Blood test result was rather good today: neutraphils were 18! I needed only 1.0 to get home so that should do!
So am now home until monday. Then new treatment phase 3 will start sometime next week.
Arrived just in time to have a tea on the beach. Good wind and waves and not that cold, so hope the boys had a good one up the coast - I'd definitely have wanted to join in if i was allowed! No worries will start training in the summer.
Saturday 31 January 2009
Friday 30 January 2009
the waiting game
So this week has been a waiting game. Once the chemo was done, soaked in and then kicked back out by the kidneys, you wait to see what side effect treats are come along. You also wait for the white cells to fall out the bottom tank, and then for them to obediently return a good while later. Well they bottomed out very successfully by Tuesday - zero point zero. "you just can't get more zero than that man" would be a Spinal Tap style explanation of the enormity of their smallness! At the same time my platelets which had spectacularly soared to 617 last Friday had been shot down in flames to 16. So Tuesday night I had a platelet transfusion, a wee top up if you like, to keep enough corks in the bloodstream. I felt sorry for them, after they'd done such a grand job of catching up.
My mouth started breaking up again from Monday. I could feel the skin going from under the tongue and round the sides. Nothing like as severe as before, at least yet. You just don't know what to expect next with chemo side effects, which ones and exactly when, but you do know when they arrive.
I think one of the main effects this time is tiredness. Although I have been charging up the stairs for exercise this week. It is just so good not being attached ot the drip stand all day! So my stair challenge is from the basement to above ward 17, 5 stories! 3 times on Monday, two on Tuesday. Three again Wednesday, and thurs and once friday (kinda lost the ball today). Not much by normal standards but definitely all my body seems interested in.
Later Wednesday I was given 3 bags of blood, as red cells had now dropped to 76 (yes another armful!). That was enough to kick the platelets up to 38 and reds to 110, which is low but fine enough. I foolishly recorded a brief high temperature on weds. "Stupid boy!" in a Mannering voice i was thinking to myself, as i knew what was coming next: a plethora of blood tests and two sets of IV antibiotics, just in case. The temperature only lasted a couple of hours and have been fine since, dooh! Weds blood count: whites still zero, as expected. Docs recon this should be the worse week, but may not rise for a week or more.
So Thursday, fever calmed down, so back to old routine - up n down the stairs a few times, sleep, same old waiting game. However all was not the same, I did not realise until today (Friday) as i forgot to ask the docs, but bizarrely my white cells have started to recover! The total white count was up to 0.8 and neuts were 0.5. I was told this unexpected news on the ward round today and it is just brilliant. As if it continues, which we shall find out from the next blood test in the morning, it means two things: stage three of my therapy could possibly start by the end of next week, and, I could get another home pass!
Oh yes the other main thing I've been up to this week is trying to eat as much as possible! To anyone in a normal situation this must sound stupidly easy, but gaining weight after losing 16 pound in 12 days is proving to be harder than I expected. I think I have it cracked now, but it is a shame I am stuffing down anything (mainly hospital canteen provided) to put on weight and not even tasting it (my taste buds are very much dulled, with no salt whatsoever!). And yes those NHS sprouts still keep coming up high on the leader board of nice "tastes"!
So tomorrow hoping for an end to the antibiotics, and a very good blood test :)
My mouth started breaking up again from Monday. I could feel the skin going from under the tongue and round the sides. Nothing like as severe as before, at least yet. You just don't know what to expect next with chemo side effects, which ones and exactly when, but you do know when they arrive.
I think one of the main effects this time is tiredness. Although I have been charging up the stairs for exercise this week. It is just so good not being attached ot the drip stand all day! So my stair challenge is from the basement to above ward 17, 5 stories! 3 times on Monday, two on Tuesday. Three again Wednesday, and thurs and once friday (kinda lost the ball today). Not much by normal standards but definitely all my body seems interested in.
Later Wednesday I was given 3 bags of blood, as red cells had now dropped to 76 (yes another armful!). That was enough to kick the platelets up to 38 and reds to 110, which is low but fine enough. I foolishly recorded a brief high temperature on weds. "Stupid boy!" in a Mannering voice i was thinking to myself, as i knew what was coming next: a plethora of blood tests and two sets of IV antibiotics, just in case. The temperature only lasted a couple of hours and have been fine since, dooh! Weds blood count: whites still zero, as expected. Docs recon this should be the worse week, but may not rise for a week or more.
So Thursday, fever calmed down, so back to old routine - up n down the stairs a few times, sleep, same old waiting game. However all was not the same, I did not realise until today (Friday) as i forgot to ask the docs, but bizarrely my white cells have started to recover! The total white count was up to 0.8 and neuts were 0.5. I was told this unexpected news on the ward round today and it is just brilliant. As if it continues, which we shall find out from the next blood test in the morning, it means two things: stage three of my therapy could possibly start by the end of next week, and, I could get another home pass!
Oh yes the other main thing I've been up to this week is trying to eat as much as possible! To anyone in a normal situation this must sound stupidly easy, but gaining weight after losing 16 pound in 12 days is proving to be harder than I expected. I think I have it cracked now, but it is a shame I am stuffing down anything (mainly hospital canteen provided) to put on weight and not even tasting it (my taste buds are very much dulled, with no salt whatsoever!). And yes those NHS sprouts still keep coming up high on the leader board of nice "tastes"!
So tomorrow hoping for an end to the antibiotics, and a very good blood test :)
Sunday 25 January 2009
bahh! end of home time
Just got the inevitable news. My white cells neutraphils are down again so I have to go back in to the ward tonight. Its a huge dfisappointment as it is so much more relaxing recovering at home, but thats how it goes I guess. This will now be until there is a recovery later in this cycle, then maybe I get a day or two before round three.
Anyway have had a great weekend. However I will have to cancel my supersize-me raids on burger king I was planning to get my weight back up!
Martin
Anyway have had a great weekend. However I will have to cancel my supersize-me raids on burger king I was planning to get my weight back up!
Martin
On shore leave!
Yes! I have been let out again! Based on good behaviour of my blood counts.
Was let out friday afternoon, and am bck in again this morning to have my blood counts checked. Feeling pretty charged up, so fingers crossed bloods will still still be "up", in which case I should be allowed back home for another day or two.
Being home is fantastic! Trust me, never take it for granted.
Ok better go and get tested.
Martin
Was let out friday afternoon, and am bck in again this morning to have my blood counts checked. Feeling pretty charged up, so fingers crossed bloods will still still be "up", in which case I should be allowed back home for another day or two.
Being home is fantastic! Trust me, never take it for granted.
Ok better go and get tested.
Martin
Wednesday 21 January 2009
Well done Obama, poor old McMurphy
Well it took an extra day but I finished the film, but it was as brilliant and sad as ever. I am very glad to say there are no equivalences here of the evil ward nurse. I'd forgotten how she steered his whole demise. Ignoring me there patients here probably don't relate wither! The sleepers kicked in nicely just as it ended. So great nights sleep, 40 mins on bike this morning so well energised today. Even managed to get my Dad's sorted on a new email back in the village, so hes cuffed to I think.
My bloods are still hanging in there, unlike my beard falling out like pine needles after Xmas!!!! (so theres the answer to that one, if you were following an earlier experiment I was running on myself!). So right now, feeling strong, and going to hold onto that ready for whatever is round the next corner.
cheers Martin.
My bloods are still hanging in there, unlike my beard falling out like pine needles after Xmas!!!! (so theres the answer to that one, if you were following an earlier experiment I was running on myself!). So right now, feeling strong, and going to hold onto that ready for whatever is round the next corner.
cheers Martin.
Monday 19 January 2009
one flew over the cuckoo's nest - I hope!
Ok this is going to be brief cos I don't seem to have any chill time at the moment! I am about to re watch after many many years "One flew over the cuckoos nest (1975)". It seems like it will be quite appropriate to my current surroundings. After 6 weeks it will only be the 2nd film I've watched just cos there never seems time!
So sunday - flu symptoms much better. Very busy chemo like Saturday but good day in general. On exercise bike, bath, visits, food (hmm), calls, emails.
Monday, thanks again to the power of sleeping tabs, another great sleep despite the chemo at 12;30 3:30 bloods at 6 and having to get up 4 times to pee. Sleeping pills are good for making you just not properly wake up, handy! Morning, bike, bath, doc visit (all good), massage for back - excellent, new dressing on the Hickman line, at last it is feeling more healthy, a big relief. Then anoon visits more great phone calls, emails this and now Cuckoo time (question is what time to take sleeping pill). Time it right and i wont get worked up by the injustice of the ending as i usually do!!
Night all
Martin
So sunday - flu symptoms much better. Very busy chemo like Saturday but good day in general. On exercise bike, bath, visits, food (hmm), calls, emails.
Monday, thanks again to the power of sleeping tabs, another great sleep despite the chemo at 12;30 3:30 bloods at 6 and having to get up 4 times to pee. Sleeping pills are good for making you just not properly wake up, handy! Morning, bike, bath, doc visit (all good), massage for back - excellent, new dressing on the Hickman line, at last it is feeling more healthy, a big relief. Then anoon visits more great phone calls, emails this and now Cuckoo time (question is what time to take sleeping pill). Time it right and i wont get worked up by the injustice of the ending as i usually do!!
Night all
Martin
Saturday 17 January 2009
Instant man flu, just add water....
Friday. Back at the ward 9:30 and strangely enthusiastic to crack into my next treatment. Wasn't to be disappointed as it started two hours later. My enthusiasm dwindled as this nasty piece of chemo rapidly irritated my nose and eyes and generally bought on serious (man) flu like symptoms. I think though we are doomed as blokes that any flu or cold will be scalded "man flu" and never taken serious by the fairer half!
Anyway, if any of you want instant access to man flu, this IV packet was very effective!
Treatment lasted about 5 hours, in 30 min slots, as vital signs needed constant supervision. Apart from the flu unpleasantness all seemed to go to plan.
This session is very different to the first, a new set of artillery. Heavier and faster. The chemo is over only 7 days, but is a larger total dosage than in the first session. For instance, one drug i had 2x 70mg of in round one, I now have 4x 3500mg this time!!! (erm thats 100 times, ulp!)
Saturday. Great night sleep, with a little help from a pill (!). And mostly the flu symptoms have passed. That was weird having fake flu! No less than 5 treatments planned for today. Its now 11 pm and we are through 6 hours of them with 4 hours to go. All in all theres nothing like chemo to keep you occupied.
I think I am and must be in good spirits today, as I've just penned a letter to the head of catering! It is requesting action on a whole series of dodgy and I'd have thought unacceptable food hygene incidents. Which is even more frustrating on the grounds that my family are not allowed to bring home cooked food in which would be prepared with far more care!
Heres hoping the magic sleepy pill does its trick and I barely notice the nights activities!
see you tomorrow!
Martin
Anyway, if any of you want instant access to man flu, this IV packet was very effective!
Treatment lasted about 5 hours, in 30 min slots, as vital signs needed constant supervision. Apart from the flu unpleasantness all seemed to go to plan.
This session is very different to the first, a new set of artillery. Heavier and faster. The chemo is over only 7 days, but is a larger total dosage than in the first session. For instance, one drug i had 2x 70mg of in round one, I now have 4x 3500mg this time!!! (erm thats 100 times, ulp!)
Saturday. Great night sleep, with a little help from a pill (!). And mostly the flu symptoms have passed. That was weird having fake flu! No less than 5 treatments planned for today. Its now 11 pm and we are through 6 hours of them with 4 hours to go. All in all theres nothing like chemo to keep you occupied.
I think I am and must be in good spirits today, as I've just penned a letter to the head of catering! It is requesting action on a whole series of dodgy and I'd have thought unacceptable food hygene incidents. Which is even more frustrating on the grounds that my family are not allowed to bring home cooked food in which would be prepared with far more care!
Heres hoping the magic sleepy pill does its trick and I barely notice the nights activities!
see you tomorrow!
Martin
Thursday 15 January 2009
Home for R&R
Hi everyone!
I am home at last. I wasnt sure if it would feel wierd after all that has happened, but no chance it is great!
Having heaps of wonderful home cooked food which is good as i lost over a stone in the last 2 weeks. But the only disappointment has been discovering that I can not taste wine at all! Tastes of raw alcohol! Still if my taste buds remain like this i will be much cheaper! Beer is not too bad.
Yesterday was up at dawn walking round t
he village and going to the beach with my tea. Buttons followed me, he was very very funny. As you can see he followed me to the sea wall and we studied the waves (or was it dogs and seagulls) together!
I wanted to go surfing as the waves looked great. But that idea I banned because of the Hickman line into my chest. Lucky decision I think as am now aware I'd have have run out of energy in my first tumble! All the enthusiasm but Nae stamina!
So its great to be home, drink tea on the beach, and generally chill. It is so
quiet compared to hospital at night. Particularly nice to be away fromt he constant hum from the patient line machine. I wonder if it might accidentally "fall" off the wall.....
My mouth still improving but not better. same down below. Well back to "chemo college" tommorrow. So no time to hang about here!
Martin
I am home at last. I wasnt sure if it would feel wierd after all that has happened, but no chance it is great!
Having heaps of wonderful home cooked food which is good as i lost over a stone in the last 2 weeks. But the only disappointment has been discovering that I can not taste wine at all! Tastes of raw alcohol! Still if my taste buds remain like this i will be much cheaper! Beer is not too bad.
Yesterday was up at dawn walking round t
he village and going to the beach with my tea. Buttons followed me, he was very very funny. As you can see he followed me to the sea wall and we studied the waves (or was it dogs and seagulls) together!I wanted to go surfing as the waves looked great. But that idea I banned because of the Hickman line into my chest. Lucky decision I think as am now aware I'd have have run out of energy in my first tumble! All the enthusiasm but Nae stamina!
So its great to be home, drink tea on the beach, and generally chill. It is so
quiet compared to hospital at night. Particularly nice to be away fromt he constant hum from the patient line machine. I wonder if it might accidentally "fall" off the wall.....My mouth still improving but not better. same down below. Well back to "chemo college" tommorrow. So no time to hang about here!
Martin
Tuesday 13 January 2009
I'm going home!
Tuesday, Day 26. Mouth is healing now to the extent I can manage to eat pineaple, just. I am told it will speed recovery of the mouth. It better, as it hurts!
Hoping the docs today will answer the Q about home and next treatment phase. I am thinking the next treatment will start at the latest on monday, but maybe as soon as the end of this week. The gut infection seems to be responding to the stopping of the other antibiotics. So I may be well enough to get released today or soon for a brief break.
I should explain to you all where I am at with treatment. The return of the neutraphils, my white cell army I call them, is very important. This is because it restores the immune system, heals damaged tissue, and shows that the good white cell stem cells were not destroyed by the cancer or chemo. But I am not out of the woods, by any means yet, the Leukemia will almost certainly still be there in the bones, but now in reduced numbers. That is the reason for the 4 phases of treatment. The next phase is a chemo combination known as IVAC-R (the first phase was CODOXM, Theres some papers on the web it you are so inclined: Mead 2002 ; Mead 2008)
Update: Just saw the docs, OMG I am in shock! I was right, treatment will likely start on monday and beter than that ......I am going home today!!!
Hope I can remember how the outside world works. You need money right? And you dont have to eat hospital food. Oh yeah sounds real good :)))
Adios and A luego ward 16. See you Sunday.
Hoping the docs today will answer the Q about home and next treatment phase. I am thinking the next treatment will start at the latest on monday, but maybe as soon as the end of this week. The gut infection seems to be responding to the stopping of the other antibiotics. So I may be well enough to get released today or soon for a brief break.
I should explain to you all where I am at with treatment. The return of the neutraphils, my white cell army I call them, is very important. This is because it restores the immune system, heals damaged tissue, and shows that the good white cell stem cells were not destroyed by the cancer or chemo. But I am not out of the woods, by any means yet, the Leukemia will almost certainly still be there in the bones, but now in reduced numbers. That is the reason for the 4 phases of treatment. The next phase is a chemo combination known as IVAC-R (the first phase was CODOXM, Theres some papers on the web it you are so inclined: Mead 2002 ; Mead 2008)
Update: Just saw the docs, OMG I am in shock! I was right, treatment will likely start on monday and beter than that ......I am going home today!!!
Hope I can remember how the outside world works. You need money right? And you dont have to eat hospital food. Oh yeah sounds real good :)))
Adios and A luego ward 16. See you Sunday.
Monday 12 January 2009
healing time
Monday, Day 25 of treatment and 28th consecutive day in hospital. Actually I have got so used to it I don't mind not getting time home, as I said before I seem to be totally institutionalised! Not a bad day definitely improving. But the gut infection is frustrating. The docs said I would have been allowed home today if it were not for this infection. So they have taken me off the other antibiotics, 3 of them, from today. This should speed recovery as they would have been destroying the guts healthy bugs. Oh well it will pass, I certainly am ...... roughly every 90 minutes! As a form of gross amusement, I noted a pea passing through me today in 5.5 hours - is that a record i wonder!
Sunday 11 January 2009
My Email Contact details
By the way, its being great those of you who have left messages and joined as followers.
However, these blog systems don't seem to offer any cool way to reply to you, other than me leaving a comment on my own blog! And certainly n way of you or I sending a private message. Let me know if you can access my gmail email address, but I doubt you can as I can not see yours.
So here's a way.
I have just set up two email addresses that you can use for this blog, they are new so that I can switch them off later if they get badly spammed. They will forward to my normal email so I can receive personal messages from you that way quickly.
martinsblog&&fittie.eclipse.co.uk
morethananarmfull&&fittie.eclipse.co.uk
please note: replace "&&" with a single "@"
As well as chatting I can then send you contact details if you want on phone, email, Skype, or visit.
However, these blog systems don't seem to offer any cool way to reply to you, other than me leaving a comment on my own blog! And certainly n way of you or I sending a private message. Let me know if you can access my gmail email address, but I doubt you can as I can not see yours.
So here's a way.
I have just set up two email addresses that you can use for this blog, they are new so that I can switch them off later if they get badly spammed. They will forward to my normal email so I can receive personal messages from you that way quickly.
martinsblog&&fittie.eclipse.co.uk
morethananarmfull&&fittie.eclipse.co.uk
please note: replace "&&" with a single "@"
As well as chatting I can then send you contact details if you want on phone, email, Skype, or visit.
Wind wolf army
Hi Folks,
At last things are looking up! While Thursday eve was a bit of a low as i was moved into an isolation room after they discovered bugs in me, since Friday there has been signs of change for the better. Definitely some healing of my mouth had started and the weird lesions on my legs stared to shrink. But the most exciting thing was at lunch time one of the docs came rushing in with the days blood test result. "Your neutraphils have come back, 0.6! Well considering they have been 0.0 since i started treatment and for the last 9 days of recovery after chemo, this was almost unbelievable news! In fact, it was news i was cautious about. After all, it was only one result, and although i could tell i was improving, what if the next one came back zero again. Best to not get too excited. Yet. The neutraphils returning is so important, i was paranoid my stem cells that produce these nuetralphils (white cells) could have been knocked out by the leukemia overcrowding my bone marrow and then by the chemo. So maybe were gone - that is very unlikely but you worry, trust me.
So yesterday I was not scheduled a blood test, I was disappointed, I did not think I could wait two more days. I asked the docs on their round if one could be squeezed in and he said actually it was not a bad idea to take one, so I had another routine test yesterday. As the test was mid day, the result was not available until this morning. So yesterday was another day of waiting, but again more healing in my mouth and leg lesions so all good signs my army was back.
This morning feeling pretty good, after a shower at least as i seem to sleep with raging sweats - often change me Jammie's mid way through the night. Its 10:30an and my docs just came round. Now just to explain, it is important that the neutraphils rise above 1.o before the next stage can be considered. for a healthy adult I am told the range is 1.0 to 8 ish. So anyway, the docs were grinning, as the lovely neutraphils have now gone up again, 0.6 had been a huge jump the day before, but i was not expecting this: "They are now 4.5!!!!!!" Woo hoo, Goooooaaaaaaaaaala! Back of the net!
I can't help thinking the full moon and this huge weather storm, which is now battering the NE coast, is aat least partly responsible for such a speedy blood recovery. I always get hyper when they both coincide, Michelle call's me a wind-wolf!!
On that subject, boys, I hope Cruden Bay is epic today, you should get some epic down the line waves. Rip it up!
That's me well happy today. Yup I am still sore, but the army is back, and now running round fixing the last 3 weeks of carnage :)
cheers,
Martin
End of day update: Todays full blood report was Hb 110, platelets 217 ( I came in with 20), white total 5.0, neutraphils 3.7. So the full bloods are looking really good at this stage, and although the neutraphils may have ebbed a little, this is probably because I have just come of their growth stimulus drug, so 3.7 is still an amazing amount. The only down side at the moment, and very frustrating it is too, is that i have picked up a nasty bacterial gut infection which now needs to be dealt with, everything else is improving daily.
At last things are looking up! While Thursday eve was a bit of a low as i was moved into an isolation room after they discovered bugs in me, since Friday there has been signs of change for the better. Definitely some healing of my mouth had started and the weird lesions on my legs stared to shrink. But the most exciting thing was at lunch time one of the docs came rushing in with the days blood test result. "Your neutraphils have come back, 0.6! Well considering they have been 0.0 since i started treatment and for the last 9 days of recovery after chemo, this was almost unbelievable news! In fact, it was news i was cautious about. After all, it was only one result, and although i could tell i was improving, what if the next one came back zero again. Best to not get too excited. Yet. The neutraphils returning is so important, i was paranoid my stem cells that produce these nuetralphils (white cells) could have been knocked out by the leukemia overcrowding my bone marrow and then by the chemo. So maybe were gone - that is very unlikely but you worry, trust me.
So yesterday I was not scheduled a blood test, I was disappointed, I did not think I could wait two more days. I asked the docs on their round if one could be squeezed in and he said actually it was not a bad idea to take one, so I had another routine test yesterday. As the test was mid day, the result was not available until this morning. So yesterday was another day of waiting, but again more healing in my mouth and leg lesions so all good signs my army was back.
This morning feeling pretty good, after a shower at least as i seem to sleep with raging sweats - often change me Jammie's mid way through the night. Its 10:30an and my docs just came round. Now just to explain, it is important that the neutraphils rise above 1.o before the next stage can be considered. for a healthy adult I am told the range is 1.0 to 8 ish. So anyway, the docs were grinning, as the lovely neutraphils have now gone up again, 0.6 had been a huge jump the day before, but i was not expecting this: "They are now 4.5!!!!!!" Woo hoo, Goooooaaaaaaaaaala! Back of the net!
I can't help thinking the full moon and this huge weather storm, which is now battering the NE coast, is aat least partly responsible for such a speedy blood recovery. I always get hyper when they both coincide, Michelle call's me a wind-wolf!!
On that subject, boys, I hope Cruden Bay is epic today, you should get some epic down the line waves. Rip it up!
That's me well happy today. Yup I am still sore, but the army is back, and now running round fixing the last 3 weeks of carnage :)
cheers,
Martin
End of day update: Todays full blood report was Hb 110, platelets 217 ( I came in with 20), white total 5.0, neutraphils 3.7. So the full bloods are looking really good at this stage, and although the neutraphils may have ebbed a little, this is probably because I have just come of their growth stimulus drug, so 3.7 is still an amazing amount. The only down side at the moment, and very frustrating it is too, is that i have picked up a nasty bacterial gut infection which now needs to be dealt with, everything else is improving daily.
Saturday 10 January 2009
Ground Hog day
wednesday and thursday
Writing this briefly as I don't have much inclination at the moment to write - sorry!
Theres not much to report, each day is roughly the same, just a matter of holding on and waiting for improvement. Meal times are about just trying to get any energy past my macerated mouth. I have been on sickly fluids, milk based drinks, ice creams, custard, jelly for days now, since New year. This suddenly drives me crazy. I need normal food!! Given the condition of my mouth, with open wounds from the mucitis, it is a perfect breeding ground for infection, so another major part of my day is keeping my mouth clean with various gargles and medicines. My guts too are very painful, lets just put it this way, especially when they are used! So all the normally simple jobs (ha ha) are hard work and painful at the moment.
On Wednesday I decide I need real food, I have in front of me mash and chicken in a spicy sweet sour sauce. Maybe... I end up washing the sauce (which is pure acid to my mouth) of the chicken in the soup (!), and then mashing it to a pulp and adding to the mash. Then I place bits on the back of my tongue and swallow whole, no chewing! This seems to work so carry on for ages until the chicken is eaten. Feeling pretty pleased with myself on how many sweet drinks i have just saved myself from having!
A highlight of the day is the blood test result, but unfortunately each day the important result, the neutraphils (the really useful white cells which defend your bod) has been the same: zero, nada, not a single one.
So yeah the last 7 days have been like my own very bad Ground Hog day. Frustrating for sure, and not pleasant, but I am sure things will improve soon!
Writing this briefly as I don't have much inclination at the moment to write - sorry!
Theres not much to report, each day is roughly the same, just a matter of holding on and waiting for improvement. Meal times are about just trying to get any energy past my macerated mouth. I have been on sickly fluids, milk based drinks, ice creams, custard, jelly for days now, since New year. This suddenly drives me crazy. I need normal food!! Given the condition of my mouth, with open wounds from the mucitis, it is a perfect breeding ground for infection, so another major part of my day is keeping my mouth clean with various gargles and medicines. My guts too are very painful, lets just put it this way, especially when they are used! So all the normally simple jobs (ha ha) are hard work and painful at the moment.
On Wednesday I decide I need real food, I have in front of me mash and chicken in a spicy sweet sour sauce. Maybe... I end up washing the sauce (which is pure acid to my mouth) of the chicken in the soup (!), and then mashing it to a pulp and adding to the mash. Then I place bits on the back of my tongue and swallow whole, no chewing! This seems to work so carry on for ages until the chicken is eaten. Feeling pretty pleased with myself on how many sweet drinks i have just saved myself from having!
A highlight of the day is the blood test result, but unfortunately each day the important result, the neutraphils (the really useful white cells which defend your bod) has been the same: zero, nada, not a single one.
So yeah the last 7 days have been like my own very bad Ground Hog day. Frustrating for sure, and not pleasant, but I am sure things will improve soon!
Tuesday 6 January 2009
day 19
Hi friends,
Checking in breifly. Another sucessful but painful night, in that i slept plenty but the mucitis hurt a lot. Now its a new dawn new day. Interesting i've now been in this place for 3 weeks exactly, and have had 19 days of actual treatment. So heres hoping for better blood results today or soon :)
Martin
Checking in breifly. Another sucessful but painful night, in that i slept plenty but the mucitis hurt a lot. Now its a new dawn new day. Interesting i've now been in this place for 3 weeks exactly, and have had 19 days of actual treatment. So heres hoping for better blood results today or soon :)
Martin
Sunday 4 January 2009
saturday sunday monday
(Monday afternoon) Just a quick post. Still pretty washed out again today. Yesterdays counts: white cells sill zero.
But the doc said i have one of the best cases of oral mucitis (knackered lining of the mouth) hes seen in a long time - which was nice. He got the student to have a good look and one of them said "say ahh", i was so tempted to reply "why, has your dog died?" [tim vine].
Anyway nice to be a help to the medical profession!
Sleeping well at the moment, storing up all my energy to fight the mucitis until the repair starts.
hard work but my spirits are up. Bye for now.
But the doc said i have one of the best cases of oral mucitis (knackered lining of the mouth) hes seen in a long time - which was nice. He got the student to have a good look and one of them said "say ahh", i was so tempted to reply "why, has your dog died?" [tim vine].
Anyway nice to be a help to the medical profession!
Sleeping well at the moment, storing up all my energy to fight the mucitis until the repair starts.
hard work but my spirits are up. Bye for now.
Friday 2 January 2009
side effects
It is all very well reading about drug side effects on the side of a bottle, or even having them carefully explained to you by medical staff, but it really doesn't seem to help prepare for when they hit.
Theres no denying it, the last few days have been really tough. Earlier in the week I started to get chest pain, which was attributed to be inflammation of the old ticker probably caused by one of the drugs on day 1. Not very nice, but only moderately uncomfortable so I'd been coping with that.
The yellow peril, Lemonchello, Methotrexate, finished its 24 hour poisoning campaign on Tuesday. From then it was a day of recuperative treatments to lessen its side effects. So all that finished weds eve. And i guess it felt quite weird for the first time in a week i was not connected to any pipes. Seemed to me like one of the eery silences they talked about between the lines in the Great War, a superfical calm.
There had been signs on Tuesday night that my mouth was suffering. But by NYE Weds night it was bad, mouth lining definitely breaking up. And also felt like the stomach and intestinal ones were going too. An uncomfortable night with no sleep. Woke up to find i had skin rashes, sore eyes as well (but these are really not so bad - cheap tatoos).
So last 3 days. yes they've been sore. Really sore. Hogmanay was the longest day as I had managed no sleep previously. Since then I've had sleeping pills, and slept, that is a huge bonus. I am convinced you can trade earned sleep tokens for the ability to cope with pain. Good sleep is a key to this.
I am still not out of the woods for the nastier aspects of this stage one. The chemo of stage one is over and we are waiting for my white cells to fight back. Whichever way, the nursing and medical support has been amazing and have given me the confidence to cope with what the chemo throws at me. Tomorrows a brand new day and hopefully a whole load of angry white blood cells are going to wake up then to and start on some happy havoc.
Theres no denying it, the last few days have been really tough. Earlier in the week I started to get chest pain, which was attributed to be inflammation of the old ticker probably caused by one of the drugs on day 1. Not very nice, but only moderately uncomfortable so I'd been coping with that.
The yellow peril, Lemonchello, Methotrexate, finished its 24 hour poisoning campaign on Tuesday. From then it was a day of recuperative treatments to lessen its side effects. So all that finished weds eve. And i guess it felt quite weird for the first time in a week i was not connected to any pipes. Seemed to me like one of the eery silences they talked about between the lines in the Great War, a superfical calm.
There had been signs on Tuesday night that my mouth was suffering. But by NYE Weds night it was bad, mouth lining definitely breaking up. And also felt like the stomach and intestinal ones were going too. An uncomfortable night with no sleep. Woke up to find i had skin rashes, sore eyes as well (but these are really not so bad - cheap tatoos).
So last 3 days. yes they've been sore. Really sore. Hogmanay was the longest day as I had managed no sleep previously. Since then I've had sleeping pills, and slept, that is a huge bonus. I am convinced you can trade earned sleep tokens for the ability to cope with pain. Good sleep is a key to this.
I am still not out of the woods for the nastier aspects of this stage one. The chemo of stage one is over and we are waiting for my white cells to fight back. Whichever way, the nursing and medical support has been amazing and have given me the confidence to cope with what the chemo throws at me. Tomorrows a brand new day and hopefully a whole load of angry white blood cells are going to wake up then to and start on some happy havoc.
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