Monday, 27 April 2009

Phase 2 - hmmm...

Phase 2 induction started last Tuesday. It's 4 days a week (Tuesday - Friday) over at the Churchill for 4 weeks and the main reason for it is to try and reduce further the presence of the leukaemia; remission doesn't mean it's gone "just" that normal cell production has resumed but the leukaemia has to be kept in check and that's the point of this consolidation.

Treatment is notionally straightforward:
  • Cyclophosphamide - intravenous, fortunately only 3 times (every other week) as this one seems to really make me sick. Oh yeah and it's trying to knock out the remaining strands of hair I have...
  • Cytosine arabinoside - intravenous, each day whilst at the hospital. On me seems to be causing a low-level nausea that anti-emetics like Ondansetron look to be controlling
  • Mercaptopurine - tablets I take every night, seem to be OK on these
  • Intra-thecal - every Wednesday :-(
Plus of course continuing with the tablets I was on before.

As mentioned, the Cyclophosphamide (at least I think it's that) seems to be really affecting me - not just nausea but vomiting and vertigo too (I learned that vertigo isn't actually anything specifically to do with heights but the general sensation of dizziness and head spins).

We're not quite sure what's causing it - I'm still suffering even tonight but far more manageable than when I was literally falling over from it.

Anyways - felt a bit better yesterday (Sunday) and today but not 100%. Hoping that this week is easier.

Apologies then that I've been out of touch but it was only yesterday that I fired up any form of computer as to be honest I've been lying down and sleeping as much as possible which I'm sure you understand!

As it all starts again tomorrow - I may not be online too much until the weekend again.

Okay - so where've you been???

Well, I wish I could say I've been living the high life on a sunny beach eating Sausage & Egg McMuffins but alas no.

Looking back on the blog I've realised that quite a lot looks to be missing from my final week before Phase 2, so in a nutshell - the transfusion went well (3 bags to increase haemoglobin counts), I stopped being neutropenic so was able to go out to Pizza Express for lunch with Sarah (which was wonderful) on the Thursday afterwards and spent the weekend helping out around the home, cooking etc.

I did have to take it easy though as I noticed my feet swelling up something awful and the hospital instructed me to literally put my feet up - the cause for the fluid retention still isn't known for sure but it could be a side effect of the Imatinib I'm taking.

Need to take a break now to help Sarah with some household computing/accounts but will blog later the joy of Phase 2 so far :-(

Thursday, 16 April 2009

A stitch in time...

God moves in mysterious ways...

Something I didn't mention in my update about Monday was that when they told me my blood count levels, I questioned how the haemoglobin could have gone down so much when the other numbers seemed stable. The doctor agreed and checked the system and suggested a re-check, requiring more blood to be taken.

At this point I had been transferred to the Medical Assessment ward.

She was not familiar with drawing blood from my Hickman line and I refused to let her draw blood using a needle (you know I hate them, I was tired and annoyed from all the waiting and frankly didn't see why I had to go through that when the central line was there for that very purpose).

Anyway, Sarah mentioned to the doctor that someone from A&E (where we were initially admitted) may be able to do it as they had done the initial blood drawing. The doctor must have misheard because we had a nurse from Ward 5E (the cancer ward where I was an in-patient previously) come down and do the procedure in a matter of minutes.

Where am I going with this??? We took the opportunity to ask the nurse to check the line as where the tube comes out of my chest was still a bit red and was causing some slight discomfort - she had a look and noticed/hypothesised that a stitch was actually still there...

Any hoo - when I had the transfusion yesterday we asked the nurse they to double check - lo & behold there were some stitch remnants still there.

So double good news from the Monday night debacle:
  1. A top-up has given me more energy for a great day today, hopefully for the boys return tomorrow and for Phase 2 next week
  2. My Hickman line should heal properly now and if the stitch had stayed any longer there was a risk the skin would have covered it completely and made life difficult later
So as my Dad commented on my previous update, there seemed to be a reason for Monday night after all!

Tuesday, 14 April 2009

37.5 and rising...

Because of my neutropenic condition, when I was discharged from Ward 5E I was told to get in touch with them if my temperature hits 37.5 Celsius.

Whilst 37.5 is normal for most, my reduced immune system makes this a trigger point temperature whereby precautionary measures are taken to ensure I don't go critical through infection.

Anyway, yesterday (Easter Monday) I noticed my temperature rising to the highest it's been for a while - taking my temperature at regular intervals in the day is second nature to me now - and I hit 37.52 around 18:30.

Phoning Ward 5E, despite me feeling fine, after they consulted they rang back and wanted me to come in. No beds so they said I had to go to John Radcliffe A&E.

By the time Sarah & I had packed (fortunately the boys had gone to their grandparents earlier in the day which was planned anyway) and got to JR, it was about 21:20.

It was all a bit of a disaster and in the end we effectively discharged ourselves at 5am this (Tuesday) morning as temperature came back down of its own accord and everything else seemed in order.

However, it did yield that my blood count was low (haemoglobin) so I need to go in for a transfusion at the Churchill tomorrow (Wednesday) - it will likely take the better part of the day.

So a bit frustrated as the Monday night thing was a stressful nightmare and my treatment free week now means a second trip to Oxford as well as missing a lot of today owing to catching up with sleep this morning - very lucky we didn't have to take care of the boys!!

Being positive about it though, the transfusion should make me feel a bit stronger for the remainder of the week and should stand me in better stead for Phase 2 Induction next week.

Well it's 23:57 (& 36.99 Celsius) & time for me to turn in before my eyes fall out of my head!

Thursday, 9 April 2009

Remission Accomplished...

Some great news ahead of the Easter break - yesterday I was over at The Churchill for bloods to be taken and also a bone marrow sample to check progress.

Blood numbers have been trending in the right direction for a while and a bit earlier today we got the call from the hospital indicating that under the microscope they cannot see the leukaemia cells and that I am in remission.

Naturally I'm not out of the woods yet, it will be a couple of weeks yet before we know whether the Philadelphia chromosome condition is under control.

Going forward, next week is a clear week but the week after that will be the start of Phase 2 Induction - quite intense as it's 4 days a week at the hospital for chemo, I'll blog more when I've looked into it!

In the meantime the quest for a bone marrow donor continues as does the investigation into other avenues now such as stem cells from umbilical cord blood.

Anyways that's a subject for another post, I'm still a little zoned out from yesterday's sedation & procedures but wishing you all a happy Easter!

Tuesday, 7 April 2009

12 minutes of fame...

Didn't quite make the Andy Warhol 15 minutes mark but certainly the past few days have seen quite a bit of media attention.

Firstly, I'd like to thank and acknowledge Catherine Osborn who has been absolutely brilliant in getting the bone marrow donor search story out there - the BBC, local paper and even the Mauritian Broadcasting Company amongst others have been contacted or have been in contact. Any and everything helps with trying to find that elusive match but even if I am not lucky hopefully the publicity has spurred more people to join their register which will prove life saving for someone else.

Catherine has been the main consistent driver throughout all of this but many many other people have been getting the word out too through their friend, family & work networks too and I am extraordinarily grateful for this too - thank-you as well!

So, last Thursday I had the Maidenhead Advertiser come round in the morning for some pictures for the paper (will be in the actual paper this Thursday I believe) and also to do an interview for the web. I look fab (not!) but the interview went well, allowed me to get some things off of my chest and was actually a bit emotional for me at the end with some quite incisive questions. Anyway, judge for yourself:
Yesterday, blimey feels longer than that, I did a live interview for BBC Radio Berkshire. For a while I was on the BBC Berkshire website front-page but no more however the web piece that was done can still be found as well as a "listen again" of the interview:

That was the week that was

So before it's too far a distant memory, an update on last week...

Treatment was meant to be pretty light with just Monday, Wednesday & Friday Caspofungin drips (Asparaginase jabs Monday too) planned and in theory should have been just "in & out".

Monday though proved to be quite a long day - had the jabs and the drip but a side effect of the Asparaginase is it reduces the clotting factor in the blood hence I had to have an infusion of FFP which took time as it requires ordering, thawing and of course administration. Coupled with a later than planned start anyway - it wasn't until about 18:00 that I was settled back at home and pretty tired. The upside was I was able to spend quite a bit of time with my Dad before he flew out to Mauritius.

Wednesday was quick but unfortunately accelerated owing to the news whilst we were in the hospital that Luke gashed his head at nursery and that they were taking him to hospital. Fortunately I had nearly finished with the Caspofungin, so whilst Sarah and I were both shaken up by the news we were at least able to call around for help and actually head back almost immediately. Fortunately things had sorted out by the time we got back without him having to go to Wycombe hospital (the original plan) however St. Marks did insist he got checked out at Wexham Park.
Sarah dropped me off at home as things didn't seem as drastic with Luke, plus it would be a long wait and more significantly we both thought it would be better to avoid another hospital (infection risk). Luke came home later - OK all things considered and fortunately they were able to use a bunch of steristrips rather than stitches. The strips will come off this Wednesday, we've been keeping his head dry in the interim...

Friday was a quick day thank goodness but the steroid tapering was really having an impact on me by then and to be honest it's only today that I've felt like "working" - the good news on Friday was that I was given this current week as a "week off". Except Wednesday (tomorrow) where it is planned to take a bone marrow sample to see where I am.

So that's last week - not much to blog for this week as it's supposed to be a quiet one but likely to be significant if the bone marrow analysis is finished ahead of the Easter weekend...

Monday, 6 April 2009

Apologies for the lack of updates

Just wanted to blog a quick update about the lack of updates - steroid withdrawal (I'm assuming it is this that's causing it) is really knocking me out. I'm not sleeping well at night and find it difficult to sleep during the day, consequently I'm pretty tired and feel spaced out a lot.

As well I'm feeling quite sick - either bloated sick, hungry sick, tired sick or some combination...

Have been feeling a bit low (physically) then and not really up to social networking duties! Plus to be honest when I have had sessions of feeling bright & with it, I've elected to spend time with family and/or sit outside to enjoy the time I have to myself.

Will definitely start catching up soon though - hope you understand!