Matt's Thanksgiving Service - Saturday 7 January 2012

After Matthew was told that nothing more could be done to make him well, he had a good week at home which he spent with family and saw a few friends. He also wrote down his wishes for a thanksgiving service for his life. His health deteriorated quite rapidly and on Thursday 22nd December he died at home. 

Matt communicated to us that he was not afraid and that he knew all the way that God was with him. Matthew was not in pain. Matt will be much missed but he is now more alive than ever in the immediate presence of his Lord and Saviour.

We would like to invite everyone reading this blog to join us in celebrating Matthew's life in a thanksgiving service on Saturday 7th January 2012 at 12 o'clock in St Mary's church Frinton-on-sea. Please check www.stmarysfrinton.org for directions. We would be so pleased if you could attend.

Matthew requested that if possible, black should not be worn.

Thank you for your support and interest during the past year.

We are looking forward to welcoming as many of you as possible .

David and Gisa (Matt's parents)

One of the last posts

On Friday night I had really painful back spasms which woke me up. I mentioned them to the doctor on the following day and she prescribed some codeine for the pain. I took two tablets and in the evening was sick. On Sunday I got the news that my neutrophills had come up to 0.6 meaning I could go home! I was still being sick and was feeling really tired and exhausted. I told the doctor this and she said it was probably down to the codeine (even though I'd only taken two tablets).

On Monday I wasn't any better and wasn't keeping any food down so on Tuesday I texted my clinical nurse in Bart's who said I should go to Colchester hospital for a check up which I did.
I had a bag of blood and the doctor I saw there wanted me to stay over night so they could give me some fluids.

Yesterday morning he came and saw me telling me that I would have an MRI scan and a bone marrow biopsy (to check things were going in the right direction) and then could hopefully go home in the evening.

I had the bone marrow biopsy in the morning and then early afternoon the consultant I'd been seeing in Colchester came and saw me. I found out that the biopsy was actually done because the day previously the doctor thought my blood counts looked a bit weird. After looking at the biopsy they could see that the counts were indeed odd and that I'd relapsed. The last load of chemo I had didn't work and there was little they could do for me now. I was told that there's some experimental treatment happening and that if I was interested she would find out some more information for me and see if I fit the criteria. Other than that they would try and keep me as well as they can for as long as they can. This could be weeks or months.

I then had the MRI late afternoon and didn't get the results - they might come out today.

It wasn't really the kind of news I was expecting to hear but I knew it was a possibility that that might be the outcome since the second relapse.

I'm now planning to enjoy Christmas and enjoy my time at home. Although this wasn't the desired news I know where I'm going and that God's in control and that it's part of His plan, even though I may not understand it this side of eternity.

One week later

A week has passed since the last update and there's not a huge lot new.
My walking (still not perfect after the op) is improving quite a bit and I'm a lot less wobbly!

At the moment I'm neutropenic and pop over to the day unit every morning and afternoon for observations, blood test and check by a doctor. Two things have happened since I've been here. Firstly, I wasn't religious enough with my mouth washes and I got a soar mouth for which I was given more mouth washes and morphine, which I haven't had to use so will save it for a 'special time' (Not really - will hang on to it incase it ever comes in handy) and secondly I put my thumb in my pocket stabbing a key or something up my nail which has since got inflamed. I was worried that the infection might get really bad as I don't have anything to fight it with, but it hasn't got worse and am hoping it will stay that way.

I've had a couple of blood and platelet transfusions and I'm pretty tired, but they only transfuse blood when the Hb is 8 or below. Mine's just creeping down very slowly but is hovering around the 8.3 mark. Low enough for me to be tired but not low enough for a boost. I'm hoping that the cause for it going down so slowly is that my counts may be recovering and will come up soon meaning I can go home.

Apparently I have an irregular heart beat too, although ECG scans show that everything is fine. So at some point I'm going to have a 24 hour ECG to see what's going on.

There's not really any other news right now. Just waiting...

Out of hospital!

On Thursday I was told that if my counts were good when I finished my chemo on the Sunday I would be able to go home. My blood test on Sunday morning showed that my counts were good, but...the pharmacy were closed and they hadn't done my medications, so I couldn't go home until last night.

The chemo this time round was a very high dose and worked out that if I were to start it in the morning I would have had the chemo every other day - but as I started it in the evening it wasn't quite like that. I ended up having a day of doing nothing but sleep and be sick and then a day of being fine and heading to the hostel over the road for the day. It was pretty horrible this time.

I'm so glad to be home and am just resting up. Had a visit to the beach this afternoon but on the whole I haven't done a huge deal.

Tomorrow morning I'm going to the day unit in Colchester to see if my blood counts have dropped below 0.5 meaning I'd have to head back up to Barts for a couple of weeks till they climb back up. I'm hoping I get a couple more days at home, but am not holding my breath. Either way I should be home in time for a Christmas at home! Unlike last year when we celebrated it in my hospital room - not quite the same!

In remission...again!

I went to Bart's yesterday and had an MRI scan as planned. Just before the end they like to inject something called contrast (a dye), so they took me out of the machine and tried 7 times to put a cannula in but every time my veins closed up so eventually they left the contrast bit out. For some reason they aren't allowed to use the PICC line - which would have made life so much easier!

Following the MRI I went to my appointment with the consultant. Instead of seeing him at 1100 I saw him at 1330, a bit of a long wait, but it was worth it. When I saw him he told me that I was doing fantastically well, am "made of hard stuff" and more importantly am in remission. He said I couldn't be doing better. This is all great news and pretty encouraging. 

The plan ahead is still a bit blurry, but I will have at least one more load of high dose chemo and possibly another afterwards too. Because I've had the same kind of chemo before and I didn't stay in remission they know I wont after just chemo this time either, so I will definitely have the bone marrow transplant. At the moment they've got a 9/10 match, who they would be happy to use, but they're still looking for a 10/10 match as this would be ideal. 

Following the appointment I had to go to the day unit for a line lock (antibiotics) to be put into my PICC line and they told me that the scan people had been on the phone and wanted the day unit nurses to try putting a cannula in. So on the 8th attempt it worked and I went back downstairs for the rest of the MRI. After that I went home! 

So, it's all good news and I'm responding to the chemotherapy which is great. I start the next load on Monday and should hopefully be out in time for Christmas at home. I have a few days at home to rest up and enjoy now. 

Round 1 down...

Yesterday I had a bone marrow biopsy in London which went well - it just aches a bit now! I'm hoping the results might be back tomorrow but I was told on the phone earlier that it could be longer. The results will show if I'm in remission or not. If I'm not in remission it'll mean that the chemo didn't work and didn't destroy the leukaemia cells and the future treatment plan will be very different. I don't know what it would look like. I'm praying I am in remission and I can carry on with treatment as planned.

Tomorrow morning I have an MRI scan followed by a clinic appointment ( chat with the consultant). After that I'm coming back home and will be readmitted (if all's going to plan) on Monday.

I'm about to go to Colchester hospital as I need to have antibiotics put in my PICC line every day for 10 days and then will go up to London and stay there over night in time for tomorrow morning.

Last Saturday I was very grateful to be given tickets to see England beat Spain at Wembley. Below are a couple of photos from the game.

Count's are up!

I finished my chemotherapy on the 23rd and was then waiting for my immune system to come back up. I was well and fine, although pretty tired during that time, until Monday this week when my temperature shot up. It was around the 39 degree mark (sometimes higher and thankfully sometimes a bit lower) until Thursday when it came down. The high temperature was due to a lung infection I somehow managed to pick up, but I'm on antibiotics to clear that up, and today I found out that my neutrophills were 0.2, so were I better I could go home in a day or so, but due to antibiotics and still not feeling 100% I don't know when I'll go home yet, but I hope it will be soon.

The Dr. said that my infection was getting better and that I'm having the right drugs to treat it, but I've noticed how my breathing has become worse resulting in coughing, especially when trying to sleep. I'm hoping the Dr's right though and things are on the mend.

That's all for now, updates will continue.

Short update

I'm part way through my chemo now. I had two drugs at the beginning but one of them was only to be given three times and I'm glad that that has ended as it was quite a rough one. I finish the first round of treatment either today or tomorrow - am not sure yet, but hoping it's today!

My spirits are staying high and I'm so looking forward to being better and life resuming again - I'm pretty bored of all this now!

My blood counts are dropping and I need transfusions to keep my blood products up, so I wont be coming home in between this set of treatment. I can imagine there will be another 2/3 weeks being here before I'm allowed back home.

On the plus side New Zealand won the rugby this morning which I was able to watch in my room - even if it was a bit of a disappointing game!

My weight is coming up and I weighed 63kg yesterday. I'm eating lots and having lots of build up shakes (they have about 900+kcal) which seem to be doing the trick! I'll be back up to my normal weight soon I hope.

I think that's all for a now, just a quick update - I'm still around and doing a lot better as I was pretty sick at the beginning of the week but am fine now. I also had an MRI scan at the beginning of the week which was positive with no signs of regrowth! Some great news!

Thanks for the continuing support and prayers!

Latest news...

Yesterday I went to Bart's for a clinic appointment. I saw Dr. Smith (my consultant) who told me a number of not so great things. Firstly my bone marrow biopsy results were back and the Leukaemia has come back there too, which apparently is not uncommon. He reckon's that the chemotherapy I'm having will treat that as well though. They've also decided I'll have the bone marrow transplant as well. He said that realistically things didn't look great and that the result's for a cure aren't very high, but they are still treating me to cure me and there are a small minority of success stories.

But just as I was in the small minority concerning the FLT-3 result, I'm praying I'll be in the small minority again. It'll take another miracle to heal me!

I'm doing fine but please remember people in your prayers.

I'm reminded of the metaphor of God being a potter and we're in His hands - He can do anything with us.

Today I went back to Bart's again where they put a PICC line back in, in a slightly different place though and with the use of an ultrasound! That pretty much was fine.

What happened next??

Yesterday I travelled up to Bart's to find out what the plan would be. I had a blood test (and my blood's all fine! - Everything's in it's ranges, apart from the platelets which are a bit low, but they're always like that) and a bone marrow biopsy - done by Deo who's the 'king' nurse. He's very good and I was happy to let him practice!
I saw Dr. Smith too who told me what the plan would be. Firstly, I'll be at home for a bit so I can be fattened up a bit and hopefully recover too. I go to the clinic on Wednesday the 12th October with the view to admit me on Monday the 17th, so that's nice! When they admit me they want me to have 2 cycles of high dose cytarabin chemotherapy, the same as what I had last time, just a bit stronger, and probably a month of radiotherapy. All depending on how I respond to it I might have a transplant, I might not. They're going to look at it though.
The Dr said it'd be hard to treat, because the AML is clearly 'a bad boy' and is very vicious but they're treating me to cure me and it's do-able. I asked Deo if he knew of any success stories, and he does. He told me that Dr. Smith was right to say it's not easy but it is very very do-able! So that's good news!

I think that's all for a now! Thanks for your prayers and support everyone!!!!!!!!!!!!!!!!!!!

So I'm home again....

Hi there,

It's all a bit of a blur really and I'm going to keep it short. Last month I moved up to Birmingham which I was really looking forward to and I went to Bedford for my first lot of training. Whilst I was there I started being sick and dizzy. I went to the hospital but my blood was fine.
When I was back in Birmingham I was fainted and not holding any food down so I went to the hospital again - blood's were good and they thought I had labyrinthitis, a virus.
On the Monday I went home and I don't remember anymore. Apparently after that I was confused and went to colchester and then for over a week in Queen's in Romford. They took a tumour out of my brain which was a relapse of the AML. I'll find out more on Monday but I'm home this weekend which is nice :) On Monday I go up to Bart's, probably for some more chemotherapy treatment, that could take a few more months. That's it for now. Will try and keep this updated. God is so so good though, and He's in control whatever His plan is...

Check-up

On Thursday I had another check up. I had my blood test (done by an agency nurse or someone with little experience, who attacked both arms and made a bit of a hash of it) and took it to the lab. When I got the results back I was pretty worried as I'd had a blood test last week and the counts had changed quite a bit. My platelets, haemoglobin and red blood cells were all under the limit and my white cells were far higher than normal (although still within the limits). However, the consultant checked over them the next day with a microscope and there's nothing abnormal to be seen so I'm very relieved! Apart from that there's nothing new to report. Mum and Anna have raised £1000 towards Cancer Research which is fantastic.
I'm off to Devon next week which will be great as I haven't got away for a break at all yet.
Will keep things updated.

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!

Last night in hospital

This is my final night in hospital! I'm currently hooked up to my penultimate bag of chemo - the final one being administered tomorrow morning. When that's finished I should be allowed home for a week or so until my counts drop again. Then I'm back in the hostel for the last time and then normal life will resume! Right now I'm pretty excited. It's like the light at the end of the tunnel is a couple of meters away (and that light isn't death, haha) Although, that's a light too...
Anyways...it's all gone pretty well this time round. I've gone out everyday this time. Have had numerous walks to the river, gone out for coffee's etc. Last night I managed to spike a temperature which was annoying (especially since I went for two rounds of chemo with no side effects) but that's settled down now. I have one more dose of antibiotics to take for that in the morning and then it's off home.
So, that's the latest update. The end is nigh!
Thanks for the continuing support and prayers!

Final Push...

Well, it's been a while since the last post and a lot has happened since being back home! I've been going into Colchester hospital for regular blood tests which have always been fine and I had an appointment with a consultant on Wednesday. An outcome of that meeting was that a suitable bone marrow donor has been found. There are 12 categories that need to be matched and this donor ticks 11 of those boxes. However, the area which is not a match isn't very important so they'd be happy to use him/her. The results of my last bone marrow biopsy had also returned which still showed that I am in remission - Still no sign of any leukaemia cells (but they know there are still a few hovering around. Just praying that don't club together and kick off again).
So since being at home I've spent most of my time back at Fellowship Afloat. It's felt like nothing's different (apart from the odd afternoon where tiredness kicked in) but towards the end of my time out of hospital I've felt better than I have done in ages. I've got back up to my previous weight thanks to some good food, and lots of it. And my fitness is increasing too.
At the moment I'm in my hospital bed waiting for a visit from the doctor. Tomorrow I'll have another bone marrow biopsy and will begin my fourth and final round of chemotherapy. Only another six days of these life saving drugs! In about two and a half weeks I should be out again FOR GOOD!
I'm also back in Bodley Scott 1, the ward where I was at the very beginning, which is brilliant as the staff are top notch and I have my own room.
This last time at home has had it's downs as well. With everything feeling like it used to be, with nothing wrong, made it hard to think of the coming next weeks in hospital. But hey! In the grand scheme of things it's nothing, and if it keeps me better I think it's worth it!
Ho­ra­tio G. Spaf­ford was an American lawyer during the mid 19th Century and following the death of his only son, the collapse of his business and the death of his two daughters in a shipping accident he wrote these words in the well known hymn 'When Peace Like a River'

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to know,
It is well, it is well with my soul.

These words (and those in the rest of the hymn) have comforted and strengthened me in the last few weeks. What the future holds I do not know, but in whatever life throws at me, through whatever storms I go, God has taught me to recognise that 'it is well with my soul'. My soul, the core of my being, is secure in the certain hope that I have; namely that God is in control, has a purpose in everything and will one day take me to be with Him. But, I'm praying I have many more years here first! And I have no doubt I will!

Below are some photos from the last couple of days:

Frinton beach before going into hospital today

Father and son

Sailing on Saturday

 

Out again

On Sunday afternoon I was told that my neutriphils had gone up from 0.2 the previous day to 1.3 allowing me to go home.
Since then I've had a blood test, been sailing and today I attempted a day of work but only managed to keep going to lunchtime. Am a bit tired now but that could be due to a low hemoglobin level so I'm not worried.
It's just been good to be on the water again, do a bit of painting and get back to normality.
Tomorrow morning I have another routine blood test just to see how things are going and I may need a blood or platelet transfusion depending on those results.
My further plans for my time out of hospital (not at home because I've scarcely seen the place!) include working a bit more (if my body allows it - which I'm sure it will) going to Leeds at the weekend and whatever else may arise. I'll be going back into Barts next week for my bone marrow biopsy too, but that's not something majorly exciting...
So that's an update on me at the moment. I'm still infection free and things are going well! Life is very good! And God is even better! All this is down to his doing.
Will keep y'all posted!

On the up!

There's been little news over the last couple of days. I've been going in for my morning blood test and afternoon obs, and in between the to-ing and fro-ing have got lots of reading done amongst other things.
This afternoon I went back in for my observations and they had the results from this morning's blood test showing that my neutriphills have gone up from 0.00 to 0.2! When it hits 0.5 they send me back home. So it's a step in the right direction and I'm hoping they will have made the extra jump tomorrow!
It's really not that bad here but it will be good to get back doing normal things again, even if this does feel like an odd kind of holiday.
Other than that there's not much news.
Thanks for the continuing support and prayers!

Yesterday's afternoon excursion.

The result of yesterday's excursions...

The waiting game...

I had another blood test yesterday afternoon in Colchester which resulted in me coming up to Barts last night. Thankfully I'm in the hostel this time and not on a ward. All my levels were down and I needed a top-up of platelets. My neutrophills are down to 0 today so I'm going in every morning and afternoon for a blood test to see when they come back up! Hopefully it'll be by the weekend. I'm just trying to get through another period of not having an immune system without an infection! If that happens the doctors will be really confused. They said I was lucky not to get anything last time but that I would get something this time round. Well, so far so good. Only a few days to go and they'll be wrong! Maybe they'll wonder whether or not it's 'luck' or something bigger?
It's so nice to have the freedom of the hostel. I'm getting reading done and other such things. My aim is to finish 'crime and punishment' before my last load of chemo.
I'll be going back to have my observations done this afternoon and as soon as there's more news I'll update!
Thanks for your continuing support and prayers. Perhaps you could also remember 'D' in your prayers who is also undergoing cancer treatment and is going through a rough patch at the moment. Thanks! 

One week later!

Apologies that there haven't been any updates for a week.
This round of chemo hit me a bit harder than the last two. I spent most of the day sleeping and wasn't really in the mood to write on here. But I'm back home now so here goes!
Although the chemotherapy was more physically exhausting and I was a bit more sick than previously I haven't had any of the side effects that the doctor said I would get. No sore (spelled correctly this time) eyes, or rashes or fevers - as of yet. My neutrophils are on their way down so I'll be at risk of getting the mouth ulcers and infections again, but I don't see why I shouldn't go without again.
On Wednesday, after my last dose of chemo and when the mis-communication between pharmacy and the nurses had been sorted out I was allowed to go home. Yesterday I still felt pretty exhausted but I'm on the mend. I have a blood test on Friday which will hopefully show that my counts are high enough for me to go back to Twickenham to watch England beat France in the rugby. Then I'm back into hospital where I wait for my counts to go back up. When that's the case I go back home for a bit prior to my final round of chemo!! The end is in sight now!
On our way home from London a motorcyclist in front of us drove into the side of a car and it reminded me that we never know what's round the corner - when things might take an unexpected turn in our day-to-day living. Life is short however healthy we might be.
Thanks for the continuing encouragement, prayers and support!

Round 3

Sorry that it's been a while since the last update.
It's been a busy last week, not wasting any time. I've been up to see the rugby as mentioned previously, met up with different friends in various places, been to see a musical and the list goes on!
Yesterday I came back up to Barts for a chat with my consultant and a bone marrow biopsy. The consultant updated me concerning a possible bone marrow donor. At the moment the people that they thought could be have been a match have failed to be good enough so they are beginning another search. They're also running more tests concerning my FLT-3 mutation. Apparently there are different types of FLT-3 - some very bad and some not so bad at all. I didn't know this til yesterday and in a couple of weeks time they should know what type of FLT-3 mutation I've got. Am praying it's a good one as it makes my chance of a recovery a lot higher!
Right now I'm still in hospital and will be starting my 3rd round of chemo this afternoon. It's slightly different this time as I'll only be having one kind of drug opposed to the three or four I was having last time. However, it's a higher dose so as well as the normal side effects (nausea, infection etc...) I'm also likely to get fevers, rashes and soar eyes.
I'm over half way there now and that's a very good feeling!
The last couple of weeks have also had their 'down' points where I've desired some kind of assurance that everything will work out well. It would make planning the years ahead a heck of a lot easier! But assurance of how anything will turn out is never guaranteed and the sooner I learn that lesson the better! One thing I can be assured of is that God is in control and has a plan for me either way.
Will keep you posted on anymore news!

On the train in the rain...

Had another blood test this morning. Everything's settling down and is fine. On Monday the results where good but a bit high but now they're good, allowing me to continue with treatment on Thursday. I go in on Wednesday for my third bone marrow biopsy and will stay over night ready for chemo to commence.
Unfortunately my consultant has decided that it's not wise for me to do the powerboat course next weekend. But there's always another day.
So, there are a few things planned before next weeks' visit to London. On Monday I need my dressing changed for my PICC line. That's something I'm rather looking forward to as last time they decided to give me a teddy bear shaped thing on my dressing. Hopefully that'll be changed this time!
But before then I'm going to watch England play Italy at Twickenham (Rugby) on Saturday which will be good. It's amazing how many things you can get free by telling people that you have leaukaemia! I wouldn't say it's worth it but it's certainly a perk. Give it a go sometime!
I'm sitting in the train at the moment and it's great to have a bit of freedom!
It's all about making the most of these last days at home now. I can wear myself out and then relax next week when i'm back in bed!
Will keep y'all posted! Have a good day!

Nice surprise!

On Friday afternoon I went over to the hospital for my afternoon observations and I asked the doctor about something she mentioned in the morning. She'd told me that there were traces of my neutrifls but they had to count them manually. In the afternoon I asked her if there was any more news concerning the neutrifls. She went off to speak to the consultant and came back telling me that they'd gone up to 3.5 and that after a platlet transfusion I could go home! This was very bizarre! I was on day 16/28 of my second cycle of chemo and I hadn't had any infections, fevers or mouth ulcers! My consultant said that it was too early for my neutrifils to go up!
I was pretty pleased about this news and tomorrow I need to go to Colchester for a blood test to see how my levels are doing. They (the doctors) think it's likely that my counts will have dropped over the weekend but if they haven't I can continue to stay at home until my bone marrow biopsy is due.
So, I'm doing OK at the moment but am having difficulty getting to sleep. It could well be a side effect of the chemo but it's leaving me feeling shattered!
Just hoping and praying that the blood test is good tomorrow so I can go sailing during the week!

Hospitals and hostels...

What's been going on over the last few days? Well! It's been pretty good if I'm honest!
Where did I leave off? Was it Monday? On Tuesday I was told that my consultant wanted me in hospital so that they could monitor me more closely - but there was no bed for me (what a shame!!!) so I had to spend another night in the hostel which was great! But I was told that I'd be coming in as soon as there was a bed. So, yesterday I returned in the morning for my regular checks and blood test - but there was still no bed. I wasn't complaining. It's so nice to have the freedom to be a resident rather than a patient. I know that if I was in the hospital I'd just be spending the days in bed and feeling worse for it. On the contrary I've been walking to and from the hospital (only a one minute walk, but hey!), going to the shops, climbing stairs etc.

In the afternoon I needed a top-up of blood which made me a lot more alert!
Then this morning I again had my visit to the day-unit and was told I needed some platelets as they were down to 4. Most people have between 150-200. So I had a bag of those and then came back to the hostel where I am now.

I'm so pleased not to have had any mucositis or infections or fevers! The doctors are waiting for me to phone up with such news and to pump me with antibiotics. So I'm praying that it stays that way! However, at any time something could flare up.

Yesterday evening I read the following by Charles Spurgeon:

Anxiety does not empty tomorrow of its sorrows - only today of its strength.

And that's very true. There's no point in me worrying about getting an infection, because firstly, it might not happen (which would be a miracle!), secondly it only ruins the good days that you have! And the same goes for every other situation in life.

One final thing...

Many of you have asked how you can help. Well, this might not directly affect me but I rely very frequently on blood or platelet transfusions. There's a huge shortage of blood. I can't give blood anymore because of my illness etc. but many of you can! And there are thousands of people who would benefit from it! You literally would be saving lives! And I'm sure many of you already to donate blood and platelets, but if you don't then I'd encourage you do it! It has many positives. For example the sticker and the biscuits you receive at the end. And more importantly if you have an illness that will be picked up then too. The negatives? A tiny needle goes in your arm. I've have hundreds of them in me over this last month so just deal with it and man up! :D

Here's a link if you're interested:

http://www.blood.co.uk/
http://www.blood.co.uk/platelets/

Quick update

I had a blood test this morning and my neutrifils are down to 0. That's to be expected. In a few days they'll go back up - hopefully!
I'm no longer staying in the hospital either but in the hostel opposite. I need to go in twice a day for observations and a blood test and if I get any infections I'm back in the hospital with an antibiotic drip. But am praying that wont be the case this time! However, the nurses are expecting it.
Am reminded that anything could happen anytime.
For a now though I have a room to myself with a shared kitchen and bathroom.
Will update you when there's more interesting news!

A long awaited update!

I apologise for not updating this sooner! Over the last couple of days I tried to upload a video of me talking about the latest news but it failed to upload. I'll try again sometime.
So for a now it's back to writing.
I came out of hospital on Wednesday night, pretty late, after having my last syringe of chemo and a couple of bags of blood. I left the hospital with a neutrifil count of 1.1 and I needed to go back straight away when they were at 0.5 as I'd be neutropenic and prone to infection which I can't fight. (Neutrifils are pretty much the immune system, as I understand it anyway).
On Thursday I just relaxed and caught up on a couple of things and on Friday morning I needed to go to Colchester hospital for a blood test expecting to go back to Barts on Saturday. However, on Thursday night mum had the pleasure of giving me an injection to boost my white blood cells. It'd been 20 years since she'd last given an injection and I was seriously considering giving it myself, but I lacked a third hand to hold the skin on my arm. After a bit of sweating it was done and very well too! Far better than some of the nurses at the hospital in fact!
Back to the point - I was expecting my neutrifils to have dropped but they had risen to 5.5 meaning I could stay home until Sunday! The result of the injection!
In the evening I went over to Fellowship Afloat where I work (www.fact.org.uk ) and spent some time with the guys there.
On Saturday I had a lazy morning with the guys from FACT coming over in the afternoon which again was great fun.
This morning began with a fry-up - bacon, eggs, black pudding, sausages - the works! So I was set up for going back to hospital. I had a blood test when I arrived which revealed that my neutrifils were down to 0.6, but I was allowed to go back home for the night which I've done!
On arriving at home I gulped down some dinner and then hit the road again to go to church in Danbury where I again saw friends and had a good time!
I'm pretty tired now and am not looking forward to the next couple of weeks. I go back tomorrow morning and will be prone to infection. It's likely I'll have mucositis again but on the plus I'll be back on morphine! I had some very bizarre moments last time. More on that later!
Next month, if all goes to plan, I'll be on a powerboat course, so I have something to look forward to! (The doctors don't know yet but they'll be fine with it!)
It's been a long day and sleep is much needed!
Will keep you posted!
(Apologies for any spelling mistakes or grammatical error but I have no will power left to make me re-read what I've written! I'm sure you'll get the gist!)

Exploring Barts!

The last couple of days have been quite interesting! A bit of a roller-coaster! 

I was under the impression that this round of chemo wasn't going to be as bad as last time; however, it's hit me quite a bit harder. Or the contrast to coming into hospital well and now not feeling that great has taken its toll. 

For the first few days I was sick and exhausted, but now I'm feeling a bit better. Tiredness is the main enemy right now, but I've found out that short naps throughout the day are very helpful!

It's irritating to not be able to do the things I'd love to be doing right now! Seeing what my friends are up to highlights what I'm missing out on. But I know that if all goes to plan I can return to do those things shortly. 

Last night I was just dropping off when a doctor came into my room. Was slightly surprised and worried at first, especially when he told me there was an emergency situation! But it was to do with another patient and not me. That was very relieving but meant that I had to move to a different bed in another part of the hospital (my room was designed for patients prone to infections - which I am not right now). So at midnight they wheeled me over to the old building. I again had a side room and a nice view over the city! Just now they moved me again to a newer ward where I have a massive room all to myself. It's rather nice!

Am over half way through my chemo - have two more days left! And then I'll return home for a couple of days until my immune system drops to 0. Then it will be another two to three weeks in hospital where I wait for my cell count to go up and hope and pray that I don't get an infection! 

That's about it for a now. Am going to head off to sleep.

I've had a look at the stats from this blog and am very surprised to see the interest it's receiving from all around the world. 

I am so grateful for all your thoughts, messages, cards, emails and prayers!

I'm battling on with God's strength!

More potions...

Looks like I'm writing this now!
So I came back to hospital on Monday but only started chemo yesterday. It's been a bit of a rougher ride than last time. Have been feeling more sick and exhausted but towards the end of the day I've been feeling better again. I have three or four lots of chemo each day. I have my final dose for today in about 15 minutes. 
Today I saw the consultant, Dr. Smith who told me a bit more of where I'm at. I responded well to the first cycle of chemotherapy, however, just because they can't see any leukaemia cells in my bone marrow at the moment they know it's still there so the chemo I'm having at the moment is trying to get rid of as many of them as it can. This reduces the chance of a relapse in the future. If the treatment goes to plan (after either two more cycles of chemo or a bone marrow transplant) I should have a 25% chance of living a life without the risk of a relapse. Normally it would be a 50% chance but since I have what's called a FLT-3 mutation on my cells, a result of the leukaemia in its early stages, the likelihood is reduced by half. However, I'm still optimistic that I'm in that 25% chance, God willing! He doesn't do statistics. 
On Tuesday I was allowed out of my room and as well as having a coffee with mum and dad we went to a church service around the corner. The chorus of a hymn sung goes like this:


"Great is Thy faithfulness!" "Great is Thy faithfulness!"
  Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
    "Great is Thy faithfulness," Lord, unto me!


God is good. He is faithful to His Word and His goodness. Each morning I see new mercies poured out on me. God has provided all things I need to get through this time. In fact He's the only thing I need to get through this time and I'm learning that more and more each day.


Now, time for a bit of magic potion and sleeeeeeeep! Have a good night friends!


Matthew

Good morning!

Good morning! It's me (Matt) again. I'm in my hospital bed waiting for breakfast to come (if it will, as I didn't put my order in!) having had a good nights sleep.
Yesterday afternoon I arrived at the new ward I was to be in and was shown to my bed in a room with about three other guys. They all had their curtains drawn and nobody spoke. It was a bit depressing, so I went to see the doctor and ask about my bone marrow results! They showed me that I'm in remission! I have responded to the first load of chemotherapy as planned and right now I do not have any leukaemia in me! That's a great thought! Because I'm in remission I'm allowed to continue with treatment to reduce the likelihood of it returning. So today I begin cycle two of chemotherapy which apparently shouldn't be as bad as the first round, which I didn't find that bad in the first place. The nurses said that they've seen people being hit really hard by chemo, but I found it fine. That's an answer to prayer in itself.
So this is great news! But still only the beginning of a long journey.
After receiving the news we went out for dinner at pizza express opposite St. Paul's in Paternoster Square which was really nice. It saved me from a plate of whatever the hospital were gonna shove down my throat! Following that I decided to say 'hi' to the guys in the ward I was in previously. When I arrived they apologised that my bed wasn't ready yet. I told them I was just saying 'hi' and that I was in 4A. But they'd decided to bring me back, not only to my old ward, but to the side room I was in last time too! Pretty cool!
So things are going well! And God's at work in this whole situation!

Life's becoming a bit more normal!

Right! So I'm writing the blog today! (Matthew)
Coming back home has been great. Each day I have more strength to do things. On Sunday I went to the beach but barely had enough energy for five minutes down there. It was great to see some beauty rather than the cold, stone courtyard of a hospital.
On Monday I had a blood test in Colchester which was very positive. All my blood levels have gone up which seems to imply things are going to plan. Walking around the hospital was a good work out too!
Tuesday I visited Fellowship Afloat in Tollesbury where I work. It was great to see my second family, the people I live with, and to spend time as though I was back at work (only I didn't do any work. I just watched).
Today I've just been resting up and doing nothing. It's been a great few days but they've also been quite exhausting.
I'm eating better and am slowly putting on weight - definitely something to do with Mum's cooking. And I'm slowly starting to sleep better too.
Tomorrow I go back to Bart's for the day for a bone marrow biopsy. There they're going to find out how I responded to the first lot of chemo. Hopefully it'll put me into remission! A bone marrow biopsy consists of a long, thick needle being dug into my pelvis. Not a great experience and not something I'm looking forward to. But I need to get used to it as I'll have one a month for the next year.
But I'm in good spirits and God is good. His strength is what's keeping me going 100%. People say to me that I'm an inspiration because of how I'm coping, but I wouldn't be coping with this trial like this without God. All the glory goes to Him.

Thank you everyone for all your support, thoughts, prayers, messages and cards! You're all being hugely encouraging. I look forward to catching up with you all when this episode is over!

News flash

It's Gisa writing again.
We heard yesterday afternoon that Matt's immune system is such that he can go home!
So today we packed his bags and now he's back with us for a short while. :)
His next appointments are a blood test and his bone marrow biopsy next week.
His next chemo is supposed to start in just over a week.
That was the good news of the week.

The not so good news is that Anna's bone marrow is not compatible with Matt's.  :(
They are looking to see if they find a donor elsewhere in the donor bank.
That's all for now.

Have a great weekend!

Friday 7 January 2011

This time I, Gisa, am writing the update as Anna is busy with College, therefore no idea for a good heading.  :(

Matthew is recovering from his Chemo treatment as expected and the Doctors are pleased with him, especially now that he started eating again! :)
His weight had gone down to 59kg, but he's working on that.
The physio wasn't needed after all, which is good. Matt sits in his chair on a regular basis now.
He said "farewell" to his last hair yesterday.
The next big thing is his bone marrow biopsy towards the end of his stay in hospital, which will check if the chemo has actually worked.

Please check this blog again, on which Anna will update next time that there is something new to tell.

Thank you for your interest and support!

No hair but still Matt

Gisa