Still in remission!

On Monday I had a blood test with a follow up appointment with the consultant on the Tuesday in Colchester. Again it's all good news! My WBC (white blood count) was 4.7 (the range it should be between is 4.0 - 11.0) This is good. If the leukaemia was back it would be very high. When I was diagnosed I had a white count of 130. My HGB (haemoglobin) was 14.2 (range: 13.0 - 16.0), PLT (platelets) 139 (range: 130 - 400) and NEU (neutrophils) were 3.04 (range: 2.5 - 7.5).
So everything is back to normal! The blood test result sheet also shows about 20 other things which used to have 'l''s or 'h''s next to them (for low or high) and often '!''s when something was really not good, but this blood test showed only two very insignificant ones!

Other things have developed since I last blogged too. In September I'm hopefully moving over to Birmingham where I'll be doing an internship with a church. This will involve some training and working with various community projects as well as with the church itself.

On a sadder note I'm no longer working at the centre after they asked me to leave in mid-June. The reason they gave in the email made little sense so we can only assume that there was an underlying reason, perhaps my illness, why they didn't want me there anymore.

My mum updated the blog last time and mentioned that she and Anna were doing the Race For Life to raise money for Cancer Research. Thanks to all those who have sponsored them!!! Their target was £500 but have gone way over that by raising £735!

Thanks again for the continuing prayers and interest!

One of the best letters I've ever received (or been copied in on) confirming that I've been in documented CR (Complete Remission) for five months (now six months).

This weeks blood test results!

Hello everyone.
I, Gisa, am writing this blog entry. Matt is too busy and has currently no internet, so here goes:
He's doing really well.
His next check up will be in Colchester on 19.07.11.
Another matter: please sponsor Anna and me in our "race for life" on Sunday (3rd). We have nearly reached our target and wouldn't mind exceeding it!  :)
We are collecting money for cancer research. Please feel free to donate as little or as much as you like.
Thank you very much! Here's the link:

Sponsor me and my mum :)

2nd Check-up

I'm rubbish at blogging.I'm not going to lie! It's been a month since the last post and it might have left some of you hanging.

So I'll start with a follow up of the first clinic appointment. I saw the consultant and he was happy with my progress! I asked him a few questions which was useful. One of them was how bad he thought I was when I was first admitted. He replied saying that had I left going to the doctors a few days to a week longer it could have been a very different story - so I'm glad I went when I did!
Following that I had a blood test, but no bone marrow biopsy because they hadn't booked me in, so I was told to book one for today.

That was pretty much all they had to say. Last week I got a letter with the blood test results and everything was back to normal! A huge relief.

So, today I went back for my second appointment with the consultant and a bone marrow biopsy. I knew I wouldn't have a blood test today as I had one yesterday morning - again with good results. Nothing  to worry about.
Nothing new was said about my condition today. The consultant showed me a graph of my blood levels since the 15th December which was very interesting but that was pretty much all. He did however tell me that I only needed to come back to Bart's every three months now, going to Colchester every month.
I mentioned my bone marrow biopsy and he checked with the trial nurse who said that I no longer need to have monthly bone marrow biopsies as part of the trial as my cell markers aren't what they originally thought them to be! This was great news as they HURT. It also means that when I fly to Germany on Saturday I wont be moaning and fidgeting all the time as I would have ached.

It was quite nice in the waiting room as two of the other guys who I was in a ward with during my final round of chemo also had appointments and it was great to catch up. Unfortunately neither of them have finished their treatment yet, but it will be great when we can all meet up outside hospital walls in the not too distant future.

That's all for the time being. Will do a better job of updating in the future!

First check-up

So, tomorrow morning I have my first monthly check-up: a meeting with the consultant followed by a blood test and a bone marrow biopsy. Am really hoping that it's all clear! Although I feel physically better than I have done for a long, long while there's always the thought in the back of the mind that it could come back.

It also turns out that the tough stuff isn't over yet. When I was having treatment I assumed that my illness was just putting my life on hold for a few months and would commence when it was all finished; however, the frustrating thing is that despite how fit and able I am to do things the opportunities aren't there and I find myself kicking my heels around. Possibly the worst thing about the past few months is being so close to death and then not being able to resume living life to the full - even though I'm well enough to do so. I guess that when one starts to appreciate the worth and value of life but isn't given the opportunity to make the most out of it it's like a kick in the teeth. Looking back over my treatment this is the hardest part. At least whilst I was in hospital drugged up I was doing all I was able to - sleep. Now that I'm well it's difficult to still be expected just to sleep, and it's even harder to find people who understand me.
However, I have been doing a few fun things. I went windsurfing at the weekend, and there's nothing quite like bombing around on the water to make you feel alive!
I'll update this again tomorrow with the results of tomorrow's appointment.

HOME TIME!

It's a lovely Sunday morning here in London! The weather forecast is good and it should be another day for shorts and flip-flops! But even better than all that, is that today is the day that it's all over!
I was diagnosed on the 15th December 2010, admitted to St Bart's on the 16th, and can today, 10th April 2011, come home for good! All that's left now are my monthly bone marrow biopsy's. Check ups will be cut down each year until in five years time I get the all clear.

It's been a rough ride and my body's taken a beating! But I'm alive and well! Had I got the illness 60 years ago (before chemotherapy was used as it is today) I wouldn't have seen Christmas; but, thanks to the medical care I've received and the prayers and support from you guys I'm still here today! And will continue to be for a long while yet!

Yesterday they removed my PICC line, (below is a photo of it before it was removed) which was used for infusions, transfusions and taking blood. It's nice to be able to have a shower without having a bag tied round my arm!

What will happen to the blog I don't know. Perhaps I'll update it after check-ups, or if there's any other news. I have no idea yet. But feel free to keep an eye on it.

The last four months have been a huge learning journey for me. Discovering what's important in life and what isn't, how short life is and how we need to make the most of it, how to live with an eternal perspective and most significantly the beauty in suffering. The amount of good things that have come out of this amaze me! I can say now, at the end of it all that it was a worthwhile experience - but I don't want to go through it again! :D

Thank you to everyone who has gone through this with me. Thank you for your encouragements along the way. The text messages for me to 'keep my chin up', the cards and letters, the visits - thank you all so much!

I've been blessed with a hugely supportive family too. Everyday that I've been in hospital one or both of my parents have visited me. They've stayed many hours, putting up with me being spaced out on morphine, being asleep, sick, grumpy and all the rest of it. I couldn't ask for better parents.

And finally, I would not have got through this as positively as I did - perhaps not at all - without God's strength sustaining me, His love and mercy allowing me to trust Him and His promises and ultimate goodness giving me hope that whatever happens is part of a bigger plan that is for His glory. GOD HAS BEEN SO SO SO SO GOOD TO ME!

Guys, thanks again for everything! It's time to go home!

My peripherally inserted central catheter (PICC line) The blue tube travelled in through the vain, up the arm, to just above my heart. It has served me very, very well!

Bit more hospital fun!

First of all let me start with some good news! Over the weekend I bumped into my consultant and asked him exactly why I wasn't having a bone marrow transplant, to which he gave the best reply I could have hoped for! A while back he mentioned that there is a form of FLT-3 (the mutation I have) which isn't bad and doesn't affect the prognosis. However, only 10% of people with the mutation fall under this category - and I'm in that 10%! This not only means that I wont be needing the bone marrow biopsy but it also means the likelihood of me not relapsing has shot up from 25% to 40/50%!
Anyway, a bit of not so good news was that on Monday I noticed I had a bit of stomach ache which was getting progressively worse over the day. In the afternoon I went over to the day unit to have my observations done and they saw that my temperature was slowly creeping up. The doctor had a look at me and told me that I could stay at the hostel but if anything got worse I should phone the on call doctor immediately. At 0300 in the morning my temperature was 37.8 so I phoned the doctor (who was blatantly asleep) and was told to come into the hospital straight away. Since then I've had x-rays and antibiotics. The worrying thing was that my immune system was still at 0.0 so my body couldn't fight whatever infection it was that was bothering me. But last night, well early this morning my temperature was down to 36.6 and now 36.3 which is so much better than the 38 mark that it's been at for the last few days! I've had a blood test this morning and I'm hoping that that will show that I've got some neutrophils back too. 
So all's good now! Just hoping to get back home very soon!

Very nearly the end.

I came out on Sunday afternoon feeling a bit washed out, but very happy that I wont be having chemo again! Over the last week I've been going into Colchester for blood tests and have been down to Tollesbury a couple of times. It's just been great to get out of hospital once and for all!
I had another blood test yesterday and my counts had dropped loads. Going with how it worked the last couple of times I thought I'd be going back to the hostel on Monday, especially since my levels were pretty good on Wednesday. But nothing's ever the same so I'm back in the hostel now without an immune system. Just hoping that I can go for a week without an infection!
I'm quite pleased that they've dropped quicker than last time as it means they'll come up quicker and I can get back to normality ASAP!
I've been over to the day unit this morning for a blood test and this afternoon I'll get a bag of platelets.
Will keep you posted!