Apologies to anyone who got a blog update suggesting I was back ill again... It appears as if last year in hospital I posted an update with a 2010 date instead of a 2009 one.... I blame the chemo (or just my general stupidity).... Anyway... Sorry!
Anyway just to let you know that one year on, everything is still fine... Last blood results a couple of months ago wre normal and am due another set of tests in January.
Am back to work full time, although am now taking advantage of all the holiday I accrued earlier in the year...!
In wish you all a merry Christmas and a happy New Year!
Ed
Friday 17 December 2010
Friday 7 May 2010
Latest bone marrow results
Just a very quick update to let you know that my latest bone marrow results were all good - I'm still MRD (minimum residual disease) negative which means I'm still in remission!
I am still at home waiting for my red and white blood cell counts to fully recover which the doctors say may take another month or so. During this time, I'll be going for bi-weekly blood tests to check for abnormally high blasts returning - fingers crossed they don't!
I am still at home waiting for my red and white blood cell counts to fully recover which the doctors say may take another month or so. During this time, I'll be going for bi-weekly blood tests to check for abnormally high blasts returning - fingers crossed they don't!
Monday 19 April 2010
Finished!
I 'checked out' of hospital last Wednesday night after my white blood counts reached 1.4, a sufficiently high level to allow me to leave the protective environment of the ward.
This is a great milestone in the treatment as it is hopefully the last time I am admitted to hospital - touch wood and all that again! Also, I convinced them to take my PICC line out - the tube that has been in one of my veins for the past 4.5 months and allows them to take blood out and pump chemicals in more easily. This has cheered me up immeasurably as I am now free and starting to feel a bit more normal. I can also take showers without having to wrap my arm in cling-film.
Have been at my family home for the past days and feeling reasonably ok. Getting tired very quickly which is to be expected for the foreseeable future and finding it difficult to concentrate on anything much. Have also got a bit of a cold which my white cells are fighting reasonably well, but combined with a low platelet count have resulted in some nose bleeds over the last couple of days. Yesterday's was quite bad so I went back to hospital for the afternoon to get some more platelets. Because my PICC line is now out, they had to put a temporary line in called a canulla; my veins aren't as good as they used to be so it took them 5 attempts to get it in and now I am left with 5 very unattractive bruises on both my arms. Oh well.
Back in hospital again this morning for routine blood test and to see the consultants. All going ok - counts are rising as they should and they are happy with my progress. Was reminded that my prognosis is still good, but only 50:50 which is what I knew already but always humbling to be reminded of it. If I do relapse then I will go down the bone marrow transplant route to offer me another chance.... let's hope it doesn't come to that!
On a brighter note, still feeling good in myself - am so pleased that I don't have any nausea or sickness like I did the last time I left hospital. This means that I'm eating very well, putting weight back on fast and slowly trying to return back to normal.
I have another bone marrow biopsy next Monday which will (a) hurt like hell and (b) check whether they can detect any cancer cells. Wish me luck!!
This is a great milestone in the treatment as it is hopefully the last time I am admitted to hospital - touch wood and all that again! Also, I convinced them to take my PICC line out - the tube that has been in one of my veins for the past 4.5 months and allows them to take blood out and pump chemicals in more easily. This has cheered me up immeasurably as I am now free and starting to feel a bit more normal. I can also take showers without having to wrap my arm in cling-film.
Have been at my family home for the past days and feeling reasonably ok. Getting tired very quickly which is to be expected for the foreseeable future and finding it difficult to concentrate on anything much. Have also got a bit of a cold which my white cells are fighting reasonably well, but combined with a low platelet count have resulted in some nose bleeds over the last couple of days. Yesterday's was quite bad so I went back to hospital for the afternoon to get some more platelets. Because my PICC line is now out, they had to put a temporary line in called a canulla; my veins aren't as good as they used to be so it took them 5 attempts to get it in and now I am left with 5 very unattractive bruises on both my arms. Oh well.
Back in hospital again this morning for routine blood test and to see the consultants. All going ok - counts are rising as they should and they are happy with my progress. Was reminded that my prognosis is still good, but only 50:50 which is what I knew already but always humbling to be reminded of it. If I do relapse then I will go down the bone marrow transplant route to offer me another chance.... let's hope it doesn't come to that!
On a brighter note, still feeling good in myself - am so pleased that I don't have any nausea or sickness like I did the last time I left hospital. This means that I'm eating very well, putting weight back on fast and slowly trying to return back to normal.
I have another bone marrow biopsy next Monday which will (a) hurt like hell and (b) check whether they can detect any cancer cells. Wish me luck!!
Thursday 8 April 2010
Sprint to the finish
I came back in hospital on Tuesday morning feeling exhausted which I put down to a low haemoglobin count. However, when my blood results came back I was already seriously neutropenic - 0.3; a drop from 10 just a couple of days before. My haemoglobin and platelets were also low.
Therefore, was rushed some units of blood and have gone back into 'neutropenic' living, where I go overboard to try and avoid picking up an infection.
Yesterday was a very difficult day due to a pain in a place most people don't want to know about. The Docs tried to give some pain control but nothing worked. Happily today it is a bit better, however, am still in some constant pain during the day. Hope this doesn't last too long as yesterday was pure agony.
I also spiked a temperature last night, so the usual hospital process kicked in - blood tests, urine tests, immediate antibiotics, etc. Temperature back to normal today so hopefully beat that one just as it started. Antibiotics will continue for a while still.
White blood count is 0.2 today; I'll be a very happy man when they start to rise as this will be the beginning of the recovery.
Therefore, was rushed some units of blood and have gone back into 'neutropenic' living, where I go overboard to try and avoid picking up an infection.
Yesterday was a very difficult day due to a pain in a place most people don't want to know about. The Docs tried to give some pain control but nothing worked. Happily today it is a bit better, however, am still in some constant pain during the day. Hope this doesn't last too long as yesterday was pure agony.
I also spiked a temperature last night, so the usual hospital process kicked in - blood tests, urine tests, immediate antibiotics, etc. Temperature back to normal today so hopefully beat that one just as it started. Antibiotics will continue for a while still.
White blood count is 0.2 today; I'll be a very happy man when they start to rise as this will be the beginning of the recovery.
Saturday 3 April 2010
Home for good behaviour!
Quick update - so far all is going well - no significant side effects and last night was my last dose of chemo - hopefully last EVER dose of chemo, assuming everything stays in check! Feeling pretty positive about that after 4 rounds over 4 months of chemo.... :)
Moreover, I have actually been allowed out of hospital for a couple of days as my white counts are still high and the Docs think it will be a few days still before the start to drop as a result of the chemo.
Therefore current plan is to go back to hospital on Tuesday morning at which point I'll spend another two weeks waiting for the counts to go down and up again!
All good so far!
Moreover, I have actually been allowed out of hospital for a couple of days as my white counts are still high and the Docs think it will be a few days still before the start to drop as a result of the chemo.
Therefore current plan is to go back to hospital on Tuesday morning at which point I'll spend another two weeks waiting for the counts to go down and up again!
All good so far!
Tuesday 30 March 2010
This could be it!
I came back into hospital yesterday after just over 3 weeks recovering at home. I'm back in a shared bay for the moment, but it's not very busy and the other "in-mates" appear very friendly. We all have different conditions which means it is genuinely interesting to hear each other's experiences without drawing too many comparisons to your own.
I was originally due to go back in a week ago, however, at the last minute it was delayed a week to give me another week to recover. In retrospect, I'm pretty glad that decision was made as I was about 70% recovered last week but feel more 90% this week. My only remaining symptoms are tiredness, dry feet and numbness in half my right hand. I suspect these three will continue for a while, so don't feel uncomfortable starting chemo with them.
The extra week also allowed me to eat some more as I had had some difficulty in the first week coming out from hospital. Everybody still says I look way thinner than I did (and BTW have virtually totally lost all my hair), but looking at the scales, I'm only a kilo or two off my original weight so am happy about that. Besides, if the nausea and sickness don't hit, I'll be back on the cooked breakfasts for a while :-)
In theory this will be the final round, so long as I don't relapse - fingers crossed, touch wood and all that. This round is called MidAC and, for those who are interested in the detail, consists of:
1. Mitoxantrone - given intravenously as an injection once a day for five days - A DRUG I HAVEN'T HAD BEFORE AND IS A FREAKY BRIGHT BLUE!! Here's a picture of me getting it:
2. Cytarabine - given intravenously as a two hour infusion twice a day for three days - A drug that I have had at various concentrations on each round to date.
Before you start your chemo you have to sign a consent form which highlights the side effects. The list is always the same, and the form gives no indication of how likely you are to get any particular symptom. However, everybody has assured me that this round is much easier than the previous round (called MACE).
What concerns me is that the Cytarabine in this round is 10 TIMES as strong as rounds 1 and 2, and 5 TIMES as strong as in MACE. When I questioned this to the Docs, I got a kind of unclear - "well, in spite of this we tend to find MidAC better tolerated than MACE" .... comforting indeed.
I'm left in pretty high spirits considering - can't get too worried about this stuff as I have no control in it and there are no other conceivable options, so lets just play it out. I'm also very much strengthened by the thought that this could/should be the last round - so 3-4 weeks in hospital then its done.
I'm currently having my 'day 2' of chemo injected and so far so good, no side effects to speak of, so hope this maintains during the rest of the course...
Thanks, as always, for all your support - your emails, texts, skype messages are very much appreciated - I may not always reply promptly, but be assured that I am reading them and will try to write to you over the coming weeks.
Love to all,
Ed
I was originally due to go back in a week ago, however, at the last minute it was delayed a week to give me another week to recover. In retrospect, I'm pretty glad that decision was made as I was about 70% recovered last week but feel more 90% this week. My only remaining symptoms are tiredness, dry feet and numbness in half my right hand. I suspect these three will continue for a while, so don't feel uncomfortable starting chemo with them.
The extra week also allowed me to eat some more as I had had some difficulty in the first week coming out from hospital. Everybody still says I look way thinner than I did (and BTW have virtually totally lost all my hair), but looking at the scales, I'm only a kilo or two off my original weight so am happy about that. Besides, if the nausea and sickness don't hit, I'll be back on the cooked breakfasts for a while :-)
In theory this will be the final round, so long as I don't relapse - fingers crossed, touch wood and all that. This round is called MidAC and, for those who are interested in the detail, consists of:
1. Mitoxantrone - given intravenously as an injection once a day for five days - A DRUG I HAVEN'T HAD BEFORE AND IS A FREAKY BRIGHT BLUE!! Here's a picture of me getting it:
2. Cytarabine - given intravenously as a two hour infusion twice a day for three days - A drug that I have had at various concentrations on each round to date.
Before you start your chemo you have to sign a consent form which highlights the side effects. The list is always the same, and the form gives no indication of how likely you are to get any particular symptom. However, everybody has assured me that this round is much easier than the previous round (called MACE).
What concerns me is that the Cytarabine in this round is 10 TIMES as strong as rounds 1 and 2, and 5 TIMES as strong as in MACE. When I questioned this to the Docs, I got a kind of unclear - "well, in spite of this we tend to find MidAC better tolerated than MACE" .... comforting indeed.
I'm left in pretty high spirits considering - can't get too worried about this stuff as I have no control in it and there are no other conceivable options, so lets just play it out. I'm also very much strengthened by the thought that this could/should be the last round - so 3-4 weeks in hospital then its done.
I'm currently having my 'day 2' of chemo injected and so far so good, no side effects to speak of, so hope this maintains during the rest of the course...
Thanks, as always, for all your support - your emails, texts, skype messages are very much appreciated - I may not always reply promptly, but be assured that I am reading them and will try to write to you over the coming weeks.
Love to all,
Ed
Friday 12 March 2010
Back home
I'm now back home; left hospital last Thursday and have been a bit up and down since leaving. It's great to be home, and the memories of round 3 are beginning to fade but I'm still left with some side effects and am tasked with building my strength and increasing my weight before round four starts.
When I left hospital, I actually felt pretty good - a bit unstable on my legs, but good appetite and everything running properly. However, after the weekend, I've started to feeling quite bad nausea which has affected my diet. It's also becoming a challenge to swallow the 33 odd tablets I have to take each day.... urgh!!
The only other things that are affecting me are a bizarre numbness in my right hand and weak muscles in my legs. Strangely, I don't find walking or stairs that difficult, however just standing up (eg queueing at the pharmacy ;-) ) is incredibly painful; like you've run a marathon and lactic acid is burning through your muscles (obviously, I've never run a marathon, so I'm just guessing, but lactic acid burn is something I'm familiar with at school cross country runs!).
Guess it will take some time to get back to normal - visiting hospital twice a week for the usual blood tests and the docs are saying positive things, so just need to 'give it time'!!
When I left hospital, I actually felt pretty good - a bit unstable on my legs, but good appetite and everything running properly. However, after the weekend, I've started to feeling quite bad nausea which has affected my diet. It's also becoming a challenge to swallow the 33 odd tablets I have to take each day.... urgh!!
The only other things that are affecting me are a bizarre numbness in my right hand and weak muscles in my legs. Strangely, I don't find walking or stairs that difficult, however just standing up (eg queueing at the pharmacy ;-) ) is incredibly painful; like you've run a marathon and lactic acid is burning through your muscles (obviously, I've never run a marathon, so I'm just guessing, but lactic acid burn is something I'm familiar with at school cross country runs!).
Guess it will take some time to get back to normal - visiting hospital twice a week for the usual blood tests and the docs are saying positive things, so just need to 'give it time'!!
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