It's only Wednesday

It's only Wednesday, and I have concluded that this week will not be moving any faster.

A few Fails for the hospital on Monday............
I arrived at my appointment time (9:30am), queued for an hour to have my bloods taken. Saw the doctor (another new one) who examined me, and as my bloods weren't back, I had to wait on the seats in the corridor to find out if my bloods had risen enough for me to have chemo.

I seemed to wait ages, and every time the Dr's room door opened I looked up, and a nurse commented about this, so she went to find out if the results were back yet. Eventually she said they were back, and I could go ahead with chemo, but had to wait for the doctor to sort a few things out.

I waited, and eventually the doc came out and said bloods are fine...."Oh, and by the way, you could have had chemo last week. The machine we use wasn't calibrated properly, so your bloods were actually fine"
As you can imagine, my Mums face and mine dropped. WHAT?!
So I've wasted a week for nothing, because someone hasn't done their job properly!
We were then told she needed to re-prescribe my chemo for thr full dose (not the 75% I had last time), and this would take her some time, as she was going to see another patient! "Go for some lunch" she told us.
We did....I think I needed to walk away at that time anyway as I was fuming from being told the 'news' about the previous weeks blood.

After a quick lunch we came back, collected my notes, and went down to the 'Admissions Unit'.
I handed my notes in, and was asked the following questions.......
Q: "Have you had bloods taken today?"
A: "Yes"
Q: "Do you have a line?"
A: "Yes, I have a hickman line"

I We were then told to sit down and wait.
I knew I would be waiting a while, as the room was pretty busy and there weren't many seats left.
We waited.....and waited....and after about 1 hour and 15 mins, Mum got sick of waiting and went to the desk to ask when I would be going up to the ward.
The lady said she would check, and came back and said about waiting for a Cannula to be put in my hand..
ERRR.....I HAVE A LINE! I kinda shouted! "I told you that when you asked me when I walked in".
Her reply.... "Oh, we put your notes in the wrong pile by accident. You could have gone up to the ward an hour ago".

Mum kind of lost it a bit, we were given a feeble excuse of "Ohh, we are busy today".
GRRR

Anyway, off up to the ward! (Ward 12 again - which is what I wanted).
Mum left about 4:30, as she needed to get home, and there is no point sitting around waiting for nothing!

I eventually got connected up to my chemo at 7pm!!!!!!
I then set my laptop up... low and behold you can guess the 'FAIL' to this part......of course, it was down. It's now nearly Wednesday afternoon and it's still down.
Luckily I brought my dongle with me, so am trying to keep occupied, but having to pay for the privilige!

I was lucky enough to have 3 visitors yesterday....My sister, Mum and best friend.
Not sure there will be any today, but I can't wait for tomorrow, as my fav person will be coming :D

Well I suppose thats all for now....there never is much news when you're stuck in a ward in hospital!

Update....

So, just an update, although I probably can't remember much of the past few weeks....I never did have a good memory!

I was discharged on 16th October - sent home with steroid eyedrops, anti sickness tablets and some tablets for uric acid [I think].
Sunday we went to a local pub for a proper Sunday dinner, with a massive Yorkshire pudding and all the trimmings - Yum!

Fallout - New Vegas [ps3 game] came out, we had a fun day in Blackpool on the slot machines, played a few more PS3 games, slept in [well, chemo makes you tired!] and eaten out a lot!

My hair started to fall out about a week ago - slowly at first, but with a vengance now. I've still got some...although it's very thin, and I'm not sure how long it will last!

I went back to Christies on 22nd October for a check-up. My platelets were very low - down to 45. They had dropped from over 300. I also had a slight urinary infection [ouch].

Chemo was planned for 1st November, so I packed my bags and off I went. Had the standard blood test, saw the doctor, and waiting for the blood results. Only to be told my white count was too low for chemo.
My platelets had risen back up to over 300, but my neutrophils were down to 0.7, and they need to be 1 or above to have chemo.
So, back home it was and I have to return on Monday 8th to see if my bloods have risen - so fingers crossed they have.

Also, Friday 5th November will be a day I will not forget :)

Chemo and stuff

I thought I had better update now, or I'll be crap as usual and not update for a while.

Theres been some bloody fantastic things, and then the chemo (which for chemo is ok...but still not as fantastic as other things).

I had my Hickman line put in on Friday 8th.
Now of course I knew what to expect as it's my second line in as many year. It was a little more painful than the first time though, as this time it's a double lumen (which means it has 2 ends on it, so I can receive more drugs at the same time). But overall the experience was as expected, with little soreness afterwards.

The weekend to follow was one of the best in my life. Good times :)

Monday 11th saw an earlyish morning to come down to Christies to start Chemo.
I arrived nice and early, as requested, got brought to the ward, but didn't start on any drugs till about 3:30pm - which knocks the whole regeime back!
If anyone is interested, this is the treatment i'm currently having: ESHAP.

All has been uneventful I guess. 2 lots of visitors. (Tuesday and today)
Eyedrops 4x a day which I was totally not used to. 2-3 drip pumps at a time.
Bloody steroids making me hungry as hell and suffer from bad insomnia (thank goodness for Temazepam!) I've put on 1/2 stone since Monday, which I'm not happy about. 2 people have now commented my face looks different :(

I've had a bit of a depressing day today. Feeling very homesick and teary, and just need to be back with the people I love I think. Even if it is only for 2 weeks till I'm next in here again.
Lots and lots of feelings of guilt too. I know it's not my fault i'm ill, but I hate putting people through all this stress and shit. No one should have to go through it, and I hate myself for doing it to those close to me. I've really struggled with these feelings today - it's like a big fight inside my mind and it's hard to deal with.

I should have been home today (Friday) but because of the late start on Monday, it's going to be tomorrow that I can escape.
Phew.
Cabin Fever is not good.

Chemo, Transplants and TMI

Today was my appointment with 'The Transplant Doctor' (as I like to call him).
I saw him last year when I was supposed to have my transplant, but obviously that all went tits up, so I was there again today.

He just went through everything again - but obviously this time it was geared around an Allogenic SCT, rather than an Autologous transplant.
He told me the risks, the hospital stay, the chemo, the blood tests, the recovery times, and he also explained in more simple terms how the transplant works.

IF (thats a big if) the chemotherapy works enough for me to have the transplant (tumours need at least a 50% response), then I will have the transplant quite soon after - so if things go smoothly (do they ever for me?), we are probably looking around x-mas time.

Recovery time for an Allogenic SCT is about 12 months.....................so that plus Chemo time in a few weeks we are talking minimum of 15 months.

There isn't even a big chance of it all working......but it's this route or nothing.

Fun.

...

Fail.
Everything is a fucking failure.
The treatment didn't work.
Cancer is more active than it was before I had the treatment, and also growing again.

ESHAP chemo starts in 2 weeks.

8 years fighting is taking it's toll on me.

The past 3 months....

I last posted after I'd been at home for 1 week when I'd received the CHT-25 treatment.
Now it's about 14 weeks post treatment. So much time has passed, and all I've wanted is my life to be as normal as possible - which meant not writing here.

I had a scan at 4 weeks which was very positive - nodes in my neck were no longer active. Chest tumours had shrunk by half, and under arm by 2cm. All fluid in my lungs had also cleared, as had the rash on my chest. I had energy, and could actually breathe.

Since then I seem to have been on the up - doctors have been pleased with my progress. Doing their usual prodding and poking they continued to think the tumours were shrinking.
My bloods continued to drop, but the lowest they got was my neutrophils at about 1.2.
After 10 weeks of continuous weekly hospital visits they said I didn't have to go back for my last few appointments as I'd had no problems, and my bloods were on the up. They booked me in for a PET scan, and to get the results a week later.

The LEP and both Granada and BBC have all done a few more pieces, so I was famous for a short while again.

Hearing I didn't need to go back for a few weeks, and also starting to fall back into depression - like a big chasm below me - only holding onto sanity with my fingertips, I requested my PICC line to be taken out, and I booked a holiday with Mum.

Now I'm back home, and my PET scan was today. I hate those things. hate.
The bed you lie on is metal and cold. The room is freezing. The arm rest thing is metal and cold, and a conbination of havig your arms above your head, and your whole body freezing makes your shoulders feel like they are being ripped out of their sockets. The nurse counted, and in the past 18 months I've had 5 PET scans.
I'm sure I'm always going to be slightly radioactive. Just look for the 'glowing' house on google maps.

Results day is 27th September.
In 8 years I've never been nervous about scan results. This time I am.
All I want is for the treatment to have been a massive success, then I can get on with chemo and a transplant, and get my life back on track.

I want to enjoy myself. I want to travel. I want to work. I want to feel 'normal' again.

1 Week at home

Well, I escaped last Monday - whch was also a joke.
Waited 3 hours for medication, which was then all wrong.
Luckily Mark rescued me, and we got a direct train home, which took just over 2 hours - I could just cope with that, whilst inflicting my radiation on the general public.

The past week has just been normal, apart from not having close contact with anyone. After tomorrow I'm 'safe' again around adults.

I went to Christies today for a check-up and blood test.
My White count was 4.5, HB 11.4, and platelets 566.
My platelets (high because of the lymphoma) are the ones that are most expected to drop in the next few months (because of the treatment), so I'm to be a regular visitor of Christies for the next 3 months.
I'll be going [at least] every Monday! Oh, the fun!