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...