Sunday, 28 February 2010

One week on...

One week on and I feel definite improvements! My white counts have slowly climbed to 0.9 (as of yesterday), helped on my GCSF injections - growth factor injections that stimulate the bone marrow. Now my various symptoms are reducing down.

They took my stomach line out during the week and I'm also off oxygen which is a god-send.... after a while, the mask feels part of you and it's actually a strange feeling having my own face back! They've also stopped feeding me intravenously and I am back trying to eat my own food.

This is the only real problem I have left - the food tastes disgusting! Now in the past two rounds, I really didn't mind the food, so I think it is my taste buds which have been affected by the chemo process rather than the quality of their food (although they can't cook fish to save their lives .... "when it looks like rubber .... you've overcooked it!!!").

Things I like eating now - croissants, fruit salads, tomato soup
Things I don't like eating but force down - overcooked fish, mashed potato, jelly, milk shakes

So ... all in all, feeling better and can see an end in sight. A few more days of higher WBCs and hopefully my taste will return back to normal. Hopefully the cooks will also learn how to cook fish at some point soon ..... :-)

Sunday, 21 February 2010

Mostly still feeling the same ...

Since Thursday things haven't changed much. But a quick summary - Am still having a lot of diarrhea, feeling bloated at all the time and need to use a mask to help me breathe. Also having another round of hair loss which I had had in round 1 but skipped entirely in round 2.....

here's a picture of me now:

feeling ok in myself though. Temperature is a bit of a pain - appears to keep peeking and troughing. Have had a temperature now for over 10 days! It also makes me incredibly thirsty and I'm not meant to be drinking (just sips, ice cubes and ice lollies).

My WBC jumped to 0.4 on Friday (from 0.1 the day before) which really gave me a a boost that they were going to recover quickly, but then on Saturday they dropped back to 0.2 and today, they are 0.3; therefore appears they may go up slower than we anticipated.

Anyway, that's where we are on Sunday! Hope my WBCs improve over the next couple of days and that fixes the other diarrhea and other issues rapidly!

Thursday, 18 February 2010

12kgs in 3 days! What a weight plan!

My normal weight as been around 81-83 kgs since I first started in hospital.

After this round started, my weight quicky dropped around around 77/78 kgs as I stopped eating all food.

Today my weight is 91.3kg. 91.3!!!!!!!!! OMG.

that's like 14kgs put on over the past week!

Now my understanding for this is that this because of all the IV drips I have been receiving; most of which also include saline. This includes around 2.5lit per day for TPN (their IV feeding complex); all my antibiotics, all my antivirals - virtually all my medication is IV now.....

This causes your body to bloat and I think this is contributing to the breathing problems I've been having mainly over the last couple of days. I'm finding it really hard to breathe in deeply and end up hyperventilating with short breathes. We think this is because the additional weight is pushing on the diaphragm preventing a proper breath.

Therefore I should be taking a diuretic to help get the balance back in place - wonder what my weight will be tomorrow?!

Otherwise today has been similar to yesterday....

WBCs are still at 0.1 and haven't risen yet - am really waiting for this to happen as it should kickstart the recovery of all my other bits and pieces....

Wednesday, 17 February 2010


Just seen all the pictures up on for the Richmond walk which all look great.

Thanks so much to Tony for organising it so efficiently and putting so much effort into the web site and stuff.

Thanks so much to everybody else who contributed - Can't believe how much money you raised!!!!!!! Am very appreciatve and moved.


MACE is badddddd.....

Sorry for not posting for so long. Have had a pretty rough ride of it. Everything I wrote about the first two rounds of chemo might as well be ripped up and started again as this round has redefined everything for me.

All the way through the previous posts, i was 'touching wood' (for want of a phrase with less dodgy connotations) that things would stay manageable. My biggest concern entering round 3 was whether I'd get a private room or not!!

Well I didn't and got a shared room as I've already mentioned, but this has been the last of my problems. After about day 2 I started getting really really bad nausea. Even though I was on hte standard anti-nausea tablets (and ones which had worked previously); they just weren't doing anything. Anything would trigger it - smells (especially any ward smells), food, thoughts. Felt like I was a speed boat that was giving me sea-sickness that would never end! This was accompanied by sickness and diorrhea any I was finding that any food I was eating was coming up (or down) by the end of the day.

Therefore I stopped ordering meals soon and was surviving just on water (which incidentally was absolutely tasting fowl).

Doctor's were saying these were all standard MACE (my chemo regime) side effects and worked initially to control the nausea. It took about 4 days for it to be right, but I now wear a bag around my shoulder which constantly injects high dose anti-nauseating drugs into me. Very trendy, I think you will find - a winner at the pub on a Friday night!

Because by this time, I had also not eaten in several days. Therfore they then put me on a food bag which injects food directly into my veins continulous throughout the day. Funny thing is it is a white infusion so you think it is just milk but apparently it's special and goes directly into your blood stream.

By now then I was getting pretty wired up again and still having reasonable frequent sickness and diarrhea so they moved me to a single room one night last week. THat was a massive step forward as with these conditions, sharing a shared bathroom was just a little too gross.

During this time, my counts were still dropping and I went neutropenic obout a week ago. I also picked up an infection around the same time and my temperature has been fluctuating between 38 and 41'C......

I also had a stomach tube put in, where they insert a smallish tube up your nose, down your throat and into your stomach. That's one of the most unpleasant experiences to date!

I've had multiple xrays and a CT scan and lots of people prodding my stomach (which always makes it feel worse). The general conclusion is that this is MACE side effects, they suck, and you just need to ride the storm .....

I now get loaded with IV delights throughout the day and night as well which is fun ... all the pills i were taken have been replaced with their IV equivalents so that they get absorbed into the blood and there's no risk that I'll just vommit them up again.

I'm rereading this post and it doesn't make a lot of sense; apologies. I am finding if very hard to concentrate on anything particularly. I'm typing so slowly - those that know my normal typing speed will be appalled. I also can't spell but probably couldn't do that when i felt normal.

Because of this it is really making the days a challenge - watching TV does nothing for me at all. I fall asleep in the middle of doing anything; even writing texts or or whatever. THe easiest thing is to lay in bed and close your eyes whilst the nurses endlessly poor IVs into you.

The only end in site is when my white count recovers. It was 0.1 then went to 0.2 for a couple of days and now has gone back 0.1; therefore have no real idea when this would be, but doctors are hoping it could be Monday where the recovery begins. I have been promised that recovery will be rapid. And this is good because I am so looking forward to the having a diet coke with ice and drinking it without later throwing up!

I will write sooner next time

Sunday, 7 February 2010

Thank you

To everybody who went on the walk yesterday as well as anyone who donated to the drug fund, thank you from the bottom of my heart for your support, strength and encouragement. Love to you all...

Haven't written for the past couple of days as have been hit with sideeffects from the chemo as predicted - bad nausea, vomiting, fatigue and diorrhea today. Hopefully the effects will subside over the coming days as I am due my last 24 hour marathon of chemo tonight.

Will write more when I feel a bit better, but if you you have any
photos from the walk pls email them to me!!

Thanks again everybody!!!


Thursday, 4 February 2010

Midway through day one

As per my previous post I was meant to go back into hospital on Tuesday.... I actually did end up going to hospital on Tuesday but by the time I had been 'processed' it was too late to receive my chemo so I went back home and came in properly yesterday.

This time I am, at least for the moment, in a shared ward. I was a bit apprehensive about this having been spoiled with a dedicated private room for the last two courses, however, it is better than I expected. The other 3 guys in the room are also young with various types of leukemia and are at various stages of treatment. They all seem amicable kind of guys!

There was a single computer to share between the ward, but a quick installation of a wireless router sorted out my internet connectivity ;-) We also each get a LCD TV hanging from our beds. That, plus being largely bed bound due to my effectively constant drip, makes the experience feel quite a lot like a very long flight in an airplane!

Started my chemos yesterday late afternoon after the treatment coordinator reemphasized all the various risks of this round; always a cheerful conversation! I started with a two hour infusion of Mylotarg, the much anticipated experimental drug then this followed with a one hour infusions of Amsacrine and Etoposide. Then I was put on a 20 hour drip of Cytarabine which ran over night and is just over half way through this morning. This will repeat (except for the Mylotarg) every day for 5 days by which point my counts will be dropping until I am neutropenic again. This should last for a week or so and then my counts will rise again and I should get leave again.

So far am feeling fine so hope I have avoided any infusion reactions - bit of a headache this morning but I suspect that's because I didn't sleep too well last night so am a bit tired. Still drinking a lot of water meaning frequent trips to the toilet which are a bit of a drama having to walk my permanently attached drip around with me.

Still feeling very positive about things; getting a negative MRD (minimal residue disease) result on round 2 has really allowed me to be optimistic that these two final rounds are more for 'safety' and just to hit anything that is left with a multitude of hardcore killing chemicals that each work in different ways to target leukemia with a full range of weapons.

Finally, a quick shout out to everybody to say thanks for your emails, texts and blog comments - sorry I haven't replied to too many emails whilst i was out on hospital, hope to get back to you over the next couple of days....

Also to all those doing the Richmond walk - thank you so much again for agreeing to do it and to everybody who has raised money for the Mylotarg I got yesterday - it is really appreciated! As I'm in hospital, I unfortunately won't be able to come to Richmond Park but will be thinking of you all and hope to see lots of photos!

Take care!

Tuesday, 2 February 2010

Round 3!

Today I'll be going back into hospital for round 3 of chemo. As it stands, there are no single rooms available so I'll be going into a shared bay of 4 beds. I'm also not sure if I'll have internet any longer so don't know if I can email or post to this blog regularly...... if the worst comes to the worst, I'll talk to you in 3 weeks!

I'll be getting MACE + Mylotarg this round which is a collection of four drugs:

1. Amsacrine
2. Cytarabine
3. Etoposide
4. Mylotarg

The Cytarabine is delivered through an IV drip for 22 hours per day for 5 days; the others are IV pushes or quicker IV drips.

Am hoping this round goes ok, but understand the side effects may be greater because of the different drugs. Also, am still worried about some of the side effects of Mylotarg but hope I don't get too seriously affected....

I'll post an article as soon as I know what's happening!

All the best,