Saturday, 10 August 2013

Postponed - So Annoyed - Ascities getting worse.

I woke up Friday morning feeling crap.  My overloaded, heavy stomach, and chest breaking ribs were painful.  I had had sweats too.  I pulled myself round and off we set for Darlington and the Woodlands private hospital.
I was nervous, to say the least.  I was taken into the Ultra Sound room and put a gown on, I asked if hubby could come, she said no, not at the moment.  I told her I would need him to hold his hand.  She actually seemed a little unfriendly at first, so I went and got changed.
The ultra sound started once Dr Dean came in, he remembered doing my stomach test and asked how I was doing.  I told him about the ascites.  He told me he hadn't been told he was supposed to be removing any fluid and wasn't organised to do it.  I was gutted, although I felt terrible I knew it was the fluid that is making me feel this way.
He showed me a picture of the fluid, my liver has moved away from where it should be and a large black pool stood out, all fluid.  He said I didn't have any pockets and withdrawing it wouldn't be difficult.  Which brought questions about what had happened on the ward when they withdrew the stuff.
I am so upset that it didn't happen, apart from anything else it will only leave me 10 days to try and get my stomach a little toned up after being stretched for so long!  You may feel that is a bit of vanity there, which it is, but we are due to go back on holiday and having six inches of skin hanging over your trousers isn't pleasant.
So next week they try again although I will be admitted.  At first he said he would put the drain in then not come back till 6pm and remove it.  I said no way, the minute that drain stops working it comes out, I wasn't going through the pain I did the other week.  Strange when the fluid stops the drain hurts, I think it's something to do with suction, no fluid it starts pushing against any organ or tissue inside.  We agreed that if it stops it could be removed by the MO on duty.
On a different note he told me the name of another oncologist.  I told him I didn't want to upset my current one but he didn't want to give me any more chemo and that was my only hope.  Also it is better to be treated locally and, if say, one of the specialists down south was willing to let someone else administer it surely its better to be done here.  He told me it wasn't my responsibility whether the oncologist was upset or not, it was my life and I had to do everything in my power to preserve it.  No other persons feelings should come into it only my own.
I'm not totally sure whether the fluid is making me feel ill, but then during last night I had a terrible time.  I took both water tablets yesterday, watching TV between 8 and 10.30 I visited the toilet every 30 minutes, mind I did have 2 Bacardi and cokes.  Then we went to bed, every hour I was up, and passing quite a lot of water.  At 3.45 I started to sweat badly, my stomach felt extremely heavy.  I didn't get back to sleep properly because I couldn't get comfortable.  At 5.40 I was starting to panic, the pain in my ribs felt like they were being forced out ward, the ones just under your heart. The skin over my lump felt like it was wanting to split apart, the tightness was terrible.  I wondered whether I was dehydrated but I was also clammy.  I woke hubby up, should I call an ambulance, I couldn't cope another week with this growing inside.  I wasn't sure whether to get up and walk around, maybe the fluid would move around and not make my body feel like it was exploding.  He was tired and half awake, so trying to talk me down was quite hard work for him.  I think I had slept on my back quite a lot which had made the fluid more heavy on the internal organs. 
He talked me into taking a diazepam to help me calm down and maybe get me back to sleep.  He was frightened in case I started having a full on adrenalin rush again (understandable).  So I took a 5mg, it put me back to sleep.  Bear came and shoved his great big snout in my face at 6.30, I just couldn't fully open my eyes, he tried 3 times to wake me but I couldn't fully come round.  Poor Boy, he went and laid down, but I think he needed to pee.  It can't be nice for him, remember what its like when you wake up 30 minutes before the alarm wanting to pee and you lie there instead of getting up.  You waste that 30 minutes because you can't go back to sleep!
The next thing it was 10.15 and believe it or not, although still sweaty and still feeling extremely bloated I had got over the worst.  I came down to find hubby already drinking a coffee.  Although I doubt he slept much from 5.45. 
So here we are, another day, another 7 until this stomach is empty.  I am not sure whether I can last that long.  Maybe if the NHS send me an appointment for this week for a retry I will go there, but I can't see that happening!
Today is going to be a nothing day, I am exhausted.  Have to decide whether I take two tablets together or separately.  Or just stay on one!  I am down to 9.8 but that's because my food intake is that of a mouse. 
I always said when I started this blog I would write as honestly as I could, maybe it is hard for some of you who have started reading my blog because you are facing this cancer.  As the years go by it does get harder.  Our options are less and the meso spreads, if you are unlucky.  I am still hopeful that I will keep on battling but we have to be realistic sometimes, things just don't always go the way we want.
I am pleased to say Lou, my Australian fighter, has come through the chemo and you can catch up with her on her blog.  My fellow bloggers are all at different stages right now, Steve is skiing just after completing chemo (now that's a tough guy), Steve & Linda are enjoying the summer, Amanda and Ray are taking the ups and downs in their strides, Mavis and Tess both have good news and lets pray it continues.  Although I am sure everyone reads each of the blogs, but a recap is always nice.
To those out there fighting my heart is saddened for you, not only do we have to fight meso within our families but normal life continues and other illnesses can strike down members of the family.  Then it's how do you keep well to ensure you can be there to help when things don't go well.
I also wish that A&E's had a separate place for cancer patients to turn up.  We could do with a special 24 hour ward for anyone with cancer.  Things happen that scare us, we don't know what the cancer holds for us, how we are supposed to feel, what our bodies could go through.  We rely on ourselves and our partners to get us through.
On a different note what happened to summer, we read we were expecting 3 days of 22 to 24 degrees sunshine, we've had grey clouds all week and today is no exception.  Sunshine brings a smile to our faces, warmth to our bones and lifts our spirits. 


Anne H said...

Jan you are so brave. I hope that doesn't annoy you. You have no choice. You have to go through all this whether you feel bave or not. - but you keep fighting. I'm cross for you that you have to wait another week. I think doctors, oncologists and all medics should be forced to read your blog. Perhaps then they would understand how devastating a postponement can be. Waiting is the worst part of any illness. Waiting for appointments, waiting for treatment, waiting for results. As always I'm praying for you.

Jan said...

Thanks Anne, as ever you give me strength.