The Whole Experience

I'm not a person to do things by halves. If I'm going to do something it has to be completely or not at all (unless I'm feeling particularly flaky and can't be bothered). Anyway, in order to have the complete cancer experience, or should that be Cancer Experience, and in order to have something to blog about I have contracted an infection in my Hickman Line and have been admitted to the Chartwell Unit Inpatients Ward.
I had some pain in the line last week but I thought I'd pulled it which sometimes happens as the line hangs out of me about a foot long and tends to get in the way of things like clothes and my other boob.
I didn't feel great for a couple of days, a bit tired really but I just put that down to the chemo. To be honest, everything that happens now I put down to the chemo. Every little burp or fart - 'er, yeah that's the chemo, it's not me!'. By Saturday evening I felt really bad, I was headachy and grouchy and I suddenly got really really cold. You know when it gets into your bones and you just CANNOT get warm. So I got into bed with a million (slight exaggeration) blankets and a hot water bottle. I took my temperature and it was 38.4C. That is high. Anything over 37.5C and I have to call the Chartwell for advice as it indicates an infection (mothers will know this, it is one of the first signs in children that something is wrong).
Just before midnight Ash phoned them and they said the worst thing 'come in'. So Ash's sister Emma and her partner Steve (and baby bump AKA Jelly Bean) came and picked us up and took us into the hospital. They took blood and did all the normal observations and I saw a doctor. They gave me some antibiotics (Clarithromycin and Amoxicillin) orally and then they moved me to the Emergency Assessment Unit (EAU) at about 4am.
I had napped throughout these proceedings because yes, it was late and we were about to go to bed when we'd called the hospital but also I had taken some Nortriptyline for my back (to relax the muscles and prevent back ache) and it works as a sleeping tablet too so I could hardly keep my eyes open.

I got settled in to EAU, Ash went and kipped in the porter's lodge as there was no way he could get home at that time of night. The next day I spent on EAU just hanging around and playing Sudoku on my Nintendo DS. The doctors came round to see me and took some more blood.
At 5:20am Monday morning (Bank Holiday) I was woken from a lovely sleep (aided by a sleeping pill) by my nurse (who was really sweet) and told that I was moving down to the Chartwell Unit (result! it is much nicer down there and they had just moved in an old man to the bed next to me who was confused and did really smelly poos).

The Chartwell Unit bedrooms are all single so that patients can be isolated in case they are particularly prone to infection. Also, some people stay in the Chartwell for quite a while and are very seriously ill. Also, it is probably the unit with the biggest budget in the hospital because cancer is so high profile. I have a room that is about as big as a small hotel room (and a great deal cleaner!). There is an ensuite bathroom with a loo and shower. I also have (aside from the Patientline TV that all the beds have) a TV with a DVD player which one of the nurses found for me (thanks, Michelle!). I DID have an easy chair that reclined but apparently there was some little old lady that needed it more than me. HMPH! Now I have a regular chair which I hate as it is awful for my back. Luckily I haven't been sitting in it too much.

*UPDATE*
It is Monday 31 March just before noon and I am home! It has been a funny week of being in hospital because as of last Tuesday I have been feeling OK. The old Vancomycin (V V V V strong antibiotic) kicked in nice and quickly and so I was let out on Day Release. I mostly came home and did housework and stuff. It was weird having to go back to the hospital to sleep though. The general pattern of my day was:
0600 Get woken up to have blood pressure taken
0700 Get woken up and asked if I would like a cup of tea (the answer was always a very sleepy "no, thank you"
0800 Get woken up and given breakfast (unless I was going out for breakfast or I was waiting for Ashley to bring me Maccy D's Sausage & Egg McMuffin!)
0805 Morning medication (just Omeprazole)
0810 Get hooked up to machine to give me antibiotics. It was a small bag of saline (250ml) with 20ml Vancomycin added and it had to run through a pump to make sure that it didn't go through too quickly.
0950 Antibiotics finished! Bleep nurse to unhook me from machine so that I can pee!
1000 Shower and dress
1030 Leave for the day (unless there was a ward round and I had to wait for the doctors to see me, that means not leaving til about lunchtime)
1600 Start looking forward to seeing Ashley
1720 Ash home (cuddles)
1800 Dinner
1900 Leave to get back to the hospital
2000 Antibiotics
2140 Antibiotics finish
2200 Evening medication (Nortryptaline)
2300 Sleep

I managed to get in a couple of lunches and a christening this week which isn't too bad for someone that is supposed to be ill and in hospital!
My immediate family visited (apart from those who couldn't) and my mum and dad sent me some beautiful tulips in a jug that I can re-use (hurrah!).

So, I'm home and am probably not going to do anything more interesting than tidy up and do some washing. I have to go back to the hospital tomorrow to have some more blood taken from the line and checked to see if the infection is still there. The results will take a few days so I'll see the Oncologists on Wednesday with the view that if the results come through in time and are OK then I will have my next dose of chemo on Friday and if not, it will be postponed until next week.

Fingers crossed everyone that the infection has gone otherwise the line will have to be taken out and a new one put in :(

Love
Liz
xxx

Hair

As many of you know through my Facebook page and various messages and conversations, I am now BALD!
After the second sessions of chemo I felt OK, a bit tired but MUCH better than the first time! I have chemo on Fridays so that I can be ill over the weekend when Ash is there to look after me and then if I feel OK I can work the following week. Anyway, on the Saturday some hair started coming out when I ran my fingers through my hair but not too much. About the amount that comes out when you naturally molt. This is something girls are more likely to know about but when you are ill or run down sometimes your hair molts a little bit. Saturday and Sunday weren't too bad, I was well enough to spend Saturday at the allotment digging. We took one of my new chairs down there in case I was a bit tired but Ash's mate Chris came down and he had a hangover so he ended up in the chair most of the morning! Good job I didn't need it really!
Monday and Tuesday more hair started coming out, when I washed it loads came out and then I had to brush it which didn't help.


By Wednesday I had to wear a headscarf out of the house as a big lump of hair had come out just at the front and it was really noticeable. I didn't want any comments about combovers!

NB It is now ages since I started this blog and things have been happening so I'm going to try and be quick so I can get everyone up to date!

When I went in for my next appointment that Friday pretty much all my hair had come out and I had a straggly little ponytail at the back. Luckily for me I got my wig that day. It is lovely and long with blonde on top and brown shades underneath. It is quite thick so it is not like my real hair but everyone thinks it is so that's OK!
I was annoyed with the little ponytail so I just cut it off with a pair of scissors and then carried on and trimmed up the rest of my hair. It ended up looking like this...



Ashley said I looked like an 'escaped mental patient' but I quite liked it. It is a very liberating feeling cutting all your hair off!
That evening after looking at me for a few hours Ash couldn't stand it anymore so he got the clippers out (we don't have any guards for them) and clippered my head all over - a 0.5! I'm officially a skinhead! I'm not going to go quite so far as to shave it with a razor as then I would be all shiny. No thank you.
I didn't like it at first, I felt REALLY bald and you can feel the slightest breeze on your head when you have no hair - it is very sensitive!
Here's what it looks like:

I've got used to having no hair and have realised that really the pros outweigh the cons. Here they are:

CONs
My head gets cold
People stare
I like having hair!
Wigs are a bit hot and itchy

PROs
I've always wanted to shave my head (don't ask me why!)
Hopefully my hair will grow back thick and curly (like I've always wanted!)
It takes me two minutes to have a shower and dry myself as I don't have to wash/dry and style my hair
I am saving LOADS of money on shampoo. (I went into Sainsbury's the other day and my regular shampoo was on offer, I was about to put some the trolley before I realised I didn't need any and probably wouldn't need any for a while. And I already had some at home!)
When I wear a wig I don't have to style my hair and it keeps my head warm

So, there you have it. Being bald was something I was not looking forward to and I was quite upset at the prospect of losing my hair but not it's happened I don't mind it at all. Everyone keeps saying that I look good bald which is always encouraging!

Thank you for all your support and encouragement as always

Liz
xxx