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!
Thursday 24 February 2011
Thursday 17 February 2011
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!
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!
Thursday 10 February 2011
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!
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!
Sunday 6 February 2011
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!
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!
Thursday 3 February 2011
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:
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/
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/
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