forgetting the fact that I was in pain in the tummy and had been for weeks. My stomach had grown by 4 inches over the past couple of months and was pretty uncomfortable. I'd been comparing notes with my pregnant sister in law.

Anyway by Sunday I could not eat or keep anything down.
I went to hospital.

It was a bit like a health spa really, on a saline drip for a day. Then water only and vitamin drinks. I swear I've detoxed because I have spots on my chin which I never get.

By Tuesday it was obvious that I still couldn't fit any food or drink in my tummy. So eventually the doc decided to "put in a drain". Look away now if you are squeamish.

The scan had confirmed that there was a build up of fluid in my stomach cavity, it's 'text-book", the doctor said, in this type of disease. The body is irritated by the cancer and produces fluid that builds up over time. Eventually there's no room left for normal things like bodily organs and it hurts like hell.

So, just like being at the dentist, the worst bit was the local anaesthetic injection. Then some rummaging about while they put a tube in my side. Ewwww. Within minutes the pressure was going down and I felt better. 3 litres later I was a new woman.

What a relief
Now I'm home
Glad to be back

Had another day on fluids and one on very very small meals.
Very good way to lose weight - 5kg in a week.
Whoever said I was vain!

it's what you get used to

My friend pointed out today that diabetics stick needles in themselves everyday.

She said :
"my bro injects 3 times a day every day with one of those pens... And when he was little and first started we all did it in the family with him for a while to get practice and get used to... Its not anything special after a while, and no, it doesn’t make me feel sick, same as sticking bits of hard plastic into my eyes every day – which I do."

So I suppose you can get used to anything.

the new regime

Here's me looking scared on my way to start my new treatment. I didn't sleep much last night.Once a day for 5 days an infusion of Topotecan, second line cancer treatment.

I feel fine right now, just very tired. I guess it's not so bad having a little bit at a time it will build up over the week. CA125 blood test looking good at 36. Normal range is 35 but I need to get down to zero if possible.

Keep you posted.

back in black

Thought I 'd try visiting the consultant in black today, when I went dressed in both pink and red it didn't go so well so black it is. Here's me getting ready to go.

So may be this should be a black letter day instead of a red letter day.

Anyway, it was to discuss my new treatment program and the winner is...topotecan.

This means I get to go in once a day for five days then I get three weeks off so my bone marrow can recover. A couple of times previously I'd got really anaemic and had no immune system to speak of. Which is not really good as you can imagine. That's all down to me poor old bones not making enough new blood.

I'd kind of hoped that it would be every three weeks so I could get three treatments in before xmas and so know if this one was working or not before the hols. If I am really strong they might be able to do it every three weeks.

New Mr Consultant is very nice and listens to my questions even if he is still not very good at anything to do with nutrition or complementary therapies. At least he tries.

Anyway what this means is NO HAIR AT ALL. Yes I know I've mentioned this a few times but you can imagine it's no fun for a lady. Think I might go to Selfridges and buy another wig cos Gloria (blonde wig) is a bit much for day wear.

This is me obsessing about my hair.

Well wouldn't you?