First night in hospital went ok. My brain didn't switch off completely when I went to sleep so it got trapped in 'thinking loops'. This happens to me when I'm under stress and my brain tries to solve abstract problems but gets confused. Still, I feel awake this morning when breakfast came.
I feel its important when I'm in here to develop a routine. I've never really had a routine other than 'work-drink-work-drink' and suspect this is an opportunity to create one. I frequently skipped breakfast when I was working and plan on specifically changing this and making breakfast the most important meal of my day (just as everybody says it should be!). Therefore, I purposefully ordered a huge breakfast consisting of the following:
1. 2 x fruit juices (tomato + cranberry)
2. weetabix
3. brown toast + marmite
4. a yogurt
5. a fruit salad
6. a cooked breakfast including sausages, scrambled eggs, baked beans and hash browns
Now amazingly, I was starving when I woke this morning and promptly finished this all off.
Had my second chemo this morning as well - just the cytarabine this time. Was uneventful and thankfully I haven't had any side effects yet so feel blessed and lucky. I've started 'touching wood' a lot and I notice that my general level of superstition rises. You feel compelled not to jinx the good positive things (like no side effects) by being complacent. Weird.
Other things in my routine are brushing my teeth after every meal (to avoid bacteria in the mouth which may speed up mucasitis) and peeing into a cardboard urinal so the nurses can add up how much water has come out of me. I also am urged to drink a _lot_ of water each day - at least 2.5 litres and I make a note of every drink that I consume. Of course, some of these things I don't intend to continue when I'm out of hospital!!
That's it for now, the rest of my day will largely be spent sitting or lying and watching TV or a DVD.....
(written retrospectively)
Saturday 28 November 2009
Friday 27 November 2009
Admitted and first chemo!
Just a quick post to say that I was admitted today. I have been blessed with a private room with:
a) TV
b) DVD Player
c) Computer + Webcam
d) Broadband Internet
e) Fridge
... everything I need! Actually I'm amazed with the facilities here. Having internet in my room will be a lifeline I suspect....
They had to put a semi-permanent line into my arm to allow them to take stuff out (eg blood) and put stuff in (eg chemo). This was a reasonably painless experience but psychologically its a bit freaky having a port hanging out of your arm. My arm's a bit sore, but it's not too bad.
They also took my blood and showed me how viscous it is - this is apparently due to all the bad ugly leukemia cells clogging up my blood. To be honest, this is also the first time that I genuinely admitted to myself that I have leukemia. Prior to that it was an invisible enemy that everyone said I had but for which I had seen no first-hand proof. In fact, just before I was admitted, I sat down with one of the doctors and asked him again whether he was 100% sure that I had leukemia and that it wasn't all a mistake. I suspect this kind of denial is common in this situation, but seeing how weird my blood tonight really made me a believer!
I also had my first round of chemo tonight. I am on a course called 'DA 10+3' which means I take Daunorubicin for 3 days and Cytarabine in parallel for 10 days. Daunorubicin comes in a big syringe and is bright red and is a bit off-putting as it is being administered into you. The problem is that they set up a saline IV drip and then push the Daurnorubicin (find it hard spelling this) into the saline flow to dilute it. The IV machine doesn't like this because if the pressure in the line gets too high it thinks it is blocked and shuts down. Therefore the machine keeps beeping alerts as it is administered and I get worried that undiluted Daurnorubicin is flowing into my body. As it happens, I have been told that this isn't really a problem anyway so not to worry about it. I'm being told not to worry about a lot of things and to be honest, I am doing my best not to do so.
I have no control here and I have to trust everything and everyone around me. Not used to that situation, but there is no value in worrying or stressing about a situation you cannot control.
I also learnt that 'having chemo' isn't that bad (as long as you don't have an infusion or allergic reaction which I fortunately didn't). At least in my case it was ok - the IV push feels a bit cold for both the chemos, but I didn't feel anything. The cytarabine is a clear liquid that might as well have been saline to me. So getting chemo isn't bad. Instead, its the side-effects that follow administration of chemo and the risk of infection during the your periods of low white blood count that make it difficult (apparently 90% of patients will get an infection on each round of chemo).
So ... fingers crossed I don't have too bad side effects and that I have minimal infections!
(Written retrospectively)
a) TV
b) DVD Player
c) Computer + Webcam
d) Broadband Internet
e) Fridge
... everything I need! Actually I'm amazed with the facilities here. Having internet in my room will be a lifeline I suspect....
They had to put a semi-permanent line into my arm to allow them to take stuff out (eg blood) and put stuff in (eg chemo). This was a reasonably painless experience but psychologically its a bit freaky having a port hanging out of your arm. My arm's a bit sore, but it's not too bad.
They also took my blood and showed me how viscous it is - this is apparently due to all the bad ugly leukemia cells clogging up my blood. To be honest, this is also the first time that I genuinely admitted to myself that I have leukemia. Prior to that it was an invisible enemy that everyone said I had but for which I had seen no first-hand proof. In fact, just before I was admitted, I sat down with one of the doctors and asked him again whether he was 100% sure that I had leukemia and that it wasn't all a mistake. I suspect this kind of denial is common in this situation, but seeing how weird my blood tonight really made me a believer!
I also had my first round of chemo tonight. I am on a course called 'DA 10+3' which means I take Daunorubicin for 3 days and Cytarabine in parallel for 10 days. Daunorubicin comes in a big syringe and is bright red and is a bit off-putting as it is being administered into you. The problem is that they set up a saline IV drip and then push the Daurnorubicin (find it hard spelling this) into the saline flow to dilute it. The IV machine doesn't like this because if the pressure in the line gets too high it thinks it is blocked and shuts down. Therefore the machine keeps beeping alerts as it is administered and I get worried that undiluted Daurnorubicin is flowing into my body. As it happens, I have been told that this isn't really a problem anyway so not to worry about it. I'm being told not to worry about a lot of things and to be honest, I am doing my best not to do so.
I have no control here and I have to trust everything and everyone around me. Not used to that situation, but there is no value in worrying or stressing about a situation you cannot control.
I also learnt that 'having chemo' isn't that bad (as long as you don't have an infusion or allergic reaction which I fortunately didn't). At least in my case it was ok - the IV push feels a bit cold for both the chemos, but I didn't feel anything. The cytarabine is a clear liquid that might as well have been saline to me. So getting chemo isn't bad. Instead, its the side-effects that follow administration of chemo and the risk of infection during the your periods of low white blood count that make it difficult (apparently 90% of patients will get an infection on each round of chemo).
So ... fingers crossed I don't have too bad side effects and that I have minimal infections!
(Written retrospectively)
Thursday 26 November 2009
Decisions
So I've made some decisions ....
First of all - I want to try any drugs that my consultants consider have benefits that outweigh risks. I don't like talking numbers, but the Consultant at Hillingdon commented that 45% of people in my age group (20-61 I think) survive AML for 5 years, at which point they are considered cured. This means that anything that increases this number is worth it unless the side effects increase my risk of death.
Second of all - I'll use my work health insurance and go private as (a) this is what insurance is for (b) it will guarantee me a private room, which is nice if I'm going to spend 3 months in hospital and (c) I can always move back to NHS if needed.
In terms of a hospital, I was initially very keen to stay with Hillingdon hospital as the staff and Consultants had been so good to me. However, now I have decided to go to the Royal Marsden which is both an NHS and Private hospital and is recognised to be one of the top cancer hospitals in the UK. They have accepted me which is great news and I'm due to be admitted tomorrow afternoon! I'm very eager now to get treatment started so I get through the chemo.... no point delaying and every day I am told my white blood count is increasing with bad leukemia cells!
(written retrospectively)
First of all - I want to try any drugs that my consultants consider have benefits that outweigh risks. I don't like talking numbers, but the Consultant at Hillingdon commented that 45% of people in my age group (20-61 I think) survive AML for 5 years, at which point they are considered cured. This means that anything that increases this number is worth it unless the side effects increase my risk of death.
Second of all - I'll use my work health insurance and go private as (a) this is what insurance is for (b) it will guarantee me a private room, which is nice if I'm going to spend 3 months in hospital and (c) I can always move back to NHS if needed.
In terms of a hospital, I was initially very keen to stay with Hillingdon hospital as the staff and Consultants had been so good to me. However, now I have decided to go to the Royal Marsden which is both an NHS and Private hospital and is recognised to be one of the top cancer hospitals in the UK. They have accepted me which is great news and I'm due to be admitted tomorrow afternoon! I'm very eager now to get treatment started so I get through the chemo.... no point delaying and every day I am told my white blood count is increasing with bad leukemia cells!
(written retrospectively)
Monday 23 November 2009
It's AML
I spent the weekend in Durham with close friends and did everything in my power to forget the unknown. The fact was that I knew nothing - they had done some tests and there was a chance I had something nasty, but ... I knew nothing. Therefore there was no point worrying about it. That was the idea anyway..... I did reasonably well until I kept feeling the soreness of where the bone marrow biopsy was done. That brought it back until I calmed myself down.
But it is Tuesday today and I had an appointment with Hillingdon for the results of the biopsy. As soon as I arrived, I met some of the nurses I had met during the tests and everyone and everything felt very familiar. They did another blood test and then I went to see the Haemotologist Consultant with my parents.
"You have AML". I heard the words and remained calm. I don't know why I was calm. Shock probably. However, in a way it was what I suspected and it was just a play playing out in mind for which I already, somehow, knew the plot. The Consultant explained up front that nowadays they aim for 'Cure' not just for treatment but was honest about the prognosis. The words "this is a life changing event" rung in my ears....
Those who know me well know that I use planning and process to reduce stress and solve problems. Therefore we jumped straight into planning mode to put a structure around the next days and steps and to stop me concentrating on this 'life changing event'.
Weird thing was that I still felt absolutely fine. It was only when I was in Durham that I felt some breathlessness and I'm pretty sure that was largely psychosomatic. It's hard to accept you have something really really wrong with you when you feel ok. There are a lot of leap of faiths ahead, I guess.
The Consultant explained that there is a trial started for AML sufferers which is looking at 'cutting-edge' treatments - AML-17. AML-17 offers the current Gold Standard chemotherapy regimes but adds in a couple of new drugs (in my case, Mylotarg and an m-TOR inhibitor) for some patients to understand the effectiveness of these new drugs.
Therefore, two big decisions to come - do I go on the trial and potentially get the new drugs (eg 80% of trial participants will get Mylotarg) and do I go private or stay with the NHS?
In either case, I've been told I will need 4 rounds of chemotherapy that will take 4-6 months of mainly hospital time and that I shouldn't go back to work this week due to the risk of picking up an infection on the tube or in the office. Chemotherapy aims to kill fast multiplying white blood cells, such as leukemia cells. Unfortunately it also kills normal white blood cells, red cells and platelets (i.e. pretty much everthing). Each round of chemo takes about 1-1.5 weeks to administer, then a week whilst my counts continue to drop. Finally, my counts should start to improve and when my white blood count gets to a survivable amount, I can leave the hospital for a break before coming back in for the next round.
4 months seems like a long time .... can't really get my head around that right now....
(written retrospectively)
But it is Tuesday today and I had an appointment with Hillingdon for the results of the biopsy. As soon as I arrived, I met some of the nurses I had met during the tests and everyone and everything felt very familiar. They did another blood test and then I went to see the Haemotologist Consultant with my parents.
"You have AML". I heard the words and remained calm. I don't know why I was calm. Shock probably. However, in a way it was what I suspected and it was just a play playing out in mind for which I already, somehow, knew the plot. The Consultant explained up front that nowadays they aim for 'Cure' not just for treatment but was honest about the prognosis. The words "this is a life changing event" rung in my ears....
Those who know me well know that I use planning and process to reduce stress and solve problems. Therefore we jumped straight into planning mode to put a structure around the next days and steps and to stop me concentrating on this 'life changing event'.
Weird thing was that I still felt absolutely fine. It was only when I was in Durham that I felt some breathlessness and I'm pretty sure that was largely psychosomatic. It's hard to accept you have something really really wrong with you when you feel ok. There are a lot of leap of faiths ahead, I guess.
The Consultant explained that there is a trial started for AML sufferers which is looking at 'cutting-edge' treatments - AML-17. AML-17 offers the current Gold Standard chemotherapy regimes but adds in a couple of new drugs (in my case, Mylotarg and an m-TOR inhibitor) for some patients to understand the effectiveness of these new drugs.
Therefore, two big decisions to come - do I go on the trial and potentially get the new drugs (eg 80% of trial participants will get Mylotarg) and do I go private or stay with the NHS?
In either case, I've been told I will need 4 rounds of chemotherapy that will take 4-6 months of mainly hospital time and that I shouldn't go back to work this week due to the risk of picking up an infection on the tube or in the office. Chemotherapy aims to kill fast multiplying white blood cells, such as leukemia cells. Unfortunately it also kills normal white blood cells, red cells and platelets (i.e. pretty much everthing). Each round of chemo takes about 1-1.5 weeks to administer, then a week whilst my counts continue to drop. Finally, my counts should start to improve and when my white blood count gets to a survivable amount, I can leave the hospital for a break before coming back in for the next round.
4 months seems like a long time .... can't really get my head around that right now....
(written retrospectively)
Friday 20 November 2009
You need to come for further tests!
"You need to come in for more further tests asap, i.e. tonight" These are words you never want to hear. I was at work last night when the call came. I had been for a routine blood test a week or so ago and had already been called back to the GP yesterday morning for a repeat full blood count (FBC).
So when I got the call from the GP, it meant to me that they had confirmed something was wrong with my blood. The GP told me to go as soon as I could to the A&E department of the hospital and ask for the haematology department where a Doctor was waiting for me. I couldn't understand the urgency of the request - just last week I had been running round London at 3am singing karaoke and feeling on top of the world!
When I got to A&E around 8pm that night, of course, they had never heard of me and started to put me through the standard A&E process of initial triaging (Them: "What's wrong with you?" Me: "Nothing that I know of, but you're expecting me" Them: "No we're not") then eventually being seen by a doctor. They repeated the blood tests again and found elevated white blood counts. Around 1am last night they also realised that I was meant to have been sent to a different hospital but the GP hadn't relayed that message.
So now I knew I had elevated white counts and that I had to go to Hillingdon hospital the next day. A quick google later and I was an armchair expert in all the various diseases and other causes of these symptoms. Not great reading!
So this morning, filled with denial-optimism that it was all a mistake, I went to Hillingdon hospital where they rapidly did a large array of blood tests and an urgent bone marrow biopsy / aspirate. The urgency once again unsettled me, but the nurses explained that they wanted to get the samples off to Kings in the afternoon and therefore needed to hit the 12:00 courier.
For those who are lucky enough not to know, a bone marrow biopsy involves inserting a needle directly into the bone and extracting a sample of the bone marrow and bone marrow fluid. It hurts. A lot. I'm not ashamed to say that when it was done I had a panic attack and started hyperventilating. The staff were remarkably good though at (a) getting it over with quickly and (b) calming me down so - THANK YOU!
After a recovery period, I met with the doctors - they didn't give anything away, but from my reading and the tests they performed, I suspect they thought it was AML - Acute Myeloid Leukemia... my next meeting is set for next Tuesday when the results of the biopsy will be ready.
(written retrospectively)
So when I got the call from the GP, it meant to me that they had confirmed something was wrong with my blood. The GP told me to go as soon as I could to the A&E department of the hospital and ask for the haematology department where a Doctor was waiting for me. I couldn't understand the urgency of the request - just last week I had been running round London at 3am singing karaoke and feeling on top of the world!
When I got to A&E around 8pm that night, of course, they had never heard of me and started to put me through the standard A&E process of initial triaging (Them: "What's wrong with you?" Me: "Nothing that I know of, but you're expecting me" Them: "No we're not") then eventually being seen by a doctor. They repeated the blood tests again and found elevated white blood counts. Around 1am last night they also realised that I was meant to have been sent to a different hospital but the GP hadn't relayed that message.
So now I knew I had elevated white counts and that I had to go to Hillingdon hospital the next day. A quick google later and I was an armchair expert in all the various diseases and other causes of these symptoms. Not great reading!
So this morning, filled with denial-optimism that it was all a mistake, I went to Hillingdon hospital where they rapidly did a large array of blood tests and an urgent bone marrow biopsy / aspirate. The urgency once again unsettled me, but the nurses explained that they wanted to get the samples off to Kings in the afternoon and therefore needed to hit the 12:00 courier.
For those who are lucky enough not to know, a bone marrow biopsy involves inserting a needle directly into the bone and extracting a sample of the bone marrow and bone marrow fluid. It hurts. A lot. I'm not ashamed to say that when it was done I had a panic attack and started hyperventilating. The staff were remarkably good though at (a) getting it over with quickly and (b) calming me down so - THANK YOU!
After a recovery period, I met with the doctors - they didn't give anything away, but from my reading and the tests they performed, I suspect they thought it was AML - Acute Myeloid Leukemia... my next meeting is set for next Tuesday when the results of the biopsy will be ready.
(written retrospectively)
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